A PRACTICAL PARENT’S GUIDE TO PDA AND AUTISM

REDUCE MELTDOWNS, NAVIGATE DIAGNOSIS & ACCESS SCHOOL, INSURANCE AND FINANCIAL RESOURCES TO TRANSFORM YOUR LIFE NOW

MICHELLE DAVIS

Copyright © 2025 by Michelle Davis. All rights reserved.

The information in this book is not intended to replace the advice of your child’s pediatrician or other trained healthcare professionals. For any medical concerns, consult a healthcare professional. Consult with a physician before giving medications, pursuing any treatment, or changing your child’s diet.

For insurance, disability benefits, trusts, or any other financial or legal matters, it is recommended you consult a licensed professional. The information in this book does not constitute legal advice.

All product names, logos, and brands are property of their respective owners. Use of these names does not imply endorsement.

We changed the names and identifying details of individuals within this publication to protect privacy. Any resemblance to actual persons, living or deceased, is purely coincidental and unintentional.

Published in the United States by BrightPath Publishing.

Originally published in paperback and hardcover in the United States by BrightPath Publishing in 2025.

Printed in the United States of America on acid-free paper.

BrightPathPublishing.com

TABLE OF CONTENTS

Author's Note

Introduction

1. Suspecting PDA—From Initial Concerns to Diagnosis

Recognizing PDA and Receiving a Medical Diagnosis

Why a Diagnosis Matters

Steps to Take if You Suspect PDA

Real-Life Examples

Handling Your Feelings After a Diagnosis

2. Building a Medical Support System for Children with PDA

From Pediatric Care to Comprehensive Clinical Support

Exploring Integrative and Alternative Care Approaches

Challenges Related to PDA Can Improve with Support

Accepting and Embracing PDA Within the Family

3. Exploring Supportive Therapy

Accessing Therapeutic Resources Post-Diagnosis

Types of Therapy Options

Therapy Must Fit Your Child and Family

Collaboration on Goals with Therapist

Practical Note on Applied Behavioral Analysis (ABA)

Adapting Therapies to Address the Needs of Children with PDA

Resources for Professionals

4. Navigating Financial Supports: Medicaid, Supplemental Social Security Income (SSI), and Financial Assistance and Planning Options

Medicaid

Examples of Services Covered by Medicaid

Additional Benefits of Using Services Covered by Medicaid

Medicaid Waivers

State Grants and Nonprofit Assistance

Supplemental Security Income for Children with Disabilities (SSI)

Monthly Supplemental Security Income (SSI) Payment for Minors

How Families Might Use SSI Income for Children with Autism and a PDA Profile

Special Needs Trusts

5. Creating Supportive School Environments: Navigating Individualized Education Programs (IEP) and 504 Plans

Understanding IEPs and 504 Plans

Individual Education Plan (IEP)

504 Plan

Components of IEP and 504 Plans

Guiding the IEP and 504 Plan Process

Low-Demand Approaches with Social Stories and Visual Supports

Handling Group Activities

School End-of-Day Transition

When Schools Use Restraints or Contact Law Enforcement

Early Intervention Services—Children Under Age Three

Effective Advocacy Techniques

6. Embracing Homeschooling and Unschooling—A New Educational Journey for Your PDA Child

Why Traditional Schooling Can Be Challenging for Children with PDA

Rethinking Education

Definitions, Benefits, and Blended Approaches

Blended Learning for Children with PDA

The Role of Electronic Devices in Self-Regulation and Learning

Self-Paced Online Learning Options

How to Incorporate Self-Paced Online Learning into Daily Life

Activities During Homeschooling and Unschooling

Designing a Learning Approach with Self-Paced Programs and Unschooling

Online Learning and Daily Life—It’s Not Always Rainbows and Skittles

A Look at Charter Schools: Flexibility and Structure in One

Building a Network and Accessing Key Resources for Homeschooling and Charter School Success

Preparing for Future School Reentry and College While Homeschooling or Unschooling

Enriching Socialization Through Extracurricular Activities

Incorporating Chores into Homeschooling and Daily Routines

How to Help Intellectually Gifted Children with PDA Thrive—Structure, Logic, and Control

Bridging Ideal Education with Everyday Life

7. Understanding Triggers and Preventing Outbursts

Understanding Anxiety in Children with PDA

Identifying Common Triggers in Children with PDA

Proactive Approaches

The PDA Demand Paradox

8. Reducing Anxiety Through Predictable Routines

The Role of Routines

Preparing for Transitions to Reduce Anxiety

Encouraging the Routine with Positive Feedback

9. Managing and Preventing Meltdowns

Understanding Tantrums versus Meltdowns

Mood's Role in Tolerance and Meltdowns

Centering Yourself During a Meltdown

Approaches for De-Escalation

10. Fostering Emotional Resilience

Understanding Emotional Resilience

Emotional Resilience Starts with You

Introducing Gentle Coping Methods

Encouraging Positive Self-Talk

Modeling Resilient Behavior

Building Emotional Resilience in the Family

Looking Ahead

11. Supporting Social Interactions

Understanding Social Challenges

Preparing for Social Situations

Encouraging Structured Playdates

Practicing Social Skills at Home

Providing Gentle Encouragement

Enhancing Social Comprehension

Navigating Intense Fixations on Others

Addressing Social and Sexual Vulnerability

Handling Public Spaces

Discussing PDA in Public Spaces

Managing Expectations and Practicing Self-Compassion

12. Nurturing Self-Care for Parents and Caregivers

Embracing Self-Care for Parents and Caregivers

Noticing the Signs of Burnout

Achieving Inner Calm

Responding to Unacknowledged Efforts

Individual and Couples Therapy

Building Your Community

Therapy for Siblings

Personal Support Workers (PSWs)

Embracing Self-Care as a Family

Connecting with Understanding Communities

13. Strengthening Sibling Bonds in a PDA Family

Explaining PDA to Siblings

Encouraging Connection

Balancing Emotions Within the Family

Family Activities that Foster Connection

What to Do When the Sibling With PDA 'Ruins' Everything

14. Encouraging Independence and Building Social Skills

Understanding the Challenges of Independence

Strategies to Encourage Independence

Building Communication Skills

Social Stories to Teach Communication Skills

The Incredible Strengths and Contributions of Children with PDA

Conclusion

Support Guide for Individuals Residing in the United States

A Note on International Resources

References

To my girls, whose unique minds inspire me every day, and to my husband, whose unwavering dedication makes all things possible.

This journey is for us to share.

Love, Mom

“The beauty of the brain lies in its differences; it’s in those differences that we find strength and understanding.”

UNKNOWN

AUTHOR'S NOTE

Have you ever sprinted out of a play area, your child wailing and other children in tears, all because your child refused to clean up with their friends? Or perhaps you've rushed out of a soccer game on a freezing February afternoon, because in a moment of sheer explosiveness, your child stripped off all their clothes, leaving every parent staring in stunned silence. If any of these examples strikes a chord, you're not alone. This book is for you—a parent facing the challenges of raising a neurodivergent child. The sleepless nights, endless appointments, and well-meaning but hurtful comments are things many of us understand. You are part of a community of parents who have walked a similar road.

Like many of you, I’ve had to rush out of those overwhelming moments too—and none of it is a distant memory; it’s part of my own real-life journey as a fellow parent of a neurodivergent child. I recall a time long ago when I was walking through the city streets. My firstborn’s cries echoing in my ears, constantly reminded me of my exhaustion and isolation. Strapped to me in her baby carrier, she seemed to scream for help—and I was powerless to answer her pleas. Nothing worked, no matter what I tried. These signs marked a sharp shift from the path I envisioned for my child and myself. Although I have professional experience in healthcare and government affairs, fields known for intricate systems—nothing could have prepared me for the emotional strain of raising a child with unique developmental needs.

You might also have experienced the sting of disappointment. Watching other children effortlessly reach milestones while your child struggles with tasks others take for granted. Perhaps you’ve grappled with the guilt of frustration, or anxiety about what the future holds. You've probably tried everything, only to find that progress is slow, and setbacks are frequent. The isolation can be overwhelming, making you wonder if anyone else could understand what you're going through.

I wrote this book because I know what it’s like to fight unseen battles. The pain of canceled plans, the anxiety of public outings, and the constant chase for unattainable wins are things I understand. But I also know the fierce love that keeps you going, the minor victories that seem monumental, and the unbreakable bond that forms when you see your child for who they are.

This isn’t just another book full of theories and jargon. It’s a lifeline—a collection of hard-won examples, effective approaches and heartfelt stories from someone who’s been through this journey and found a route forward.

This is the guide I wished I had when I felt lost and alone. 

If you’re weary and seeking empathy and help, this book is for you. Together, we’ll navigate the complexities of raising a child with PDA and autism, discovering not only coping strategies but also periods of joy and connection you may not have imagined possible.

Turn the page, and let’s move forward together, finding strength and hope in every step.

Michelle

INTRODUCTION

Welcome to A Practical Parent’s Guide to PDA and Autism. You are likely here because you are seeking help for your child with PDA and autism—or a child you suspect might have it—thrive. You might find yourself overwhelmed, sinking into frustration, isolation, and a deep sense of hopelessness, questioning your ability to cope. But you’re not alone. This book is here to offer you hope and delivers compassionate and actionable advice to direct you. Together, we’ll work through each step, transforming obstacles into opportunities for learning and building deeper connections.

I know firsthand the struggle when traditional parenting methods don’t work. You’ve likely tried various methods, read countless books, and consulted experts, only to find that nothing quite fits. A different approach is needed when parenting a child with PDA—one that acknowledges behaviors while addressing the underlying anxiety driving those actions.

With or without an autism diagnosis or PDA symptoms, this book can be a valuable aid for your family and child. Within these pages, we focus on understanding children’s distress, promoting flexibility and autonomy, and fostering empathy—which can benefit all children, regardless of their neurodiversity.

Before we continue, it’s important to reinforce that this book should not replace professional medical advice. While it contains tools and information, I’m not a doctor. What you’ll find here are insights drawn from real-life stories of families, including mine. I hope this book becomes a valued resource for your family. I encourage you to continue advocating for your child by consulting healthcare professionals who can supply diagnoses and specialized care.

Reading Guide PSA

Each family’s journey with PDA and autism is different. Think of this book as a toolkit rather than a cover-to-cover read. With the table of contents, you can find the information you need most by accessing the relevant sections. Raising a child can bring unexpected challenges, and by jumping to the parts of the book that resonate with your current priorities, you’ll find the help you’re looking for when you need it most. This enables you to revisit specific chapters as your child grows and different focuses emerge. Just as no two days are the same, the needs of your family and child will evolve, and this book can remain a resource for your changing needs.

Understanding PDA

We’ll examine more closely the pattern of behaviors beneath the surface, often misunderstood as defiance but actually rooted in deep anxiety. Awareness of these behaviors can bring a sense of relief, knowing that it’s not about disobedience or stubbornness. Children with PDA have intense discomfort when faced with demands, leading to behaviors that may appear oppositional or controlling. It’s important to understand that these actions aren’t intentional attempts to upset others but are survival mechanisms to cope with life.

Imagine a world where answering a simple question seems impossible. Simple tasks like getting dressed, smiling for a photo, replying “here” at school, or joining the family for a meal can trigger intense fear. This fear manifests as avoidance, intense reactions, or irrational outbursts. It’s not that these children don’t want to cooperate—it’s that their brain is telling them they can’t. 

Here’s an example from our home—after hours of screaming and frustration during an intense meltdown over getting dressed, my daughter might finally ask, “Mom, what should I wear?” In that moment, even the simple act of choosing what to wear was impossible, triggering a fight-or-flight response. On other days, during a similar meltdown, she may never ask a question at all. Instead, she might lose her words, communicating only through grunts or repeatedly saying ‘oye’ for the rest of the day or beyond. This unpredictability is part of the struggle, as her ability to cope can vary. If you’ve encountered similar situations, I bet you know how overwhelming this unpredictability can feel. 

Only by understanding the internal resistance behind responding to everyday requests can you help your child. Traditional parenting techniques, like rewards and consequences, often fail because they don’t address this tension that drives the avoidance. These methods can make matters worse, leading to greater pressure and more intense behaviors. What’s needed is a framework rooted in empathy, flexibility, and a reduction of demands to relieve some stress.

This book might also resonate with you if your child has received a diagnosis of ADHD, or anxiety, or if you suspect they may have these conditions. Children with ADHD and anxiety often show demand-avoidant behaviors similar to those seen in PDA, making the information here valuable across various situations. These children may also have undiagnosed autism with or without a PDA profile. By understanding and applying what’s outlined in this book, you may find new ways to help, regardless of your child’s specific diagnosis.

And if your child doesn’t have a formal diagnosis yet—an early and supportive approach still benefits the entire family.

Expectation Setting

Within these pages, you’ll find realistic and actionable support tailored to fit into the busy lives of parents and caregivers like you. Each chapter delves into specific aspects of raising children with PDA and autism, with compassionate advice you can use now. The goal isn’t to provide a one-size-fits-all solution. Instead, it is a set of options that you can adapt to fit your circumstances. You’ll notice that some things will work better for your family than others, and that’s perfectly fine. The key is to remain flexible, patient, and open to change, adjusting as you discover what works best. 

These concepts are straightforward and encouraging, support for even the most challenging times. One chapter, for instance, focuses on preventing explosive meltdowns by reducing demands. Another chapter details information on accessing financial resources. By sharing meaningful moments, keeping honest conversations flowing, and understanding your child’s feelings, you can strengthen your relationship and build a compassionate foundation for growth.

Emotional Support and Understanding

Let’s be honest: Parenting a child with PDA can be isolating, especially when met with a lack of understanding from others. Well-meaning advice from friends, family, or even professionals can sometimes come across as dismissive or unhelpful. This book honors your adversities, validates your feelings, and presents meaningful guidance to support you with navigating daily life.

Your Circle of Encouragement

As you go through these pages, please remember that you are part of an active community of parents and caregivers also seeking help. Recognize that PDA is still a new and lesser-known profile on the autism spectrum. Countless parents, educators, and professionals dedicate themselves to understanding and assisting children with PDA. 

This book draws heavily on experiences of families as outlined in active online communities. As a parent of a child with PDA myself, I’ve spent countless hours in these groups, listening to parent stories and learning what resonates. This book leans into the conversations happening in those spaces, reflecting on what’s important to you. That’s why the power of community is so vital—being able to commiserate, share, and uplift one another through the highs and lows of parenting.

With many active groups already available, we’ve decided against hosting our own online community. We suggest exploring the wealth of Facebook groups focusing on PDA, autism, ADHD, and parenting neurodivergent children. These groups contain a wealth of stories, practical advice, and encouragement. Membership in these existing communities offers much-needed reassurance and solidarity. I invite you to take part, exchange your experiences and be there for one another through the trials of parenting.

What This Book Is and Isn't

As you read the chapters ahead, set realistic expectations—these pages won’t present a magic cure or quick fix. Instead, they outline guidance and tips that can make a meaningful difference. Raising any child is challenging, and parenting one with PDA brings its own complexities. It’s important to remember that each child with PDA has distinct qualities, just like all children. What works for one child and family may not work for another, and that’s okay. These ideas are adaptable, giving you the freedom to customize them. Progress may come in small steps rather than giant leaps, but each small step is meaningful.

For readers outside the United States, we’ve included appendices to help you access our comprehensive collection of International Resources. You’ll find support across various countries, directing you to approaches that best suit your family, wherever you may be.

In closing, whether your child is neurotypical or neurodivergent—living with autism, PDA, anxiety, ADHD, or other medical conditions—this book can provide encouragement and resources. The road ahead may be uncertain, but with compassion, understanding, and the right tools, you can make a positive difference—not only in their life, but in your own.

CHAPTER 1

SUSPECTING PDA—FROM INITIAL CONCERNS TO DIAGNOSIS

When you first notice that your child’s behavior doesn’t quite match that of their peers—perhaps they’re fiercely resisting even the simplest requests, or their reactions to everyday situations seem too intense—it can seem like you’re standing at the edge of a vast and confusing maze. You might lie awake at night, replaying moments in your head, questioning whether this is just a phase or if there’s something more beneath the surface. The urge to find answers can be both pressing and exhausting, especially when faced with long wait times for professional assessments and a web of conflicting information. In this chapter, we will explore the early signs of PDA and demystify the diagnosis process.

Recognizing PDA and Receiving a Medical Diagnosis

If you believe your child has PDA, getting a formal diagnosis is the first step. A medical diagnosis can unlock access to services to better address their needs. At the time of this book’s publication, the United States does not officially recognize PDA as a distinct diagnosis. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the premier diagnosis tool for mental health conditions, doesn’t list PDA as a separate condition—at least not yet. Mental health professionals often diagnose children with PDA traits with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), or both. Research by Liz O’Nions highlights a strong link between the behavioral profile of PDA and autism, particularly in areas like demand avoidance, anxiety, and social understanding.

The medical and research communities continue to debate whether to recognize Pathological Demand Avoidance (PDA) as part of the autism spectrum or classify it as a distinct condition. While many professionals view PDA as a subtype of autism characterized by extreme anxiety-driven demand avoidance, others believe it requires a different diagnostic framework. Given that the field continues to develop, and more research is underway, A Practical Parent’s Guide to PDA and Autism addresses both PDA and autism together, without delving into the broader scientific discourse. Our goal is to offer practical guidance and support—knowing that as new insights emerge, the medical community may further refine its understanding of these conditions.

Why a Diagnosis Matters

Once you have a formal diagnosis, it can be a relief. Understanding that your child’s behaviors are not just defiance or poor behavior, but a neurological condition, can bring a sense of reassurance. They have a medical condition that influences how they perceive and respond to demands, often leading to intense stress. This tension is hard-wired into their neurological makeup and isn’t something they can overcome through willpower or discipline alone. Your child isn’t intentionally ignoring you—rather, perceived demands overpowered them.

Research links PDA to differences in brain activity, particularly in the areas that influence understanding of social cues, management of anxiety, and control of responses. What might appear to be oppositional behavior is often their way of coping with being overwhelmed. Understanding that these behaviors stem from unease changes our perspective related to support—instead of focusing on compliance, we can prioritize creating conditions that encourage them in feeling safe and understood.

Personal Experience

One of the hardest things for our family has been getting everyone on the same page regarding my daughter’s PDA diagnosis. Many of our relatives find it difficult to understand what PDA means. I often hear statements like, “She just has to learn to listen better,” or “Why can she follow directions sometimes but meltdown over something small later?” These remarks can be upsetting because they miss the actual issue. It’s not that she’s willfully defiant—it’s a neurological difference that shapes how she perceives and reacts to demands. 

These comments are hard to deal with because, on the surface, it might seem like my daughter can follow directions. At times, she’s able to—when she feels secure and calm, or when the question doesn’t heighten her discomfort. But at other times, even a simple request, like asking her to place her plate in the sink after dinner, can seem overwhelming, resulting in a strong emotional outburst. It’s hard for others to grasp that it’s not about picking when to listen. Instead, her brain perceives the question as a threat, and her ability to cope with it depends entirely on how safe she feels at the moment. Once we can all understand that her actions aren’t a choice but her response to being overloaded, we can empathize and help her.

Another family we know is experiencing something similar with their son, who displays extreme avoidance behaviors. His grandparents couldn’t understand why he reacted with panic and anger when asked to do something as simple as getting in the car. The grandparents, after many conversations and learning about PDA, began to approach their grandchild with greater compassion, understanding that his actions were driven by anxiety and fear, not defiance. By modifying their style and using declarative language—such as mentioning, “The car is ready when you are,” instead of issuing commands—they reduced the pressure he felt from request. This shift in communication and adjusting expectations led to noticeable improvements in his behavior.

You may reflect on similar times where well-meaning family members or friends don’t understand. It’s tough when their advice or comments oversimplify what’s happening. It’s important to recognize that their confusion often comes from a lack of awareness, not a lack of care. By helping others understand the nuances of your child’s experience, you can shift conversations from frustration to empathy. 

Steps to Take if You Suspect PDA

Does your child flip into immediate fight-or-flight mode at the slightest perceived loss of control? Do they speak with a surprising level of articulation for their age yet find social cues confusing, cues that come naturally to other kids? If you see these behaviors—constant resistance to everyday tasks and intense anxiety over even small requests—you might find yourself facing a complicated puzzle you didn’t expect. These instances can leave you searching for answers, wondering why simple activities set off a chain of behaviors that seem out of reach for traditional parenting frameworks. Noticing these behaviors creates an urgent need to understand what’s happening beneath the surface.

Step 1: Observe and Document Behaviors

The first step is to observe and document behaviors that raise concerns, such as resisting everyday tasks like cleaning up, brushing teeth, or sticking to a routine. Other signs to watch for include extreme discomfort when faced with expectations, which often leads to avoidance tactics, like making excuses or engaging in distractions to avoid tasks. You might also notice sudden and intense mood changes, shifting rapidly from compliance to resistance. 

Interpersonal challenges may also be clear as your child may appear sociable but use charm or manipulation to avoid demands, such as by pretending to be someone in authority, like a teacher or doctor. Be on the lookout for repetitive behaviors or role-playing as a means of controlling situations. Children with PDA often have heightened sensory sensitivities and may react strongly to stimuli like loud noises or bright lights, adding to their overall stress.

Maintaining a detailed log of these behaviors will help when you speak to healthcare providers. Documenting times where they resist everyday tasks, struggle with social interactions, or show signs of sensory sensitivity will be invaluable for professionals when making assessments.

Step 2: Consult with Your Pediatrician

When discussing your concerns with the pediatrician, you will need to share specific observations about behaviors related to PDA. Since pediatricians may not be familiar with PDA, which is not currently recognized as a separate diagnosis in the DSM-5, highlighting these behaviors within the context of autism spectrum traits can be useful.

Here’s an example of how you might describe behaviors to a doctor to highlight the possibility of PDA or autism, if these examples accurately reflect your child’s experiences—“My child’s reactions to everyday requests are often extreme. When I ask them to do something simple, like getting dressed, they immediately start avoiding it. They’ll shift the conversation, bring up unrelated topics, or make excuses, such as saying they’re too tired or their clothes are too uncomfortable. They might even blame someone else, stating, ‘I can’t do it because my brother made me too upset.’ But what really concerns me is that when they feel they’re losing control over the situation, they quickly escalate into an intense meltdown. It’s not just a tantrum—it’s an immediate, consuming response that can last a long time. It seems like even the smallest comment can set off a chain reaction of anxiety, avoidance, and then an extreme outburst. These behaviors go far beyond typical defiance, and I’m worried there’s something going on.” By sharing these details, the doctor may better understand these behaviors may reflect more than just oppositional tendencies and could show a need for further evaluation for PDA or autism.

Your pediatrician may then conduct an initial screening, using tools like the M-CHAT (Modified Checklist for Autism in Toddlers) to assess for autism spectrum traits. This information helps them in determining whether to refer your child to a developmental pediatrician or psychologist for a comprehensive evaluation. If you can bring with you a record of observed behaviors, this will assist the physician during the appointment. This record might include instances where your child resisted routine tasks, or exhibited extreme emotional responses, and any patterns you’ve noticed.

Step 3: Specialist Referral and Evaluation

If referred, neurodevelopmental pediatricians will conduct a comprehensive evaluation, which may include interviews, direct observation, and standardized tests to observe and assess various aspects of your child’s growth, behavior, and cognitive functioning. Be prepared for slow progress on this task, as families often experience long wait times, sometimes ranging from several months to a year, before getting in to see a specialist.

When you visit the specialist, to understand your child more fully they may use assessments like the ADOS-2 (Autism Diagnostic Observation Schedule) and the Vineland Adaptive Behavior Scales. The clinician may also include the Sensory Profile 2 to assess how your child processes sensory stimuli, which plays a major role in daily functioning. The provider might also use the Social Responsiveness Scale (SRS-2) to evaluate how your child interacts with others.

A neurodevelopmental pediatrician may start by reviewing their medical history and performing a physical examination, to rule out any other conditions that could influence their behavior. Physicians may also order genetic testing if they suspect an underlying genetic condition linked to PDA-like symptoms. The evaluation includes collaboration with occupational or speech therapists, to assess fine motor skills, speech and language progress, and daily living abilities with the goal of a comprehensive understanding of your child.

Waiting for an autism diagnosis can take months or even years, leaving some families to feel uncertain and unsupported during critical developmental periods. If you require help to reach doctors for an evaluation, explore online options like ADGCares, where physicians can remotely deliver a clinical evaluation, often with shorter wait times. Many of these services offer in-network pricing through insurance, making them a more convenient alternative to in-person evaluations—allowing you to get care for your child sooner.

While many medical professionals diagnose autism, their knowledge of PDA, a specific autism profile, might not be as extensive. Seek medical professionals trained in recognizing and understanding autism with a PDA profile. PDA North America is a valuable resource with its list of PDA-affirming providers, this detailed list is available at online at pdanorthamerica.org. These PDA-affirming providers have a deeper understanding of PDA, and can offer detailed assessments tailored to your child, focusing on characteristics specific to this profile that may differ from those in broader autism evaluations.

A consultation with a doctor for an evaluation that might lead to a diagnosis is key to gaining access to care. Each step, from specialized interventions to school accommodations, supports your child’s development and well-being, propelling them towards their potential.

Step 4: Understanding the Diagnosis

If your child is diagnosed with autism, including whether or not they have a PDA profile, the doctor will discuss the diagnosis, along with recommended therapies and educational adaptations tailored to their needs. This discussion is an opportunity to ask questions and gather information as you advocate for your child.

Since PDA involves extreme sensitivity to pressure, your physician may recommend techniques like low-demand parenting, which aim to reduce demands and find indirect ways to engage your child. Both PDA North America and The PDA Society recommend approaches focused on anxiety reduction and emotional regulation, two areas that can benefit children with PDA. 

Physicians may suggest various treatments to help children gain a greater sense of control and improve their ability to self-regulate. Assistive technology, like communication devices and sensory aids, can empower children by giving them alternative ways to express themselves—especially during nonverbal periods when conventional talking is too intense. Visual tools, like picture apps or wearable sensory aids, can be especially beneficial, as they support children to connect on their own terms. These devices offer non-verbal ways to communicate and make choices, allowing them to take more ownership over interactions and engage.

Well-prepared questions can make a big difference when discussing your child with their doctor. Start by acknowledging the diagnosis and expressing your interest in targeted interventions. For example, you might ask, “Thank you for explaining the diagnosis. Given [Child’s Name]’s specific challenges, which practices do you recommend for reducing anxiety and enhancing their sense of control?”

If you’re overwhelmed, asking for guidance on prioritizing the next steps is okay. You might say, “This is a lot to take in. Could you help us identify what’s most important to address first, considering [Child’s Name]’s PDA-related struggles?” These questions give the doctor a focused starting point, which is useful as you navigate the world of clinical therapies.

For school accommodations, inquire on ways to integrate your child into the school’s special needs program. You could start by saying, “We’d like to involve [Child’s Name] in the school’s support system. Could you advise us on how to develop an IEP or 504 Plan that specifically addresses PDA? Starting this conversation early in their academic journey can help to create a reassuring school environment with tailored support.

Strategies that will help immediately after a diagnosis are important to consider. Start with therapies that address pressing concerns, such as communication difficulties or sensory sensitivities, and gradually add additional help. A notebook or digital tracker can help track progress. This record can be crucial during follow-up appointments.

Schedule regular check-ins with your child’s healthcare team to discuss questions that arise as you implement the treatment plan. Follow-up appointments are also an opportunity to reassess and refine the plan. Remember, your involvement is key to your child’s success, so ask questions or mention concerns, recommend school adjustments, or proactively discuss any aspect of their care.

A low-demand approach and becoming knowledgeable about PDA-specific resources will benefit you as you advocate. By adopting the right strategy and perspective, you’ll be in an excellent position to empower your child.

Step 5: Navigating Insurance and Support Services

Once you understand your child’s diagnosis and available supports, the next task often involves maneuvering the maze of insurance coverage. You may realize that the needs of your child can extend far beyond therapy and educational programs, and accessing this help often starts with knowing what your insurance will cover.

Navigating insurance can be overwhelming, it’s a good idea to start by contacting your health insurer. Ask and clarify what treatments, services, and specific clinicians your plan covers. Be sure to get clear information from your insurance company on what types of therapy your plan includes. Ask specific questions regarding coverage, such as whether there are limits on the number of therapy sessions, which providers are in-network, and how to get pre-authorization. Contact your insurance company to determine your out-of-pocket costs and deductibles. It’s a good idea to ask if your insurance company has a case manager or specialist dedicated to autism that you can work with. Their expertise can help you navigate the specifics of your policy and ensure you use all available resources.

You might ask your insurer, “Can you tell me more about the autism-related services covered by our policy, specifically those that help with emotional regulation and sensory integration? Can you also offer information on additional options available in our area?” If you’re evaluating a specialized treatment that isn’t covered, another relevant question could be, “We’re looking into a therapy that’s currently out-of-network. Are there reimbursement solutions or out-of-network benefits we can explore? Are there any waivers or alternative programs that might give additional assistance?”

A similar process for medications is just as important. Medications for conditions such as explosiveness, anxiety, ADHD, sleep issues, depression, or other medical concerns may be subject to formulary restrictions by your insurance. Be sure to ask detailed questions about preferred and non-preferred medications, including copays. You should also inquire if any of your child’s medications require prior authorization, and, if so, what steps are involved. Staying informed allows you to be prepared and avoid unnecessary delays in treatment.

Beyond private insurance, Medicaid or Supplemental Security Income (SSI) can offer further help if your child qualifies, so consider exploring these options. With an autism diagnosis, Medicaid can cover services that private insurance might not, including extended therapy sessions, specialized educational support, and in-home caregivers. Later in the book, we’ll cover how to work with Medicaid and Supplemental Security Income and show you ways to access these benefits.

Don’t overlook the possibility of financial assistance or support for children with autism from other state and local organizations, in addition to Medicaid and SSI. These programs can include Early Intervention services for younger children, state-funded respite care, or grants from local nonprofits that help families with special needs.

Real-Life Examples

Many of us find it easier to retain information by reviewing examples. Observing how another family has approached similar circumstances can provide clarity and reassurance. Here’s a couple of cases:

A family we know from my daughter’s school shared their journey, which took over two years from the visit with the pediatrician to receiving an official autism diagnosis with a PDA profile. Several months passed while they awaited a referral to a developmental pediatrician. Then, they had to endure an additional year-long wait to access the specialist and receive the diagnosis. This family, despite facing barriers, implemented PDA affirming frameworks at home, drawing inspiration from material similar to the guidance in this book. These concepts aided them in addressing their child’s struggles while navigating the complexities of the healthcare system.

Other parents in our support group said they were overwhelmed and unable to manage the complicated insurance issues. To deal with this problem, they reached out to a local advocacy group for families of children with special needs. Through this relationship, a social worker helped them by assisting with their SSI application and finding additional resources in their community. This assistance enabled them to secure life-changing help for their child.

Handling Your Feelings After a Diagnosis

Now that we’ve reviewed everything leading up to this moment, let’s take a minute to pause and check in on how you’re feeling. The discovery of your child’s diagnosis is more than just learning new vocabulary and therapies—it’s a deeply impactful experience. You might discover solace in having a name for what you’ve been experiencing, or you could find yourself disoriented by the potential implications for the future.

Whatever you’re feeling is valid.

Many parents have a mix of emotions after such news. Relief often comes first—the comfort of knowing you’re not alone and that others have walked this path. It can seem like a weight has lifted when you realize there’s a community to support you and your child. But alongside relief, it’s natural to have moments of grief, fear, or denial. You might worry about your child’s happiness, relationships, or how they’ll interact and excel in the world around them. You might doubt your parenting skills, wondering if you’ve made mistakes or if you’re prepared for the future.

Let me assure you: having these thoughts doesn’t mean you’re a terrible parent or love your child any less. It means you’re human. It’s common to require time to process. Allow yourself to experience the entire spectrum of feelings—hope and fear, confusion and clarity.

Keep in mind, this information doesn’t change who your child is. They’re the same person they’ve always been. Awareness of their needs helps you better comprehend their challenges and open access to resources that empower them. Connecting with other parents can also be life changing. Informing sympathetic people of your difficulties can provide comfort and sound advice. Support groups and community events focused on PDA and autism offer spaces to establish these relationships.

Don’t be too hard on yourself as you process these feelings. It’s okay to move forward one day at a time. Educate yourself at a manageable pace. Acknowledge your successes, however small, and seek professional advice if you’re struggling to cope. The strength of your love and dedication can move mountains. By focusing on your child’s unique capabilities and growth areas, and drawing on the options available to you, you can create a foundation that reinforces their progress and builds resilience.

Conclusion

The steps from recognizing PDA traits to securing a diagnosis of autism with a PDA profile to accessing treatment can be exhausting. Your role is essential in assuring your child receives necessary care. Allotting time to record behaviors, get professional evaluations, and comprehend the full ramifications of a diagnosis will give you the understanding and tools to best assist them. This journey is a marathon, not a sprint, and each step brings you closer to understanding and advocating for your child. Up next, we’ll discuss how to build a strong medical team to ensure your family receives the comprehensive care needed to thrive.

CHAPTER 2

BUILDING A MEDICAL SUPPORT SYSTEM FOR CHILDREN WITH PDA

Now that you have a diagnosis, it’s normal to feel confused and wonder where to begin in helping your child. Many parents face this uncertainty. Once you’ve discussed PDA concerns with your pediatrician and received a diagnosis, the next step is to establish a well-rounded medical team. Your pediatrician plays an important role, as they might be the first to notice signs warranting further evaluation. Care often expands to include professionals such as psychologists, therapists, and other specialists from this point forward. Together, they form a team to address diverse needs. This can create a sense of relief for you—knowing that your child is not alone but understood and reassured by experts.

If you’re still waiting on a diagnosis, don’t worry—this chapter and the entire book can still be valuable to you. There’s plenty here to get you started now, as well as specific questions to bring up with your healthcare provider when you can. Think of this book as a resource you can turn to anytime, offering guidance to help you encourage your child as you move forward together. 

From Pediatric Care to Comprehensive Clinical Support

When assembling a care team, it’s helpful to include a pediatrician, psychologist, and psychiatrist. These professionals have different roles, but they work together to support your child. Psychologists provide therapy to help with emotional and behavioral responses, engaging deeply with child and family. Psychiatrists, on the other hand, can help manage complex behaviors and co-occurring conditions by offering treatments—such as prescription medications—that extend beyond what behavioral interventions alone can address.

On the topic of psychiatrists and medications, it’s important to mention that our goal isn’t to persuade you to use medications, but to inform you about them and review circumstances in which they might be used. Early involvement of a psychiatrist in your child’s care team is a wise, proactive step, even if you’re not considering medication right now. Specialist appointments often have long wait times, so having a psychiatrist already involved provides flexibility if the need for medication arises later. Children with autism and a PDA profile may exhibit unpredictable, explosive behaviors. There may be a time when you think that medication could offer aid in managing these intense episodes. Even without prescribing medication, the guidance and understanding a psychiatrist provides can be immensely supportive. A strong connection with a psychiatrist can lead to a flexible treatment plan, ensuring you get the support you require when you need it.

One family shared how working with both a psychiatrist and a psychologist knowledgeable in PDA made all the difference for their son. The psychiatrist prescribed medication that reduced his explosiveness, improving daily life. Meanwhile, the psychologist introduced strategies to reduce daily pressures. For instance, instead of focusing on compliance, they opted to use declarative language and made simple observations like, “It looks like your favorite shoes are by the door,” rather than direct commands. This approach reduced his distress about getting ready to leave the house, creating a less pressured environment that empowered their son to feel in control.

Another family faced sleep issues with their daughter, which compounded her PDA-related anxiety. She often found herself caught in a cycle of worrying about not sleeping, making it harder to fall asleep—a vicious loop that left everyone exhausted. Rather than introducing medication, they worked with a psychologist to craft a calming bedtime routine. They incorporated her favorite relaxing activities, like listening to gentle music, in a cadence that she could control. This low-demand technique helped her become more secure at bedtime, leading to better sleep and a calmer household.

Families can create a comprehensive support system for their child’s behavioral and medical needs by tapping into the expertise of both psychologists and psychiatrists. Whether you incorporate medication into a care plan, having a multidisciplinary team provides comprehensive support.

Exploring Integrative and Alternative Care Approaches

Some families choose to incorporate integrative care alongside traditional medical and psychological treatments. Blending conventional methods with complementary interventions aims to address the whole person—mind, body, and spirit. This process might include naturopathic medicine, chiropractic care, dietary adjustments, mindfulness practices, or other complementary therapies. Despite not being for everyone, exploring alternative therapies may prove beneficial for some. If you don’t find this section appealing, skip it and move on to strategies that better align with your family’s plan.

As stated earlier, functional medicine practitioners prioritize a holistic approach, seeking the underlying causes of health issues while addressing their symptoms. They may suggest an elimination diet to identify food sensitivities that could exacerbate anxiety, or conduct tests to assess gut health, which may affect mood and behavior. For families interested in exploring this path, the Institute for Functional Medicine provides a directory of certified practitioners specializing in autism and supporting the needs of neurodivergent children. While this approach isn’t for everyone, it can offer insights for families looking to address PDA holistically. Consulting with a functional medicine practitioner can help uncover hidden factors that may influence your child’s PDA symptoms. Together, you can work to develop a personalized treatment plan.

Another integrative care option is chiropractors. Chiropractors focus on adjustments to help regulate the autonomic nervous system, which could be beneficial for children with heightened sensory sensitivities. Chiropractic care can indirectly support sensory processing and reduce anxiety, which may help prevent avoidance behaviors or outbursts. Some families report that regular chiropractic sessions have contributed to a decrease in their child’s overall discomfort, which can help them with feeling in control and less reactive to everyday demands. Companies like PX Docs share information online on how chiropractic care might benefit children with autism, enabling families to make informed decisions about adding this care into their child’s clinical plan.

The hands-on technique of craniosacral therapy is another way some families seek support to manage symptoms. This involves a light touch to release tension in the central nervous system, which can promote relaxation and reduce stress. For children with PDA, who often experience high levels of worry and sensory sensitivities, craniosacral therapy may promote calm, making daily activities manageable. Some families have found that this makes their children feel more at ease, reducing the likelihood of explosive responses to everyday pressures. While craniosacral therapy might not be suitable for everyone, it may deliver valuable care for those interested in a holistic method to manage stress. If you’re considering this treatment, The Upledger Institute has a directory of certified craniosacral practitioners to assist you in finding qualified professionals in your area.

Children with PDA can benefit from mindfulness, yoga, and sensory-based programs because these practices help reduce stress and improve emotional regulation. Guided visualization and breathing methods to promote calm and reduce discomfort can make daily demands seem easier. Programs that incorporate mindful movements, such as yoga or tai chi, increase body awareness and provide non-threatening ways to engage children physically while connecting with their sensations. Frameworks like the Zones of Regulation enable children to recognize and deal with their emotions, and apps like Headspace provide child-appropriate mindfulness techniques to teach these skills.

Integrative Care as a Personal Choice

As we mentioned earlier, choosing the right treatments should prioritize your child’s needs alongside your family’s circumstances, resources, and preferences. No matter your approach to healthcare—conventional medicine, holistic therapies, or a mix of both—working with your child’s primary care provider is crucial. This ensures that all interventions are safe and appropriate. Remember, clinical decisions should involve qualified professionals, as this book does not replace professional medical advice.

Challenges Related to PDA Can Improve with Support

Children with PDA can make meaningful progress. While PDA is a neurological condition, growth and improvement are absolutely possible. The goal of this book is not to “fix” your child with autism and a PDA profile. Instead, the intention is to help you support your child and family in navigating the challenges associated with PDA. This book serves as a quick-reference guide, offering practical tips and resources to help your family. By applying concepts such as reducing direct requests, using indirect communication, and fostering a nurturing atmosphere, you can help your child develop confidence and feel less overwhelmed by daily demands.

Accepting and Embracing PDA Within the Family

What if your co-parent doesn’t believe in PDA? This lack of belief is a common experience that frustrates many families. Both parents and caregivers must acknowledge and understand the reality of PDA. One parent’s reluctance to accept the diagnosis makes the process much harder.

A parent or caregiver’s resistance to accepting PDA as a neurological condition, instead of a behavioral issue, can create tension within the home. This lack of alignment can confuse the child and undermine efforts to establish a loving relationship. Family counseling with a professional who understands PDA and uses low-demand techniques can create a shared understanding for everyone.

Incorporating outside training and education, such as attending workshops or engaging with online communities, can help resistant parents recognize the reality of the condition. The PDA Society and PDA North America both provide parents and caregivers with valuable resources, including online webinars and support groups, to deepen their understanding of PDA. One family in an online group shared how much they benefitted when both parents attended a virtual workshop that shed light on the intricacies of autism with a PDA profile. This shared learning unified their plan, creating a consistent and compassionate home for their daughter.

Conclusion

Building a medical team begins with understanding the importance of reducing pressures and focusing on connection. While all medical professionals can provide treatment, it’s crucial to work with those who recognize the effectiveness of low-demand techniques. Each professional contributes to your child’s health, whether by offering therapeutic tools, medication to manage anxiety, or by helping to create conditions that enhance emotional security. Parents and caregivers too should align by adopting a low-demand structure for the family. 

Persistence is necessary when navigating the intricacies of service access. Adding your child to waitlists, following up with providers, and exploring interim options can help you during this process. These tasks can be overwhelming, but each step brings you closer to ensuring your child receives the help they deserve. The next chapter will focus on various supportive therapy options. These therapies provide practical tools to help your child build skills and confidence to engage more comfortably with everyday challenges.

CHAPTER 3

EXPLORING SUPPORTIVE THERAPY

If you’re fortunate enough to have insurance and financial support, that’s a great starting point. But even with such resources, we know that navigating the world of therapies can seem like a part-time job in itself. Sorting through choices, figuring out where to begin, and understanding what might be a fit for your child can be overwhelming. The last thing we want is to add to this stress. The aim of this chapter is to simplify the process by providing a straightforward introduction to various methods. We’re here to help you feel encouraged as you explore treatments that can best enhance your child’s growth and quality of life—without the need for a roadmap or a degree in healthcare navigation to get started.

Accessing Therapeutic Resources Post-Diagnosis

Therapy can be a powerful aid for children with PDA. As with many things in life, what works wonderfully for one child may not work for another. This list below isn’t exhaustive; but it offers starting points for your exploration. The real key? The relationship between your child and the therapist. Studies show that effectiveness hinges on a firm, trusting connection between the two.

Seek a professional who not only understands PDA but also will modify their style as appropriate. Therapists experienced with PDA use flexible, low-demand concepts, adjusting their techniques to reduce pressure. This open mindset allows them to move at your child’s pace and introduce techniques slowly.

Types of Therapy Options

Therapy is deeply personal, and it’s necessary to approach it with flexibility and an open mind. Just as we offered a disclaimer in chapter three regarding medical treatments, we want to share a similar comment on therapies reviewed in this chapter. Think of the ideas ahead as ingredients in a recipe—some might be just the right blend, while others may not suit as well, and that’s perfectly okay. We present this information as a choice to explore; you can delve into what feels suitable for your family and skip what doesn’t resonate. Every child is unique, and finding the right structure means custom tailoring unique to them.

Speech Therapy

Speech therapy can be invaluable for children who have challenges both verbally and non-verbally. Children with PDA often experience high levels of discomfort in expressing themselves, particularly if they perceive pressured to respond or perform. A skilled speech therapist will focus on developing systems that ease frustration and anxiety, using supports like visual aids, sign language, or other alternative methods of expression. 

Speech therapists might introduce picture cards or an app for your child to use to signal when they need a break or feel anxious. This empowers them to communicate in a safe and attainable way. You can also role-play common scenarios, like making a request or asking for space. Role playing helps your child practice these interactions in a low-pressure context. These experiences build confidence and provide children with alternative tools for communicating, especially when verbal language might be too intense. You can learn more about speech therapy and find local providers through the American Speech-Language-Hearing Association (ASHA) available online at asha.org.

Occupational Therapy (OT)

For children with PDA, working with an occupational therapist can be transformative. Many children also have sensory sensitivities that make activities like dressing, feeding, or brushing teeth a real obstacle. Occupational therapists introduce sensory-friendly devices, such as weighted blankets, fidget toys, or brushes, allowing children to regulate their sensory input and better manage their responses to the environment. By personalizing approaches, OT providers can make daily routines seem safer, less stressful, and achievable.

If dressing is a struggle, an occupational therapist can help your child become comfortable with different fabrics, or introduce calming sensory techniques, like using a textured brush before meals, to reduce pressure around eating. The therapist customizes each session to meet your child where they are, moving at a pace that respects their sense of security and need for control. These techniques don’t aim to push but to provide ways to help children become more centered and capable in their day-to-day life. The American Occupational Therapy Association (AOTA), offers information on OT practices and has an online directory to locate certified providers.

Modified Cognitive Behavioral Therapy (CBT)

Modified Cognitive-Behavioral Therapy (CBT) can make a world of difference by providing support without adding extra pressure. While traditional CBT focuses on identifying and reframing anxious thoughts. For children with PDA, therapists modify and adapt to prioritize comfort and the need for control. Rather than seeking immediate responses, the therapist introduces concepts that have the child explore their thoughts without feeling bombarded. This modified structure respects the child’s need for autonomy, while equipping them with practical tools for managing responses.

For instance, therapists might help your child in recognizing early signs of stress and practice simple, low-demand coping methods, such as deep breathing or grounding exercises. Instead of expecting a child to process their fears on the spot verbally, the therapist will encourage them to express feelings through drawing or storytelling, providing a choice in how the child communicates. This guidance assists children with managing thoughts while being respected and valued. For information on CBT and to find a qualified clinician, The Association for Behavioral and Cognitive Therapies (ABCT) has quality resources and a directory of professionals.

Dialectical Behavior Therapy (DBT)

For children with intense responses, Dialectical Behavior Therapy (DBT) can be a model of support, especially for those with PDA who may find managing big reactions as too much to handle. DBT expands on traditional CBT by adding skills for emotional regulation, distress tolerance, mindfulness, and interpersonal effectiveness. For children with PDA, therapists play a crucial role in modifying DBT to create a low-pressure environment—validating the child’s experiences while introducing ways to manage intense responses and improve social interactions.

A therapist might work with your child on building distress tolerance by teaching them strategies to distract themselves when becoming overwhelmed. These exercises may include counting objects around them, doing a quick mental math exercise, or reciting a favorite song lyric. These techniques can help your child shift focus, giving them a momentary break from intense feelings, and allowing them to regain their calm. When focusing on relationships, therapists might guide a child through role-playing scenarios that provide practice opportunities for expression and self-advocacy. Through these gradual steps, DBT equips children to deal with emotions and shape confidence. For free materials on DBT, The National Education Alliance for Borderline Personality Disorder (NEABPD) shares extensive content online.

Acceptance and Commitment Therapy (ACT)

For children with PDA, Acceptance and Commitment Therapy (ACT) can also be beneficial. ACT focuses on helping children accept complex feelings rather than avoiding them and uses mindfulness and values-based actions to build resilience and reduce anxiety around pressures. This system gives children the tools to stay present and make choices aligned with their values. This approach enables children to tackle difficult emotions and strengthen self-confidence in a safe and uplifting way.

A therapist using ACT might begin by guiding your child through initiatives that focus on observing their feelings without judgment, reinforcing that it’s okay to have discomfort with no need to avoid it. They might also explore what values are meaningful to your child—like kindness, curiosity, or creativity—and encourage them to set small, achievable goals related to these values. All of this to help build a sense of purpose and autonomy. These steps can give children more control over their feelings and actions. For resources on ACT and to find a provider, visit The Association for Contextual Behavioral Science (ACBS).

Play Therapy

Play Therapy is an indirect and non-demanding approach for children to share and process their emotions. Through play, children can explore their feelings through activities like role-playing, making it less confrontational than traditional approaches. It provides a safe and nurturing place to gain insight into emotions, at the child’s pace and in a natural context. All of this to relieve the pressure often associated with traditional therapy.

In a Play Therapy session, a child might use dolls or figurines to act out scenarios that mirror their own experiences. This technique allows children to explore emotions like anxiety or frustration without verbalizing them. Therapists can shape these interactions to improve the child’s development of emotional awareness and share healthy ways to manage feelings, all within a safe space. For families looking to explore this further, The Association for Play Therapy offers valuable insights into the advantages of Play Therapy and has a directory of registered Play Therapy providers online. For families with limited local access, programs like AutPlay provide online sessions where children can engage in therapeutic play, developing their emotional regulation and social skills without the pressure of traditional settings.

Floortime

Floortime is a play-based method designed to support children’s emotional, social, and communication development. Created by Dr. Stanley Greenspan, it is rooted in engaging with the child at their own level, following their lead in play to build a trusting connection. This approach helps children with autism and PDA feel understood, which encourages them to interact naturally and at their own pace. Because the child’s interests lead the sessions, it reduces pressure, creating a safe space for them to explore new ways of expression.

As a type of Play Therapy, Floortime focuses on using play to strengthen abilities through enjoyable, meaningful interactions. By “getting on the floor” with children, therapists or parents become active partners in their play, allowing the child to take charge of the interaction. This helps develop their social skills, emotional regulation, and ability to handle everyday situations. For information and resources on Floortime, visit The Interdisciplinary Council on Development and Learning (ICDL) website or the Stanley Greenspan Floortime Approach program online.

Collaborative and Proactive Solutions (CPS)

Another newer framework for supporting children with PDA is, Collaborative and Proactive Solutions (CPS), developed by Dr. Ross Greene. Based on the philosophy that “children do well if they can,” CPS focuses on understanding the underlying reasons for behaviors, working with the child to reduce demands, and brainstorming approaches together. This collaboration, where parents and professionals are integral, reduces anxiety around expectations and inspires problem-solving skills in a low-pressure, motivating manner.

A CPS session might involve the therapist and child discussing a specific challenge, like shifting from one activity to another. Instead of imposing a solution, the therapist would ask questions to understand why this transition is difficult. Together, the child and therapist brainstorm ideas, such as setting a timer or choosing a comforting object to carry between events. These approaches help the child to feel confident and involved. For more information, CPS provider resources, and training options for parents and families, visit Dr. Greene’s Lives in the Balance website. This site has a directory to find CPS-trained providers and has online courses to teach families to apply this concept.

Sensory Integration Therapy

Sensory integration therapy can be beneficial for children with PDA who have heightened sensory sensitivities. This technique uses specialized tools, like swings, textured toys, and weighted blankets, to help children regulate sensory input and maintain calmness and focus during daily routines. By addressing sensory sensitivities in a controlled setting, children learn to manage overstimulation and develop greater adaptability.

With sensory integration, a therapist might introduce a swing to help your child find calm, using gentle movements to provide an immediate soothing effect when they experience a lot of stimulation. Therapists can also incorporate textured or fidget toys into clinical plans, encouraging children to focus during tasks that might otherwise be anxiety-inducing. This therapy aids children in learning sensory regulation skills, which many children with PDA find calming. For additional information and to locate a provider, visit the STAR Institute for Sensory Processing website as it contains guidance on sensory integration and a directory of certified professionals. This can be a valuable starting point for families seeking specialized support.

Emotional Regulation Therapy

Emotional regulation therapy is another approach worth merit, as it enables children with PDA to develop skills for managing their emotional responses. This therapy often uses mindfulness and calming techniques to reduce worry, equipping children with methods to be more at ease in their day-to-day experiences. 

In a session, a therapist might walk your child through simple breathing exercises or introduce grounding activities, such as focusing on physical sensations, to help them return to a calm state during moments of stress. Over time, these practices can become familiar, and your child can use them, whether they’re anxious about a new situation or overwhelmed in a social setting. This gradual path, which helps children to understand and control their emotions without pressure, requires patience and understanding from parents. For information on emotional regulation techniques and to find a specialist, visit The National Institute for the Clinical Application of Behavioral Medicine (NICABM).

Parent Training

Although many online references are available for parent training, PDA North America and The PDA Society stand out for their specialized focus. Parent training is essential for families struggling to help their children. These programs teach parents strategies like using declarative language and low-demand communication to help manage meltdowns, reduce distress, and create a calmer home for the whole family. 

The PDA Society offers a course called An Introduction to PDA for Parents and Carers available online. This course offers insight into managing PDA behaviors, giving you everything necessary to assist your child with confidence and skill. They also host webinars and have downloadable materials focused on topics like anxiety management and creating positive relationships. In a similar vein, PDA North America has workshops and support groups that connect parents with professionals knowledgeable about PDA. Online forums and social media groups dedicated to PDA can also be invaluable, allowing parents to share experiences with one another.

By reviewing and following these resources, you can grow a personalized collection of strategies to aid your child. Learning and applying these methods will support your child while strengthening your confidence as a parent. While we recognize that access to help may vary, we hope the information in this book offers a solid starting point. 

Therapy Must Fit Your Child and Family

There’s no one-size-fits-all therapy; what works well for one child may not work for another. You may have tried some of these approaches already, experiencing fantastic outcomes with one, while finding another less impactful. This list isn’t exhaustive; many frameworks exist, and new ones continue to emerge. We don’t intend to endorse any type as universally “good” but to highlight those you might want to explore further. The key lies not only in the connection between your child and their therapist, but also in the relationship you share with your child. It’s essential that your child feels connected, safe, and understood by both you and their therapist. The goal isn’t to tackle everything at once but to focus on what feels accessible, flexible, and meaningful to you and your child.

We understand your desire to do everything for your child, but it’s important to recognize that’s not always possible. Many special needs families find that managing their child’s care can become a full-time job. Our aim isn’t to overwhelm you, but to provide starting points to explore as you’re ready. Remember, this process is more like a gradual climb than a race; take your time and find the team and pace that works best for your family. You may try one therapy or a combination, then shift to something different as goals and support needs change. The goal is to find a therapy that’s adaptable and impactful within what you can manage together. By exploring these options at the right time, you’ll be able to assist your child in a manner that aligns with their priorities and your family’s resources and capacity.

Collaboration on Goals with Therapist

Now that we’ve shared a variety of therapeutic options, the next step, if you’re working with a therapist, is to collaborate on setting meaningful goals. Goal setting is crucial for ensuring that the techniques used align with your child. For instance, if your child struggles to move from screen time to visiting family members, a therapist can form a plan that respects their desire for autonomy while keeping a schedule on track.

During a session, you could work on ways to help your child have a sense of ownership over deadlines. Let’s say you must leave at 4 p.m. the following week for a visit with Grandma. During a session, the therapist might suggest practicing a scenario where you say, “We’re planning to leave at 4 p.m. When would you like to finish your game so you can have enough time to get ready?” The therapist might then work with you on different responses, suggesting advice on pacing, tone, and how to phrase questions to avoid direct requests. For example, if your child has difficulty deciding, the therapist might encourage you to offer options: “Would you like to wrap up at 3:30, or do you need until 3:45?”

After role-playing at the clinic, you can practice this language at home. The therapist can also assist with monitoring progress by checking in on how these transitions went, making any necessary adjustments for future scenarios. This step-by-step guidance can make it easier to move between activities with less stress and greater cooperation.

Here’s one way you might set a goal with a therapist to increase your child’s comfort during meals, particularly if sensory overwhelm or fatigue often arise. Instead of asking your child to sit with the family at the table, you could start by setting up a cozy and quiet eating space nearby, with accessible sensory support and preferred seating. The therapist might propose instruction on phrasing, such as suggesting that you mention, “Would you prefer to sit at the table today or in your quiet corner?” By presenting this choice, you’re reducing the perceived pressure of the meal while giving your child control over the situation.

In this framework, the therapist could also recommend integrating gentle, low-pressure ways to include your child in the mealtime experience. For instance, you might invite them to prepare a preferred snack or meal on their own terms, providing alternatives has them interact with food through touch or play, rather than eating if they’re not ready. You can adapt the plan and introduce small steps as your child progresses, encouraging them to re-engage with eating routines at their own pace. 

Regularly checking in with therapists to review and adjust goals helps keep your child’s progress on track. As the needs of your child change, these check-ins make sure the support stays helpful and relevant. This approach creates a flexible plan that adapts as needs change.

Practical Note on Applied Behavioral Analysis (ABA)

When it comes to addressing clinical needs, any comprehensive book on PDA and autism must review the intricacies of therapeutic approaches, particularly the well-known and often debated therapy, Applied Behavior Analysis (ABA). Rooted in behaviorist principles, ABA focuses on observable behaviors and how reinforcement can shape them. Behaviorism is a response to environmental stimuli, and behaviorism-type therapies aim to increase desirable behaviors and decrease unwanted ones by applying reinforcement techniques. Historically, ABA was recommended for children with autism to help them develop specific skills. It is also often suggested because it is one of the few therapies commonly covered by insurance. At its core, ABA centers on compliance and behavior modification, which can be overly rigid—or even distressing— especially those with PDA who thrive in low-demand and collaborative settings.

Another concern with ABA is its emphasis on increasing compliance and reducing certain behaviors, which can lead to increased stress. This pressure can trigger avoidance, as it often overwhelms a child who is already struggling with external expectations. While reading all of this, please remember that PDA is not simply about refusing to comply; PDA is rooted in anxiety stemming from a perceived loss of control. The emphasis on ‘fixing’ behaviors sends an incorrect message that there’s something wrong with the child—rather than fostering the understanding that it’s a neurotype, like all neurotypes, to be supported and respected. You must understand this behavior-based focus to make an informed decision about ABA.

For these reasons, this book does not endorse ABA or any behaviorism-based methods as a preferred therapeutic option. Instead, we highlight other therapies centered on acceptance, understanding, and honoring the child’s autonomy. The goal is to create a space where children feel safe, seen, and valued—free from pressure to comply. 

However, since ABA may be one of the few options covered by insurance, it is often the only resource available to many families. With this in mind, it’s important to supply parents and caregivers with realistic, quality information—even if ABA is controversial—in the event they choose to take part in a therapy that’s available to them and modify and align it to their needs. The field of ABA has evolved significantly. Many providers today (though we must reinforce not “all” providers) use more compassion and flexibility. Many modern ABA services aim to understand the reasons behind a child’s behavior rather than focusing on strict compliance. These programs focus on building relationships and developing emotional regulation skills, moving away from demand-based approaches. This individualized style can help children develop adaptive skills, in a low-stress environment that respects their desire for autonomy.

If ABA is the only therapy covered by your insurance, seek a provider who uses a modern, supportive style that honors your child’s unique individuality and supports their strengths. Be mindful that not all ABA organizations or Board-Certified Behavioral Analyst (BCBA) technicians use modern, flexible, low-demand techniques or will customize their plans for children with PDA. This reality means that even if ABA appears to be the only option, some providers may not align with your family’s priorities. Remember, you are not obligated to continue with ABA if the organization or technician doesn’t adjust to meet your child’s needs—you have the right to stop, at any time, even if initial evaluations have been completed and therapy has started.

If considering ABA, requiring alignment with your priorities is crucial. Many ABA providers can adapt, so openly discuss your goals with your ABA behavioral technician. Confirm they understand your child’s need for a low-demand, collaborative approach. You can ask them to review resources from PDA North America or The PDA Society, which offer insights into customizing ABA for PDA, and discuss how they will incorporate these materials into your child’s clinical plan. Your involvement in these sessions, with your child’s consent, lets you monitor the encounters to ensure your child feels safe and supported.

We do not intend for the inclusion of ABA in this book to be interpreted as an endorsement of behavior-based approaches. Rather, we aim to provide practical guidance for parents and caregivers when other treatments are not available.

Adapting Therapies to Address the Needs of Children with PDA

While we’ve already addressed the conflicts with ABA for children with PDA, it’s relevant to note that other traditional therapies may also require revisions to align with a low-demand framework. One effective way to achieve this is by using declarative language, which centers on sharing observations and experiences rather than issuing direct instructions or commands. This can reduce anxiety and encourage engagement.

During a speech therapy session, for example, instead of saying, “Repeat after me: ‘cat,’” the clinician might comment, “Look at this picture of a cat; its whiskers are so long.” In occupational therapy, rather than mentioning, “Stack these blocks in order,” the provider could observe, “These blocks can make interesting towers.” By using declarative language, therapists minimize pressure and allow the child to join voluntarily.

You can ensure your child’s treatment plan is customized by discussing with providers the incorporation of low-demand practices like declarative language. When starting these discussions, try phrasing something like, “I’m interested in exploring how we can incorporate low-demand methods, such as declarative language, into my child’s treatment plan, given their PDA profile.” You might also add, “These approaches have proven useful for children with PDA, and I believe they could make a meaningful difference for my child.”

Resources for Professionals

Materials on PDA can enhance the conversations you’re having with your child’s therapist. Many therapists may not understand PDA, so sharing research and articles may enlighten and inform them. As referenced previously, The PDA Society and PDA North America are two excellent sources, each furnishing guides and studies that can help therapists grasp the nuances of PDA. For instance, The PDA Society offers a variety of articles, videos, and materials designed for providers working with children with PDA, along with training materials and webinars to teach them to adjust their techniques. You can find information at pdasociety.org.uk. PDA North America has similar materials to assist professionals in understanding PDA, and focuses on a North American context, available at pdanorthamerica.org.

By passing on these insights, you’re creating a collaborative, well-informed foundation for your child’s treatment plan. In our experience, many providers were unfamiliar with PDA until we introduced them, highlighting just how critical it can be to inform professionals about PDA to ensure they offer the best support to all children.

Conclusion

As we end this chapter, I want to reinforce the notion that there’s no ‘perfect’ path when it comes to therapy. The key is to find what feels right for your family at this moment. You have the freedom to experiment with different approaches, set your own pace, and concentrate on what connects with you and your child. In the next chapter, we’ll cover essential financial supports like Medicaid, Supplemental Security Income (SSI), and other financial assistance and planning options. Throughout the chapter, you’ll find guidance on resources to help secure your child’s financial future.

CHAPTER 4

NAVIGATING FINANCIAL SUPPORTS: MEDICAID, SUPPLEMENTAL SOCIAL SECURITY INCOME (SSI), AND FINANCIAL ASSISTANCE AND PLANNING OPTIONS

Now that we’ve taken a close look at how a PDA diagnosis unfolds, and reviewed the variety of medical and therapeutic choices, I hope that you’re uplifted by the many meaningful ways to help your child and family. Still, it’s natural to be overwhelmed by the financial side and wonder, “How will I ever afford all of this?” In this chapter, we’ll dive into financial assistance—like Medicaid, Supplemental Social Security Income, and other forms of financial support and planning possibilities—that can make services within reach. 

Medicaid

Medicaid can be a critical resource for families, making therapies, medical treatments, and services obtainable. By easing some of the financial pressure, Medicaid allows families to focus on their child, creating space to nurture their growth without the constant worry over costs.

Medicaid eligibility varies by state but generally covers children in low-income families and those with disabilities. Since these guidelines can differ, it’s helpful to start by checking your state’s requirements, which you can often find on your state’s Medicaid website. In many states, children with special healthcare challenges or disabilities, like autism with a PDA profile, may qualify for Medicaid through additional pathways, even if family income exceeds traditional limits. Families can apply for Medicaid through their state’s Medicaid office or the federal website medicaid.gov. 

Here’s a step-by-step look at the process and timeline:

1. Determine Eligibility: To determine eligibility for Medicaid, you must consider various factors, including income, family size, and medical priorities. For children with disabilities, including autism, many states offer Medicaid through special programs like Medicaid waivers or TEFRA/Katie Beckett waivers. These waivers let children qualify based solely on their medical condition without factoring in family income. Since the availability and specifics of TEFRA/Katie Beckett waivers vary by state, it’s essential to research how they work in your area.

For detailed information on Medicaid waiver programs, check out online websites like Kids Waivers. This service provides state-by-state guidance on Medicaid waiver options, offering families’ assistance on eligibility and application criteria.

2. Gather Required Documentation: To apply for Medicaid, you’ll need to present:

Proof of Income: Recent pay stubs, tax returns, or other documentation showing the family’s income.

Medical Documentation: Evidence of the child’s autism diagnosis and related medical requirements. These documents may include evaluations from healthcare providers, such as a developmental pediatrician or psychologist, as well as treatment records or therapy reports.

Proof of Identity and Residency: Birth certificate, Social Security number, and proof of residency, such as a family utility bill or rental agreement.

3. Application Submission: Applications can be completed online, by phone, or in person at a local Medicaid office. Many states also have online portals to simplify and expedite the application process, making it easier for families to apply, submit documentation, and track their application status. After submission, Medicaid typically makes an eligibility determination in 45 days. If additional documentation or a disability determination is required, the process may extend to 90 days.

4. Approval and Enrollment: Once approved, families will receive a benefits card and information on using services. If denied, families can appeal the decision, with instructions included in the denial notice.

Examples of Services Covered by Medicaid

Medicaid offers a wide range of services for children with autism, and many of these come at little to no cost for families. These benefits often include services like occupational and speech therapy, behavioral interventions, and other specialized assistance designed to meet your child’s developmental priorities. And while these are just a few examples, Medicaid’s coverage is extensive, with services aimed at providing comprehensive care. This support can make a meaningful difference, enabling more families to access resources.

Therapies: Medicaid generally covers speech, occupational, and physical therapy, which are commonly used for children with PDA and autism. These therapies address communication, motor skills, and sensory processing challenges.

Behavioral Health Services: Coverage may include Applied Behavior Analysis (ABA), Cognitive-Behavioral Therapy (CBT), and other mental health services like counseling and family therapy.

Medical Equipment and Assistive Technology: Medicaid can help families with affording communication devices, sensory tools, or adaptive equipment for daily activities.

Medical Transportation: Provides non-emergency medical transportation (NEMT) to ensure children can access covered medical services, such as therapy and medical appointments.

Developmental Screenings and Assessments: This covers screenings to monitor and document progress and identify any additional required assistance.

Prescription Medications: Covers medications necessary for managing conditions related to autism, such as anxiety, explosiveness, and attention issues.

Personal Care Services: Offers support with daily living for children who need extra help with tasks like bathing, dressing, and eating.

Home Health Services: Furnishes in-home providers for eligible children who may benefit from additional care, including nursing and home-health support.

This assistance can vary by state, so it’s always a good idea to check with your local Medicaid office to understand what is available in your area.

Additional Benefits of Using Services Covered by Medicaid

Since many families use Medicaid to cover therapy expenses, this frees up their own money to invest in additional supports, such as private tutoring, sports, or specialized programs for children with PDA and autism. Other families may use Medicaid to pay for respite care. With respite care, caregivers can take a break, work, manage other responsibilities, and spend time with other children and family members. 

For additional information related to Medicaid, consult the National Disability Rights Network. This organization has guidance on accessing Medicaid and shares additional resources for families seeking financial benefits.

Medicaid Waivers

We recognize we’ve briefly touched on Medicaid waivers already, but they’re so valuable that it’s worth emphasizing them here. We encourage all families to check if they qualify, as these waivers can provide extra financial assistance, even for those with higher incomes. Review your state’s laws and application steps to determine whether your family qualifies and how you might use these benefits.

Many states have waivers for home and community-based services (HCBS) for families with higher incomes. These waivers allow families to leverage access to Medicaid based on the child’s disability rather than income alone, providing help that might otherwise be out of reach, such as in-home caregivers, respite care, and specialized therapies.

State Grants and Nonprofit Assistance

We understand that not everyone will qualify for Medicaid, and that even for those who do, it may not cover everything a child with special needs might call for. Thankfully, many states recognize the unique financial requirements of raising a high need child and extend grants or funding for therapies and programs that traditional insurance may not cover. These grants pay for various supports, from occupational and speech therapy to specialized instructional systems and assistive devices. Each state has different criteria, so it’s worth checking with your local health department or disability services office to see what grants are available in your area.

Besides state-funded options, several nonprofit organizations offer financial assistance to cover specific therapy costs for children with developmental disabilities like autism. Organizations such as the United Healthcare Children’s Foundation and Autism Care Today have grants to cover expenses like medical treatments, therapies, and adaptive equipment. Many nonprofits also have scholarships for therapies, recreational programs, and other activities to improve a child’s quality of life and extend respite for families.

Some nonprofits offer direct financial help, while others focus on covering specific services, so it’s important to look into each organization’s mission and application requirements. Often, these companies prioritize families with limited income, so reaching out as soon as possible can give you a clearer understanding of any financial criteria or deadlines. This assistance from state and non-profit organizations can reduce financial stress and open access to therapies and services you might otherwise seem are out of reach—ensuring your child receives comprehensive and continuous support.

Organizations like Parent-to-Parent USA can be invaluable in locating services for your child and family. Parent-to-Parent USA is a national network that shares resources for families of children with special needs. If you’re seeking additional guidance, they can advise and connect you with a community that understands.

Supplemental Security Income for Children with Disabilities (SSI)

After you’ve explored Medicaid and nonprofit supports, evaluate Supplemental Security Income (SSI) as another meaningful option. While Medicaid can cover medical therapies, families of children with PDA often face many non-medical expenses, and SSI can contribute financial assistance to bridge these gaps. Supplemental Security Income (SSI) can be a game-changer for families with kids who have PDA and autism, covering more than just medical bills. The costs of raising a child with PDA often extend to everyday essentials that enhance comfort and security, such as sensory-friendly clothing for children who require seamless fabrics, or specialized home items like weighted blankets and swings. These items help children manage sensory sensitivities and be at ease in their environment, but they can be costly. Even groceries can cost more when special diets come into play. With SSI, families can better afford these everyday expenses, easing the financial strain on the household.

By applying for Supplemental Security Income (SSI) for Children with Disabilities, families can receive steady financial income to assist with both medical and non-medical expenses. SSI allows families to focus on nurturing their child’s development without the added stress of covering every cost themselves.

The Application Process and Timeline

Applying for SSI includes several steps, such as submitting documentation, undergoing evaluations, and waiting for a final decision. We’ll outline this process below, which takes about four to six months from start to finish, to give you a clearer sense of what to expect.

Gathering Documentation: The first step involves collecting medical and financial records. These records include official diagnoses from professionals, such as developmental pediatricians, psychologists, or psychiatrists, which must detail how autism affects your child’s daily functioning. You must also provide functional assessments—like those from speech or occupational therapists—that address specific communication, behavior, and self-care issues. Educational records, such as Individualized Education Plans (IEPs) and psychological evaluations, further show your child’s abilities and areas of needed support. Families must submit financial details regarding household income and assets.

Submitting the Application: Applications can be started through the Social Security Administration (SSA) either online, by phone, or in person at a local office. You’ll have to complete the Child Disability Report, which includes detailed questions about your child’s condition, treatment history, and daily life. During this phase, the SSA may also request a phone or in-person interview for further discussion.

SSA Review Process: Upon submission of your application, the SSA team reviews the documentation to determine your eligibility based on medical and financial criteria. During this time, an SSA representative may contact you for additional information or to arrange a consultative exam to assess your child’s condition further.

Receiving a Decision: The Social Security Administration sends a notification to your family by mail if SSI benefits are approved. If denied, you have 60 days to appeal the decision. Approvals often include retroactive payments to the date of the application, so don’t forget to look into this.

Monthly Supplemental Security Income (SSI) Payment for Minors

Supplemental Security Income (SSI) benefits depend on a family’s financial situation, but as of this book’s publishing, the Federal Base Rate (FBR) for SSI is $967 per month for individuals. The Social Security Administration may adjust this amount based on the family’s income, living situation, and the state’s supplemental benefits (if applicable). The monthly payment for children can fluctuate based on parental income and assets, but many families receive amounts close to this federal maximum or slightly reduced because of the factors outlined above.

How Families Might Use SSI Income for Children with Autism and a PDA Profile

Funds that families receive from SSI can be used for any purpose, offering flexibility to address various needs that may not be covered by Medicaid or insurance. While SSI doesn’t directly cover specific services or items, the income it provides allows families to choose resources that best support their child.

Here are some examples of how families with children with autism with a PDA profile use income from SSI:

Specialized Equipment and Technology: Families may use SSI funds to purchase items like sensory-friendly clothing, weighted blankets, or specialized bedding that improves comfort and sleep quality. They might also invest in tablets or software applications designed to enhance communication and learning, which can be beneficial for children who struggle with traditional forms of interaction.

Nutritional Needs and Special Diets: Some children on the autism spectrum, regardless of whether they have a PDA profile, have dietary restrictions or sensitivities. SSI income can help families cover the costs of specialized foods, supplements, or consultations with nutritionists to address the child’s nutritional needs, which helps promote their overall health and well-being.

Transportation and Travel Expenses: Attending appointments, therapies, or social activities can involve significant travel. SSI funds can cover transportation costs, whether it’s fuel for personal vehicles, public transportation fares, or vehicle modifications to accommodate the child’s needs.

Family Support and Education: Parents and siblings may benefit from training or workshops to better understand and support their family member with autism. SSI income can help pay for these educational opportunities, including courses on communication strategies, behavioral techniques, or stress management.

Recreational Activities and Social Integration: Participation in activities like art classes, music lessons, or community programs can aid in social skills development and personal enjoyment. SSI funds can cover these extracurricular activities that other programs may not finance, providing avenues for the child to explore interests and build relationships.

Home Safety and Adaptations: Families may need to make specific adjustments to their homes to ensure safety and accessibility. This could include installing specialized locks, fencing for outdoor spaces, or creating calming sensory areas within the home to help the child manage anxiety and overstimulation.

Assistive Animals: The costs associated with service animals or therapy pets can be substantial. SSI income can help cover expenses such as adoption fees, training, veterinary care, and ongoing maintenance, offering emotional support and assistance to the child.

Legal and Advocacy Fees: Navigating educational systems or accessing necessary services often requires legal assistance or advocacy. You can use SSI funds to pay professionals who help secure appropriate educational accommodations or fight for the child’s rights, making sure they get the support they are entitled to.

Respite and Family Activities: Beyond formal respite care, families might use SSI funds to plan outings or vacations tailored to their child’s needs. These activities provide relaxation and bonding opportunities that benefit the entire family.

To explore eligibility and apply for SSI, contact:

Social Security Administration: ssa.gov

National Disability Rights Network (NDRN): ndrn.org

These websites offer comprehensive and step-by-step guides on the application process.

Beyond the examples provided, recognize that SSI benefits offer families the flexibility to address any financial issues. Caring for a child with special needs often means parents may have to reduce work hours or miss work, leading to lost income. The extra money from SSI can help offset these financial challenges, whether it’s covering household bills, purchasing necessities, or covering unexpected expenses. This support allows families to focus more on their child’s well-being without the added stress of financial strain, ensuring they can meet both their child’s needs and maintain overall family stability.

Special Needs Trusts

Even after applying for Medicaid, pursuing non-profit assistance, and looking into SSI, you still must consider the long term. As a parent of a child with special needs, it’s natural to lie awake at night worrying about their future. Questions like, “How will they be financially secure when I’m gone?” or “Who will make important decisions on their behalf?” can be daunting and overwhelming. Many parents share these concerns, so it’s important to have a personal financial plan in place. You should create a plan that addresses your child’s financial security and appoint someone you trust to manage it on their behalf. Working with experienced wealth managers and fiduciaries can develop a comprehensive plan for your family’s long-term care and peace of mind.

A Special Needs Trust can be a key tool for safeguarding a financial future for your child with autism without affecting their eligibility for government benefits. Parents, grandparents, caregivers, and other individuals can fund the trust through savings, life insurance policies, or inheritances. This setup ensures the child can tap into additional financial support for therapies, healthcare, and quality of life expenses while preserving access to services through programs like Medicaid and Supplemental Security Income (SSI).

As a leading voice in disability rights, The Arc emphasizes the importance of Special Needs Trusts, explaining, “A Special Needs Trust can help plan for individualized care over a lifetime while protecting the child’s eligibility for public benefits.”

For a thorough overview, you might reach out to the following organizations:

A Special Needs Plan: aspecialneedsplan.com

Disability Rights Education & Defense Fund: dredf.org

National Association of Disability Representatives: nadr.org

Disclaimer: The information provided here does not constitute legal or financial advice. Because each family’s circumstances differ, it is crucial to seek advice from skilled financial planners or other experts who can provide tailored help.

Conclusion

As we conclude this chapter, I hope you feel more prepared to look into financial options that can help your family. The costs of therapies, medical treatments, and daily care can be overwhelming, but Medicaid, SSI, state grants, nonprofits, and other long-term planning choices can make these services accessible.

These resources go beyond covering costs; they work to protect that your child receives care and guidance to thrive. In the next chapter, we’ll explore educational options, like Individualized Education Programs (IEP) and 504 plans, providing you with the tools to advocate for your child’s success in school. Each step, from financial planning to educational assistance, adds another layer to the foundation you’re building for the future of your child.

CHAPTER 5

CREATING SUPPORTIVE SCHOOL ENVIRONMENTS: NAVIGATING INDIVIDUALIZED EDUCATION PROGRAMS (IEP) AND 504 PLANS

While financial planning assists with long-term security, creating an enriching school environment is just as important. We can thoughtfully customize accommodations for children through collaboration with teachers and administrators. Many books are available to help families work through the complexities of Individualized Education Programs (IEP), 504 Plans, and Early Intervention for younger children, so here, we’ll present a condensed overview. This chapter covers the basics of IEPs and 504 Plans, introduces low-demand approaches specific to school settings, and offers guidance to help you advocate for what your child deserves.

Understanding IEPs and 504 Plans

If your child has been diagnosed with autism, with or without a PDA profile, they may benefit from an Individual Education Plan (IEP) and a 504 Plan. These plans can work together by focusing on academic goals and detailing specific supports. For instance, an IEP might outline tailored learning needs. A 504 Plan can focus on classroom modifications—such as flexible deadlines or reduced pressure—to aid in managing anxiety and avoid sensory overload. These plans, when integrated, create a comprehensive system addressing both instructional needs and low-demand supports necessary for your child’s comfort and success in school.

Individual Education Plan (IEP)

The IEP process begins when a doctor, teacher, or sometimes even a parent refers a child for evaluation because of concerns regarding their education or behavior. The local school district then conducts a comprehensive assessment, often involving a school psychologist, special education teachers, and other providers, to better understand your child. If the school district determines the child is eligible under the Individuals with Disabilities Education Act (IDEA) the IEP team—composed of educators, specialists, and parents—develops a plan that outlines goals, services, and accommodations to enhance the child’s progress. The team reviews this plan each year to adjust to the child’s development and changing circumstances. An Individualized Education Program (IEP) for a child with PDA goes beyond checking boxes; it calls for a deep understanding and a thoughtfully designed plan that truly benefits them. Let’s delve into how this can take shape.

Foremost, it’s crucial that everyone involved in your child’s education understands PDA. PDA isn’t just another label; it represents a specific profile on the autism spectrum. Educators and staff should receive training to recognize how PDA manifests in your child, understand what triggers their unease, learn how they respond, and apply the best approaches to support them.

Adaptability becomes the cornerstone of their instructional environment. Instead of rigid requirements, the curriculum should adapt to meet your child’s current needs. Teachers can suggest choices in activities to give your child a sense of control and customize the pace of new challenges as needed. When we empower children instead of pressuring them, their natural curiosity and love for learning can blossom.

Communication is another critical piece of the puzzle. Using indirect language can make a world of difference. For instance, phrases like “I wonder if you’d like to try this...” can be less intimidating than demands. Positive reinforcement centered on their strengths and interests can boost their engagement.

Teachers and caregivers should incorporate practices to reduce anxiety into daily routines. These techniques could include building safe spaces where your child can retreat when overwhelmed, or integrating mindfulness practices like deep breathing exercises to aid with self-regulation. Sensory options, such as noise-canceling headphones or a quiet corner with soft lighting, can relieve overstimulation.

For behavioral support, traditional concepts that rely on demands or consequences might not work as well and can escalate anxiety. Instead, a non-confrontational practice that involves collaborative problem-solving can be beneficial. When you engage your child in discussions about managing challenging situations, it can inspire them and minimize resistance. Collaboration continues beyond the school doors. Regular dialogue between parents and the educational team ensures consistency and provides a care network for your child. Involving specialists like psychologists or occupational therapists can offer additional layers of guidance and insight.

It’s important to keep in mind that an IEP is a living document. Regular reviews and adjustments affirm that the plans in place continue to meet your child’s developing progress. Tracking progress requires collecting observations and assessments, a process that also identifies areas needing further attention. By approaching your child’s IEP with flexibility, empathy and a collaborative spirit, you’re not just creating a plan—you’re building a foundation for them to thrive both academically and emotionally. The aim is to gain visibility into their world and shape a model that honors and celebrates their individuality.

504 Plan

If you’re looking to secure adaptations at school for your child with PDA, that are both straightforward and adaptable, a 504 Plan may be an ideal solution. Unlike the more involved process of obtaining an IEP, a 504 Plan is a quicker, less complex path to safeguarding that your child has help to succeed in the classroom.

When drafting a 504 Plan, recognize that it focuses on making the learning environment accessible and supportive. Referrals for a 504 Plan can come from you, a teacher, or a healthcare provider, if there’s a concern about your child’s ability to perform in school because of a disability. School staff, such as a counselor or general education teacher, typically conduct a less comprehensive evaluation than is necessary for an IEP. They will determine whether your child has a physical or mental impairment that substantially limits one or more major life activities. If the school team determines your child is eligible, they will work with you to create a 504 Plan that outlines necessary accommodations.

For a child with PDA, the goal is to create an instructional environment that feels safe, adaptable, and responsive. These measures include options like offering a quiet space or access to sensory tools to help manage sensory overload and maintain focus. Imagine your child having a cozy corner in the classroom where they can retreat if things become too stressful, giving them control and a way to self-regulate. Incorporating anxiety-reductions “systems” is also essential. The focus is on giving them autonomy in moments that might otherwise be overwhelming.

Consider practical adjustments that align with your child’s specific struggles. If reading aloud in class triggers severe apprehension, the 504 Plan could include alternatives like participating in smaller groups or recording reading privately. You could suggest to the school, “My child is anxious about reading aloud. Would it be possible to explore options like smaller groups or recorded readings to help them feel more at ease?” These modifications help reduce pressure and support their ability to engage with learning in a way that is comfortable.

Remember, the essence of a 504 Plan is flexibility and understanding. The goal is to work with the school to shape an educational experience that fits your child. By creating encouraging conditions for learning, you’re not only tackling obstacles but transforming them into opportunities to build confidence and resilience.

Components of IEP and 504 Plans

You can ensure your child’s school conditions are tailored to them by understanding the role of a Functional Behavior Assessment (FBA) and a Behavior Intervention Plan (BIP) within both Individualized Education Programs (IEP) and 504 Plans. This goes beyond simple modifications, offering a structured blueprint to address behavioral concerns affecting your child’s education or emotional well-being. We’ll briefly review how these approaches function within IEPs and 504 Plans below, showing how they support personalized education.

Functional Behavior Assessment (FBA)

Both Individualized Education Programs (IEPs) and 504 Plans can include a Functional Behavior Assessment (FBA) to address specific behavioral concerns that may impact your child’s ability to succeed in school. A FBA is a structured process that aims to identify the “why” behind certain behaviors, focusing on what triggers the behavior and what may reinforce it. For a child with autism and a PDA profile, an FBA can be helpful, because it addresses the need to reduce demands, and can uncover underlying anxiety or sensory triggers.

During a Functional Behavior Assessment (FBA), a team—often comprising educators, behavior specialists, and sometimes parents—collects data through observation, interviews, and behavior tracking. This data can aid in identifying what triggers a behavior (such as a loud environment or unexpected transitions) and reveals the behavior’s purpose (like avoiding a demand or seeking sensory relief). Once the assessment is complete, the team uses the findings to create a Behavior Intervention Plan (BIP), outlining proactive ways to assist the child. For example, for a child with a PDA profile, the BIP might include low-demand concepts, sensory breaks, or alternative ways to express discomfort, making school more predictable and manageable.

A Functional Behavior Assessment can serve as the foundation for behavior in both IEPs and 504 Plans, emphasizing practices that reduce anxiety and respect the child’s desire for autonomy. Families can also collaborate with the school to confirm these plans include realistic, customizable goals, that reflect their child’s abilities and areas of difficulty. For further direction, resources like Vanderbilt University’s FBA Guide and the National Professional Development Center on Autism Spectrum Disorder have useful insights for parents and educators navigating behavior planning for children with autism and related profiles.

Behavior Intervention Plan (BIP)

When crafting a Behavioral Intervention Plan (BIP), remember to focus on flexibility and strategies that minimize requests. Children with PDA often respond better to open-ended invitations rather than rigid “this or that” choices, as the latter can be restrictive.

Joint effort makes a Behavior Intervention Plan (BIP) possible between parents or guardians, teachers, special education staff, and other professionals, such as school psychologists or occupational therapists. The team collaborates to adapt the BIP to the child and incorporates different viewpoints. The team should review the BIP regularly, typically every 3–6 months, to make sure it remains useful in supporting the child. If new issues emerge, the team may opt for more frequent reviews to keep the plan responsive and on track.

One technique used in a BIP is to use open-ended, non-directive choices. To illustrate, a teacher could shift from providing options to making open-ended suggestions. Rather than asking, “Would you like to start with reading or math today?” they could put it as, “I’m thinking of beginning with something relaxing—what do you think?” This approach reduces pressure and gives the child gentle guidance, helping them be more at ease with the choices available. Or they could mention, “Is there something you’d like doing first?” This phrasing helps the child decide without feeling boxed into limited options. Similarly, rather than asking “Do you want markers or colored pencils?” a teacher might say “We have markers and colored pencils here—pick whatever is best for you right now.” This language removes the pressure to make a specific choice, motivating the child to move at their own pace.

Transitions between activities can be challenging for children with PDA. Advance warnings, like “In five minutes, we’ll switch to our art project,” allow them time to prepare for the change. Consistent routines and familiar cues are crucial, as they add predictability to the day. A successful BIP also focuses on building trust and positive relationships with educators, as these connections are vital to your child’s success. Consistent and calm communication and empathy create a nurturing atmosphere where your child feels understood. Educators can further strengthen these relationships by incorporating appropriate humor and demonstrating understanding, making interactions easier for the child. 

Incorporating self-advocacy within the BIP helps your child with developing techniques to manage their anxiety. Establishing a code word or signal they can use when overwhelmed gives them control over when to take a break, allowing them to deal with their emotions proactively. Teaching relaxation methods, like deep breathing exercises, equips them with coping skills they can use independently.

The Behavior Intervention Plan (BIP) should also include plans to support social situations. Practicing scenarios can help your child feel comfortable and prepared for group environments as these peer relationships can enhance their sense of belonging. Incorporating their interests in learning offers another useful approach. For example, if your child is interested in ships, incorporating navy-related themes into lessons can make schoolwork more enjoyable.

A Behavior Intervention Plan (BIP) is most effective when it remains adaptable and responsive to the child’s progress. Regular reviews guarantee plans remain aligned with current needs. Consistent feedback from those who interact with the child daily imparts key observations to be used to refine the plan. By focusing on actionable steps together and maintaining a collaborative approach, you create a dynamic BIP that works for your child. 

For further resources and insight into crafting behavior intervention plans tailored for children with PDA, PDA North America has a range of materials that can provide a valuable framework and help. This collaborative effort makes it easier for others to understand your child, paving the way for a fulfilling academic experience.

Guiding the IEP and 504 Plan Process

Even after having an IEP or 504 Plan in place, it is necessary to stay actively involved in your child’s growth and refine when appropriate. As a parent, your role in directing the IEP or 504 Plan is central. Preparation is crucial. Come to meetings with notes of your child. Sharing examples of what has worked at home or in previous school settings, as well as what hasn’t, ensures that the team can build a supportive plan.

Working closely with your child’s teachers and school staff ensures the plan is effective and realistic. You might say, “I’d like to schedule a quarterly review of [Child’s Name]’s IEP to assure the accommodations continue to work and discuss any changes needed.” Open communication keeps the plan dynamic and responsive to evolving circumstances.

Regular follow-ups are beneficial in verifying the school implements the outlined changes. You could request, “Can we arrange for regular progress reports? I’d like to stay updated on how [Child’s Name] is doing and address any additional issues as they arise.” Keeping the lines of dialogue open ensures everyone stays aligned with your child’s development.

One approach we took was to collaborate with my daughter’s school to create an IEP that included modifications like extra time for assignments, access to a quiet space, and flexible scheduling. We confirmed the school staff received specialized training in PDA to better understand and respond best to her.

Low-Demand Approaches with Social Stories and Visual Supports

For children with PDA, school can seem like walking a tightrope through demands and expectations. Each step brings a new challenge, making it hard for them to feel safe or stable. New instructions or changes in routine can increase anxiety, often resulting in avoidance behaviors or meltdowns. Visual supports and Social Stories are especially useful in these moments, helping to reduce stress and providing structure. Unlike verbal directions, which can seem intrusive and provoke a fight-or-flight response, these aids offer softer, less confrontational engagement in the world.

Visual supports and Social Stories together offer predictability and autonomy that help children with PDA handle their day with confidence. By helping the child to process information at their own pace, these techniques remove the immediate pressure to respond or comply. Children can check schedules for a consistent reference, allowing them to track upcoming events and prepare whenever they want to. Social Stories go a step further, breaking down new or difficult situations into digestible, non-threatening narratives that serve as a guide to what to expect. Let’s explore how we can incorporate these solutions into the school day.

Low-Demand School Routine Example

Teachers can display a visual schedule near the classroom entrance at the start of the school day. This schedule outlines the day’s activities and highlights any adjustments, like a visit from the principal or an upcoming art project. For a child with PDA, this predictable outline provides a comforting sense of what to expect, allowing them to be prepared for the day ahead. If there’s an unexpected change, like a substitute teacher, a simple update on the schedule can serve as a heads-up, preventing the child from being blindsided.

A personal copy of the schedule at their desk can also be helpful. With a physical reference they can check as needed, the child gains autonomy to tackle their day. It’s less stressful than being repeatedly told what’s coming next, giving them the freedom to move through their day at a manageable pace.

Preparing for Transitions with Social Stories

Another difficult time for children with PDA is preparing for transitions. Progressions between tasks, such as transitioning from story time to lunch, are often anxiety-inducing. Social Stories are gentle ways to prepare for these occasions. In order to promote a smooth transition, the teacher might review a Social Story outlining the cafeteria routine step-by-step before lunch. This encourages the child to expect the setting, noise level, and sequence of events—a reassuring preview of what’s coming. This structured approach reduces the unknown and offers a script the child can internalize. Instead of telling the child to “hurry and get in line,” we ease them into the routine, ensuring they know what will occur next and when.

Handling Group Activities

Group activities can also be a challenge for children with PDA, as these situations are often unpredictable and laden with demands. Social Stories and visual supports can help get your child ready for these interactions. A Social Story designed for group work might lead a child through the steps of sharing tasks, actively listening to peers, and responding appropriately when others speak. This structured narrative can make group activities accessible, giving the child a clear understanding of how to collaborate. It could also provide options for coping if the child is overloaded, like stepping away for a moment or asking for help. Flowcharts or outlines can assist your child in understanding what to expect and how they fit within the structure of the group. This type of organized format provides clarity without pressure.

Teachers and peers can use declarative language to enhance this preparation during group activities. This process maintains a low-pressure environment, focusing on observations rather than demands or questions. For instance, a teacher could express it as, “I wonder what ideas everyone will bring to the project,” rather than asking, “What’s your idea?” This comment creates an open-ended atmosphere where the child can choose to contribute without being prompted. Similarly, a peer might say, “I’m curious what everyone thinks about this,” rather than directing attention to the child with PDA.

Teachers and caregivers can combine declarative language with Social Stories and visual supports to help children feel safe and understood. For example, if a child is struggling with sharing tasks, the Social Story might encourage them by explaining that each person has a role and that they can always ask for a break if overwhelmed. During the activity, the teacher could reinforce this with a statement like, “I’m noticing everyone seems focused on their part; it’s interesting to see how each person’s role comes together.” This reinforcement reflects the scenarios in the Social Story and recognizes the group’s efforts, singling no one out or making direct requests.

With Social Stories, visual supports, and declarative language combined, groups become less demanding. Through these methods, group work becomes a structured and uplifting environment where the child takes part and is at ease and develops positive connections with others.

School End-of-Day Transition

As mentioned earlier, transitions are especially stressful for children with PDA. Solutions like countdown timers and scheduled cues can ease the transition to dismissal as the day ends. You can use a timer to signal when it’s time to pack up, presenting a gradual reminder that the school day is winding down. This structure facilitates a smooth shift, reducing the anxiety that unexpected changes can bring. A Social Story about the end-of-day routine can offer additional guidance, explaining what steps they’ll use to practice for going home—packing their backpack, saying goodbye to the teacher, and walking to the bus or pickup area.

For children with PDA, these practices are more than just tools; they are lifelines. Visual supports and Social Stories help them take part in school without the constant pressure to respond to demands. With these tools, children are more empowered, better equipped, and more able to engage with their world. By integrating these practices into the school day, educators and parents can build a learning environment that honors the child—fostering success in a way that respects their unique style of engagement.

When Schools Use Restraints or Contact Law Enforcement

Despite implementing IEPs, 504 Plans, and collaborative low-demand techniques to support our children at school, there may still be times when these efforts fall short. Staff at the school might fail to implement the supports, or situations might escalate unexpectedly. In such moments, incidents like physical restraint or even police involvement can occur—leaving you and your child scared, vulnerable, and unsure of what steps to take next.

Imagine getting a call that someone physically restrained your child during a meltdown. You rush to the school, heart pounding with worry and frustration. It’s heartbreaking to watch your child suffer, and you may experience a mixture of anger and powerlessness. In these critical moments, understanding your rights and knowing how to support your child becomes crucial.

It’s important to know that laws regarding the use of physical restraints and seclusion in schools vary by state. However, federal laws like the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act require schools to provide Free Appropriate Public Education (FAPE) in the least restrictive environment, emphasizing positive behavioral supports when dealing with challenging behaviors. If school staff restrained your child, try to stay calm and gather as much information as possible. Schools are required to tell parents right away if they have used restraint or seclusion. If the school has not notified you, contact them immediately and request a detailed report. Determine if your child sustained any injuries and request a copy of the school’s restraint and seclusion policies to verify that they followed correct procedures.

The next step is to contact the school. Schedule a meeting with administrators, teachers, and staff involved in the incident. Share your concerns about how the situation was handled and how it affected your child. Seek to understand why less restrictive methods weren’t effective, and what de-escalation training the staff has received. Ask how they plan to prevent similar incidents in the future. This incident suggests that the current support plan doesn’t meet your child’s needs—so it’s important to reassess and update the plan immediately. Request an IEP or 504 Plan meeting to revise strategies, focusing on positive approaches and prevention. Work with the school to update the Behavior Intervention Plan (BIP), incorporating techniques that emphasize de-escalation and address sensory challenges, ensuring the plan includes sensory breaks and safe spaces.

It can make a difference for your child to advocate for staff training on autism, PDA, and the use of non-restrictive interventions. Resources from reputable organizations like PDA North America can enhance staff understanding. Working with the school to create a crisis plan can also be helpful, outlining simple procedures for dealing with behavioral emergencies. You should emphasize the use of non-physical interventions and specify how and when you’ll be contacted during emergencies.

A collaborative relationship with the school is important. Arrange regular meetings with teachers and staff and encourage a team approach that includes any outside therapists involved in your child’s care. Educate yourself about special education law through resources like Wrightslaw, which offers valuable information on child and parental rights. Connecting with other parents through support groups, such as those offered by The Autism Society, allows for shared experiences and a supportive community.

When you understand your legal rights, you can advocate for your child. Each state has specific rules on restraint and seclusion. You can check your state’s laws through resources like the U.S. Department of Education’s summary of state laws. Organizations like Disability Rights Education & Defense Fund (DREDF) offer guidance to empower you to understand your rights. It can also be helpful to seek advice from special education advocates; groups like the Council of Parents Attorneys and Advocates (COPAA) can connect you with professionals specializing in special education law.

If the school contacts law enforcement regarding your child, it can be incredibly stressful. Ensure your child’s safety by going to the school as soon as possible to comfort them. Try to remain calm, as your presence can help de-escalate the situation. Communicate with the authorities by asking what happened and what steps are being taken. Advocate for your child by informing the officers about your child’s disability and how it may affect their behavior. Collect all documentation related to the incident, including school and law enforcement reports, and keep detailed records of names, dates, and times. It’s crucial to know the legal consequences, so get acquainted with your child’s rights when dealing with the police. An attorney with expertise in special education law can give you advice on the best way to proceed.

When working with the school, be assertive, yet calm. Clearly state your concerns and what you’re requesting, focusing on keeping your child safe. Document all communications, meetings, and plans to maintain an accurate record. Prepare for meetings by knowing your goals and consider bringing someone with you for support.

Facing situations where your child has been restrained or involved with law enforcement is challenging. Remember that you’re not alone, and there are steps you can take to support your child. You are your child’s strongest advocate, and your involvement is crucial in securing the help they need. Awareness of your rights enables you to make informed decisions, and collaborating with the school can lead to positive changes. By taking these actions, you’re not only helping your child, but also contributing to improvements that can benefit other children in similar circumstances. Stay persistent and know that your efforts have a meaningful impact.

Disclaimer: The information provided here does not constitute legal advice. This section offers general insights and resources for navigating challenging situations, such as when schools use restraints or involve law enforcement. Laws and regulations vary, and specific actions depend on your unique circumstances. We encourage you to seek legal assistance if you find yourself in similar situations, as legal professionals can provide personalized advice tailored to your case.

Early Intervention Services—Children Under Age Three

While we’ve covered IEPs, 504 Plans, and tools for school-aged children, along with what to do when things go wrong, it’s important not to overlook younger kids. The sooner a child and their family can get aid, the better. Although much of this book has focused on school resources, there are also supports available for younger children to ensure they receive a strong start. Early Intervention can be impactful for children under three, providing custom sensory and behavioral strategies to help them with big emotions. Simple tasks like putting on shoes or transitioning between interactions can spark big feelings, but Early Intervention can provide needed sensory and behavioral help.

Early Intervention can include occupational therapy techniques, like introducing calming solutions like weighted blankets, bouncing exercises, or quiet spaces—which offer comfort during overstimulating times. Meanwhile, behavioral methods emphasize age-appropriate emotional regulation through play, reassuring children to express their feelings safely and practice calming practices like deep breathing. These foundational strengths create a sense of security and prepare them for positive relationships as they grow.

Language development is another area where Early Intervention can be invaluable. Children with PDA often resist direct requests and may struggle to communicate without being overwhelmed. Early speech therapy sessions can use play-based techniques to encourage your child to engage in ways that are natural and non-threatening. A therapist might use a favorite toy to prompt interaction, guiding your child to practice expressing themselves through familiar encounters. This low-demand method helps them gain conviction in their expressive skills, making it easier to connect with others. An early start provides your child with coping tools to navigate their world confidently, preparing them for smoother transitions into preschool and beyond.

To access Early Intervention, discuss your concerns with your child’s pediatrician. If you’ve noticed big reactions to routine activities or observe in your child the intense desire for control in everyday situations, bring these observations to the doctor. You might say, “We’ve seen that [Child’s Name] has strong responses to transitions and daily tasks, and we’re interested in exploring Early Intervention services to support these needs.” The pediatrician can give a referral, so you can meet with your local Early Intervention program.

Many Early Intervention benefits extend to parent training, providing guidance to foster your child’s progress at home. Regular practice of what they learn in therapy can boost their self-confidence. You might ask, “What parent training options are available to help us assist [Child’s Name] with the strategies they’re working on?” Early Intervention services vary by state and may be available at home or through your local public school. By contacting your county’s Early Intervention program, you can find resources that suit your child, providing them with skills for a strong start in life.

Effective Advocacy Techniques

Now that we’ve addressed various accommodations for your child at school and even for younger children, we need to lean into advocacy to ensure support. Advocating for your child involves clear communication, persistence, and a deep understanding of their needs.

Building a collaborative relationship with your child’s teacher is the first step. Regular discussion with the teacher aids them to better understand your child’s difficulties and the approaches that might work best. You might reach out and mention: “I’d love to establish regular check-ins to discuss how things are going for [Child’s Name]. These meetings will encourage us to stay aligned and make adjustments to assist them better.”

It’s also important to invite teachers to offer their observations. Ask what they see working well in the classroom and where your child might benefit from additional help. You could say: “I value your insights. Can you share what’s been working well for [Child’s Name] and where they might benefit from extra assistance?”

Another key aspect of advocacy is confirming that educators understand PDA, especially since it may be a less well-known diagnosis. By sharing materials, teachers can understand and support your child. Websites like The PDA Society and other books dedicated to PDA and autism education (like this one), can be great starting points. You could phrase it like this: “I realize PDA might be a new concept, so I’ve compiled some information to help the team understand [Child’s Name] better and how to support them best. I hope this will be useful as we work together.” If concerns arise or you feel your child requires additional resources, taking quick action is critical.

Here are some steps to consider:

Contact school administration: If you’re not seeing progress with the teacher, it may be necessary to involve the principal or special education coordinator to collaborate on solutions.

Be clear about your child’s needs: To strengthen your case for certain modifications you could mention: “I have a letter from [Child’s Name]’s therapist recommending these accommodations. I’d like to discuss how we can confirm they’re implemented.”

Gather documentation: To strengthen your case for certain modifications you could mention: “I have a letter from [Child’s Name]’s therapist recommending these accommodations. I’d like to discuss how we can confirm they’re implemented.”

Advocacy hinges on thorough documentation. Keep detailed records of communications, meetings, and decisions. After each meeting, send a follow-up email summarizing the discussion and the next steps. You could write: “Thank you for meeting with me today. To recap, we agreed that [Child’s Name] will receive [specific accommodation] next week. Please let me know if I missed anything.”

Maintaining a log of incidents—where teachers didn’t administer accommodations, or your child faced difficulties—can also be valuable in future meetings. You could say, “I’ve been keeping track of situations where [Child’s Name]’s accommodations weren’t applied. I’d love to review this to find a solution together.”

Many tools and programs are available to empower you in advocating for your child. Understood.org shares advice for advocacy, while Wrightslaw provides comprehensive guidance on special education law and the IEP process. These materials will enable you to build effective IEPs and 504 plans and uphold your child’s rights. Keep in mind that you are your child’s strongest advocate. Trust your instincts and speak up if you believe the school isn’t providing the support your child deserves.

Conclusion

This chapter covers ways to create a nurturing and adaptable school environment that promotes growth and well-being. Whether through Individualized Education Programs (IEPs), 504 Plans, or low-demand styles, the goal has been to equip you with practical tips for ensuring your child is safe, seen, and ready to engage in learning on their terms. It’s reassuring to know that school can become a place where educators celebrate your child’s qualities and meet their needs with care and empathy, if they have the right help.

In the future, we will look into skill-building frameworks designed for children who might struggle in conventional school environments. For some families, choices like homeschooling or unschooling offer the adaptations and low-pressure requirements that make all the difference. In the next chapter, we’ll explore these paths, giving you alternatives to find the best fit for your child’s growth and success.

CHAPTER 6

EMBRACING HOMESCHOOLING AND UNSCHOOLING—A NEW EDUCATIONAL JOURNEY FOR YOUR PDA CHILD

In the previous chapter, we explored ways to guide your child within a traditional school setting. While these strategies can work, some children still find school overwhelming. What if just the thought of school sends your child’s anxiety into overdrive? For children with PDA, the very idea of attending school can trigger intense worry, making it difficult for them to handle transitions, engage with peers, and manage sensory overload. Parental anxieties bubble to the surface, leaving you concerned for your child’s well-being. If traditional schooling continues to feel like running uphill, it may be time to explore other arrangements that could become a more supportive educational environment.

The decision to homeschool or unschool doesn’t come easily. You might be left with no other choice after standard school settings have failed. If the school has restrained your child, or if authorities have been called multiple times, you may reach a point where the risks and difficulty of conventional schooling are too great. While it’s not the path every family envisions, homeschooling or unschooling can offer a safe, adaptable, and enriching option for children.

In fact, around 70% of families with PDA children in the U.S. consider homeschooling as an alternative. This is because conventional schooling can exacerbate stress, making the education experience more like battlegrounds than places of growth. This chapter delves into homeschooling and unschooling as frameworks to give flexibility and child-led structure. In this section, we’ll explore how homeschooling and unschooling can nurture your child’s curiosity, and reignite their love of learning, even during times of autistic burnout.

Why Traditional Schooling Can Be Challenging for Children with PDA

Children with PDA often have anxiety when navigating conventional schooling. Daily routines, complex instructions, and required social interactions can sometimes create unbearable pressure. This relentless demand cycle can lead to chronic avoidance behaviors, and over time, escalate into what’s known as autistic burnout—a state of intense emotional, physical, and mental exhaustion.

Autistic burnout isn’t simply tiredness; it’s a profound depletion of resources because of sustained stress or overstimulation. When a child experiences burnout, you may notice signs like chronic fatigue, where exhaustion persists despite rest, and negatively affects your child’s ability to take part in life. Autistic burnout may also cause a loss of mastered skills, whether in language, self-care, or academics—causing regression. Sensory sensitivities can increase sharply; stimuli like light, sound, or touch, once manageable, can become overwhelming. It’s also typical to withdraw from social connections. Pulling away from others is also common—activities that once brought joy might now seem draining, leading to reduced engagement with both friends and family.

Understanding these signs is crucial because they’re signals that the current environment exceeds the child’s capacity. For many families, recognizing these burnout patterns can be the catalyst for exploring flexible skill-building options, such as homeschooling or unschooling. Homeschooling and unschooling offer self-directed learning opportunities and an adaptable structure that families can tailor to their child’s comfort.

Rethinking Education

Traditional schooling often emphasizes conformity, schedules, and compliance—all of which can lead to anxiety for a child with PDA. The daily stresses of homework, timed tests, and connecting with peers can seem overwhelming. For our family, the tipping point came when my daughter began having frequent meltdowns at school. Teachers labeled her as defiant and uncooperative, but I knew there was more to the story; she was struggling, and the school setting wasn’t meeting her needs. That’s when we realized that education doesn’t have to happen within the four walls of a classroom. Children learn naturally in any setting, especially when they’re motivated and interested.

Definitions, Benefits, and Blended Approaches

At its core, homeschooling involves parents supporting their child’s education at home, with a curriculum they select and adjust to the child. Parents can customize this structured concept, creating flexible schedules and allowing children to learn at their own pace. This can be a relief for PDA children, who struggle with strict timelines and constant evaluations.

Unschooling, a more relaxed philosophy within homeschooling, embraces the idea that children are naturally curious and capable of directing their own learning. This method encourages exploration based on individual interests, helping kids grow at their own pace and in ways that resonate with them. In unschooling, there’s no set curriculum, no fixed lessons—just the freedom for children to explore what interests them on their own timeline. For children with PDA, this strategy is vital, as it honors their need for independence and prevents the stress from constant expectations. Instead of adhering to rigid expectations, unschooling makes learning flow naturally, creating a space where kids can engage on their own terms, nurturing both curiosity and determination. A blended model works well for many families. For example, you might provide a structured curriculum for subjects like math or reading, while leaving room for exploration in areas of personal interest, like science or art. 

Homeschooling is legal in all 50 states, yet each state has its own set of requirements, so it’s important to familiarize yourself with guidelines specific to where you live. This awareness can ensure your child’s environment aligns with both state regulations and your educational goals from the very start. By visiting the Home School Legal Defense Association’s website, families can access the laws and processes for their state, equipping them with all the information to begin homeschooling with confidence. With this knowledge in hand, you can facilitate a smooth and effective homeschooling arrangement, tailored to meet both state standards and your child’s preferences.

Blended Learning for Children with PDA

Children with PDA often resist requests and structured expectations. Unschooling can be beneficial, because it minimizes expectations and allows the child to engage in skill-building activities on their own terms. 

Our Experience

We started with unschooling to relieve the immediate pressure our daughter experienced. She spent her days exploring interests like drawing, building with LEGO bricks, and watching animal documentaries. As her stress decreased, we introduced structured elements, always providing her a chance to have a say in what and how she learned.

The Role of Electronic Devices in Self-Regulation and Learning

For many children with PDA, electronic devices offer a haven—a predictable and controllable environment that can ease anxiety. Technology can provide calming sensory input and support self-directed exploration. Research tells us that purposeful use of technology can enhance mental health, especially in autistic children. Interaction with devices and games can create structured opportunities for children to practice problem-solving, make choices, and have a sense of control—all important benefits when technology is used mindfully and in balance. While technology can offer many benefits, it’s important to manage its use carefully to prevent it from becoming addictive. My daughter, for example, found comfort in her tablet. She used it to watch educational videos, play interactive games, and design digital art. It became a self-regulation tool, allowing her to decompress after stressful moments. Managing this topic has been delicate, as her electronic device provides many benefits but can also can quickly become addictive if not managed appropriately.

Here are some ways to cultivate a healthy relationship with technology:

Collaborative Guidelines: Start by involving your child in setting rules for device use. When you create rules together, your child can sense more responsibility and be more in charge. You could agree on specific screen use, or how to decide when it’s time to take a break. By setting these boundaries early on, working together, we empower them with feeling in control and promote self-management.

Quality Content: Prioritize content that aligns with your child’s interests and growth. If they love animals, look for apps with lessons on wildlife or nature documentaries that spark their curiosity. Choose games that promote creativity, problem-solving, or skill-development. Screen time becomes enjoyable and enriching when the content aligns with their natural interests.

Incorporate Breaks for Physical Activity: Encourage breaks for movement or sensory play, which are essential for balancing screen time. A quick dance party, a walk outside, or some tactile play with clay or sand, can reset focus and provide a healthy outlet for sensory needs after a long educational video or game.

Modeling Behavior: As parents, we often underestimate the power of our actions. Our children learn by watching us. When they see us practicing healthy screen habits—putting devices away at family meals, engaging in hobbies that don’t involve screens, and prioritizing real-life interactions—children understand the importance of balance in their own routines.

Thoughtful implementation of technology can bring peace for kids with PDA. This comes when they have the room to discover, to rest, to be in control, and to express themselves. With balanced and open communication, we can assist our children in developing a healthy relationship with technology.

Self-Paced Online Learning Options

With screen time shown beneficial when used mindfully, let’s turn to self-paced learning programs as a flexible option for education and skill-building. These programs let children learn at their own speed, easing the pressure of strict deadlines and rigid schedules. By allowing children to move through content as they’re ready, these options can reduce anxiety and give children control over their learning journey, free from the stress of keeping up with a classroom.

Self-paced online programs also support the whole family by providing a schedule that adapts to your routine. You can create a structure that fits your child’s needs while adjusting for their energy levels and family commitments. This approach balances flexibility with consistency, helping your child stay aligned with traditional academic standards, making any transition back to a conventional school setting smoother.

The following section presents examples of self-paced online programs that promote a child’s growth.

Here are some platforms for families to research and consider:

Power Homeschool: A K-12 program with interactive video lessons, helping children to explore topics visually and at their own pace. Visit: powerhomeschool.org.

Time4Learning: This platform uses multimedia lessons to make subjects engaging and interactive. Visit: time4learning.com.

Outschool: With live classes on unique topics, your child can explore interests ranging from art to coding. Visit: outschool.com.

MiAcademy:An accredited curricula for K-12 students, allowing learners to progress through lessons at their own speed. Visit: miacademy.co/#/.

Khan Academy: Known for its instructional videos and practice exercises, this platform covers various subjects and has children revisit concepts at their leisure. Visit: khanacademy.org.

This list represents a mere snapshot of programs designed to promote curiosity-driven education and provide structure when desired. These resources help children in exploring and discovering without being confided by rigid expectations. There are many countless other programs available online, and we encourage you to explore additional options.

How to Incorporate Self-Paced Online Learning into Daily Life

Flexibility is key when incorporating self-paced online learning into your child’s routine. By letting your child take the lead, you can create an atmosphere that is both natural and engaging. For instance, after breakfast, you might offer a gentle invitation: “Would you like to explore one of your online courses today?” If they’re not interested, move on without pressure.

Our family also kept a list of topics my child wanted to explore, so if she showed curiosity, we’d review our list to find related courses or videos to dive into together. Timing was manageable. Some days, my daughter would spend hours immersed in a subject; other days, she’d prefer quiet time or hands-on activities. I stayed involved by watching videos with her or taking part in projects. Working together built a shared enthusiasm and strengthened our connection.

Practical Management Strategy – P.A.N.D.A.

As we explore homeschooling and unschooling, it’s the perfect time to lean into the P.A.N.D.A. approach—a practical, expert-crafted strategy developed by educational consultants Ruth Fidler and Phil Christie, that can serve as a reliable guide in daily learning. Designed to make routines manageable and supportive, P.A.N.D.A. is especially valuable for children with unique needs. It stands for Pick Battles, Anxiety Management, Negotiation and Flexibility, Disguise and Manage Demands, and Adaptation. Proactively addressing your child’s anxiety-driven need to avoid demands. By integrating the P.A.N.D.A. concept into homeschooling, you can create a flexible, responsive learning environment that respects your child while supporting their growth and independence.

First, Pick Battles encourages parents to prioritize which demands are key and which can be let go. This reduces unnecessary confrontations that can escalate anxiety. Anxiety Management focuses on recognizing signs of stress and implementing calming techniques to promote peace and confidence in the child. Negotiation and Flexibility, involves being open to compromise and adapting to meet the child’s expectations—empowering them, and promoting a sense of control and cooperation. Disguising and Managing Demands, suggest presenting requests indirectly, such as turning tasks into games or offering choices, to lessen the perception of pressure. Finally, Adaptation highlights the importance of modifying the environment and style based on what works best for the child. 

While we’ve woven methods aligned with the principles of P.A.N.D.A. throughout this book, we wanted to take this moment to name it. Application of the P.A.N.D.A. method at home can significantly enhance your homeschooling and unschooling experience.

Activities During Homeschooling and Unschooling

Now that we’ve explored various options for structuring your child’s routine, let’s delve into self-paced methods. These approaches build a natural rhythm that aligns with your child’s interests, supporting a personalized experience. Each day can be an adventure, with learning unfolding organically rather than bound by a strict schedule. Here, we’ll highlight a few snapshots of daily life for homeschooling and unschooling families, illustrating how these systems encourage creativity, adaptability, and independence.

A Day in the Life of a Homeschooling and Unschooling Household

A relaxed pace characterizes the typical day for families who practice homeschooling or unschooling, allowing for natural moments of bonding and education. Breakfast can become a time to discuss dreams or plans for the day without the pressure of deadlines. One morning, a child’s interest in baking might lead to an experiment involving measurements, the science behind baking powder, and decorating cupcakes—a blend of math, science, and art.

After breakfast, children might retreat to a cozy nook with pillows, books, and a tablet. Some days, they might explore courses on platforms like Khan Academy. Other days, they might watch documentaries on marine life. An afternoon could involve creating a mural of the ocean in the living room, after an excursion to the library to gather books on marine biology. Families might visit museums during off-peak hours to avoid crowds. A quiet hour at the science museum could spark a fascination with natural wonders. This curiosity may lead to weeks of exploring rock collections, creating nature-inspired art, and researching unique ecosystems.

Evenings are for winding down. Families might prepare dinner together, turning it into a collaborative night where children experiment with recipes. Before bed, they might read a chapter from a favorite book, like Curiosity Chronicles, under a blanket—adding to the child’s love for stories and history in a calm and cozy way.

A Week in the Life of a Homeschooling and Unschooling Household

Each week in a homeschooling or unschooling environment can look completely different, and the flexibility allows each day to flow naturally based on the child’s interests. A Monday might begin with a breakfast discussion about ancient Egypt, sparking curiosity that carries into the day. Later, the child might watch a video about the pyramids and then spend the afternoon crafting models of them—blending history and art in a hands-on way. The following day, Tuesday, might be spent outdoors, turning a nature walk into a spontaneous biology lesson. As the family strolls, they might collect leaves, identify species using a field guide or app, and take time to observe the details of the world around them. Midweek, the child might join a live class in Outschool focused on creative writing, and afterward, a short story idea will come to them. This story then becomes a shared family project, with everyone marveling at how the ideas come to life. On Thursday, they might head back to the kitchen for a simple science experiment involving baking soda and vinegar. The process of watching reactions unfold often brings a mix of giggles and wide-eyed wonder at the small “explosion” they create, blending science with play. Finally, the child might spend Friday painting in an at-home studio they set up. By afternoon, they might host a mini gallery in the living room, proudly showing off the week’s creations to family members and building confidence in their work.

This type of week blends academics with imagination, all shaped by a child’s natural curiosity. It allows for exploration, discovery, and engagement without the pressure of strict timelines or rigid expectations. This adaptable approach respects the child’s need for autonomy while nurturing a love of learning and discovery.

Designing a Learning Approach with Self-Paced Programs and Unschooling

By creating a structure for learning with self-paced online programs and unschooling, families can transcend a set curriculum. Building an environment overflowing with experiences that invite children to explore their passions in depth. Nurturing a child’s passions can open educational pathways that span various subjects and areas of learning. A fascination with astronomy might lead to visits to planetariums, exploring space-themed books, and using apps like SkyView to identify stars and constellations. Through this interest, the child delves into related areas like physics, math, and even the mythology of celestial bodies.

Everyday activities become valuable learning opportunities as well. Cooking involves math, as children measure ingredients, science, as they explore chemical reactions, and life skills, as they practice planning and organization. Gardening introduces lessons in biology, ecology, and responsibility as children learn to care for plants and understand ecosystems. Even routine shopping turns into a hands-on lesson in addition, subtraction, budgeting, and decision-making. Simple baking projects, like making cookies, can turn into experiments as children observe the transformation of dough in the oven, learning about heat, change, and measurement.

This flexible style requires accessing diverse resources. Libraries become treasure troves of books, workshops, and community events, while online platforms offer instructional content that adds variety to the learning experience. Museums and parks provide interactive, hands-on experiences that make learning fun and engaging, giving children a deeper understanding of topics they might not experience in a traditional classroom setting.

Socialization within a self-paced and unschooling framework is also diverse and meaningful. Building a community can take many forms, whether through local homeschool groups or co-ops, where children interact with peers, or through extracurricular activities in areas like art, sports, or music. Some families find value in volunteer opportunities that foster empathy and social responsibility—providing real-world experience that enriches a child’s understanding of community. Smaller, controlled group settings can be especially beneficial, like local art classes, where children connect with peers who share similar interests in a relaxed and low-pressure environment. This self-paced, interest-led approach to learning allows children to gain knowledge in a way that appeals to them. This way, learning is engaging—balancing autonomy with structure, exploration, and connection.

Online Learning and Daily Life—It’s Not Always Rainbows and Skittles

Do many of the things shared about homeschooling and unschooling sound idyllic? Yes, some days truly are. But it’s important to be realistic—most of us have work commitments outside the home, household tasks to manage, other children to care for, and various responsibilities that need our attention throughout the day. Sometimes, there’s not enough room in the day for idealized homeschooling experiences, and this is where online learning can be a lifesaver.

A flexible homeschooling schedule that adapts to a child’s energy levels is essential, but it also needs to accommodate the demands of daily life. In the mornings, especially when pressing tasks or work commitments arise, online resources become invaluable. Children can choose activities from a list of educational websites and programs, allowing them to focus on topics that spark their interest while parents handle other responsibilities. If there’s hesitation or a lack of focus, revisiting a favorite online project can often reignite enthusiasm.

Since afternoons may be occupied with errands or work, online learning options offer a practical solution. Online activities offer children autonomy and keep them engaged, giving parents the time and space to manage other priorities. Spending time together in the evenings allows families to share their daytime experiences, discussing discoveries and insights. This helps maintain a warm, family-centered atmosphere despite busy schedules.

It’s important to acknowledge that not every day is filled with “rainbows and Skittles” in homeschooling and unschooling. The flexibility that makes this approach wonderful can also lead to unpredictability, requiring patience and adaptability. Sometimes, juggling a work call while assisting with a science experiment can become a messy and overwhelming event. There are days when, despite everyone’s best efforts, the child might not be interested in any of the options, or planned activities may not go as smoothly as hoped.

When there isn’t room in the day for hands-on projects or structured lessons, online learning is key. It allows children to continue exploring and learning independently—giving parents the break to focus on other tasks. This approach doesn’t mean compromising on their education; instead, it leverages available resources to create a balanced routine that works for the whole family.

Embracing both idyllic days and challenging ones is part of the homeschooling journey. By integrating online learning into daily routines, families can adopt a realistic and compassionate approach that accommodates both the children’s needs and their own. This balance supports children’s education, while allowing parents to manage their responsibilities, making homeschooling and unschooling a sustainable and fulfilling experience for everyone.

A Look at Charter Schools: Flexibility and Structure in One

Although we’ve focused on homeschooling and unschooling, we understand that this might not be the right fit for every family. Your family needs and preferences will evolve, prompting a shift in strategies. One alternative worth considering is charter schools, which offer a balance between structure and freedom.

Charter schools can be an appealing choice for families seeking a structured curriculum without the rigidity of a traditional school environment. These publicly funded institutions often have flexibility in their teaching methods, curriculum choices, and scheduling—helping them to cater to diverse learning requirements. This makes them a potential middle ground for families who desire both the consistency of a formal education and the adaptability of self-paced learning.

One of the key benefits of charter schools is their ability to customize. Many charter schools embrace individualized learning plans, which can be especially helpful for children with PDA or other neurodivergent profiles. These schools often offer certified teachers skilled in supporting various developmental needs, providing your child with both academic structure and personalized attention.

Availability and regulations for charter schools vary by state, so research options through your state’s Department of Education or the National Charter School Resource Center. Many states offer a variety of brick-and-mortar, hybrid, and online charter schools to suit different teaching styles.

Some well-known online charter schools include:

Connections Academy: Has accredited K-12 programs with flexible learning opportunities. Visit: connectionsacademy.com.

K12 Online Schools: Provides a curriculum for various grade levels with live and recorded lessons. Visit: k12.com.

For families with children who have PDA, charter schools can be a place that encourages self-paced learning while ensuring access to specialized assistance. Charter schools may be the right choice for your family’s growing need for support, whether you’re looking for a full-time education or a supplemental program.

Building a Network and Accessing Key Resources for Homeschooling and Charter School Success

Building a strong support network and finding the right resources can make the transition to a new educational path, like a homeschooling or a charter school, much smoother. For those exploring alternative schooling, The Home School Legal Defense Association (HSLDA) distributes invaluable legal resources. They provide details specific to your state’s homeschooling requirements—ensuring you have what you need to enhance education conditions at home. Their website can guide you through any homeschool-related legalities. The National Alliance for Public Charter School has information on charter schools across the United States, helping you explore programs and understand eligibility criteria. You can visit them online to learn about charter schools in your area.

Local and online networks can offer practical tips and emotional reassurance, making the transition into homeschooling or charter schools both enriching and manageable. Flexibility and patience are crucial to building experiences that honors your child’s strengths and respects their pace.

As you embark on this path, trust your instincts and embrace flexibility. No two children are the same, and what works for one may not work for another. Listen to your child and be willing to change and experiment. It’s okay to step away from conventional norms. Choosing homeschooling, unschooling, or charter schools can feel daunting, especially when it goes against societal expectations. But prioritizing your child’s well-being is paramount; ultimately, you’re creating a space where they can thrive on their own terms.

Preparing for Future School Reentry and College While Homeschooling or Unschooling

For your child with PDA, the question might not center on choosing between traditional schooling, homeschooling, or charter schools, but instead, on finding the right plan at the right time. Children with PDA often need flexibility, and it’s entirely possible—and even beneficial—to switch between models as things change. You may find that homeschooling or unschooling works well during certain stages, while traditional school might be a better fit at other points.

If your child wants to reenter the school system or pursue college later, these nontraditional paths can prepare them for that. With a few intentional steps, homeschooling or unschooling can extend both the autonomy they require now and lay the groundwork essential for any future educational goals. For younger children, beginning with a gentle, structured system that still respects their preference for autonomy is important. It’s necessary to document your child’s new skills and activities. By maintaining this record, you can better understand your child’s development and can adapt. You can rely on something other than traditional grades; with documentation noting their interests, completed projects, and areas of advancement. This might include tracking their growth in areas such as literacy, numeracy and creative thinking. Collections that include hands-on projects, self-directed experiences, or even photos and videos can provide valuable evidence of a child’s progress.

If you think your child might return to a traditional school setting in the future, consider how to align their learning with some academic benchmarks. Even in child-led environments, gently introducing core subjects like math, reading, and science can provide skills that ease the transition back into a traditional school setting. Online self-paced learning programs allow you to adjust the pace to fit your child’s needs. Confirming that they’re keeping up with their education without the pressure of a rigid schedule.

Standardized testing is another consideration. Many colleges have become more flexible and open-minded with their admissions criteria, but some still require SAT or ACT scores. For younger children, there’s no need to focus on this now, but keeping it in mind allows you to integrate test-taking strategies or structured skill-building as they age.

Above all, maintaining an open and ongoing dialogue with your child is key. Their interests and goals will change as they grow, and having space for those shifts ensures they remain engaged in the educational process. By focusing on long-term possibilities without overwhelming them with immediate pressures, you set a solid foundation for their future, no matter which path they choose.

Enriching Socialization Through Extracurricular Activities

Even if you choose to homeschool or unschool, incorporating extracurricular activities into your routine is necessary. Extracurricular activities can be a fantastic way for your child to connect with peers, build new skills, and discover interests. These activities work best for children with PDA, when designed to reduce social pressures—letting them participate in a way that comes naturally. Art and music lessons, for example, are outlets that can be both soothing and creative. Local studios might have private or small-group classes, helping children explore creativity in a relaxed context. Many children enjoy pottery classes, where they can express themselves through clay as the tactile nature of working with clay can be calming.

Swimming or equine therapy can also provide powerful emotional and sensory benefits. The calming, full-body movement of gliding through water can be both relaxing and invigorating, especially when done during quieter hours at the pool. Horseback riding, meanwhile, combines physical activity with an emotional connection to the horse, which can be beneficial for children with anxiety or sensory sensitivities. Both activities create opportunities for physical engagement and emotional balance.

Individual sports like golf or archery are great choices for children who prefer quieter pursuits. These sports prioritize individual development, avoiding the pressure of team competition—enabling your child to appreciate the activity without experiencing stress to succeed. Other options, such as personal training or yoga, allow fitness to be customized to match a child’s individual pace. For instance, some yoga instructors offer free children’s classes that emphasize mindfulness and gentle movement, helping kids explore physical activity in a calm, supportive environment. 

When your child takes part in things they enjoy, it creates a space where they can interact with others, build abilities, and feel both valued and appreciated. When these activities align with their interests and respect their comfort zone, they’re more likely to lean in, gaining trust and positive relationships. 

It’s important to recognize that extracurricular activities may not be workable for all children with PDA, especially during periods of burnout. If your child isn’t ready or willing for these events, that’s okay. Forcing participation can increase stress. Instead, focus on pursuits at home and stay open to trying new things when your child is ready. 

Incorporating Chores into Homeschooling and Daily Routines

On the topic of home-based pursuits, involving children in household activities can help create a supportive environment. Particularly for children with PDA, who may find certain tasks challenging when they feel like demands. Homeschooled or unschooled children, who spend much of their day in the same familiar environment, can take on more household responsibilities. This not only develops independence and life skills but also helps them feel they’re contributing to the family. By presenting chores as shared, collaborative tasks, rather than duties, children are more likely to join in. This teamwork-based approach turns daily chores into a positive, shared experience.

One effective approach is to introduce chores through modeling and inclusion, rather than assigning tasks. For example, while cooking dinner, I might say, “I’m chopping vegetables for the salad. Would you like to rinse the lettuce?” This process invites participation without applying pressure, allowing my daughter to assist naturally. When you involve your child in the task you’re doing, it also creates a feeling of togetherness, turning chores into shared experiences rather than isolated duties.

Sometimes, a bit of reverse psychology can also pique their interest. I recall narrating in my kitchen, “Hey, do you want to—oh, never mind, I bet you wouldn’t want to do that.” Naturally, my daughter became curious and wanted to know my thoughts. “What is it?” she’d ask, and I’d tell her, “Oh, it’s just rinsing these vegetables, but I didn’t think you’d be interested.” More often than not, this playful withdrawal made her curious enough to want to join. This subtle approach lets her choose on her own terms, often leading to enthusiastic participation.

A playful element added can also make chores more fun and reduce the likelihood of resistance. We often turned chores into games or contests. Laundry turned into a game of “laundry basketball,” where we tossed socks into the hamper from a distance, transforming a routine task into something playful and fun. Similarly, playing music while cleaning, or turning laundry sorting into a color-matching game, can add enjoyment and spontaneity.

Giving kids choices with chores can make it seem they have a say, instead of being ordered to do it. This may make them more likely to get involved. Rather than saying, “You must tidy up the living room,” I might mention, “I’m organizing the living room. Would you like to put the books back on the shelf or arrange the pillows?” This phrasing provides options that allow my daughter to choose her role, which is more encouraging than a specific assignment.

By having your child help with household chores in this collaborative, playful, and choice-driven format, you help them develop life skills. By making tasks a team effort, using a bit of reverse psychology, and adding a touch of fun, you can nurture your child’s willingness to contribute without making chores seem like burdens.

How to Help Intellectually Gifted Children with PDA Thrive—Structure, Logic, and Control

When you have a child who has PDA and is also intellectually gifted, it can feel like they’re on a never-ending quest to understand the world’s underlying logic. They see life as a series of interconnected systems—think puzzles, elaborate LEGO builds, or coding projects—and their deep need for intellectual stimulation acts like a steady current driving them forward. This fascination with how things work helps them feel grounded and more in control, especially when day-to-day demands start to feel like a jolt to their nervous system. Acknowledging their systems-focused perspective is an important way of saying, “I see your brilliant mind and how you’re trying to make sense of everything around you.”

At the same time, these children often have an intense desire to equalize the power dynamics they encounter, making them even more sensitive to perceived authority or arbitrary rules. They long for a sense of control, which can look like fiercely standing their ground when asked to do something that seems illogical or random. Instead of trying to outpower or outsmart them, you can lean into their knack for rational thinking—offer clear, structured explanations and show them how a particular request fits into the bigger picture. For instance, if you need them to transition away from a puzzle or coding session, you might say, “Let’s pause our project for dinner so our bodies have the fuel they need to keep creating.” This kind of transparent connection—tying the demand to a logical outcome—helps soothe their resistance.

Counterintuitively, many of these children flourish best within predictable frameworks, as long as the reasoning is apparent, and they feel respected. You might notice that when the day follows a clear pattern—like a consistent morning routine or a straightforward visual schedule—they can relax into the structure and channel their high-level thinking where it matters most. In this environment, they’re free to dive deep into their passions, knowing they’re not being corralled without purpose. By blending reliable scaffolding with opportunities for them to flex their intellectual muscles, you send a powerful message: “I respect your need to understand and to have some say, and I’m here to provide just enough structure so you can thrive.”

In a homeschooling or unschooling setting, this child can truly excel—because the flexible structure and learner-driven approach offers the perfect blend of autonomy, intellectual challenge, and respect for their unique worldview. It becomes a natural extension of their systems-focused thinking, ensuring they feel both understood and empowered to pursue their passions on their own terms.

Bridging Ideal Education with Everyday Life

While we’ve explored a variety of educational options that may seem ideal for assisting your child, we understand that real-life often looks different. Everyone has limited time and resources, and support systems vary from family to family. You might be a single parent juggling work and caregiving, or a grandparent stepping in to help. Balancing responsibilities like paying rent, managing bills, and caring for other family members can make implementing the approaches we’ve discussed challenging.

It’s likely you might want to provide a flexible, child-led learning environment, but your work schedule doesn’t allow time for homeschooling. Or perhaps you wish to incorporate hands-on activities but lack the resources or time to do so. Remember that you can’t do everything, and that’s okay. Consider reaching out to friends, neighbors, or community members for support. It’s hard to ask for help, and sometimes help isn’t readily available, but even small contributions from others can make a difference.

Do what you can within your circumstances. Every effort you make is valuable, even if it doesn’t look like the scenarios we’ve described. Use the ideas that resonate with you to fit your life and keep in mind that taking care of yourself is just as important as caring for your child.

Conclusion

Transitioning to homeschooling, online learning or charter schools gives you the chance to support your child’s growth and encourage their curiosity in a way that fits who they are. By embracing flexibility, following their interests, and creating a warm home environment, you’re helping them thrive. This mix of support and adaptability builds a firm base for learning and connection. 

Now that we’ve discussed diagnosis, medical and financial options, and educational supports, it’s time to shift our focus to identifying triggers that lead to anxiety and outbursts in children with PDA. In the following section, we’ll explore realistic methods for managing and reducing these challenging moments, fostering calm and predictability for your family.

CHAPTER 7

UNDERSTANDING TRIGGERS AND PREVENTING OUTBURSTS

Raising a child with PDA often feels like navigating a minefield: one wrong move can trigger an unexpected blow-up. These outbursts, which can range from mild resistance to intense reactions, are often driven by overwhelming worry from simple everyday pressures. When you know the reasons for these reactions, you can not only prevent many of them, but also create a peaceful and understanding environment for your child.

Triggers for children with PDA can vary, but certain patterns often emerge. A big one is the perception of losing control. It’s not about wanting to control everything; rather, it’s the stress that surfaces when they believe their ability to control is slipping away. Recognizing the underlying factors—whether related to routines, sensory experiences, or perceived demands like cleaning up, mealtime, or transitions—can help you expect and prevent outbursts before they escalate.

For children with PDA, even simple activities, like eating breakfast or brushing their hair, can seem like requirements that strip away their sense of autonomy. This perceived loss of control can be terrifying and often results in a quick spike of anxiety. When your child resists or has a meltdown, it’s not the task itself that causes distress, but an all-consuming fear of losing command over their environment and themselves.

Children with PDA often do well when given the power to make decisions, even small ones. Consider Isla, a nine-year-old with PDA. She frequently had outbursts when asked to do her homework. When her mother said, “It’s time to do your homework,” Isla immediately resisted—sometimes screaming or throwing her books. Her mother realized that the issue wasn’t the homework itself, but how she presented the demand. By changing her words to, “Would you like to do your math or reading homework first?” Isla felt options to choose from, which gave her autonomy and reduced the frequency of her extreme reactions.

I recall a similar instance with my daughter. I innocently asked her why she organized her closet in a certain way, thinking it would be a casual conversation. Instead, my question instigated an intense four-hour meltdown. She interpreted my inquiry as a threat to her autonomy, which sent her anxiety skyrocketing. This experience helped me understand her fragile sense of control, and how, even a well-meaning comment, seemed like pressure to her. It was a stark reminder of the importance of understanding triggers and handling these moments with thoughtful consideration.

Does any of this sound familiar to you? These examples represent just how sensitive children with PDA can be to even the most minor requests, and how necessary it is to approach them with care and understanding. 

Understanding Anxiety in Children with PDA

Anxiety plays a pivotal role in PDA, and as it builds up, it can lead to intense outbursts—turning everyday events into overwhelming situations. Understanding this can encourage you to have an empathetic and thoughtful perspective, not only for your child, but for anyone grappling with similar feelings.

In our family, we’ve seen how anxiety manifests in our daughter. She’s incredibly charismatic and loves being around other children, lighting up social settings with her energy. Yet, when she returns home from school, the day’s weight settles in. Her discomfort often becomes so intense that she experiences acid reflux, sometimes leading to vomiting at night. It seems like she lets go of all the emotions she’s held in throughout the day when she’s home and back in her safe space.

This pattern isn’t uncommon. Children with PDA often internalize their stress to maintain control in group settings, only to have it overflow later. The tension can grow like a pressure cooker, resulting in explosive outbursts or physical symptoms. It’s their way of communicating that something is “too much,” even if they can’t put it into words.

One strategy we’ve embraced is our “What’s In Your Head” journal. Each evening, my daughter and I sit down together with a notebook. We write everything on her mind—whether it’s something positive, like excitement for a fun activity, or something challenging, like a worry over a tough day at school. She might jot down concerns about a friend who fell, anger from messing up in art class, or unease because someone didn’t say “hi” to her that day. She externalizes her anxieties by putting these thoughts on paper and knows she can refer to them at any time if she wants. 

After we’ve written everything down in the journal, we have a little ritual. I place my hand on my daughter’s forehead, and we imagine pulling out all those worries we’ve just documented. Then, with a playful flourish, we throw them away together. This physical act of “removing” the worries makes her less burdened; like she’s unloaded a heavy backpack that she’s been carrying all day.

This practice hasn’t just eased her anxiety; it’s given us a glimpse into her inner world. We’re discovering so much about her unique way of connecting with others. Though she has an outgoing nature, the subtleties of social interactions often elude her. She has a strong sense of justice and expects others to share that perspective—which can lead to disappointment or frustration when they don’t.

We’ve noticed she fixates on moments when she thinks she’s “messed up,” replaying them in her mind and holding onto them longer than others might. Friendships can be difficult because she holds grudges, finding it hard to move past perceived slights. Through our “What’s In Your Head?” prompt, then journaling and discarding the thoughts after documenting them, we have been able to guide her in understanding these feelings. It’s a tool that not only eases her immediate distress but also builds emotional awareness.

Remember, these approaches aren’t exclusive to children with PDA. Many children and adults experience anxiety when they perceive a lack of control or become overwhelmed. These techniques can help anyone with big feelings manage them more easily.

Identifying Common Triggers in Children with PDA

We’ll now review some of the most common factors that can cause anxiety and outbursts. When you recognize these catalysts—whether it’s a sudden switch in routine, sensory overload, or unexpected social requirements—you’ll be able to expect and address triggers before they escalate. 

Unexpected Changes in Routine

For many children, routine isn’t just a preference—it’s a vital source of security. Changes to their routine can increase their stress, as predictability gives them a sense of control and reduces the tension that unpredictability brings. Any deviation from the expected schedule—whether it’s a change to plans, an unexpected visitor, or even a slight change to the usual order of events—can be unsettling. Parents can better assist their children by understanding and respecting how routine provides stability.

Consider Noah, a seven-year-old with PDA. He thrived on his morning routine: breakfast, getting dressed, and watching his favorite show before school. One morning, his mom had to take a phone call during breakfast, causing an abrupt disruption to the usual flow. He became frustrated, and his anger quickly escalated. His mom realized that what upset Noah wasn’t the phone call, but the unexpected interruption to his routine. To enhance his sense of safety, she offered a schedule that listed the day’s activities in advance. If a change was coming, like a necessary phone call, she would explain it beforehand and give him time to adjust. This simple change gave Noah a sense of control. Understanding how routine enhances predictability and reassurance for children with PDA can help prevent anxiety-driven behaviors. Even slight changes can feel big, so introducing them with care and preparation can make all the difference.

Sensory Overload

Sensory sensitivities are a common aspect of PDA. Environments that are too noisy, bright, or crowded can overrun a child’s senses—leading to heightened anxiety and outbursts. Sensory overload is so distressing it often leads to a fight-or-flight response, resulting in meltdowns or withdrawal.

Understanding and supporting your child’s sensitivities can enable them to navigate life more comfortably. Imagine Emilia, an eight-year-old with PDA—grocery stores were challenging for her. The intercom, the lights, the constant chatter, and the endless rows of products made her anxious and agitated. Her parents began noticing that each time they went shopping, she would fidget, cover her ears, and have an outburst. To provide added support, they made simple changes, such as bringing noise-canceling headphones, scheduling shopping trips during quieter times, and giving her a small fidget toy to keep her calm and focused. These minor modifications made shopping trips pleasurable for Emilia and her family.

Does Emilia’s story resonate with your experience at home? Understanding and responding to your child’s sensory sensitivities can create a sense of safety, lessening their stress and fostering connection.

Social Pressures

Interactions with others can be very overwhelming for children with PDA. The expectations to conform to social norms, interact with peers, or respond to authority figures, can be too much to handle, and may result in avoidance behaviors or outbursts.

Consider Oliver, a 10-year-old with PDA, who dreaded group activities at school. The pressure to perform, meet his peers’ expectations, and respond to his teacher’s instructions left him anxious and terrified. Aware of the anxiety these situations caused, his parents and teacher worked together to provide alternatives. They helped Oliver take part in group activities at his own pace and take breaks when needed. His anxiety lessened, since they reduced pressure and introduced more flexibility, and he enjoyed school. By understanding social pressures as triggers, you can support your child as they face these interactions. 

Complex Instructions

Besides social pressures, complex instructions can be another source of anguish for children with PDA. When instructions seem confusing or unclear, children often have increased discomfort, which can lead to frustration or outbursts. Many children struggle with executive functioning skills like planning, organizing, and completing tasks, so it’s easy to see how multi-step directions can be overwhelming.

Think of Pooja, a six-year-old with PDA. She often had intense reactions when asked to clean her room, because the task seemed overwhelming, and she didn’t know where to begin. Her parents discovered that breaking the task into smaller, more doable steps made all the difference. Rather than stating, “Clean your room,” they offered step-by-step guidance like, “First, let’s pick up the toys and put them in the bin. Next, we’ll fold the clothes.” Breaking the task down made it achievable, helping Pooja to follow through and avoiding exhaustion.  

Gabriel, a seven-year-old, has difficulty moving from playtime to homework. Whenever he’s asked to start his homework, he gets anxious, shuts down, or refuses to begin. Instead of saying, “Do your homework,” which seemed too broad and intimidating, Gabriel’s parents shifted their language. They broke it down into tiny, actionable steps: “First, let’s get your math book out of your backpack. Now, open it to the page we need.” This simple change allowed Gabriel to focus on one small thing at a time, so he can continue through the process with less resistance. By simplifying instructions, you reduce your child’s cognitive load. Clear, step-by-step recommendations, make tasks manageable and boosts capabilities, reducing worry and preventing outbursts.

Proactive Approaches

Once you’ve identified the triggers contributing to your child’s tension or outbursts, the next step is implementing proactive techniques to support them. Beyond preventing meltdowns, these steps assist your child to feel confident and autonomous. 

Offer Choices to Maintain Perceived Control

Most of us are more at ease when we have authority, even in small ways, and children with PDA are no different. The act of presenting options can make a big difference in enabling them to feel less overloaded and more empowered. One of the most effective methods to help children gain perceived control is by offering choices. Anshu, a five-year-old with PDA, used to resist bedtime every single night. His parents tried everything—reminders, routines—but nothing worked. Finally, they suggested choices to him: “Anshu, would you like to brush your teeth before or after putting on your pajamas?” or “Would you prefer reading a story or listening to music before bed?” This approach gave Anshu greater control over his bedtime routine, turning the nightly battle into a much calmer and cooperative evening for everyone.

Transition Management

I’m sure every parent or caregiver has faced the challenge of managing transitions, especially when anger turns up unexpectedly. For children with PDA, these changes can appear even more worrisome, often triggering anxiety. With some preparation, you can reduce the tension that comes with these moments. Simple aids like picture schedules, Social Stories, or verbal reminders can make a difference. If there’s a change in plans coming, you could put it as, “Tomorrow, instead of going to the park, we’re going to visit Grandma. After that, we’ll return to our usual routine.”

Himari, an eight-year-old with PDA, used to have outbursts every time she had to leave the playground. The sudden change from playtime to going home proved overwhelming. Her parents started a countdown to help her manage the transition. They’d say, “Himari, we’ll leave the playground in ten minutes. You can go on the slide one more time before we go.” Then, they would remind her again at the five-minute and one-minute marks. This gradual warning enabled Himari to handle the change smoothly, and her meltdowns became less frequent. By preparing your child in advance, and offering choices, you give them the perception of control and optimism.

Create a Sensory-Safe Environment

Helping manage sensory overload can lessen uneasiness and prevent outbursts. You can change your child’s environment by offering soft background music, letting them wear comfortable clothing, or creating a quiet reading nook where they can escape if they become overstimulated. These small but thoughtful changes can make a big difference.

Mateo, a six-year-old with PDA, had difficulties during family dinners because of the bright lights and the noise from conversations. His parents noticed he frequently covered his ears and squinted, clearly uncomfortable. In response, they made a few small switches—dimming the lights during dinner and letting him wear noise-canceling headphones at the table. They also set up a sensory corner in the dining room where Mateo could take a break if he was struggling to cope. These changes transformed family dinners, making them much more pleasant for Mateo and reduced his outbursts.

Practice Social Scenarios

Children with PDA often withdraw in group settings, where the pressure to conform to norms can intensify their stress. By practicing these scenarios at home in a safe and low-pressure environment, you can strengthen your child’s self-assurance. Whether it’s practicing answering questions, talking with peers, or responding to teachers, rehearsing in advance helps your child improve confidence.

Valentina, an eight-year-old with PDA, found group interactions challenging. The pressure of interacting with classmates, answering questions, or being called on by her teacher—even when she knew the answers—often triggered anxiety and outbursts. Aware of the struggles faced by Valentina, her parents introduced role-playing to practice and rehearse different scenarios. Together, they role-played communications like greeting a classmate or asking for assistance, using toys and stuffed animals as props. This low-pressure practice allowed Valentina to make mistakes without judgment, enabling her to be more relaxed when these situations came up at school.

By helping your child to practice and explore these social dynamics in a calm and encouraging setting, you’re equipping them with the skills to face the real-world. 

The PDA Demand Paradox

One of the most intriguing struggles of parenting children with PDA is handling the PDA demand paradox. These children often resist direct demands to maintain perceived control. Still, during periods of burnout, even simple decisions can consume, leaving them unable to choose at all. On one hand, these children crave autonomy. Still, paradoxically, there are times—when even the smallest decisions seem impossible, leaving them paralyzed in moments when they need help the most.

Children with PDA often spend so much energy managing perceived demands that burnout results in physical and emotional exhaustion. A parent once shared how her son, who usually loved choosing bedtime stories, suddenly began hiding under his covers when asked to pick one. She recognized this as burnout and adapted. When presented with too many choices, children can sometimes be overwhelmed. I recall a similar occurrence when I asked my daughter to choose between oatmeal and toast, and her eyes filled with tears as she whispered, “I can’t decide, you choose for me.” Even simple decisions had become too much for her.

Recognizing these signs is key to adjusting your approach. During burnout, removing decision-making pressure can give instant, immense relief. Gently taking the lead while respecting their autonomy makes a child feel safe. For example, during a challenging phase, I’d mention, “Tonight, I’ll pick a story I think you’ll enjoy.” Another family shared how they created a predictable bedtime routine—bath, soft music, no choices—allowing their daughter to rest without the burden of decision-making.

The juggle is to balance support with autonomy. When your child is overwhelmed, you can step in and decide—providing the stability they need. One mother noticed her son struggling with getting dressed, so she laid out comfortable clothes, saying, “I picked something cozy for you today.” He seemed relieved, and the morning went smoother. It’s important to remain flexible—if your child signals a preference, even subtly, honor it without adding pressure.

As they recover, reintroducing small choices can rebuild confidence. After a few days of deciding for my daughter, I laid out two outfits again and said casually, “Feel free to wear either.” Another parent used play to assist her son in regaining decision-making abilities, asking during a block-building activity, “Red block or blue?” These low-pressure, playful choices helped him to ease back into decision-making in a relaxed way.

Navigating this paradox requires both patience and a deep understanding of your child’s experience. Your child’s demand for autonomy doesn’t disappear during burnout—it just looks different. When decisions become overwhelming, aiding and reintroducing choices as recovery progresses fosters a safe space. Reflect on ways you can present both gentle guidance and the freedom to choose when they’re ready.

Conclusion

Understanding and identifying the triggers behind outbursts in children with PDA is a step in the right direction. You can reduce the frequency and intensity of these outbursts by offering choices, preparing for transitions, creating sensory-safe places, simplifying tasks, and practicing social scenarios.

Each child is one-of-a-kind, and this uniqueness extends to those with PDA, so adaptability is key to tailoring solutions. What works well for one child may be less effective for another. Embrace the process with patience and a willingness to adjust as you go, keeping your child’s personality and preferences at the forefront. 

As you move forward, remain open to trying different approaches and be willing to alter. Remember, the goal is to provide empathy, patience, and flexibility as your child continues to grow and change. Stability is a crucial component in managing symptoms of PDA, and in the next section, we’ll explore how predictable routines can reduce anxiety and build a sense of security for your child.

YOUR VOICE MATTERS: HELP OTHER PARENTS FIND SUPPORT

“Although I’m acting angry, what I’m feeling is terror, and afterward, I don’t remember what I’ve done.”

ANONYMOUS

For children with PDA and autism, daily life can feel like a constant battle between their mind and body—where even the simplest request can trigger a storm of panic and anxiety. Imagine facing your biggest fear every single day. This is the reality for many of our children.

As a parent or caregiver, I hope this book has provided clarity, comfort, and practical strategies to help you navigate the challenges. If these insights have made a difference, I’d love to hear from you!

Your Amazon review not only supports this book but also helps other families find the tools they need to create a more peaceful home.

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CHAPTER 8

REDUCING ANXIETY THROUGH PREDICTABLE ROUTINES

We all have certain rituals—whether it’s a morning cup of coffee, or a preferred time for exercise. Imagine how frustrating it would be if someone demanded that you skip your coffee or change your exercise schedule. These small habits help us feel grounded. Now, consider how routines might affect children with PDA? For them, routines provide comfort and reduce anxiety by making the day more predictable. But let’s be realistic—establishing and maintaining routines can be challenging, especially when your child’s demand avoidance is a factor. You may face resistance, struggle to maintain consistency, and need to adapt as your child grows and situations change.

In this chapter, we’ll look at how to create routines that fit your family’s lifestyle and support your child’s need for independence. The aim is for routines to offer predictability, without increasing stress or imposing rigid expectations.

The Role of Routines

Think about the routines that happen in your daily life, even the small ones. Whether or not planned, these patterns can provide stability, especially for children who thrive with structure. Routines offer a reassuring sense of control.

Many parents have shared how routines have improved their child’s daily experiences. One parent mentioned how their son used to struggle with the unpredictability of mornings, but once they introduced a gentle wake-up and breakfast routine, his anxiety lessened, and meltdowns became less frequent. Another family noticed improvement when they followed a very loose schedule for the after-school period. Their son often experienced tiredness moving from school to home. However, after breaking down the afternoon into simple, optional choices like—snack time, free play, and quiet moments, he settled in quickly. The increased predictability reduced his distress and made afternoons calmer for everyone.

In our family, routines are critical. The First Then Visual Schedule App is useful because it gives us a consistent structure to use at home. This tool allows us to use pictures or icons to represent daily activities, helping my daughter see what to expect, making the day more manageable. One family we know uses the Choiceworks App which helps them customize daily tasks. The app allows them to set up visual schedules with pictures and timers, giving their child a clear sense of what’s next and making transitions between activities smoother and less stressful.

Starting Small and Building Gradually

New routines don’t have to happen all at once. A gradual and measured approach helps your child adjust without being overwhelmed. We followed a similar method, starting slowly, beginning with morning rituals like getting dressed, having breakfast, and brushing teeth. Over time, we introduced routines for other parts of the day. A beneficial tool for us was the SchKIDules Visual Schedule which uses magnetic cards to display the day’s events. This worked well because it introduces one new routine at a time, reassuring our daughter to recalibrate without pressure.

Incorporating Flexibility into Routines

Routines don’t have to be rigid. In fact, building in flexibility can be life-changing, especially for children with PDA, who may react negatively to strict expectations. In our family, we’ve added enjoyable activities into our daily routine to make certain tasks more appealing. Cleaning has always been challenging, often triggering demand avoidance whenever we asked our daughter to pick up anything. However, things changed after her preschool teacher introduced the “Clean Up Vacuum Cleaner” song by Jack Hartman Kids on YouTube. After incorporating this song into her school routine, she happily tidied her room at home, often asking to play the song multiple times until she finished! This small, enjoyable habit turned a source of resistance into something she looks forward to. It’s an example of how adding a fun twist to a routine can make a hard task seem manageable.

Narration as a Low-Demand Routine

In our experience, we’ve found that narrating activities can inspire our daughter’s participation without making direct requests. This type of approach is referred to as a ‘low-demand routine.’ For instance, I might talk aloud about what I’m doing in the kitchen: “I’m putting the dishes away now,” or “I’m getting some fruit ready for a snack.” By talking to myself, I’m sharing what’s happening, placing no expectations on her. This way, my daughter can recognize what’s happening and choose to join me if she wants. She often asks if she can assist after I use this narration technique. This low-demand method has encouraged her involvement in family chores and activities without added stress. She can decide whether to engage, supporting her desire for autonomy while fostering the connection.

Preparing for Transitions to Reduce Anxiety

Transitions can be especially challenging for children with PDA. Giving advance notice can ease anxiety and reduce resistance. A steady flow of verbal reminders or cues offers them time to get ready for the upcoming change. One parent shared how introducing a countdown timer, like the Time Timer, made a difference for their son. Together, they would set the timer, letting him say how much time he required. They noticed his resistance to dinner decreased immensely when they combined the advanced five-minute notice with allowing him to set the timer. This collaborative format gave him a greater sense of control, changing activities smoother and less stressful.

We’ve had similar success with these tools. Using devices like Goally for visual and auditory prompts, or even just counting down with a regular timer, has eased our daughter into transitions without overwhelming her. Consistency is critical. Gentle, predictable cues give your child time to adjust, making shifts smoother.

Encouraging the Routine with Positive Feedback

Positive feedback can reinforce routines by acknowledging your child’s efforts. Positive reinforcement can come in various forms—whether through praise, small rewards, or simply by recognizing their participation—helps motivate them to engage willingly. You can praise your child for following a routine or provide a small reward for completing a task. However, it’s important to recognize that many children with PDA perceive even positive feedback, or rewards like sticker charts, as pressure—increasing their stress rather than reducing it. For these children, subtle forms of acknowledgment may be more appropriate.

Like many families who use positive reinforcement techniques, one family I know uses a sticker chart like those from Happy Hooligans to track their child’s progress. Their child earns a sticker each time they complete an activity, and once they fill out the chart, they receive a reward, such as extra screen time or a trip to the park. This consistent acknowledgment reinforces the routine and enhances the child’s sense of accomplishment. This practice has worked wonderfully for their family, providing positive reinforcement that resonates with their child’s needs and interests. Yet, another family we know found that their child perceived the sticker chart itself as a demand. Instead, they extended low-key, non-verbal acknowledgment, like a smile, gentle nod, or even a playful fist pump, to reassure their child without adding pressure.

Recognize that even routine activities, such as calling roll by teachers at school, can be distressing for children with PDA. When a teacher calls roll, some children may be overwhelmed. Simple tasks, like responding to their name, can become an intense requirement. In such cases, you must tailor the technique to the child’s comfort level. The teacher could mark them present without using a verbal response or use a visual cue instead. Awareness of your child’s sensitivities aids in choosing the most appropriate way to give them positive feedback.

For us, positive feedback is often verbal. After a smooth morning routine, I’ll say, “You did a great job getting ready today!” Simple praise like this motivates my daughter to repeat the behavior. But we always remain attentive to her reactions, ready to alter our approach if even praise is overwhelming. What is effective for one child might not be effective for another, and a strategy that helps a child now might not work for the same child later. Staying flexible is the key.

Conclusion

Routines can lessen anxiety for children with PDA by making things predictable, providing a clear understanding of what’s coming next, and boosting confidence throughout the day. However, balancing structure with adaptability is key. While routines provide a stable foundation, allowing choices within the routine helps maintain your child’s sense of control.

Using tools such as schedules, gentle reminders, and positive feedback can make routines seem more natural. Staying attuned to which forms of encouragement work best for your child ensures that your support is effective. As you fine-tune these routines, you’ll notice that they provide structure, security, and empowerment. Next, we’ll explore strategies to prevent and manage meltdowns. By identifying triggers and responding with compassion, you’ll be better equipped to aid your child.

CHAPTER 9

MANAGING AND PREVENTING MELTDOWNS

Meltdowns can be one of the most difficult aspects of parenting a child with PDA. These intense points in time, driven by overwhelming emotions, anxiety, or sensory overload, can be exhausting. While it’s impossible to prevent every meltdown, there are ways to reduce them. In this chapter, we’ll explore methods to recognize early signs, such as observing body language, listening for repetitive phrases, and noticing changes in breathing so you can help as soon as you notice these signs. 

Understanding Tantrums versus Meltdowns

As we begin this chapter, let’s take time to explore the difference between a tantrum and a meltdown. This distinction allows us to support our child, addressing their unique needs while building a stronger, connected relationship.

Tantrums are often a child’s way of expressing frustration when they’re not getting something they want or seeking to assert control. During a tantrum, a child might still have some awareness of their actions. They might test boundaries, and you may notice them checking to see if their behavior is having an impact. It’s their method of communicating a want or desire, even if it’s expressed in a challenging form.

Meltdowns are entirely different. For a child with PDA, a meltdown is a devastating experience where their emotions and sensations become too much to handle. This loss of control isn’t a choice or a strategy to manipulate to get something—it’s a genuine state of distress often triggered by unmet needs, too many demands, or unexpected changes. In these moments, they lose command over their actions and require our compassion more than ever.

So, how can we respond in a way that helps?

During a tantrum, it’s critical to maintain firm boundaries while staying compassionate and understanding. Acknowledge their feelings by saying, “I see you’re upset right now because you wanted to play longer.” Your calm and consistent response reinforces the limit while showing them you understand how they’re feeling and boosts your confidence in containing the situation.

During our meltdown, our role is different. We need to be a calming and safe presence for our child. Minimizing additional stress or sensory inputs, such as turning off bright lights, lowering surrounding noise, or moving the child to a quieter space, may prevent things from escalating further. For instance, you can turn off the TV, close the curtains to reduce light, and guide them to a cozy corner with a favorite blanket or toy. Mention to them, “I’m here with you. You’re safe.” Allow them autonomy and time to regain control without adding more pressure. Remember, every behavior is communication. By looking beneath the surface—asking ourselves what our child might need or be experiencing—we can respond in a way that helps them understand their value and worth.

Mood's Role in Tolerance and Meltdowns

Caring for a child with PDA requires understanding that their tolerance for requests and the likelihood of experiencing meltdowns can fluctuate. These responses can change based on a child’s mood. This inconsistency in responses from children can be confusing for caregivers and family members. Imagine asking your child to put on their shoes. On a good day, this question might cause a minor protest, a quick stomp, or a bit of grumbling—a typical tantrum that resolves itself. Yet on a more challenging day, the same comment can feel overwhelming, and before you know it, what began as a small tantrum, spirals into a full-blown meltdown. The difference? It often comes down to their mood and their emotional bandwidth at that moment.

Emotional bandwidth refers to the child’s current emotional state, stress level, and coping skills. When children are in a good mood, they have more emotional fortitude. But when overwhelmed or upset, they’ve used up their resources, making it difficult for them to comply with even small requests. Knowing that a child’s mood affects their ability to handle demands allows us to respond with greater understanding and flexibility. It’s not that they’re being purposely unpredictable or defiant; rather, their capacity to cope varies with their state of mind. When we tune into this, we can adjust our expectations and respond in helpful ways.

So, on hard days, it makes sense to skip the things that can wait, opting for a gentler method that considers their current mood. Meeting them where they are at the moment provides the understanding and encouragement necessary to process these fluctuations.

Spotting the Signs of a Meltdown

Before a meltdown happens, many times your child may display subtle signs of stress. Observing these early cues allows you to step in and help your child regulate their feelings before things escalate, deepening your understanding of their priorities and needs.

We’ll now look at the signs of a meltdown to help you identify these cues more effectively.

1. Watch for Early Indicators: Children with PDA may show various signs that show they are under strain. These cues might include increased fidgeting, repetitive questioning, avoidance behaviors, heightened sensitivity to sensory input, or even subtle changes in breathing. For instance, a child might pace, asking the same question over and over, or avoiding eye contact. 

One parent shared their daughter fidgets and repeatedly asks the same question—even after they’ve answered it—when she’s close to a meltdown. By identifying these behaviors in their early stages, they have been able to provide support and help her regulate her feelings before things become overwhelming. I’ve noticed that my daughter repeats phrases like “I want bunny” when she’s dysregulated. When I hear this, it’s my cue to listen and extend immediate guidance before things escalate. When I notice these early signs, I can respond proactively, giving her space and reassurance.

Another family shared that their son, who withdraws from group interactions and becomes quiet when distressed, responds well to gentle check-ins. These moments of calm affirmation make him feel seen and supported, allowing him to open up gradually and avoid further shutdowns. Quickly suggesting that he take a break, or do a calming activity, prevents the situation from escalating.

Don’t underestimate the impact of basic needs like hunger and thirst. When kids are “Hangry” (hungry and angry), their ability to handle intense feelings decrease. A “meltdown prevention kit” with snacks and water can make a big difference in keeping your child comfortable and calm. Many families have shared that having a small kit with snacks like crackers, granola bars, and water bottles in the car can reduce their child’s meltdowns during long errands or car rides. This simple approach becomes a way for children to stay regulated wherever they are, as children can ask for this “kit” at any time.

Care for basic needs like hunger and thirst are simple ways to prevent outbursts. Understanding your child’s mood and feelings is just as helpful. Frameworks like The Incredible 5-Point Scale and The Zones of Regulation teach children to recognize and communicate, giving you the chance to step in before feelings boil over. Tackling these stressors creates an environment where meltdowns are less frequent. 

2. Create a Calming Space or Regulation Station: While addressing hunger and guiding your child to identify their emotional state is essential, having dedicated spaces for self-regulation is equally valuable— especially for children with PDA. Creating both calming spaces and regulation stations furnishes your child with refuge when they’re overloaded.

A calming space is a soothing area where your child can retreat to unwind and regain control. One family shared how they made a calming corner in their living room that worked wonders for their daughter. They included a beanbag chair, a weighted blanket, and some of her favorite books, making the area cozy and adaptable to her sensory preferences. This retreat became her go-to spot whenever she needed it, offering her a peaceful place to decompress. Inspired by this idea, my daughter engineered her own version—a cozy fort behind her bed. It’s her special place to go when things are too much.

Some children, on the other hand, benefit more from physical activity to manage their emotions. This is where a “regulation station” comes into play. A regulation station is a designated area equipped with tools that allow for active, physical engagement—helping children who need activity or “heavy lifting” to regulate. For example, one family set up a small trampoline, a punching bag, and resistance bands in a corner of their basement. This space became invaluable for their son, who often needed to burn off excess energy to calm down. By engaging in physical activities, he could channel his feelings constructively and return to a balanced state.

By incorporating both calming spaces and regulation stations into your home, you’re addressing the needs of children who may require different strategies to self-regulate. Whether your child needs a quiet place to retreat or an active space to release energy, providing these options empowers them to take control of their well-being.

3. Use Gentle Distractions: Positive distractions often aid children in refocusing and avoid becoming overwhelmed. A focus on something enjoyable can often stop a full-blown meltdown. For instance, one parent noticed that when their daughter began showing early signs of anxiety, suggesting a favorite activity—like drawing or playing with a sensory toy—often changed her emotional state. The parent often could stop an outburst before it escalated by redirecting her attention.

Another family discovered that music worked wonders for their son. They created a playlist of calming songs, and whenever he showed signs of distress, they played one of his favorite tracks—which supported him with relaxation and focus. Music has a way of soothing heightened emotions, making it a good option during even the most challenging moments.

For parents looking for help, the Calm app has a selection of soothing music and guided meditations designed for children (and adults) to relax and reduce stress.

4. Validate Their Feelings: One of the most useful things you can do during a meltdown is to validate your child’s feelings. Letting them know you’re there, and that it’s okay to be upset, can be reassuring. Validation is crucial in de-escalating the situation, as it helps your child to know they’re understood.

When validating the feelings of children with PDA, declarative language can be useful. Declarative language focuses on observations rather than questions or commands—reducing pressure while promoting connection. For example, you might comment, “I’m noticing that things seem like a lot right now.” This simple observation lets them know you’re aware of their struggle without requiring a response.

One family shared that staying calm and offering gentle support through declarative statements made a difference during their daughter’s meltdowns. They would say, “It looks like this is a tough day, and that makes sense.” Focusing on calm observations gave her room to process feelings without expecting immediate engagement.

Another family discovered that when their son became upset, telling him something like, “I understand that this is frustrating, and it seems like you’ve been working hard on it,” helped him to realize they understood. This method validated his emotions by acknowledging his effort, creating a way for him to calm down with no need to explain himself.

If you’re looking for more guidance, GoZen! offers programs that help children understand and manage their feelings, focusing on validating emotions. 

Centering Yourself During a Meltdown

Remaining calm during a meltdown can be difficult, but it’s one of the best ways to empower your child. Your calm presence becomes an anchor—their security as their own feelings spiral. Though it can be challenging, staying centered is a powerful way to help.

When an outburst starts, your instinct may be to react quickly. Instead, pause and take a deep breath. This simple act signals to your brain that you’re not in immediate danger, telling your nervous system to relax. It serves as a model of calming behavior for your child. One mother found that practicing deep breathing and repeating the mantra, “Focus on my child, not on others,” helped her remain calm during public meltdowns. Over time, she noticed that her son’s outbursts became shorter and less stressful for both of them.

Grounding yourself is another technique for maintaining calm. Paying attention to tangible things, like the floor’s texture or a small object, can help you achieve stability and composure. For example, a mother kept a smooth stone in her pocket as a grounding tool. When her son’s feelings escalated, she’d rub the stone with her hand in her pocket, focusing on its texture. This kept her calm and prevented her from getting caught up in his emotional storm.

It can also be beneficial to say a calming phrase. A simple word or phrase, like “I am calm” or “I can handle this,” can serve as a mental anchor, keeping you focused and steady. One father found that repeating, “I am my child’s safe place,” reminded him of his role in providing stability during his son’s outbursts. This phrase kept him calm and present, reinforcing his ability to be the steady support his child needed.

Once you’ve centered yourself, the next step is to de-escalate things gently. De-escalation lowers emotional intensity and guides your child back to a place of control. The key is to acknowledge their feelings in a way that doesn’t add to their anxiety or resistance. When done thoughtfully, de-escalation can reassure your child that they’re understood, and bring calmness to both of you.

Approaches for De-Escalation

Empathy is the key to successful de-escalation; it cannot be overlooked. Simple phrases like, “I see that you’re upset right now,” or “I understand this is hard for you,” can go a long way in validating feelings. One parent shared how simply telling their child, “I know transitions are difficult for you,” made a big difference. This acknowledgment helped their child feel recognized, increasing their openness to cooperate.

A softer tone is another powerful method for helping your child relax. When your child is yelling or crying, matching their volume can unintentionally add to the intensity. Instead, try speaking softly. A father discovered that whispering to his daughter when she started screaming, caught her attention and shifted her energy, allowing her to calm down. Often, children will naturally lower their voices to match yours, creating a calmer space.

It’s best to use simple, gentle language. Upset children have a diminished ability to think clearly. Straightforward language, like saying, “Let’s take a break and breathe together,” offers a clear, calming suggestion. One family found that gently, noting, “How about we find a quiet room?” gives their daughter an easy, immediate escape from an overwhelming experience

Offering options may also reduce feelings of being trapped, a common experience for children with PDA. Providing two simple options, like “Would you like to sit on the couch or go to your room to relax?” offers your child a sense of control within a structured framework. This gives children greater capability without adding pressure.

You can also enhance communication by shifting focus. Gently shifting your child’s focus to a different activity can provide a mental break from the stressor. One mother shared how she shifted her daughter’s disappointment about not going to the park by mentioning, “Shall we read your favorite book together instead?” This change calmed her daughter by suggesting a comforting alternative.

These techniques are valuable not only for children with PDA but for all children—and even adults — as we all benefit from being understood. By recognizing the disruptions that transitions and demands can bring, you create a system that enhances cooperation, fostering a reassuring and compassionate environment.

Conclusion

Meltdowns can exhaust your child and your family, but you can reduce their frequency and intensity by using compassion. By identifying early warning signs, creating calming spaces, using gentle distractions, and offering reassurance—you enable your child to navigate challenging moments. Remember that every child is different, and their needs will change as they grow. By staying mindful of their preferences, adjusting your approach, and offering consistent encouragement, lays a solid foundation for their development. Over time, you’ll see fewer meltdowns and build a stronger bond of trust with your child. In the next chapter, we’ll dive into strategies for building emotional resilience, empowering both you and your child with tools that promote long-term well-being and confidence in handling challenging moments.

CHAPTER 10

FOSTERING EMOTIONAL RESILIENCE

As adults, we’ve all faced instances when things didn’t go as a work or a personal disappointment. In those times, our ability to regroup and move forward comes down to emotional resilience. The same is true for children with PDA; however, for them, the issues are often even more overwhelming. Emotional resilience—the capacity to adapt and recover from difficult situations—is a critical skill for them to learn. Building inner strength allows children to reduce stress and respond comfortably to everyday tasks and requests. In this section, we’ll look at gentle ways to nurture your child’s ability to process setbacks and find their sense of calm, equipping them with ways to face obstacles with self-assurance.

Understanding Emotional Resilience

As we’ve discussed throughout this book, children with PDA often have heightened feelings, making it challenging for them to manage stress. Emotional resilience can help them navigate intense feelings, reduce anxiety, and enhance their sense of balance and ease in daily life. A good starting point to help your child is using emotion charts. These charts help younger children associate words with their feelings, enabling them to express themselves. For older children, especially those at a loss for words because of burnout or other reasons, these can also be a critical resource. These visual aids are designed to help identify and communicate when verbal expression is too hard.

Whether for younger or older children, emotion charts form a bridge between their inner experiences and the words to describe them. A simple chart featuring faces that depict different feelings can provide your child with a means for expression without becoming overwhelmed. As they age, you can transition to more advanced methods, such as journaling or using emotion-tracking apps, which prompt your child to reflect. 

If your child is visibly upset and troubled by the request to clean their room, you can use this as an opportunity to teach emotional regulation through gentle guidance and adding declarative language. Begin by acknowledging them with a statement like, “I see you’re angry and frustrated right now.” This non-demanding observation acknowledges their experience without putting pressure on them to respond or explain. Then, offer a calming suggestion: “Let’s take a few deep breaths together.” The declarative language reinforces understanding and rapport rather than instruction.

Offering options can be helpful in these situations, as it allows for some control over the situation. You might say, “We have toys and books here. You could start with whichever one when you’re ready.” Guiding them through the task helps reduce their unease over time and empowers your child to manage their responses. Incorporating declarative language sets a collaborative tone, encouraging them to engage with the task at their own pace. 

Emotional Resilience Starts with You

Imagine you’re in the middle of a hectic day, and your child suddenly erupts—a full-blown meltdown is happening. You notice your tension rising, and your first instinct might be to react. But it’s crucial to pause and check in with yourself. Your emotional resilience matters here; if you’re struggling to stay calm, it’s nearly impossible for your child to find theirs. Your emotional resilience is not just important—it’s invaluable in these moments.

When you regulate yourself, you model calm coping methods for them. Not only does being grounded help during this time, but it also shows your child they have a reliable support system. Techniques like deep breathing or grounding exercises, used together, demonstrate that emotional regulation is a skill you can work on as a team. When you exhibit emotional strength, you assure your child they’re not alone and that they, too, can develop skills to overcome life’s difficulties with confidence.

Introducing Gentle Coping Methods

Teaching coping strategies is a way for children with PDA to manage their feelings. One simple but effective technique is “balloon breathing.” This approach involves you and your child pretending to inflate a balloon by taking deep, slow breaths and exhaling gently. It’s a playful way to practice deep breathing while also regulating tension. As mentioned earlier, apps like Calm have guided breathing routines and meditations, making it easy to incorporate this calming practice into your routine. 

Another idea is the “worry jar.” In this project, your child writes their worries on small slips of paper and places them in a jar. Physically putting their worries away gives them a means to externalize their anxiety and regain a sense of control. Such a simple act can bring immense relief.

Physical activity is another option for coping. Whether it’s a walk outside, playing in the park, or engaging in creative movement, exercise releases endorphins, which reduces stress and improves mood. If your child enjoys being outdoors, spending time in nature can be calming. By engaging them in activities they love, such as running, playing, or even doing yoga, you can help them manage their emotions. These coping tools equip your child to handle their feelings with composure, providing simple resources they can use in any situation.

Encouraging Positive Self-Talk

We all know how uplifting it can be when someone offers a kind word—it boosts our confidence and helps us tackle whatever lies ahead. Encouraging positive self-talk can have the same effect on children with PDA, supporting them to grow emotional resilience. Often, these children have negative thoughts like, “I can’t do this,” or “I always mess up.” Replacing these thoughts with affirmations such as, “I can try my best,” or “It’s okay to make mistakes; that’s how I learn,” can change their mindset from fear to capability. This gentle switch builds confidence and promotes trust in themselves.

One way to introduce this is through books that teach children how to shift away from negative thoughts. Consider using the book What to Do When You Grumble Too Much by Dawn Huebner as it conveys easy-to-understand techniques to transform negative thinking into positive self-talk. Incorporating a daily practice where your child notes one positive thing about themselves can be a simple yet powerful method to reinforce their positive qualities and boost self-esteem. For some children with PDA, even compliments are overwhelming, making this practice useful as it allows them to internalize positivity without the pressure of direct praise. Showcasing their successes acknowledges their achievements in a safe and reassuring way. 

Modeling Resilient Behavior

Just as positive self-talk can build determination in your child, modeling steady, adaptable behavior is another powerful approach. Children learn a lot from observing the surrounding adults, especially in how they handle difficult situations. By showing how to stay calm under pressure, handle setbacks with grace, and practice self-compassion, you give your child an example of how to approach their own challenges.

For instance, when faced with a challenging task, you might say, “I’m experiencing a lot of pressure, so I’ll take a few deep breaths.” Sharing this process normalizes feelings of stress and gives your child a simple method to manage their own emotions. In another example, you could acknowledge a mistake by expressing, “I didn’t respond to that as well as I could have, but that’s okay. I can think about how to do it differently next time.” By showing how to ease stress, reflect on mistakes, and find solutions, you model regulation in a way that motivates your child to do the same.

When you let your child know mistakes are normal, you teach them that each experience is an opportunity to improve and get a little better. This helps them understand that improvement happens over time, and that perfection isn’t the goal—it’s the willingness to keep going, to try again, and to view each moment as valuable. Pointing out that no one is perfect helps your child become more comfortable with their own missteps, strengthening their emotional resilience.

Building Emotional Resilience in the Family

While developing personal resilience is beneficial, it is equally important to nurture this skill across the whole family. You should build a space where every family member experiences being heard, valued, and supported. One way to strengthen family adaptability is to hold regular family meetings. These meetings enable everyone to express their thoughts, share joys, and voice concerns. This candid communication is beneficial for siblings, who may sometimes experience a sense of being disregarded because of the extra attention a child with PDA often receives. Facilitating open dialogue can prevent frustration or resentment from building up.

After a tough week, a family meeting can encourage everyone to reflect on what went well, what didn’t, and how to adjust. These meetings give siblings a chance to express themselves. Openly discussing feelings fosters stronger relationships and a healthier family dynamic. It’s challenging to balance the needs of all children, especially when one has higher emotional or behavioral needs. Collaborative efforts to overcome these challenges create a home where everyone feels appreciated and understood.

Preventing parental burnout is another important aspect of family resilience. When parents are overwhelmed, providing the reassurance their children need becomes much more challenging. Sharing responsibilities with your partner, taking regular breaks, and reaching out for help from friends, family, or professionals are essential for staying balanced and energized. Prioritizing self-care is necessary, and it teaches your children the importance of preserving their own emotional balance. 

Maintaining Progress

Now that you’ve put in the effort to build resilience in your child and family, it’s important to keep this foundation strong. Deepening resilience involves balancing consistency with accommodations. While children with PDA often do well with routine, their shifting preferences call for flexibility. It may be time to reconsider the routine if your child shows resistance to it. Their participation in this modification can reduce stress and create empowerment. You could put it as, “It seems like bedtime has been tough. Let’s talk about how we can make it easier.” This collaboration gives your child an active role, making them feel seen, heard, and valued in their own development and growth.

When making changes, use gradual transitions to avoid triggering anxiety. If you are revising your child’s morning routine, give them advance notice: “Next week, we might try a new morning routine. Let’s consider how we can make it smoother.” This heads-up provides them a chance to adapt without becoming overwhelmed.

Progress won’t always be linear, and setbacks are part of the journey. Tackle difficulties with patience, reminding your child that everyone has hard days. Revisit techniques that have worked before and reinforce the coping skills they’ve learned. These small steps will shape your child’s flexibility and aid them in managing feelings.

Looking Ahead

As your child matures, their emotional and behavioral patterns will evolve, and your strategies must change. While the core elements of emotional resilience—consistent encouragement, validation, and flexibility—remain constant, your methods must adjust. While children with PDA will still face challenges, they can handle them better with the right guidance and support.

During adolescence, your role may shift from guiding them day-to-day to supporting their development of self-advocacy skills. Motivating them to participate in decision-making becomes important. As they become more independent, their ability to express themselves, especially in school or healthcare settings, becomes increasingly important. Involving them in meetings with teachers or doctors can establish confidence and reinforce their sense of control. You could mention, “Let’s discuss what’s working at school and what’s not, so we can share your thoughts with your teachers and doctors.”

As they continue to progress, routines must also develop. Providing them the opportunity to take an active role in managing their schedule supports independence and increases their self-respect. Giving them the tools to address change brings them peace and a stronger capacity to cope. Flexibility isn’t just about managing in the present—it also prepares your child for the future. Teaching strategies to regulate emotions, advocate for themselves, and adapt to new situations creates a firm foundation for lasting growth.

Planning for Employment

As your child approaches adolescence and adulthood, it’s important to reflect on their future goals. Planning can reduce anxiety and make your child feel more assured with the next steps—whether those involve advanced education, a career, or independent living. Conversations centered on their interests, concerns, and hopes will shape this dialogue.

Start by exploring your child’s passions and discussing various options. If they are interested in a particular field, exploring hands-on activities such as internships and volunteer or part-time work can help gain realistic insights. Programs that offer these experiences are invaluable in building a foundation of understanding and development. Organizations such as Project SEARCH provide structured internships for young adults with disabilities, giving relevant job skills in real-world contexts. Similarly, The Organization for Autism Research (OAR) shares quality materials, like their publication Life Journey Through Autism: A Guide for Transition to Adulthood, (which covers topics like post-secondary education, employment, and independent living).

When exploring education or vocational training, it’s necessary to find materials tailored to neurodivergent students. For instance, Think College has guidance for individuals with intellectual disabilities who want to pursue higher education. Resources like these equip your child for the transition, whether they plan to attend college, learn a trade, or explore other paths. As an example, you might say, “I know you’re interested in technology—what if we explore opportunities where you can discover more about programming?”

Supporting your child’s transition to adulthood might also include planning for independent living. Some children with autism with a PDA profile may require continued help, while others may become more self-reliant. The ARC’s Center for Future Planning has materials for families to use to form comprehensive plans, covering everything from financial planning to independent living. Together, you can assess your child’s readiness and identify any accommodations or services to ensure their success. By starting these conversations early, you reduce uncertainty and give your child greater control over what lies ahead.

Conclusion

In this chapter, we explored gentle ways to support emotional flexibility for your child and family. Emotional resilience is more than just managing PDA; it lays the groundwork for personal development and deeper and meaningful relationships. We also reviewed some nuts and bolts of planning for your child’s future, including educational programs, job training, and college preparation. As the needs of your child change, your methods will develop, too. By empowering their independence, you’re equipping them with the self-awareness and adaptability necessary to handle future directions and decisions.

Next, we’ll discuss strategies to manage social interactions. Just as emotional resilience promotes positive mental health, forming meaningful connections is just as significant. We’ll explore approaches to encourage your child to build relationships that respect their individual priorities and foster confidence and growth. We’ll provide ideas on how others can learn more about your child, so they can better understand and assist them.

CHAPTER 11

SUPPORTING SOCIAL INTERACTIONS

We’ve all had those times at a gathering where we feel out of place, have no one to talk to, and end up looking at our phones to ease the discomfort. Now, imagine your child with PDA, who may experience the sense of not fitting in even more frequently. Social interactions can be daunting for these children. The pressure to conform to expectations often elevates nervousness, resulting in avoidance behaviors or meltdowns. With thoughtful support, which we will cover in this chapter, you can navigate these moments with your child.

Understanding Social Challenges

For parents and caregivers, it’s important to understand the challenges with interpersonal nuances that children with PDA often encounter. These children may struggle with interpreting cues, forming peer relationships, or responding to authority figures in expected ways. These difficulties can lead to heightened anxiety, avoidance behaviors, or emotional outbursts. To a child with PDA, many social interactions can feel like crossing a dense forest without a clear path. These children may benefit from gentle guidance in grasping conversation nuances, like turn-taking and non-verbal communication. Their sensitivity to perceived demands can make even basic exchanges stressful.

Take Mara, a ten-year-old with PDA. She’s often anxious about joining groups at school because she’s unsure how to take part or what to say. This uncertainty triggers stress, causing her to avoid these events altogether. Her parents recognized this and broke down these situations into smaller and specific steps. Instead of telling Mara to approach the group, they offered suggestions like, “You might watch first, and when you’re ready, you can join in if you like.” They also practiced with her at home, using role-play to build her confidence. By taking small, coordinated steps, Mara began engaging in group activities with less worry and more ease.

Before our daughter began therapy, her teachers explained she would grab and shake her friends when they didn’t want to keep playing with her. She wasn’t angry—she just couldn’t understand why her classmate didn’t want to continue the game and thought shaking them might convince them to come back. This example highlights how children with PDA can misinterpret group settings, emphasizing the importance of teaching them how to respond to social dynamics.

Preparing for Social Situations

When preparing your child for group interactions, especially when they experience anxiety or doubt, creating predictability can make a big difference. Children with PDA often do best when they have familiar, easy-to-follow plans that let them understand what to expect. Discuss plans with them and preparing for what might happen can reduce their anxiety and build their bravery.

The goal is to support your child. One effective approach is Social Stories, developed by Carol Gray. These brief, personalized narratives help children understand common interactions and guide them in responding in manageable ways. Social Stories are simple and tailored for your child, presenting a clear framework for communication.

Social Story Example: Attending a Birthday Party

Imagine your child receives an invitation to a birthday party and is nervous about attending. You can use a Social Story to help, like this:

“Tomorrow is Jane’s birthday party. Mom and I will go to her house at 2:00 PM. There will be other kids there, and we can have fun together. When we arrive, we might say, ‘Happy Birthday, Jane!’ and give her the present we brought. Jane will be happy to see us. If there are games like Pin the Tail on the Donkey, and I don’t want to play, I can watch or do something else. If the room gets noisy, I can cover my ears or ask for a quiet break with Mom. After we sing ‘Happy Birthday’ and have cake, we can say ‘Goodbye’ and ‘Thank you’ to Jane and her mom before we go home.”

This Social Story outlines the event and offers solutions to support anxiety, such as taking breaks or covering ears when overwhelmed. Practicing the story together before the event can prepare your child and give them ease with what to expect.

Social Story Example: Starting a New Activity

Suppose your child is struggling with nerves as they head to their first art class. You can create a Social Story like this:

“On Monday, I will go to my first art class. The class starts at 4:00 PM, and we will learn to draw and paint. When I arrive, I will meet my teacher, Mrs. Green, who will show me where to sit and what materials to use. It’s okay if I don’t know everyone yet. We will start by drawing, and I can ask for help if needed. If I get nervous, I can take deep breaths or ask for a quiet moment. I can take my drawing home to show Mom and Dad at the end of class!”

Social Stories reduce the uncertainty accompanying new experiences, giving your child more control and predictability. By explaining the event step-by-step, they know what to expect, which lessens the apprehension associated with the unknown. These stories are adaptable to any circumstance, from attending a family gathering to trying out a new hobby. The goal is to help your child be confident in new settings.

Visual Supports to Enhance Social Interaction

As highlighted throughout this book, visual supports can help your child gain confidence and security in social situations. Visual supports, whether as schedules, cue cards, or apps, equip your child to navigate group settings with greater independence and assurance by providing tools they can rely on. These tools give clear direction without overwhelming children.

For instance, cue cards can serve as friendly prompts for skills your child may want to remember. These cards might include reminders for greetings, such as, “You can say ‘Hello’ and smile,” or guidance for taking turns, like, “If you want a turn, you might say, ‘Can I have a turn when you’re done?’” They can also share prompts for asking for support—“If you need help, you could say, ‘Could you help me with this, please?’”—and approach the group, with a phrase like, “If you want to join in, you might ask, ‘Is it okay if I play too?’”

You can tailor these cue cards to your child, and they are small enough to be accessed discreetly. Carrying the cards gives them a feeling of independence, knowing they have reinforcement they can refer to at any time. The goal is for your child to socialize with less nervousness. With these visual aids, they can gain self-reliance, knowing useful options are at hand.

Encouraging Structured Playdates

Most of us enjoy spending time with friends, but for kids with PDA, this can be difficult. Children with PDA often want to connect, but may struggle, and heightened anxiety can get in the way. Playdates are an opportunity to practice social skills but can become too much to handle without structure. Planning can lessen anxiety and give your child a feeling of security.

Rather than leaving things open-ended, plan specific activities in advance. Whether setting up a simple craft project or choosing a cooperative game—having a clear focus gives your child security and eases the pressure of deciding what to do next. This structure provides concrete expectations, allowing your child to enjoy the playdate without worrying about the unknown. Each successful interaction strengthens their confidence, reinforcing that communicating with others can be enjoyable and manageable.

Examples of Structured Playdates

Structured playdates can enhance social skills as they present clear roles and predictability that reduces nervousness. For instance, a craft project playdate might involve setting up a craft table with materials for a simple project, like making friendship bracelets. You can assign each child a specific task—choosing colors, cutting string, or tying knots—giving them a shared focus while providing clear roles to facilitate cooperation.

A board game playdate can also be a great choice. Choose a simple, turn-based game that’s easy to follow. Explain the guidelines and rules before starting. You might state, “We’ll take turns rolling the dice, and when it’s your turn, everyone will wait for you to play.” Games that emphasize cooperation can add an extra layer of support and teach patience and turn-taking.

Themed playdates add a fun, creative way to encourage connections, assisting children to participate with ease in group settings. A baking-themed playdate might involve each child taking on a role—measuring ingredients, mixing batter, or decorating cookies. This role-based approach ensures full engagement and promotes teamwork through hands-on activities. These structured events create a predictable environment where your child can communicate and build the skills needed for success in open-ended social settings in the future.

Practicing Social Skills at Home

Practicing social skills at home provides a safe and low-pressure way for your child to build confidence. Through role-playing, discussing social cues, and reinforcing positive behaviors, you support your child in developing these capabilities at their own pace. Begin with simple scenarios, like introducing themselves or asking to enter a game—increasing the complexity gradually. As they become more capable, you can explore scenarios like participating in groups or working through disagreements. The aim is to help your child get used to various social interactions, so they’re ready when similar situations arise in their life.

For example, you might role-play introducing themselves by noting, “Pretend I’m a new kid at the playground. How might you introduce yourself?” Or, to practice asking to join a game, it might help to mention, “What could you say if you wanted to join a group playing soccer? We can practice how you might respond if they say ‘yes’ or if they say ‘no.’” By role-playing a range of outcomes, your child practices handling different responses with greater ease. 

Incorporating daily “social moments” into your routine can also yield long-term benefits. Small tasks like making eye contact during conversations, politely asking for help, or greeting someone with a smile can reinforce these habits. For more structured guidance, programs like Everyday Speech have a comprehensive social skills curriculum with videos and activities. 

Providing Gentle Encouragement

We’ve all heard the saying, “You catch more flies with honey than with vinegar.” For children with PDA, gentle encouragement is very useful. It’s a non-intrusive way to help them with building social skills. Gentle encouragement can reassure them to keep trying, even when faced with challenging situations. What’s key is to be specific and intentional, acknowledging their efforts in a manner that works for them—often in discreet forms, as children with PDA rarely enjoy overt praise.

Subtle praise can make a real impact. Instead of a saying, “Good job,” focus on a specific behavior or effort. You might say, “I noticed you waited patiently when your friend was speaking—that was very thoughtful.” Celebrating small steps can be powerful. You could mention, “You smiled and said hello to your classmate today. That was a nice start to the day.” These gentle recognitions make your child feel seen and valued for their efforts.

Offering choices can be another way to motivate gently. By saying, “Would you like to play the game now or after a snack?” you provide your child a sense of control and reduce anxiety. Positive reinforcement can also come through activities they enjoy. If they shared their toys, you could frame it as, “Since you shared so nicely, we can read your favorite book together.”

Gentle encouragement doesn’t always have to be verbal. Sometimes, a warm smile, a nod, or spending quality time together can be just as meaningful. The goal is to create an environment that inspires your child to learn and grow. By customizing your approach to suit their needs, you can help them stay focused and confident as they develop and fine-tune their skills.

Enhancing Social Comprehension

Children with PDA often appear socially adept on the surface—they can be charming, articulate, and engaging. However, their understanding of interactions might be more superficial than it seems. They may find it difficult to pick up on the subtle layers of relationships, leading to misunderstandings or confusion. For example, my daughter has a strong sense of justice and expects others to adhere to both spoken and unspoken rules. If a friend breaks a rule in a game, she becomes upset and may hold a grudge, struggling to forgive or move on. She also interprets language literally, missing out on sarcasm or subtle humor, which can add to her confusion.

Difficulties with social comprehension can manifest as rigid thinking, where adapting to new ideas or changing plans requires time and effort. Children with PDA might insist on doing things a certain way and become distressed when others don’t follow their preferences. Holding grudges is another common issue; they struggle to let go of perceived slights or mistakes, resulting in strained friendships. They might replay events, fixating on what went wrong.

To help your child develop social understanding, try using Social Stories and visual aids to illustrate different situations and reactions. These tools enable children to visualize and better comprehend different views. Perspective-taking exercises can also be beneficial. Encourage your child to consider the emotional impact of their actions by asking open-ended questions like, “How do you think Sarah felt when that happened?“ This practice promotes empathy and helps develop a deeper understanding of the emotions of those around them.

It is equally important to create an emotional vocabulary. Help your child identify and name feelings in both them and others. Games or books that focus on emotions can make this learning process enjoyable. Reading stories together and discussing the characters’ feelings is one way to work on this, and it offers additional insights into how your child observes emotions.

A key area for improving social understanding is the emphasis on flexibility. Create low-stakes opportunities for your child to adjust to changes, such as altering a family routine, and then discuss how it feels. Praise their efforts to go with the flow, reinforcing that flexibility can lead to positive experiences. You might say, “I noticed you responded well to the shift in plans today—that was great!”

By nurturing these skills, you’re guiding your child to handle the complexities of social interactions, building meaningful relationships, and easing some frustrations they might encounter in friendships. Progress may be gradual, but each step brings them closer to understanding and relating to others on a deeper level.

Navigating Intense Fixations on Others

Related to challenges with social understanding, many children with PDA have intense attachments to certain people—whether a peer, teacher or even a fictional character. While your child’s enthusiasm and desire for connection are genuine, their hyper-fixations can cause problems for both your child and the person they focus on. For instance, my daughter once became deeply attached to a classmate named Emily. She wanted to spend all her time with Emily, talked about her incessantly, and became distressed when Emily wasn’t available. This overwhelming attention eventually made Emily uncomfortable, leading her to pull away. My daughter felt confused and hurt by the distance resulting from this.

Guiding your child through these intense fixations involves open conversations centered on boundaries and creating balanced friendships. Explain that while it’s great to enjoy someone’s company, giving them space is also necessary. You could say, “It’s nice that you like spending time with your friend, but everyone needs time to themselves or with other friends too.” Encourage your child to have relationships with multiple peers, perhaps by facilitating group activities or introducing them to new clubs. Broadening their network of friends like this can diversify their interactions and reduce the intensity with which they might focus on just one person.

Modeling healthy relationships in your own life can also provide a blueprint for your child. Show them how you balance closeness with respect for others’ time and need for space. Keep in mind, the goal isn’t to diminish their affection but to guide them toward healthier, more balanced and enjoyable relationships for everyone involved.

Addressing Social and Sexual Vulnerability

As children with PDA age, their challenges with social understanding can make them vulnerable with intimacy and relationships. Their desire to fit in or please others may place them in risky circumstances without grasping the implications.

Teenagers with PDA, for instance, might misinterpret cues or struggle to understand consent and personal boundaries. They may find it difficult to say no, especially if they perceive a demand or expectation from someone else. My friend’s son, who has autism, once found himself in uncomfortable situations because he thought agreeing to everything was the key to making friends. He didn’t realize that he had the right to set boundaries. It’s critical to have early and open dialogues about body autonomy, consent, and healthy relationships to safeguard your child. Use straightforward language appropriate for their age and understanding. You could mention, “Your body belongs to you, and it’s always okay to say no if someone touches you, or makes you feel, a way you don’t like.”

Role-playing scenarios can be beneficial. Practice scenarios they might encounter, such as someone asking them to do something they don’t want to do. Provide them with phrases they can use, such as “I don’t want to do that” or “I must go now.” Establishing a network of trusted adults your child can contact when they’re uncertain is also important. Ensure they understand it’s okay to seek help without fear of getting in trouble.

Discussing online safety is also a must. Review the risks involved in sharing personal information or images online. Set guidelines together for internet and social media use, emphasizing that your child can always come to you with concerns. Remember, your active involvement is key to helping your child make safe choices and learn to manage relationships.

Handling Public Spaces

Practicing social skills at home is valuable, but assisting your child in applying these skills in public settings is key for their growth. Public outings can be a lot for children with PDA, often because of sensory overload in busy or unfamiliar places. However, with careful planning and preparation, these outings can become opportunities for learning and connection. Gradually transitioning from familiar home settings to real-world environments enhances your child’s confidence and capabilities.

Planning and Preparation

Preparation is key when helping your child navigate public spaces. When you let your child take part in planning, it gives them a sense of control and reassurance.

Before heading out, talk with your child about the plans. For example, if you are considering a trip to the zoo, you might say, “Tomorrow, we are thinking about visiting the zoo. We could see the elephants and the reptiles. What do you think?“ Giving details helps your child know what to expect, allowing them to prepare for the day’s activities. Even with the best intentions, things might not always go as planned—and that’s okay. Having a backup plan can help manage unexpected situations and provide stability for your child.

If you’re visiting a busy amusement park, for instance, discuss an “escape plan” ahead of time. You could say, “If at any point you start to feel overwhelmed, we can take a break in the quiet area. You can decide when you’re ready to return, or if you’d prefer, we can head home.” This contingency plan makes unfamiliar or intense experiences feel safer and more manageable.

When meltdowns occur, certain strategies can make a significant difference. A safe retreat, like your car or a less crowded area, can offer a much-needed break if things get intense. Remaining calm and compassionate is crucial; your emotional state affects your child’s ability to self-regulate and being a steady presence helps them feel more secure. Preventing hunger and thirst by bringing snacks and water can also reduce irritability. Allowing extra time for transitions and breaks can ease the stress that often comes from the experience of being rushed.

By planning ahead, providing sensory tools, and responding with empathy, you can turn stressful situations into opportunities for connection and understanding. With each outing, you’re not only helping your child become more comfortable in their environment but also building trust. Teaching them they can be secure and grounded—even in the busiest settings.

Dealing with Public Meltdowns

Imagine you’re in a busy place with a list of things to do, and your child has a meltdown. Public spaces like stores or crowded streets are filled with stimuli—bright lights, loud noises, bustling crowds—all of which can be too much for children with PDA. This influx of sensory input can quickly overwhelm their ability to cope. While it’s natural to feel anxious in these moments, a bit of planning and a lot of compassion can make all the difference.

When taking my child to places like big-box stores, the fluorescent lights, endless aisles, and the impulse to touch everything, can create the perfect storm for sensory overload. Planning ahead helps minimize stressors. I bring sunglasses to dim the bright lights and noise-canceling headphones to mute the sounds. Before we enter, we discuss a simple plan. I remind her that these tools are available whenever things become overwhelming, and we agree on steps to take if it all becomes too much. This preparation gives her more control, making the experience smoother for both of us.

But even with preparation, things don’t always go as planned. It’s important to understand that when your child encounters intense sensory input, their brain may interpret it as a threat, activating a “fight, flight, or freeze” response. This reaction isn’t about being difficult; it’s a neurological response to stress. In these instances, your role is to remain calm and compassionate, providing gentle encouragement and acknowledgment that your child is doing their best. Reassure them it’s okay to be overwhelmed and remind them of the strategies you’ve practiced together.

Discussing PDA in Public Spaces

Navigating public spaces with a child who has PDA can be a challenge, especially when those around you don’t understand what’s happening. People may stare, share unsolicited advice, or make insensitive comments—adding stress to an already difficult moment. But in these times, your child is your priority. Strangers may not realize that what looks like a tantrum is actually a neurological response to being overwhelmed. Understanding PDA and using compassionate language can bridge this gap in perception.

If you are compelled to explain your child’s condition to others, using specific words can help you articulate their experience more clearly. Phrases like, “pervasive drive for autonomy,” can aid others in understanding that your child’s behavior stems from a deep desire to not lose control, rather than defiance. You might also explain that “they have nervous system dysregulation, making places with bright lights, loud noises, or busy crowds especially stressful.“ This explanation helps others to understand that your child’s reactions are because of sensory overload, not a lack of discipline.

When your child is having a meltdown, you can phrase it as, “They’re having a hard time, not giving you a hard time.” This statement encourages others to realize that your child is struggling to cope, not misbehaving. Or, you might mention, “Kids do well when they can,” or “They thrive in low-demand environments.” These phrases often defuse public scrutiny and foster empathy, so you have time and capacity to focus on your child. 

You can also choose to keep the explanation simple and move attention back to your child. Saying something like, “My child is overwhelmed right now. Thank you for your patience,” allows you to stay present. This explanation helps others see that your child’s reactions are because of sensory overload. It’s also fine if others don’t understand—their lack of awareness is not your responsibility. Remember, you don’t owe anyone a detailed response. You can give your full attention to your child and tune others out.

Focusing on your child is of utmost importance. If you need to discuss their behavior with others, make sure to shift your attention back to your child afterward, offering them reassurance and understanding. You can explain to your child that not everyone will understand them—and that this is okay—can be comforting. You could say, “Some people might not understand your situation, but we’re working through it together.” This approach provides both comfort and models resilience, showing your child that others’ opinions don’t change what they need. By handling these moments with compassion and calm, you’re helping your child feel understood and supported, even when faced with public scrutiny.

Managing Expectations and Practicing Self-Compassion

It’s easy to fall into the trap of thinking every outing must go smoothly—but that’s not the reality, especially with a child who has PDA. There will be good days and bad ones, so managing your expectations is crucial. Not every trip will go as planned, and that’s completely natural.

What matters most is that you’re there for your child, even when things don’t go as expected. Focus on the positives, no matter how small. When reviewing the day, you could say, “Today was challenging, but we also had some nice times. I’m glad we spent time together.” This reflection shifts your mindset to recognize advancement, even on the hardest days.

If you find it hard to treat yourself with compassion, Kristin Neff’s book, Self-Compassion: The Proven Power of Being Kind to Yourself can provide valuable insights into practicing self-kindness during times of stress. Keep in mind, caring for yourself is as critical as caring for your child.

Conclusion

It’s important to help your child learn to interact with others as it contributes to their overall development. By preparing them for these situations, practicing at home, and using tools and methods like visual aids and gentle encouragement, you’re empowering them to build the confidence to form meaningful relationships.

Public outings with a child who has PDA can be challenging, but with patience, planning, and flexibility, these experiences can become opportunities for growth. Adjusting as you go isn’t just allowed—it’s a key part of the process. As you focus on your child’s progress, remember to care for yourself too. Recharging gives you the energy to continue nurturing them. In the next chapter, we’ll explore ways to maintain your balance so you can show up for your child with renewed energy and a grounded sense of self.

CHAPTER 12

NURTURING SELF-CARE FOR PARENTS AND CAREGIVERS

Ibet you’re exhausted right now—maybe even surviving on five cups of coffee daily? The truth is, caring for a child with PDA isn’t just difficult—it’s a constant rollercoaster. The ups and downs, the surprises, and the daily demands can take a toll on you, your relationships, and on everyone in your family. That’s why self-care is vital, not just a luxury. You must prioritize your health to continue caring for your child, managing your career, and being present for your partner, other children, and for those who depend on you. This chapter focuses on ways to help you look after yourself and find the nourishment and rest you deserve.

Embracing Self-Care for Parents and Caregivers

Let’s be honest—caring for a child with PDA requires emotional resilience and the ability to stay grounded, even when everything feels like too much. Regular self-care is not a luxury but a necessity to maintain inner stability and cope with challenges.

Think of self-care as a foundational piece of your parenting. It’s what keeps you steady when obstacles arise. If you find yourself becoming irritable, snapping frequently, or becoming emotionally and physically drained—these are signs of burnout. Please don’t ignore them. It’s your body telling you it’s time to pause, take a breath, and focus on yourself. You’re not alone in this experience.

One parent in an online group mentioned they found solace in taking brief moments throughout the day to practice deep breathing and mindfulness, which encouraged her to stay connected to herself and better assist her child. That’s what self-care looks like—small, consistent acts that replenish you and nourish you so you can parent with greater patience and empathy.

Noticing the Signs of Burnout

Burnout isn’t an overnight occurrence; it accumulates gradually, over time, until you’re completely drained. Early signs like chronic fatigue, irritability, or a lack of interest in things you once enjoyed can sneak up on you. The good news is that you can recalibrate by recognizing these signs early before things become overwhelming. Actively resetting your routine can prevent burnout from becoming too difficult to recover from.

One way to monitor your emotional state is through journaling. By considering your daily mood and energy levels, you can help spot patterns, making it easier to know when to prioritize self-care. With journaling, one mother noticed she became irritable after skipping her daily walks. Her quality of life improved once she committed to sticking to her walking routine. Minor adjustments like these remind you to check in with yourself and focus on the activities that keep you grounded. It’s empowering to pause and recognize: “I’ve been more stressed. I must return to the things that support me to feel centered.”

Achieving Inner Calm

If you realize that you’re feeling burned out, it’s important to do things that will help you get better. Practices like meditation can be powerful techniques to help you tune in to yourself, alleviate stress, and restore balance. Because caring for a child with PDA is demanding, it’s essential to prioritize your own health and wellness to provide the stable presence they need. One impactful self-care practice is Body Scan meditation, which can help calm your mind and body. This mindfulness practice involves bringing your attention to different parts of your body, allowing you to release tension.

To practice Body Scan, find a quiet place and sit or lie comfortably. Close your eyes and take a few deep breaths, noticing the air fill your lungs and exhale. Begin by focusing on the top of your head, noticing any sensations or areas of tension. Slowly shift your attention to your forehead, eyes, cheeks, and jaw, noticing the sensations in each area without judgment. Continue this exploration down through your neck, shoulders, arms, hands, chest, back, abdomen, hips, legs, and all the way to your toes. As you focus on each part of your body, imagine any tension melting with each exhale. This practice encourages you to reconnect with yourself, bringing a feeling of calm and presence.

The best thing about Body Scan is that you can do it with your child. Teaching them this practice is a valuable tool to manage their own stress and anxiety. You might walk them through a simplified version, using soothing language. Imagining a warm, relaxing light traveling from their head to their toes. Keeping the process short and gentle makes it accessible for them.

There are resources available to assist you in this practice. Apps like Calm and Headspace offer guided Body Scan meditations for both adults and children. Websites like Mindful.org provide detailed instructions and even audio recordings to walk you through the process.

Remember, self-care isn’t a luxury—it’s a necessity. Prioritizing your well-being allows you to support your child with patience and compassion. Practicing mindfulness techniques like Body Scan together with your child can also become a bonding experience, reinforcing resilience for both of you. The goal is to form a steady foundation so you both can face life’s ups and downs with greater ease and inner strength.

Responding to Unacknowledged Efforts

It’s natural to be hurt when our efforts go unrecognized, especially when we’ve poured time, energy, and love into doing something special for our child. One parent shared her story in a support group: she had meticulously planned her child’s 18th birthday party, fulfilling every request her child had made. She invested countless hours and resources to make it perfect. Yet, when the day came and went, her child didn’t offer a single word of thanks. The lack of acknowledgment caused her to feel hurt and unappreciated.

Children with PDA and autism often have difficulty expressing gratitude—not because they aren’t appreciative, but because of the unique ways they perceive and process emotions. Struggles with social communication can make it hard for them to articulate their feelings. They might struggle to identify and express emotions because of alexithymia, a trait common in autism spectrum conditions. Overwhelming situations, like a big party, can tax them to their limits, leaving little room for social niceties such as expressing gratitude.

Awareness of these underlying factors can help lessen the sting of unacknowledged efforts. When you realize your child isn’t intentionally being ungrateful, it can change your viewpoint and lessen personal pain. It’s important to practice self-compassion, acknowledging your feelings without judgment. Remaining disappointed or hurt is okay; give yourself permission to process these feelings.

Setting realistic expectations can also help. Adjusting your perspective—understanding that traditional expressions of gratitude may not come naturally to your child—doesn’t diminish the value of your efforts or their impact. Look for alternative signs of appreciation. Your child might show gratitude nonverbally—a smile, a moment of shared joy, or engaging in the event more than usual can all be subtle signs of their appreciation.

Having a calm and open conversation with your child about how their actions made you feel can be a learning opportunity for both of you—but ensure the discussion is free from blame or pressure. Seeking support from others is key. Connecting with friends, family, or others in your support groups who understand your experience can provide comfort and validation.

Prioritize self-care. Whether it’s a hobby, exercise, or quiet time, activities that replenish your energy and spirit give you nourishment. Remember, your efforts make a difference, even if they’re not immediately acknowledged. By caring for yourself and recognizing your child’s unique challenges, you build resilience and sustain the energy needed to assist your child with love and patience.

Individual and Couples Therapy

We recognize that family dynamics vary, and not everyone reading this book has a parenting partner. For those who are parenting solo, we acknowledge the unique challenges you may face and encourage you to reach out to others for additional support. Whether you have a parenting partner or rely on a supportive community, prioritizing self-care and strengthening connections with those around you are essential for your well-being.

Counseling and therapy can be life-changing when dealing with the challenges of raising a child with PDA. Whether it’s individual counseling, couples therapy, or family sessions, having a professional guide you through the highs and lows can make a significant difference. Therapy provides a space to process feelings of guilt, frustration, or exhaustion, and offers tools to manage these emotions.

Individual counseling gives you a personalized outlet to work through your struggles, helping you recharge and approach parenting with renewed resilience. For those with a parenting partner, couples’ therapy can help you align on parenting methods while deepening your relationship. Focusing on your partnership strengthens the shared understanding necessary to overcome obstacles, laying a more stable foundation for your family. Family therapy promotes better communication among all family members, leading to a nurturing environment for everyone involved.

One couple in an online group shared that after attending counseling together, they developed a more cohesive parenting style, which reduced stress at home. If you’re unsure where to begin, The American Psychological Association (APA) offers a directory of licensed therapists to help you find the right professional. Knowing that support is available can be a tremendous relief, making your journey more manageable for both you and your family.

Building Your Community

Creating a solid network goes beyond professional counseling—it can include a mix of family, friends, online communities, and local groups. These relationships provide valuable perspectives, reassurance, and familiarity that can make a real difference. Many parents find that joining local or online groups focused on PDA can be a lifeline. These communities are safe spaces to ask questions, exchange stories, and engage with others who understand. In an online group for parents with children with PDA, one father shared that not only did he learn new ways to encourage his child, but the community also helped him feel less isolated. 

Therapy for Siblings

Siblings of children with PDA often go through a variety of emotions, from feeling unnoticed to confusion and frustration over their sibling’s behaviors. It’s important to acknowledge that, like parents, siblings also benefit from guidance to reflect on and express these feelings healthily. Providing counseling or linking them with understanding communities can become an outlet for building and imparting positive coping strategies.

The Sibling Support Project has online materials and workshops like Sibshops, which are fun, safe settings for siblings of children with special needs—including those with PDA—to share their experiences and connect with peers who understand. One sibling shared attending Sibshops made an enormous difference by reducing her sense of isolation and offering fresh approaches to connect with her sibling. Counseling gives siblings a neutral space to express their thoughts, better understand their sibling’s condition, and work through any feelings of resentment or confusion. It helps to develop ways to manage the unique aspects of having a sibling with PDA, while also focusing on their own health. Just as parents benefit from self-care, siblings can also learn methods to stay balanced and resilient.

Organizations like CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder) offer materials for siblings of children with PDA. These resources enable siblings to better understand their family member. As we continue, recognize and appreciate the true impact of PDA on siblings. Later, we’ll dedicate an entire chapter to this topic, examining the experiences of these siblings and offering guidance on tackling these challenges.

Personal Support Workers (PSWs)

As invaluable as therapists are, sometimes you just need an extra set of hands to assist with daily tasks and routines—this is where Personal Support Workers (PSW) can make a real difference. We touched on PSWs earlier in the book, and now we’ll delve deeper into how they can be a practical solution to ease some pressures families face. For families of children with PDA, Personal Support Workers can be a key source of aid at home. Personal Support Workers help with daily tasks, respite care, and implementing therapeutic approaches—giving parents and caregivers relief, while ensuring their child receives consistent, quality care.

In many states, Medicaid covers the cost of PSWs for children with disabilities, including those with autism. This coverage can be a breakthrough for families balancing caregiving and work responsibilities. One mother shared how her PSW engages her child in calming activities—opening her time to work, prepare meals, rest, and pursue personal interests. This extra assistance has restored balance in her life, positively changing the entire family.

An often-overlooked benefit is that family members or close friends already involved in your child’s care may qualify as paid PSWs. This arrangement lets caregivers familiar with your child provide care while receiving financial compensation. Visit medicaid.gov for detailed information about Medicaid Direct Care Workforce and how family members can qualify as PSWs.

While Personal Support Workers (PSW) can be beneficial, we recognize that not all children are ready to be apart from their parent or primary caregiver(s). Some children may find it hard to adjust to having a new caregiver, especially when the environment is unfamiliar. This difficulty is widespread for children who rely on routine and predictability to feel safe and secure. You can start by introducing short, consistent interactions with the support worker in a familiar setting. Gradually extend these opportunities as your child becomes more comfortable. When you give the support worker a straightforward routine and familiar items, it can help your child adjust to the transition.

Embracing Self-Care as a Family

As we’ve explored self-care for individuals, therapy for couples and siblings, and home-based care; it’s also critical to consider self-care practices that benefit the entire family. Caring for the family builds resilience and unity, making it easier to face daily difficulties together. One of the simplest ways to introduce family-wide self-care is through mindfulness practices. Techniques like deep breathing, guided imagery, and progressive muscle relaxation can serve as support tools for everyone. Centering and aligning everyone make daily pressures manageable.

Incorporating self-care can be fun and easy. Small rituals, such as a quick morning stretch or a gratitude check-in at bedtime, reduce stress and show your children the importance of looking after themselves. One family I know dedicates five minutes each morning to connect and set intentions together, which assures everyone is ready for the day ahead. If you’re new to mindfulness, the Headspace app has guided meditations tailored for adults and kids, making it easy to bring a sense of peace into your day, even amid a busy schedule.

Remember that asking for help isn’t just okay—it’s necessary. You don’t have to do everything on your own. Reach out to family, friends, or your community for aid. Platforms like Care.com can link you with caregivers and tutors to help with household tasks. By delegating some of these responsibilities, you can focus on your family’s needs, knowing that self-care doesn’t have to be a solo endeavor.

Connecting with Understanding Communities

Self-care and connection are a must, but an often-overlooked aspect of self-care is finding a community. A connection with a group of people who understand your circumstances can be transformative. These groups offer a refuge for parents, where they can be open and honest about their struggles and find comfort in shared experiences. Sometimes, just knowing others are going through something similar can bring immense comfort.

Online communities like The Mighty are platforms where parents share personal stories about mental health, disability, and raising neurodivergent children. These groups provide insights from others with similar experiences and serve as places to share and find support during difficult times. Organizations like The National Alliance on Mental Illness (NAMI) also offer support groups and educational programs, aligning you with local resources and others who understand.

Be sure to check the section at the end of this book, where we’ve compiled resources for further support. When you are part of a community of people who “get it,” even the most difficult times can seem more manageable.

Conclusion

Helping your child with PDA goes hand in hand with taking care of yourself and your family. By prioritizing self-care, seeking counseling, building a community, and using Personal Support Workers, you create a resilient environment that benefits everyone. Next, we’ll explore siblings’ unique relationships. Children with PDA often require extra attention, which can make siblings feel neglected or bewildered. Chapter 14 will focus on ways to assist siblings, guiding them to cope, communicate, and grow alongside their PDA sibling—strengthening family bonds.

CHAPTER 13

STRENGTHENING SIBLING BONDS IN A PDA FAMILY

Aquote I once heard in a eulogy resonated deeply: “No one knows us better or shares more of our life’s journey than our siblings.” It reminded me of a powerful truth—that the bond between siblings often endures longer than even the time we have with our parents. With this in mind, ensuring siblings feel included and valued in a family with a child who has PDA is key to creating balance and understanding at home. While we’ve previously explored options like counseling for siblings, this chapter highlights another equally important aspect—empowering siblings to play an active role in their neurodivergent sibling’s care and well-being.

From an early age, siblings often have questions and concerns. I recall when my youngest, at just two years old, asked me, “Why is my sister always so mad?” Even at such a tender age, she noticed the differences and was trying to make sense of them. With the right guidance, siblings can become some of the most pivotal people in a child with PDA’s life— playing a key role in their care and overall family dynamic. This understanding should reassure parents that siblings can be a powerful source of inspiration for their PDA child.

Explaining PDA to Siblings

When explaining PDA to siblings, keep the conversation simple, especially with younger children. The goal is to help them understand their sibling’s behavior without flooding them with too much information, fostering empathy rather than confusion or frustration.

You could say, “Your brother’s brain works a bit differently, so things that are easy for you—like cleaning your room or getting ready for bed—may be really hard for him. When he gets upset, it’s not because he’s trying to be difficult, but because he’s overwhelmed and doesn’t always know how to show it.” Or frame it like this: “You know how you get nervous before a big test or when you’re performing in front of people? That’s how your brother usually feels, even with smaller things like homework. It makes everything seem harder for him, so he gets upset more easily.” These explanations allow siblings to understand that their family member isn’t acting out intentionally but is struggling with intense emotions. This recognition opens up opportunities to discuss how they can assist, like giving their sibling space during tough times or suggesting calming activities.

Encouraging Connection

Once you’ve explained your child’s PDA profile to their siblings, the next step is to help them both build a safe and enjoyable relationship. Developing this connection requires an environment of understanding, where both siblings can feel valued and supported. To guide this process, we’ve outlined a few simple, everyday strategies that can make a big difference.

How Siblings Can Connect with a Child with PDA

These approaches focus on creating positive, low-pressure interactions, helping siblings’ bond naturally while respecting each other’s needs.

1. Being a Friend: Siblings often learn from each other, especially when navigating difficult situations. When siblings model calm and positive behavior, it encourages a peaceful home setting. Teaching everyone to practice patience and understanding when their sibling with PDA is overloaded benefits everyone. It helps the child with PDA with security and promotes understanding among the siblings.

Prompt your child without PDA to ask their sibling, “Would you like to play with blocks or read a book together?” Presenting this choice helps their sibling feel in control. Similarly, phrases like “Can we do this together?” instead of direct instructions, ease the pressure children with PDA often have when faced with demands. This subtle shift turns interactions into something more collaborative and less stressful. If the child with PDA reacts negatively, such as refusing to engage, it’s important to remind the other sibling that it’s not their fault and that you appreciate their efforts. 

2. Creating a Cozy Space Together: We’ve previously discussed how having a designated safe place in the home can be transformative for a child with PDA. Involving siblings in creating this space enables them to understand their sibling and share an active role in offering support. Together, you can design a relaxing corner with soft pillows, favorite toys, and sensory aids like fidget spinners or weighted blankets. The presence of calming elements, such as soft music or dim lighting, can further reduce stress. Involving siblings in this task can be as simple as saying, “Let’s make a space where your brother can go when he wants a break. What do you think he’d like in this area? Maybe his favorite stuffed animal or a special blanket?” Presenting this suggestion allows your child to feel aligned to their sibling’s needs.

In our family, with help from my youngest daughter, we built a cozy nook filled with soft toys and books she picked out herself. Now, when her sister wants a break, she can retreat to this calming spot, and both girls take pride in having built it together. My youngest even donated her favorite baby blanket to the cozy corner. It’s become a special place they both enjoy both alone and together.

3. Engaging in Relaxed Activities: Low-pressure, enjoyable activities enhance sibling relationships and reduce tension. Options like coloring, building blocks, or watching a favorite movie create shared experiences without the pressure of social expectations. In these relaxed encounters, siblings bond naturally.

You could suggest, “Let’s all watch a movie.” You can also motivate your non-PDA child to initiate action by saying, “Would you like to draw with your sister? Let her pick what to draw—that way, she’s comfortable.” This communication eases the sense of overwhelm, leading to more positive sibling interactions. If the child with PDA becomes stressed during these moments together, guide the sibling on how to respond, such as suggesting a break or offering a calming gesture.

These kinds of engagements create a bridge between siblings. When my daughters sit down to work on art together or watch a movie, it allows them to just be—without the pressure of demands. These times together form the foundation of their strongest connections.

4. Sharing Individual Time: Safeguarding that each child gets dedicated one-on-one time is crucial. When the family’s focus leans towards the child with PDA, siblings might perceive that they are being ignored. Dedicated time with each child—whether it’s reading bedtime stories or going for a walk—reminds them of their importance within the family.

In our home, we rotate who gets extra one-on-one time each evening. Some nights, my older daughter gets extra cuddles or a special story, while other nights focus on her younger sister. This routine reassures my younger daughter that she’s not forgotten, even when much of our attention is on managing her sister’s needs.

You can tell your child, “I know we spend much time focused on your sibling, but your feelings are important too. I’d like to do something just for us. What would you like to do together?” This simple acknowledgment ensures your child feels seen and valued, reducing jealousy or resentment. It also supports open communication and acknowledges the sibling’s emotions.

Consider setting up regular “dates” with each child—whether it’s a trip to their favorite ice cream shop or a quiet evening at home. You might say, “I loved spending time with you today. I know things can get busy, but I want you to know you’re always important to me.”

Balancing Emotions Within the Family

It’s not uncommon for siblings of children with PDA to have a mix of emotions—confusion, frustration, jealousy, or even resentment. These feelings may arise when they perceive their sibling is “getting away” with behaviors that others wouldn’t tolerate from them.

If a child with PDA has daily meltdowns getting ready for school, resulting in delays, a sibling might think, “Why do I have to get ready quickly while my sibling gets all this extra help and time?” Validate these feelings while also offering perspective. You could approach it by saying, “I understand it appears unfair sometimes, and I know it seems like your brother is getting extra help. But for him, even small things, like getting dressed, can be stressful.”

This kind of explanation shifts the perspective, encouraging the sibling to view their family member’s difficulties with compassion. By acknowledging their emotions and supporting them in understanding the challenges their sibling faces, you create an understanding that builds empathy and minimizes resentment.

Nurturing Siblings’ Emotional Health

It’s natural for siblings to feel like they must step into a caregiving role for their sibling with PDA—especially when they witness their struggles first-hand. While this can nurture understanding, recognize that this responsibility can sometimes become overwhelming, often leading to anxiety or anger. As parents, it’s our role to remind siblings it’s not their job to manage the feelings or behaviors of their sibling. They deserve the freedom and time to focus on themselves.

When a sibling senses a responsibility to soothe their PDA sibling during a meltdown, this role may burden them. You could say, “I see how much you care for your sibling and want to help when they’re upset, and that’s so thoughtful of you. But remember, it’s not your responsibility to fix things when he’s having a hard time. We are here to help him. It’s okay to take a break or step away if needed.”

This guidance acknowledges their desire to offer aid while emphasizing that they aren’t responsible for their sibling. It encourages them to focus on themselves without guilt, which is necessary for maintaining an emotional balance. Don’t avoid letting them admit to anger, jealousy, or being overwhelmed. Reassure them that having mixed feelings doesn’t mean they don’t love their sibling—it just means they’re human. You might put it as, “It’s normal to be frustrated sometimes, especially when things get tough at home. That doesn’t mean you don’t love your sibling—you’re just feeling a lot, and that’s okay.”

Family Activities that Foster Connection

When you find things everyone can enjoy together, you strengthen family bonds. It’s not always easy, but when you experience those moments where things just click, it’s an immense relief. Many families succeed with outings or projects that cater to everyone—especially sensory-friendly ones that allow for flexible participation.

One family found that nature walks became their favorite pastime. The peaceful environment gave the child with PDA the space to be calm while the sibling enjoyed exploring and talking. It became something everyone looked forward to, free from the pressure that often comes with structured activities.

Another family discovered that working on creative projects together was a great way to connect. Options like painting, gardening, or baking lets each child join in at their own pace. Their child with PDA might choose colors for the artwork or assist with minor tasks in the garden, while the other sibling takes on a larger role. The focus was on making sure everyone was involved without being overloaded.

In our family, we’ve made a dinnertime ritual where my daughters take turns answering the same three predictable questions: 1) What was your favorite part of the day? 2) What’s something interesting you learned today? 3) How did you help someone today? Both girls participate, and because we ask the same questions every evening, my daughter with PDA doesn’t perceive it as a demand. She’s prepared, and this consistency encourages her to participate with comfort. Having her sister answer alongside her deepens their relationship. Focusing on relaxed, enjoyable activities creates a happier home and encourages positive interactions.

What to Do When the Sibling With PDA 'Ruins' Everything

It’s challenging when family plans change because your child with PDA is struggling. It’s equally tough on their siblings, who may get disappointed or upset. Your other children might wonder, “Why do our plans always have to change because of my sibling?” Address statements like this openly and compassionately—inspiring everyone to understand and better cope with the situation.

First, acknowledge your child’s feelings without judgment. Tell them it’s okay to be disappointed or frustrated when plans change. You could say, “I understand that you’re upset we couldn’t go to the park today.” Validating their emotions helps them feel seen and heard.

Next, explain things in age-appropriate terms. A phrase you might use is, “Your sister is very stressed right now, and she requires some extra help from us. Just like when you’re scared or upset, we comfort you.“ Explaining this enables them to understand that their sibling’s behavior isn’t intentional, but a reaction to intense stress.

By using visual schedules, Social Stories, or gentle previews of what’s coming, you can minimize disruptions and prepare your child for upcoming plans. These practices can help them gain a sense of greater safety and reduce anxiety surrounding transitions. Involve your other children in creating flexible plans. Together, you can brainstorm alternative activities or “Plan B” options that everyone enjoys. 

Set aside special one-on-one time with each of your children. Intentionally, spending time together strengthens your bond and shows all your children that you value and care for them, even with a sibling who has different needs. These dedicated moments show your other children that their desires and interests are important to you too. It doesn’t have to be elaborate—walking around the neighborhood, a game night, or baking together can make a big difference.

Keep in mind that open dialogue is key. By nurturing empathy and understanding, you support your other children to recognize that while their sibling may sometimes affect family plans, everyone works together to help one another.

Conclusion

Balancing sibling relationships in a family with a child who has PDA calls for understanding, patience, and careful consideration. You can help each child feel noticed and heard by building an understanding between siblings. This keeps communication open and ensures everyone is included. Every family dynamic is different, and finding what works best for you is important. The goal is an environment where all family members experience being valued, connected, and understood. In the next chapter, we’ll explore strategies to help your child with PDA develop strong expressive abilities and work toward greater independence.

CHAPTER 14

ENCOURAGING INDEPENDENCE AND BUILDING SOCIAL SKILLS

Iimagine you’ve spent nights lying awake, wondering what the future holds for your child—will they find their path in the world and grow into independence? What will that path look like? How can you guide them along the way? The good news is that by starting now, you can support your child in learning the skills to become self-reliant. In this chapter, we’ll look at ways to build independence and enhance communication, giving them confidence to handle daily situations with less distress.

Throughout this book, we’ve explored various strategies to support your child’s development. While some concepts revisit ideas from earlier sections, it’s important to highlight them again here—especially as we delve into encouraging independence. Many readers may skip around the book based on their immediate needs, so reinforcing concepts that encourage independence are presented in this chapter.

Understanding the Challenges of Independence

Children with PDA often find new tasks or responsibilities daunting because they can seem like too much of a demand. The key to promoting independence is to break down tasks into smaller, manageable steps, making them less intimidating.

When helping my daughter with snack time, for example, I simplified the activity by offering two or three options instead of overwhelming her with the entire pantry. I’d hold up two choices at a time, allowing her to pick one, and repeated this until she had a complete snack. This approach empowered her and made snack times smoother. Another parent shared how they built independence in their son by teaching him to pack his school bag. They started by making a simple checklist with pictures of each item. Over time, he became more self-reliant and eventually began packing his bag with no need for the checklist—giving him a greater sense of responsibility. These minor changes can make a meaningful difference in making children with PDA more comfortable in their daily lives.

Strategies to Encourage Independence

We’ll now cover some methods to help foster independence, build your child’s confidence, and reduce anxiety. By incorporating choice and flexibility, you’ll see how small shifts in everyday routines can promote self-reliance, while creating opportunities for open dialogue and decision-making.

Offering Choices and Providing Flexibility

One powerful way to help your child become capable and less anxious is by presenting choices. Providing options gives your child a sense of control and enables them to decide—introducing flexibility that reduces overwhelm and supports independence. In our household, we’ve implemented a whiteboard system that my daughter uses to plan her schedule, listing tasks for the next day. We placed the magnetic board on our refrigerator. Most days, she comes downstairs and starts checking off items on her list before even saying ‘good morning’. Sometimes, she’ll rearrange the order of tasks by drawing arrows, adapting without being stressed. This flexibility allows her to adjust to her terms and still achieve success.

Another family shared how they promote flexibility and independence in their son by encouraging him to choose his own after-school activities. They started with simple choices—like deciding between two games or different hobbies—and expanded his options as his confidence grew. Now, he selects his own activities and is open to changes, like trying something new if a friend suggests it. This empowerment not only boosted his independence, but also his resilience.

Introducing Responsibility Gradually

As your child becomes skilled with smaller tasks, slowly introducing additional responsibilities can make them seem manageable. This step-by-step process strengthens capabilities and reduces worry by avoiding the overwhelm of too many new tasks at once. For instance, a neighbor outlined how their child began by setting the table for dinner. As the child became more proficient, the neighbor added additional responsibilities, such as helping with meal prep or tidying up after meals. This incremental progress made the tasks achievable, turning each success into a stepping-stone toward independence.

We’ve followed a similar technique in our home. Once my daughter became comfortable choosing her clothes, we slowly added tasks like making her bed and packing her school bag. We introduced each new responsibility thoughtfully, letting her enjoy a sense of accomplishment before moving on to the next.

Encouraging Problem Solving

Your child’s development of problem-solving skills fosters independence. When we counsel them through problems—whether it’s finding a missing toy or solving a puzzle—we build their trust in their own abilities.

One family shared how they coached their son in tackling his frustration with puzzles. Instead of stepping in to solve it for him, they offered gentle prompts like, “What piece might fit here?” or “How about trying to flip it over?” This gave him the space to work things out, and with practice, he could brainstorm answers on his own.

Similarly, a fellow online parenting group member shared that she used language to support her daughter during the morning rush. When her daughter couldn’t find a missing item, rather than stepping in, she would ask, “Where did you last see it?” or “Where else could we check?” By directing her through these questions, the child learned to think critically and troubleshoot on her own. This shift in perspective encouraged her to take ownership of minor challenges.

Building Communication Skills

Effective interaction is key to motivating kids with PDA to express themselves and to engage confidently with their surroundings. For many children, communicating can be difficult, especially when they’re overcome or anxious. Learning these techniques can help them gain control over their responses and experience a greater sense of understanding.

Enhance Expressive Language with Visual Supports

It’s important for your child to express their thoughts and emotions to manage frustration. One practical approach is using visual aids to assist children who struggle with verbal communication, especially during heightened emotional states.

One family shared online that they use a ‘feelings wheel’ with their son. This visual tool categorizes emotions into a color-coded wheel, helping him identify and share his feelings more easily. When he has a hard time finding the right words, he can point to his emotion on the wheel. Since introducing the feelings wheel to their son, they’ve noticed a reduction in his meltdowns, as he can now better express what’s happening inside.

Another process involves using picture cards or a communication board, particularly for children who are typically verbal but cannot speak when anxious. These methods offer kids simple ways to express their needs when words are out of reach.

Practicing Turn-Taking and Conversational Skills

Turn-taking can be hard for children with PDA. Waiting for their turn or joining in a back-and-forth dialogue can overwhelm them, as they may perceive even a simple conversation as a demanding requirement.

Practicing turn-taking in a relaxed environment can make conversation seem more natural. One family I know turned this practice into a fun dinner game. They went around the table, with each person taking a moment to share part of their day and then inviting someone else to join the conversation with a question. By framing it as a game rather than a typical conversation, their child with PDA communicated comfortably, because it seemed playful rather than confrontational. 

Another family used board games to work on turn-taking. Their son had difficulties with group discussions at school, so they started playing games at home that called to wait for turns. Over time, their son became more at ease with waiting, even asking others’ questions like, “What will you do next?” Practicing during play enabled him to become more proficient when interacting with others in different settings. By engaging in turn-taking and self-expression in a low-demand, enjoyable space, children with PDA can build their conversational skills in a controlled and fun way.

Encouraging Active Listening by Breaking Things into Steps

For children with PDA, active listening can be challenging, especially when they’re overwhelmed. Active listening involves tuning into the speaker’s words and emotions, which can sometimes be too intense for the child. The goal is to motivate them to engage without pressure.

Since even the request to “listen” can be stressful for many children, it’s necessary to break the concept into small, easy to achieve steps to avoid triggering overload. Begin by explaining that active listening doesn’t have to involve direct eye contact if that’s uncomfortable. Instead, you might say, “You can show you’re listening by facing me or nodding.” Make responses simpler by not asking your child to repeat everything they’ve heard. You could ask, “Can you tell me one thing you heard?” This can help reduce pressure and allow them to focus on the main idea.

When distractions arise, cues—like a light tap on the shoulder—can refocus their attention without criticism. Create times to practice active listening in relaxed settings. Sometimes, children can’t focus on listening because their emotions are too strong and distracting. In these moments, acknowledge their feelings first by stating, “I can see this seems like too much right now. Let’s take a break.”

Start with brief exchanges and celebrate minor victories. Acknowledge even minimal effort, like saying, “I appreciate you listening when I talked about our plans.” By breaking active listening into steps and providing gentle, low-pressure opportunities to practice, you can support your child in developing expressive communication.

Social Stories to Teach Communication Skills

Social Stories are an important tool for improving communication because they provide a structured way to practice and anticipate these encounters. By breaking down specific scenarios into manageable steps, Social Stories guide children through them.

One family used a Social Story to teach their son how to ask for help at school when he was confused. The story outlined each step—raising his hand, looking toward the teacher, and stating what he wanted. This structured approach reduced his hesitation in asking for help, making him more comfortable with the process. Another family created a Social Story to teach their child how to introduce themselves to new people. The story used simple language and pictures to show how to start a conversation by saying, “Hi, my name is…” Practicing with the Social Story gave the child the confidence to meet new people, making these situations less intimidating.

Social Stories have an undeniable impact, as you can customize them to address any challenge your child faces. They provide a visual and written tool that children can revisit anytime, reinforcing the lesson and reducing anxiety in unfamiliar settings.

The Incredible Strengths and Contributions of Children with PDA

We’ve focused a lot on the responsibilities of parenting a child with PDA—experiences that can sometimes be overwhelming. But we can’t overlook the many positives worth celebrating. Children with autism with a PDA profile possess a wealth of strengths and qualities that, when nurtured—bring immense value to their families, friends, schools, and communities. Their unique perspectives and abilities don’t just enrich their own lives, they can make meaningful contributions to society in impactful ways.

I recall a time when my daughter was very young, and a mother came up to me, beaming. “I love talking to your daughter,” she said, “it’s like having a conversation with a witty and self-aware college student.” That moment stands out because it highlights one of the most wonderful attributes children with PDA often have—their exceptional charisma. Many children with PDA have a natural ability to engage others with warmth, humor, and curiosity. This spark not only draws people in but makes the child a joy to be around; they can light up a room when they feel regulated and understood.

Adults and peers alike are frequently drawn to their politeness, genuine interest, and observational insight. Times like these remind me that while raising a child with PDA can come with its demands, there are just as many occasions to celebrate and be inspired. In school settings, these children often stand out as innovative thinkers. They question norms and think outside the box, which results in creative problem-solving and fresh ideas. When they’re encouraged and secure, they contribute perspectives that enhance group discussions and projects, making them valuable contributors to any classroom dynamic.

Children with PDA are also observant, picking up on details others might miss. This heightened awareness allows them to be empathetic and sensitive friends, making them skilled at helping peers. Their ability to understand and relate means they often serve as mediators and compassionate companions in their communities. Their passion for their interests runs deep. When they are doing something they love, they can become experts—eagerly sharing their knowledge with those around them. This enthusiasm can motivate classmates, teachers, and family members alike.

At home, these children bring joy and liveliness to family life. Their imaginative play and storytelling often make for a rich, dynamic atmosphere that siblings and parents enjoy. When they include others in their creative pursuits, they are deepening family connections.

On a larger scale, when children with PDA have their extraordinary abilities recognized and valued, they can make meaningful contributions to society. Their ability to challenge conventional thinking and share new viewpoints leads to innovations across various fields, from art to technology. We unlock their tremendous potential by creating contexts that support them in expressing themselves.

Remember that we see these qualities most clearly when children feel understood, respected, and regulated. Conditions that provide flexibility, choices, and reduced demands support them to thrive. When we use approaches like collaborative language, customized learning plans, and empathetic communication, we can unlock their potential. Children with PDA bring an array of wonderful qualities. By leaning into their strengths, we help them reach their full potential.

Conclusion

Creating strategies for interaction and fostering independence in children with PDA are key steps toward equipping them to face life’s struggles with confidence. By breaking tasks into steps, offering choices, and using gentle encouragement—you teach your child to feel more in control and less overwhelmed. By enhancing communication through expressive language, visual supports, turn-taking, and active listening, your child will relate comfortably with others. Social Stories impart guidance for managing stressful interpersonal dynamics, making complex situations manageable. By implementing these practices, you’re doing more than just teaching skills—you’re nurturing an individual who’s better equipped to face everyday obstacles with ease. Progress may be gradual, but each small success reinforces your child’s ability to shine in the world.

CONCLUSION

As we arrive at concluding A Practical Parent’s Guide to PDA and Autism, I want to extend my heartfelt thanks for allowing me to share this journey with you. Raising a child with PDA can be both challenging and overwhelming. I hope these pages have offered you meaningful insights, compassionate support, and renewed confidence as you guide your child’s growth.

Throughout our exploration, we delved into an array of strategies designed to support your entire family. The journey began with identifying the early signs of PDA and underscoring the importance of creating a supportive foundation for your child’s development. Assembling a dedicated medical team to address every aspect of your child’s health emerged as a vital step. We also covered essential aspects such as crafting a nurturing environment both at home and at school, securing financial and therapeutic assistance, and recognizing potential triggers.

Together, we examined how predictable routines can reduce anxiety and foster a sense of safety for your child. Learning to manage meltdowns through de-escalation techniques and creating safe spaces has now become an integral part of your parenting toolkit. Building emotional flexibility was another cornerstone of focus, giving your child constructive ways to cope with difficult emotions.

Fostering your child’s social interaction skills was another focal point, as we reviewed how to help them build relationships at a comfortable pace. From there, we emphasized the importance of self-care and building a strong support network to keep you grounded and resilient. You remain a central pillar in your child’s support system, and looking after your own well-being is not a luxury—it is a necessity.

We reviewed how siblings too, benefit from feeling valued and included in family life. Finally, this guide provided effective communication techniques to nurture independence—preparing your child for a future filled with possibilities.

Teamwork with your healthcare team will ensure the best outcomes. Every child is unique, and developing a personalized plan with professionals will provide the most effective guidance. They are your partners, and their expertise is invaluable.

One consistent theme throughout this book has been the role of community. While we've explored many concepts and ideas, I encourage you to take the next step by joining a group. Connecting with others who genuinely understand—whether through local events, online forums, or parent communities—can provide emotional nourishment and a sense of belonging. These relationships can be a lifeline during challenging times—a source of strength when it's needed most.

Remember that every family and child is special and different, with its own unique story. The concepts shared here are not rigid rules, but flexible frameworks designed to be adaptable. What matters most is approaching each situation with patience, understanding, and a commitment to seeing the world through your child's eyes. With these values at the heart of what you're doing, you're already making a remarkable difference.

Your child has incredible potential, and with your care, patience, and love; they can flourish and achieve all they're capable of. As you move forward, remember that it's not about perfection but progress. Embrace each step you take and celebrate the minor victories along the way. Every step forward, no matter how small, is a victory. There will be hard days, but there will also be moments of profound joy and growth. Let the concepts in this book inspire you, but know that true transformation comes from your unwavering love and dedication for your child—the most powerful assets you have.

For readers outside the United States, please refer to the International Resources section at the end of the book for guidance on accessing specific supports available in your region. Wherever you're located, there are resources and networks to support you.

Thank you again for making this book a part of your family's story. Together, we can empower our children to build the courage and skills they need to lead fulfilling lives with bright and promising futures.

Michelle

SHARE YOUR JOURNEY WITH OTHERS

As you move through this book, I hope its message of understanding and connection has resonated with you. Parenting a neurodivergent child comes with unique challenges, but you don’t have to face them alone. There is power in community, and I encourage you to seek support—whether through local groups, online spaces, or conversations with those who truly understand.

You are your child’s safe place, their biggest advocate, and their guiding light.

Your presence, patience, and commitment make all the difference.

If this book has offered insight or support, I’d love to hear from you! Leaving a review helps other parents find the guidance they need on their journey.

Leave a Review in Seconds

Thank you for being part of this journey. Your review can make a world of difference to another struggling parent.

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SUPPORT GUIDE FOR INDIVIDUALS RESIDING IN THE UNITED STATES

In the United States, various resources are available to support families navigating the medical diagnosis process, educational systems, and home-based care. Programs like Children’s Health Insurance Program (CHIP), Early and Periodic Screening, Diagnostic, and Treatment (EPSDT), and Medicaid ensure that children with disabilities, including autism and ADHD, receive necessary healthcare services.

The following list serves as a starting point, featuring resources referenced throughout the book to help you access essential tools and support for your journey. Always consult with a qualified medical professional to ensure that the services and supports you pursue are appropriate for your child’s specific needs.

ADVOCACY

Kids Waivers

https://www.kidswaivers.org

An informational resource that helps families navigate Medicaid waivers and related programs for children with disabilities across the United States.

National Alliance on Mental Illness (NAMI)

https://www.nami.org

NAMI offers support groups and educational programs for families of individuals with mental health conditions, including those with PDA.

National Association of Disability Representatives

https://www.nadr.org

A professional organization that supports advocates and representatives dedicated to assisting individuals in obtaining Social Security Disability benefits.

National Disabilities Rights Network

https://www.ndrn.org

A nonprofit organization dedicated to advocating for the civil and human rights of individuals with disabilities through legal advocacy, education, and support.

NEXT for AUTISM

https://nextforautism.org/

Partners with and funds organizations to expand access to programs and services for the autism community.

PDA North America

https://pdanorthamerica.com

PDA North America offers resources for families dealing with emotional regulation issues in children with PDA, including therapy options.

The Arc

https://thearc.org

A national organization advocating for individuals with intellectual and developmental disabilities, providing guidance on diagnosis, therapy options, and insurance.

The Autistic Self Advocacy Network (ASAN)

https://autisticadvocacy.org/

ASAN provides support, community, and public policy advocacy for people on the autism spectrum, empowering self-advocacy.

The Autism Society

https://autismsociety.org/

The oldest and largest grassroots autism organization in the U.S., offering advocacy, education, services, and support to autistic individuals, their families, and professionals.

The PDA Society

https://www.pdasociety.org.uk

Provides extensive resources, information, and support for individuals, families, and professionals dealing with Pathological Demand Avoidance.

Understood.org

https://www.understood.org

A nonprofit organization dedicated to providing resources, tools, and support to individuals with learning and thinking differences and their families to help them thrive at home, in school, and at work.

Wrightslaw

https://www.wrightslaw.com

A leading resource for parents, educators, and attorneys dealing with special education law and advocacy, providing detailed information on IDEA, 504 Plans, and navigating the special education system.

BOOKS

Curiosity Chronicles

curiositychronicles.org

Engaging, story-based history and social studies curricula designed to inspire curiosity and critical thinking in students through a narrative approach to learning.

Self-Compassion: The Proven Power of Being Kind to Yourself by Kristin Neff

https://self-compassion.org/books-by-kristin-neff

A guide that explores the science and practice of treating yourself with the same kindness and understanding you'd offer a close friend.

What to Do When You Grumble Too Much by Dawn Huebner

https://www.dawnhuebnerphd.com/what-to-do-when-you-grumble-too-much-a-kids-guide-to-overcoming-negativity/

A resource for teaching children about positive self-talk and managing negative thoughts.

CHARTER SCHOOLS

Connections Academy

https://www.connectionsacademy.com

A tuition-free online public school that offers flexible, high-quality K-12 education tailored to students' individual needs, supported by certified teachers and a comprehensive curriculum.

K12 Online Schools

https://www.k12.com

Provides flexible, tuition-free online education programs for students in kindergarten through 12th grade, offering personalized learning experiences supported by certified teachers.

EMOTIONAL SUPPORT AND MENTAL HEALTH RESOURCES

PARENTS AND CAREGIVERS

Parent to Parent USA

https://www.p2pusa.org

Connects families raising children with disabilities to trained parent mentors who provide emotional support and practical advice.

Family Voices

https://familyvoices.org

Offers peer support groups, webinars, and counseling services, helping parents navigate the emotional stress of caregiving.

CHILDREN

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)

https://chadd.org

Provides emotional support services, coping skills training, and peer mentorship programs for children and adolescents with ADHD.

Therapy for Children with PDA

https://pdanorthamerica.com

PDA North America offers resources for families dealing with emotional regulation issues in children with PDA, including therapy options.

The Sibling Support Project

https://siblingsupport.org

Provides peer support, recreational activities, and mental health resources, including "Sibshops" for siblings of children with disabilities.

EMPLOYMENT

Organization for Autism Research (OAR)

https://researchautism.org/product/a-guide-for-transition-to-adulthood/

OAR provides "Life Journey Through Autism: A Guide for Transition to Adulthood," offering comprehensive resources on education, employment, and independent living for young adults with autism.

Project SEARCH

https://www.projectsearch.us/

A transition program helping young adults with intellectual and developmental disabilities gain work experience through internships, preparing them for competitive employment.

The Arc’s Center for Future Planning

https://futureplanning.thearc.org/

Provides resources to help families create comprehensive future care plans, covering legal, financial, and daily care considerations.

Think College Search

https://thinkcollege.net/college-search

Think College offers a search tool to help individuals with intellectual disabilities find inclusive higher education programs across the U.S.

HOME-BASED SUPPORT

Applied Behavior Analysis (ABA) Therapy

https://www.bacb.com

A recognized treatment focusing on improving specific behaviors like communication, social skills, and academics, administered at home or in clinical settings.

Easterseals

https://www.easterseals.com

Offers Early Intervention services, in-home therapy, respite care, and assistive technology for children with autism and ADHD.

Family Voices

https://familyvoices.org

A national network providing peer support, emotional counseling, and resources for families of children with special healthcare needs.

Medicaid Home and Community-Based Services (HCBS) Waivers

https://www.medicaid.gov/medicaid/home-community-based-services/index.html

Provides Medicaid funding for home-based care services, including personal care, respite care, and therapeutic services for children with disabilities.

LEGAL

Council of Parents Attorneys and Advocates (COPAA)

https://www.copaa.org

A nonprofit organization dedicated to protecting and enforcing the legal and civil rights of students with disabilities and their families through advocacy, education, and legal representation.

Disability Rights Education & Defense Fund

https://dredf.org

A leading civil rights law and policy center dedicated to advancing the rights of people with disabilities through advocacy, legal support, and education.

Home School Legal Defense Association

https://hslda.org

A nonprofit organization that provides legal support, advocacy, and resources to protect and advance the rights of homeschooling families.

National Academy of Elder Law Attorneys (NAELA)

https://www.naela.org/

Provides resources for families planning long-term care and financial security for individuals with disabilities.

National Association of Disability Representatives

https://www.nadr.org

A professional organization that supports advocates and representatives dedicated to assisting individuals in obtaining Social Security Disability benefits.

National Disabilities Rights Network

https://www.ndrn.org

A nonprofit organization dedicated to advocating for the civil and human rights of individuals with disabilities through legal advocacy, education, and support.

Wrightslaw

https://www.wrightslaw.com

A leading resource for parents, educators, and attorneys dealing with special education law and advocacy, providing detailed information on IDEA, 504 Plans, and navigating the special education system.

MEDICAL DIAGNOSIS AND INSURANCE

ADOS-2 (Autism Diagnostic Observation Schedule

https://www.wpspublish.com/ados-2-autism-diagnostic-observation-schedule-second-edition

A standardized assessment tool used by professionals to diagnose autism spectrum disorder through structured observations of social and communication behaviors.

American Psychological Association (APA)

https://www.apa.org

Offers information on finding licensed psychologists or counselors and resources on the benefits of therapy.

Autism Diagnosis Group (ADG)

https://www.adgcares.com/

ADG offers fast, accessible online autism evaluations, reducing long wait times. They work with major insurance providers and provide ongoing support by connecting families with therapists and resources.

Children’s Health Insurance Program (CHIP)

https://www.insurekidsnow.gov

Offers health coverage to children in families that earn too much for Medicaid but cannot afford private insurance, covering diagnostic services, mental health care, and treatment for autism and ADHD.

Early and Periodic Screening, Diagnostic, and Treatment (EPSDT)

https://www.medicaid.gov/medicaid/benefits/early-and-periodic-screening-diagnostic-and-treatment/index.html

A Medicaid benefit ensuring children under 21 receive appropriate preventive, dental, mental health, and developmental services, including diagnosis and treatment for autism and ADHD.

Institute of Functional Medicine

https://www.ifm.org

IFM offers education and resources focusing on personalized, patient-centered therapies that address underlying causes of disease.

Kids Waivers

https://www.kidswaivers.org

An informational resource that helps families navigate Medicaid waivers and related programs for children with disabilities across the United States.

M-CHAT Modified Checklist for Autism in Toddlers

https://www.mchatscreen.com

A widely used screening tool designed to identify signs of autism spectrum disorder in toddlers aged 16-30 months.

Medicaid

https://www.medicaid.gov

Provides health coverage to low-income individuals, including children with disabilities, covering diagnostic and treatment costs for autism, ADHD, and other developmental disorders.

National Autism Center (NAC)

https://www.nationalautismcenter.org

Offers evidence-based practices for autism treatment and guidance on accessing diagnostic services, therapies, and educational supports.

PDA Affirming Providers (PDA North America)

https://docs.google.com/document/d/18mD3towwOpu4bA7lOecVP4p2pAZrl71Pe_qs7Ah80yA/edit?tab=t.0

A curated directory of professionals and organizations that support and work with individuals and families navigating Pathological Demand Avoidance (PDA) in a respectful and affirming manner.

Psychology Today

https://www.psychologytoday.com

Features a comprehensive directory of therapists, counselors, and support groups to help you find qualified professionals in your area.

PX Docs

https://pxdocs.com/

Connects families with pediatric-focused chiropractors, offering natural approaches to support children’s health, including those with neurodevelopmental disorders.

Sensory Profile 2

https://www.pearsonassessments.com/store/usassessments/en/Store/Professional-Assessments/Motor-Sensory/Sensory-Profile-2/

A standardized assessment tool designed to evaluate sensory processing patterns in children and their impact on functional participation in everyday life.

Social Responsiveness Scale (SRS-2)

https://www.wpspublish.com/srs-2-social-responsiveness-scale-second-edition

A standardized assessment tool that measures social impairments associated with autism spectrum disorder and other conditions across a wide range of ages.

TEFRA/Katie Beckett waivers

https://dhcf.dc.gov/katiebeckett

TEFRA/Katie Beckett waivers allow children with disabilities or complex medical needs to qualify for Medicaid coverage based on their own income and assets, regardless of parental income, enabling access to critical care services.

The Upledger Institute

https://www.upledger.com

A healthcare organization specializing in Craniosacral Therapy and related holistic therapies, offering training programs and treatment services worldwide.

Vineland Adaptive Behavior Scales

https://www.pearsonassessments.com/store/usassessments/en/Store/Professional-Assessments/Behavior/Vineland-Adaptive-Behavior-Scales-%7C-Third-Edition/p/100001622.html

Is a standardized assessment tool used to measure adaptive behavior in individuals with developmental, intellectual, and other disabilities, focusing on their ability to perform daily activities.

ONLINE LEARNING

Khan Academy

https://www.khanacademy.org

Known for its instructional videos and practice exercises, this platform covers various subjects and has children revisit concepts at their leisure.

MiAcademy

https://miacademy.co/#/

An accredited curricula for K-12 students, allowing learners to progress through lessons at their own speed.

Outschool

https://outschool.com

With live classes on unique topics, your child can explore interests ranging from art to coding.

Power Homeschool

https://www.powerhomeschool.org

A K-12 program with interactive video lessons, helping children to explore topics visually and at their own pace.

SkyView

https://www.apps.apple.com/us/app/skyview

An intuitive stargazing app that uses augmented reality to help users explore and identify stars, planets, and constellations in the night sky.

Time4Learning.com

https://www.time4learning.com

This platform uses multimedia lessons to make subjects engaging and interactive.

RESPITE CARE PROVIDERS

ARCH National Respite Network

https://archrespite.org

Offers a nationwide network of respite care providers, providing short-term relief for caregivers of individuals with disabilities.

RELAXATION TOOLS

Calm App

https://www.calm.com

Offers soothing music and guided meditations to help calm and distract children during stressful times.

Headspace App

https://www.headspace.com/

A mindfulness and meditation tool designed to help users reduce stress, improve focus, and enhance overall well-being through guided meditations and wellness resources.

RESOURCE GROUPS

Autism Care Today

https://act-today.org

A nonprofit organization dedicated to providing financial assistance and support to families to help children with autism access care and critical services.

Care.com

https://www.care.com

An online platform to find caregivers, tutors, and other support services to help lighten your load.

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)

https://chadd.org

Provides resources and support that can be applicable to siblings of children with PDA.

Sibling Support Project

https://siblingsupport.org

Offers online support groups and resources like "Sibshops" for siblings of children with special needs.

The Mighty

https://themighty.com

An online community where people share stories and experiences related to mental health, disability, and chronic illness.

Therapist Aid

https://www.therapistaid.com

Offers free resources including worksheets, activities, and information on various types of therapy for parents and therapists.

United Healthcare Children's Foundation

https://www.uhccf.org

Provides medical grants to help families cover the costs of children’s healthcare treatments, services, and equipment not fully covered by insurance.

SCHOOL SUPPORT AND EDUCATIONAL RESOURCES

Department of Education or the National Charter School Resource Center

https://charterschoolcenter.ed.gov

The National Charter School Resource Center, supported by the Department of Education, provides high-quality resources, tools, and guidance to strengthen charter schools and support their success across the United States.

Free Appropriate Public Education (FAPE)

https://www.ed.gov/laws-and-policy/civil-rights-laws/disability-discrimination/disability-discrimination-key-issues/disability-discrimination-providing-free-appropriate-public-education-fape

Ensures that all students with disabilities are entitled to access specialized educational services at no cost, tailored to their individual needs, under federal civil rights laws.

Home School Legal Defense Association

https://hslda.org

A nonprofit organization that provides legal support, advocacy, and resources to protect and advance the rights of homeschooling families.

Individuals with Disabilities Education Act (IDEA)

https://sites.ed.gov/idea

Mandates that public schools provide free and appropriate education to eligible children with disabilities, including autism and ADHD, through Individualized Education Plans (IEPs).

National Professional Development Center on Autism Spectrum Disorder

https://autismpdc.fpg.unc.edu

Provides evidence-based practices, training, and resources to improve outcomes for individuals with autism spectrum disorder.

Practical Management Strategy – P.A.N.D.A.

https://uk.jkp.com/products/collaborative-approaches-to-learning-for-pupils-with-pda

Offers educators practical tools to support pupils with Pathological Demand Avoidance through understanding, flexibility, and collaboration.

The National Alliance for Public Charter School

https://publiccharters.org

A nonprofit organization dedicated to advancing the public charter school movement by advocating for high-quality educational opportunities for all students.

U.S. Department of Education’s Summary of State Laws

https://www.ed.gov/teaching-and-administration/safe-learning-environments/school-safety-and-security/school-climate-and-student-discipline/summary-of-seclusion-and-restraint-statutes-regulations-policies-and-guidance-by-state-and-territories

Provides a comprehensive overview of seclusion and restraint statutes, regulations, policies, and guidance across states and territories to promote safe and supportive learning environments.

Vanderbilt University's Functional Behavior Plan

https://iris.peabody.vanderbilt.edu

A framework designed to help educators and caregivers address challenging behaviors in students by identifying their underlying causes and implementing targeted, evidence-based strategies.

Wrightslaw

https://www.wrightslaw.com

Offers comprehensive information on special education law, including guidance on IDEA and 504 Plans, helping parents advocate for their children’s rights.

504 Plans

https://www.ed.gov/laws-and-policy/individuals-disabilities/section-504

Ensures that students with disabilities receive accommodations enabling them to participate fully in school activities.

SOCIAL SECURITY DISABILITY BENEFITS AND MEDICAID

Children’s Health Insurance Program (CHIP)

https://www.insurekidsnow.gov

Offers health coverage to children in families that earn too much for Medicaid but cannot afford private insurance, covering diagnostic services, mental health care, and treatment for autism and ADHD.

Disability Benefits Center

https://www.disabilitybenefitscenter.org/

Provides guidance on applying for Social Security Disability Insurance (SSDI) and SSI, helping families navigate the application process.

Early and Periodic Screening, Diagnostic, and Treatment (EPSDT)

https://www.medicaid.gov/medicaid/benefits/early-and-periodic-screening-diagnostic-and-treatment/index.html

A Medicaid benefit ensuring children under 21 receive appropriate preventive, dental, mental health, and developmental services, including diagnosis and treatment for autism and ADHD.

Medicaid

https://www.medicaid.gov

Provides health coverage to low-income individuals, including children with disabilities, covering diagnostic and treatment costs for autism, ADHD, and other developmental disorders.

National Disability Institute (NDI)

https://www.nationaldisabilityinstitute.org/

Offers financial education and counseling for individuals with disabilities, including resources for SSI, SSDI, and other financial programs.

Social Security Administration (SSA)

https://www.ssa.gov/ssi/text-child-ussi.htm, www.ssa.gov/applyforbenefits

Administers the Supplemental Security Income (SSI) program, providing financial assistance to individuals with disabilities.

Social Security Administration (SSA) Child Disability Report

https://secure.ssa.gov/apps6z/i3820/main.html

An online tool that helps parents or guardians provide detailed information about a child’s medical conditions to determine eligibility for Supplemental Security Income (SSI) benefits.

SPECIAL NEEDS TRUSTS AND FINANCIAL SUPPORT

Academy of Special Needs Planners (ASNP)

https://specialneedsanswers.com

Provides resources and guidance for families planning the financial future of a loved one with a disability, assisting with setting up Special Needs Trusts.

National Academy of Elder Law Attorneys (NAELA)

https://www.naela.org/

Provides resources for families planning long-term care and financial security for individuals with disabilities.

Special Needs Alliance

https://www.specialneedsalliance.org

A national network of attorneys specializing in disability law, offering legal advice on setting up special needs trusts and managing benefits.

TEACHING TOOLS

Carol Gray Social Stories

https://carolgraysocialstories.com

Offers personalized stories that describe specific social situations and appropriate responses, helping children with PDA navigate interactions.

Choiceworks App

https://apps.apple.com/us/app/choiceworks/id486210964

An app designed to help children with autism and other special needs by providing visual supports for daily routines, emotional regulation, and promoting independence.

Everyday Speech

https://www.everydayspeech.com

Offers a social skills curriculum with videos, activities, and worksheets to help children practice and improve their social skills.

Goally

https://getgoally.com

A device that assists children with transitions by providing visual and auditory prompts for upcoming activities.

GoZen! Program

https://gozen.com

Offers techniques to help children understand and manage their emotions, including methods for validating feelings.

Happy Hooligans Reward Charts

https://happyhooligans.ca

Offers printable reward charts customizable to fit your child’s routine and reinforce positive behavior.

MindUP Program

https://mindup.org

Provides resources for parents and teachers to help children develop resilience through mindfulness and positive psychology.

The Feelings Wheel by Dr. Gloria Willcox

https://feelingswheel.com

A visual tool that helps children identify and articulate their emotions, enhancing expressive language skills.

The Incredible 5-Point Scale

https://www.5pointscale.com

Helps children understand and manage their social and emotional responses by breaking them down into five levels.

Zones of Regulation

https://www.zonesofregulation.com

Provides tools and strategies to help children recognize and manage their emotions.

THERAPY

Acceptance and Commitment Therapy (ACT)

The Association for Contextual Behavioral Science (ACBS)

https://contextualscience.org

A worldwide community dedicated to advancing evidence-based practices, such as Acceptance and Commitment Therapy (ACT), through research, education, and clinical application.

American Psychological Association

https://www.apa.org

A leading scientific and professional organization in psychology, dedicated to advancing psychological research, education, and practice to improve mental health and well-being

Collaborative and Proactive Solutions (CPS)

https://drrossgreene.com/about-cps.htm

An evidence-based approach developed by Dr. Ross Greene that focuses on resolving challenging behavior in children through collaboration, empathy, and skill-building.

Dialectical Behavior Therapy (DBT)

The National Education Alliance for Borderline Personality Disorder (NEABPD)

https://www.borderlinepersonalitydisorder.org

A non-profit organization dedicated to raising awareness, providing education, and promoting research on borderline personality disorder to improve treatment and support for individuals and families.

Emotional Regulation Therapy

The National Institute for the Clinical Application of Behavioral Medicine

https://www.nicabm.com

Online training and resources for healthcare professionals to integrate mindfulness, neuroscience, and behavioral medicine into clinical practice.

Floortime

https://www.icdl.com

A developmental approach designed to support children with autism and other developmental challenges by building social, emotional, and communication skills through interactive, play-based engagement.

Modified Cognitive Behavioral Therapy (CBT)

Association for Behavioral and Cognitive Therapies (ABCT)

www.abct.org

A multidisciplinary organization committed to the advancement of evidence-based behavioral and cognitive therapies through research, education, and clinical practice.

Occupational Therapy

The American Occupational Therapy Association (AOTA)

https://www.aota.org

A national professional association representing occupational therapy practitioners and students, dedicated to promoting the profession through advocacy, education, and research.

Parent Training

The PDA Society

https://www.pdasociety.org.uk/resources/resource-category/webinars-and-videos/

Online course for parents and caregivers on managing PDA behaviors, giving you everything necessary to assist your child with confidence and skill.

Play Therapy

The Association for Play Therapy

www.a4pt.org, https://autplaytherapy.com

A professional organization dedicated to advancing play therapy through education, research, and support for practitioners to enhance the mental health and well-being of children and families.

Sensory Integration Therapy

STAR Institute for Sensory Processing

https://sensoryhealth.org

A therapeutic approach designed to help individuals with sensory processing challenges improve their ability to respond to sensory stimuli in a more adaptive way.

Speech Therapy

American Speech-Language-Hearing Association (ASHA)

https://www.asha.org

A professional organization dedicated to advancing speech, language, and hearing services through advocacy, education, and certification for speech-language pathologists, audiologists, and related professionals.

TIME MANAGEMENT

Choiceworks App

https://itunes.apple.com/us/app/choicework

A visual support tool designed to help children develop daily routines, improve emotional regulation, and make choices independently.

First Then Visual Schedule App

https://itunes.apple.com/us/app/first-then-visual-schedule/id355527801?mt=8

A customizable scheduling tool that helps children with special needs manage their day.

SchKIDules

https://www.schkidules.com

Uses magnets or a digital format to give children control over their daily routines.

Time Timer

https://www.timetimer.com

A simple visual timer showing time passing in an easy-to-understand way, useful for managing transitions.

WEALTH MANAGERS

A Special Needs Plan

https://aspecialneedsplan.com/

A nationwide advisory firm dedicated to assisting families in planning for the future care and financial well-being of their loved ones with special needs.

Northwestern Mutual

https://www.northwesternmutual.com/financial-planning/special-needs-planning/

Provides specialized financial planning services, including estate planning and special needs trusts, to help families secure the future of their loved ones with special needs.

Oak Wealth Advisors

https://oakwealth.com/

Provides experienced and objective planning advice and investment management services, specializing in assisting families with loved ones who have disabilities.

All resources listed are available and verified to the author's knowledge at the time of this book's copyright. Availability, access, and content may change over time. The author and publisher assume no liability for the ongoing accessibility or accuracy of these resources and encourage readers to verify the most current information directly from the resource providers.

A NOTE ON INTERNATIONAL RESOURCES

Parenting is a universal journey, and we recognize that our readers hail from all around the world. We're committed to supporting you with resources as comprehensive as those provided in the United States guide at the end of this book. While our U.S. resources are extensive, we strive to offer similar support internationally. If you reside in Belgium, Brazil, Canada, France, Germany, India, Italy, Japan, Latin America, Mexico, Portugal, Singapore, South Korea, Spain, Taiwan, the Netherlands, or the United Kingdom, we invite you to visit our website at  practicalparentsguide.com . There, you can download our International Resource Guide for detailed support tailored to your region.

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