Does Your Child Have PDA and Autism? Recognizing the Signs & Receiving an Accurate Diagnosis in the USA
- Michelle Davis
- Mar 2
- 8 min read
Updated: Apr 12
Recognizing PDA in Autism: Early Signs, Processes, and What Parents Need to Know
Does your heart sink when you ask your child to put on their shoes, knowing it might trigger an hour-long meltdown? Have you noticed your little one developing increasingly creative ways to avoid even the simplest requests? If you're nodding your head right now, you're not alone. These behaviors might be signs of Pathological Demand Avoidance (PDA), a profile within the autism spectrum that's finally getting the recognition it deserves among healthcare professionals and parents like us.
What is Pathological Demand Avoidance?
I remember the first time I heard the term "Pathological Demand Avoidance." It was like someone had finally put a name to what we'd been experiencing in our home for years. PDA isn't just stubbornness or defiance—it's an intense, anxiety-driven need to avoid demands and expectations.
Unlike typical oppositional behavior, PDA stems from genuine neurological differences in how the brain processes demands. For our children, even seemingly simple requests like brushing their teeth or putting on a jacket can trigger overwhelming distress. It's not that they won't comply—their brains are telling them they can't.
Research by Liz O'Nions has shown strong connections between PDA and autism, particularly in areas like demand avoidance, anxiety levels, and social understanding challenges. While experts still debate whether PDA should be its own diagnosis or considered a profile within autism, growing evidence suggests it represents a specific way autism presents in some children.
Recognizing the Signs of PDA
When my child was younger, I knew something was different, but I couldn't quite put my finger on it. Understanding these signs earlier would have changed everything for our family. Here are key behaviors to watch for:
Extreme resistance to everyday demands, often seemingly out of proportion to what's being asked
Surprisingly sophisticated avoidance strategies that can look manipulative but are actually anxiety-driven
Surface-level sociability but struggles with deeper social understanding
Strong imagination and role-playing abilities, sometimes used as an escape from demands
Mood swings and impulsivity, especially when feeling pressured
Language development that might show initial delays followed by rapid catch-up
Intense focus on specific interests or people
Sensory sensitivities that can make everyday environments overwhelming
If these patterns sound familiar, your child may be experiencing the world through a PDA lens. These aren't signs of a child being difficult—they're signals of a genuinely different neurological experience.
The Journey to Diagnosis
Documenting Behaviors
The turning point for us was when I stopped trying to just manage the behaviors and started carefully observing the patterns. I recommend keeping a simple journal to track:
Specific situations that trigger resistance
The creative strategies your child uses to avoid demands
Times of day or contexts when avoidance behaviors increase
Any physical complaints or sensory issues that emerge
Approaches that have successfully reduced anxiety
This documentation becomes gold when talking with healthcare providers who might not be familiar with PDA. I still remember bringing my notebook to our pediatrician and seeing the lightbulb moment as she reviewed our detailed observations.
Having That First Conversation with Healthcare Providers
When we first approached our pediatrician, I made the mistake of saying, "I think my child has PDA." I was met with a blank stare. Since PDA isn't yet recognized as a separate diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), I learned to frame my concerns differently.
Instead, try something like: "My child shows extreme anxiety when asked to complete even simple tasks. They use elaborate strategies to avoid demands, including distraction, negotiation, and withdrawal. These reactions seem beyond typical defiance and cause significant distress for them."
Your pediatrician may conduct initial screenings like the M-CHAT (Modified Checklist for Autism in Toddlers) before referring you to specialists for a more comprehensive evaluation.
What to Expect During the Specialist Evaluation
I won't sugarcoat it—the wait to see specialists can be frustrating. We waited almost eight months for our appointment with a developmental pediatrician. When you do get in, expect thorough assessments using tools such as:
These evaluations look at various aspects of your child's development, from communication skills to sensory processing. If the wait times in your area are unbearable (and they often are), online evaluation options like ADGCares can provide more timely assessments, often covered by insurance.
I also found incredible support through PDA North America, which maintains a directory of PDA-affirming providers who specifically understand this presentation of autism. Finding a provider who already understands PDA can save months of explaining and advocating.
Understanding the Diagnosis
When our child received an autism diagnosis with PDA features, it was both validating and overwhelming. Since PDA involves extreme sensitivity to demands, we quickly learned that traditional behavioral approaches (rewards, consequences, and firm boundaries) often backfired spectacularly.
Instead, we found success with PDA-specific approaches that focus on:
Reducing anxiety as the primary goal rather than increasing compliance
Building flexibility through indirect methods instead of direct demands
Offering choices to provide that crucial sense of autonomy
Using declarative language ("I wonder if..." or "It's time for...") rather than direct commands
Prioritizing relationship-building over rule enforcement
Both PDA North America and The PDA Society recommend these low-demand parenting approaches. The difference in our home once we implemented these strategies was night and day—fewer meltdowns, more cooperation, and a child who finally felt understood.
Navigating Insurance and Support Services
Let's talk about the practical side of things. Getting a diagnosis is one thing; accessing support is another challenge entirely. Here's where to start:
Contact your health insurer to clearly understand which therapies, providers, and services are covered. Don't be afraid to ask specific questions like: "What therapies addressing emotional regulation and sensory integration does our policy cover?"
Explore Medicaid options that might provide additional coverage beyond your private insurance
Investigate Supplemental Security Income (SSI) for potential financial assistance—many families don't realize their child might qualify
Connect with early intervention services in your state if your child is under three
Research school accommodations like IEPs or 504 plans—these documents are powerful tools for ensuring your child's educational needs are met
I remember feeling completely overwhelmed by insurance paperwork and phone calls. If that's you right now, take a deep breath. Make one call today, another tomorrow. Breaking it down into manageable steps makes the process less daunting.
The Emotional Rollercoaster After Diagnosis
When we received our child's diagnosis, I experienced a whirlwind of emotions—and if you're on this journey, you likely will too. You may feel:
Validation that your concerns were legitimate all along
Relief in finally understanding behaviors that previously seemed inexplicable
Worry about what the future holds for your child
Overwhelm by the sheer amount of information to process
Uncertainty about whether you're up to the challenge
These feelings are completely normal. I remember sitting in my car after the diagnostic appointment, alternating between tears of relief and tears of fear. Be gentle with yourself during this time.
Remember that a diagnosis doesn't change who your child is—it provides a framework for understanding their needs and accessing appropriate support. Connecting with other parents through support groups was life-changing for me. Organizations like PDA North America offer resources specifically for families navigating PDA, including parent support groups where you'll find people who truly "get it."
Moving Forward: Building Your Support System
Creating a comprehensive support system for your child involves several key components:
1. Assemble a Knowledgeable Medical Team
Seek providers who understand or are willing to learn about PDA specifically. This might include:
Developmental pediatricians
Occupational therapists with sensory integration expertise
Child psychologists familiar with anxiety-based avoidance
Speech therapists who can address social communication
Don't be afraid to interview providers or switch if someone isn't the right fit. We went through three occupational therapists before finding one who understood the PDA profile and adapted her approach accordingly.
2. Educate Key People in Your Child's Life
I created a simple one-page explainer about my child's PDA profile to share with:
Family members and caregivers
Teachers and school staff
Activity leaders and coaches
Other significant adults in my child's environment
This helped ensure everyone used consistent approaches and understood that my child's behaviors weren't willful disobedience.
3. Implement PDA-Specific Strategies at Home
These approaches transformed our daily life:
Reducing direct demands whenever possible
Offering genuine choices to provide autonomy
Using humor and playfulness to decrease pressure
Creating predictable routines while maintaining flexibility
Focusing on building trust and emotional safety
The first time I rephrased "Put on your shoes now" to "I wonder if your shoes are feeling lonely?" and watched my child giggle and put them on without resistance, I nearly cried with relief.
4. Advocate in Educational Settings
Work with your child's school to develop accommodations that might include:
Flexible expectations around transitions and participation
Opportunities for movement and sensory breaks
Alternative ways to demonstrate knowledge
Preparation for changes in routine
A safe space for regulation when overwhelmed
You're Not Alone
Understanding and supporting a child with PDA requires patience, creativity, and continuous learning. There are days when it feels overwhelming, and days when the progress takes your breath away.
Remember that PDA is fundamentally anxiety-based, not willful disobedience. When I shifted my perspective from "Why won't my child listen?" to "How can I help my child feel safe enough to engage?" everything changed for our family.
Most importantly, trust your instincts. While expert guidance is valuable, you know your child best. Celebrate progress, however small, and remember that the goal isn't to change who your child is but to help them navigate the world in ways that honor their unique neurology.
Next Steps - More Support for Your PDA Journey
Parenting a child with autism and PDA is both challenging and rewarding. If you're looking for more practical strategies and insights, I've compiled extensive research and personal experience in my book, "A Practical Parent's Guide to PDA and Autism." This resource provides concrete approaches tailored specifically to parents and caregivers of children who experience both autism and PDA.
As a parent juggling therapy appointments, IEP meetings, and the daily challenges of raising a child with PDA, I know you barely have time to sit down, let alone read a book. That's exactly why I've made "A Practical Parent's Guide to PDA and Autism" available as an audiobook you can listen to during school drop-offs, while making dinner, or during those precious few minutes alone in the car. Transform your "lost time" into learning time by grabbing the audiobook here: US, UK, Australia, Canada, France, and Germany.
For more resources and support, visit our website at practicalparentsguide.com. There, you'll find articles, forums, and additional resources to help you navigate the unique challenges and joys of parenting a child with PDA and autism.
Your Turn
Have you noticed signs of PDA in your child? What strategies have you found helpful? Share your experiences in the comments below.
References
Anan, R. (2022). Beyond Behaviors: Understanding Obsessive Attachments in Neurodivergent Children. Journal of Developmental Psychology, 15(3), 112-125.
Christie, P., Duncan, M., Fidler, R., & Healy, Z. (2012). Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. Jessica Kingsley Publishers.
Eaton, J. (2018). A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support. Jessica Kingsley Publishers.
Gillberg, C. (2014). Commentary: PDA – public display of affection or pathological demand avoidance? – reflections on O'Nions et al. (2014). Journal of Child Psychology and Psychiatry, 55(7), 769-770.
Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018). Pathological Demand Avoidance: symptoms but not a syndrome. The Lancet Child & Adolescent Health, 2(6), 455-464.
Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595-600.
O'Nions, E., Christie, P., Gould, J., Viding, E., & Happé, F. (2014). Development of the 'Extreme Demand Avoidance Questionnaire' (EDA-Q): preliminary observations on a trait measure for Pathological Demand Avoidance. Journal of Child Psychology and Psychiatry, 55(7), 758-768.
O'Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: Exploring the behavioural profile. Autism, 18(5), 538-544.
O'Nions, E., Happé, F., Viding, E., Gould, J., & Noens, I. (2018). Demand avoidance is not necessarily defiance: Correspondence. The Lancet Child & Adolescent Health, 2(7), e14.
Sanchez, P. (2018). Pathological Demand Avoidance - My Daughter is Not Naughty. Jessica Kingsley Publishers.
Woods, R. (2020). Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference. Good Autism Practice, 21(2), 9-24.
Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health, 25(2), 59-67.
Wing, L., Gould, J., & Gillberg, C. (2011). Autism spectrum disorders in the DSM-V: Better or worse than the DSM-IV? Research in Developmental Disabilities, 32(2), 768-773.
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