Supporting Your Children When Your Grandchild Has PDA and Autism: A Grandparent's Guide

Understanding Your Role in Pathological Demand Avoidance (PDA) and Autism Support

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As a parent of a daughter with PDA and autism, I know firsthand the complex journey of raising a child with these conditions. But today, I want to speak to the grandparents. Your role is crucial yet often overlooked in the conversation about supporting children with PDA and autism. Your understanding, patience, and support can make a world of difference—not just for your grandchild, but also for your adult child who is navigating this challenging path.

The Grandparents' Challenge

I remember when my mother first visited after we received my daughter's diagnosis. With all the love in her heart, she said, "Back in my day, children just needed more discipline. She'll grow out of it." Those words, though well-intentioned, felt like a punch to the gut when I was already struggling to understand my daughter's needs.

What my mother didn't realize—what many grandparents don't initially understand—is that children with PDA and autism aren't being defiant or manipulative. Their brains are wired differently, and they experience the world in ways that can be overwhelming and anxiety-provoking.

What Is PDA and How Does It Relate to Autism?

Before diving into how you can help, let's understand what we're dealing with. PDA, or Pathological Demand Avoidance, is considered by many experts to be a profile within the autism spectrum. Children with PDA and autism have an anxiety-driven need to avoid demands and expectations, even seemingly simple ones like getting dressed or brushing their teeth (Eaton & Weaver, 2020).

Unlike typical defiance, PDA isn't about being difficult—it's about genuine anxiety that can trigger fight, flight or freeze responses. Your grandchild isn't trying to manipulate anyone; they're trying to survive situations that feel genuinely threatening to them.

Five Ways Grandparents Can Truly Help

1. Educate Yourself (Without Taking Over)

The first and most important thing you can do is learn about PDA and autism. This doesn't mean becoming an expert overnight or flooding your child with articles and advice. It means listening, reading reputable sources, and approaching the situation with humility.

When my mother-in-law started reading about PDA, she didn't come to me saying, "You should try this approach." Instead, she said, "I've been reading about PDA to understand better. Is there anything specific you think would be helpful for me to know about how it affects my granddaughter?" That question opened the door to meaningful conversations instead of creating defensiveness.

2. Believe Your Adult Child

One of the most painful experiences for parents of children with PDA and autism is not being believed. When a child's challenges aren't visible or consistent, others often assume the parent is exaggerating or causing the problem.

A friend once told me how her father-in-law insisted her son was "just spoiled" because he behaved differently at their house during short visits. What he didn't understand was that her son was masking—putting on a "good behavior" front that would later result in meltdowns at home where he felt safe.

Trust that your adult child knows their child best. If they say certain approaches work or don't work, believe them. If they tell you their child needs accommodation in specific situations, support that decision instead of questioning it.

3. Adjust Your Expectations

Children with PDA and autism often struggle with transitions, sensory issues, and social demands that others take for granted. Family gatherings, holiday traditions, or even regular visits might need modification.

This might mean:

• Keeping visits shorter

• Creating a quiet space where your grandchild can retreat

• Being flexible about food preferences or clothing choices

• Understanding that plans might change at the last minute

When my daughter was younger, my father would get upset when she couldn't sit through an entire family dinner. Once he understood that it wasn't about discipline but about her sensory processing differences, he created a small reading nook near the dining room where she could take breaks. This simple adjustment made family gatherings possible instead of painful.

4. Offer Concrete, Specific Help

"Let me know if you need anything" is a kind sentiment, but parents of children with PDA and autism are often too overwhelmed to identify and ask for specific help. Instead, offer concrete assistance:

• "I'd like to come over for two hours on Saturday so you can have some time to yourself."

• "Can I pick up groceries for you when I do my shopping tomorrow?"

• "Would it help if I took your other children to the park once a week?"

Remember that respite—giving parents a break—is often the most valuable gift you can offer. Parenting a child with PDA and autism is emotionally and physically exhausting. Even a short break can help your adult child recharge.

5. Be a Safe Person for Both Generations

Your adult child needs someone who will listen without judgment when they're struggling. Sometimes, they just need to vent without receiving advice or hearing stories about how you handled similar situations "back in the day."

Likewise, your grandchild needs people in their life who accept them unconditionally—who see their strengths and interests, not just their challenges.

A grandmother I know created a special ritual with her grandson, who has PDA and autism.

Every visit, they spend 20 minutes doing whatever he wants—usually building with LEGOs or looking at his favorite book—with no demands or expectations. This "demand-free zone" has become precious to both of them and has strengthened their relationship immeasurably.

What NOT to Say or Do

Sometimes, knowing what not to do is as important as knowing what to do. Here are some common missteps that, though well-intentioned, can cause harm:

1. "Just make them..."

Phrases like "Just make them eat it" or "Just make them behave" fundamentally misunderstand PDA. Children with PDA and autism aren't choosing to be difficult—their anxiety response is physiological. Forcing compliance often triggers fight-or-flight responses and damages trust.

Instead, try: "I notice this is hard. How do you usually handle this situation?"

2. "Back in my day..."

Child-rearing approaches have evolved as we've learned more about neurodevelopment. What worked (or appeared to work) for neurotypical children decades ago may be actively harmful for children with PDA and autism.

Instead, try: "Things seem different from when I was raising you. I'd like to understand more about what works for your family."

3. "They're fine with me!"

If your grandchild behaves differently with you, it's not because your adult child is doing something wrong. Children with PDA and autism often mask their difficulties with people they see less frequently or in less demanding situations. The "perfect" behavior you see might be followed by meltdowns at home.

Instead, try: "I notice they seem comfortable here. Is there anything specific you do at home that helps that I could incorporate during their visits?"

4. "They'll grow out of it."

While children develop and change, PDA and autism are lifelong neurological differences, not phases. Suggesting they'll "grow out of it" dismisses the reality your adult child is facing.

Instead, try: "I'm here for the long haul. What can I do to support you both now and in the future?"

When Your Adult Child Seems Overwhelmed

Parenting a child with PDA and autism can push people to their limits. If you notice your adult child struggling with burnout, depression, or anxiety, gently encourage them to seek support for themselves.

Research shows that parents of children with autism experience higher levels of stress and are at greater risk for mental health challenges. This isn't a reflection of their parenting skills—it's the result of navigating complex systems with limited support.

You might say: "I've noticed you seem exhausted lately. Would it help if I researched some support groups or resources for parents? Or maybe I could watch the kids while you talk to someone?"

Building a Bridge Between Generations

The relationship between grandparents and parents can sometimes become strained when a child has PDA and autism. Different generational perspectives, expectations, and understanding of neurodevelopmental conditions can create tension.

Remember that your adult child is doing the best they can with the information and resources available to them. They need your support, not your judgment. By learning, listening, and offering meaningful help, you can strengthen family bonds rather than fracturing them.

When my mother finally took the time to really understand PDA and autism, everything changed. She stopped offering unsolicited advice and started asking questions. She became a source of support rather than stress. And most importantly, she developed a beautiful relationship with my daughter based on acceptance and understanding.

Next Steps

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 found ways to support your adult child and grandchild with PDA and autism? What approaches have strengthened your family relationships? What questions do you have about supporting your family through these challenges? Share your thoughts in the comments below.

References:

1. Eaton, J., & Weaver, K. (2020). An exploration of the pathological (or extreme) demand avoidance profile in children. Jessica Kingsley Publishers.

2. Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642.

3. 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.

4. 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.