When Your Parents and Friends Don't Understand PDA and Autism

Finding Your Way When Others Don't See the Full Picture

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As a parent raising a child with autism and Pathological Demand Avoidance (PDA) also known from the more positive lens of, Persistent Drive for Autonomy, I've walked the path of explaining my daughter's needs to people who just don't get it. If you've ever felt that knot in your stomach when a family member dismisses your parenting as "too lenient" or a friend suggests your child just needs "more discipline," you're not alone. The journey of raising a child with PDA and autism becomes doubly difficult when those closest to us don't understand what we're facing.

When Your Parents and Friends Don't Understand PDA and Autism: Bridging the Knowledge Gap

One of the most isolating experiences as a parent is when your own support network doesn't understand your child's needs. My own mother once said, "We never had all these labels when you were growing up. Kids just needed discipline." Comments like these sting, especially when you're doing everything possible to support your child.

The truth is, most people have never heard of Pathological Demand Avoidance (PDA), and many still hold outdated views about autism and have a lack of knowledge about PDA. This knowledge gap creates misunderstandings that can affect your family relationships and your child's well-being.

According to the Autism Society, many autistic people experience demand avoidance, but for those with a PDA profile, this avoidance is extreme. Though there's debate about the usefulness of this label. Some prefer terms like "Persistent Drive for Autonomy" over "Pathological Demand Avoidance."

Whether you call it Pathological Demand Avoidance or Persistent Drive for Autonomy, the core experience remains the same—an overwhelming need for control and autonomy that manifests as extreme resistance to demands. The important thing isn't the label but understanding the lived experience of these children and the support they need to thrive.

Why Family and Friends Struggle to Understand

I experienced this firsthand at my daughter's birthday party. She had been excited for weeks about her cake—she'd helped choose the design and talked about it constantly. But when the moment came to blow out the candles with everyone watching, she froze, then ran from the room in tears. I overheard a parent at the party whisper, "She's just being dramatic for attention," while another parent suggested, "You should just make her come back and finish what she started." What they couldn't see was her overwhelming anxiety from the sudden demand of performing on cue with all eyes on her. Later, when everyone had left and the pressure was gone, she happily enjoyed her cake. This is the PDA paradox that's so hard for others to understand: a child can desperately want something yet be unable to comply with even the smallest demands around it. When family members witness only the public moments without understanding the underlying causes, their misguided advice can feel like judgment on our parenting rather than support

Understanding why others struggle to grasp PDA helps us approach these conversations with empathy:

1. PDA is relatively unknown - Even many healthcare professionals aren't familiar with it, particularly in the US where it's less recognized than in the UK.

2. It looks like defiance to untrained eyes - When a child with PDA resists simple requests, it's easy for others to misinterpret this as behavioral issues or poor parenting.

3. The variability confuses people - Kids with PDA might do something willingly one day and completely refuse the next, making others think they're being manipulative or that parents are inconsistent.

4. Traditional parenting wisdom doesn't work - When grandparents or friends say, "If that were my child, I'd just make them do it," they don't understand that conventional approaches often backfire dramatically.

   
   

What PDA Actually Looks Like (That Others Don't See)

What many people miss is that PDA isn't willful defiance—it's anxiety-driven and often outside the child's control. In kids with a PDA profile, resistance is sometimes mistaken for willful defiance, but it's better understood as resulting from anxiety and inflexibility. As Dr. Cynthia Martin explains, any external demand generates internal discomfort leading to avoidance.

When my daughter refuses to put on shoes to go to a birthday party she's excited about, it's not because she's trying to be difficult. Her brain perceives the demand itself as threatening, triggering an automatic fight-flight-freeze response regardless of whether she wants the outcome.

How to Ask Parents and Friends for the Right Kind of Help

One of the most challenging aspects of raising a child with PDA and autism is figuring out how to involve your support network in ways that actually help rather than hinder. When your parents and friends don't understand PDA and autism, many well-meaning family members want to assist but their traditional approaches often backfire dramatically.

Teaching others how to help appropriately takes patience and clear communication.

What Helpful Support Looks Like

Effective support for a child with PDA looks different than for neurotypical children. Helpful family members and friends can:

• Provide options rather than direct instructions ("The puzzles and books are here if you'd like them" versus "Come do this puzzle")

• Model activities without demanding participation ("I'm going to build with these blocks")

• Create inviting environments without explicit pressure to engage

• Follow the child's lead rather than imposing their own agenda

• Offer genuine choices that preserve autonomy

• Use indirect language that reduces demand pressure

The PDA Society notes that helpful approaches for children with PDA involve collaboration, flexibility, and careful use of language to reduce the feeling of demands while still providing necessary structure and support.

For example, my sister-in-law transformed her relationship with my daughter by changing her approach. Instead of saying, "Time to brush your teeth," which invariably led to refusals, she started casually mentioning, "I'm going to brush my teeth now" and leaving my daughter's toothbrush on the counter with a fun new toothpaste. Without the feeling of being commanded, my daughter would often follow suit within minutes. At mealtimes, rather than serving a plate of food with the expectation to eat, she'd prepare a variety of options on the table and simply start enjoying her own meal, removing the demand pressure entirely. The shift was remarkable—my daughter went from hiding whenever my sister-in-law visited to actively asking when she would come again.

Teaching Your Support Network

When coaching parents and friends, try these approaches:

• Demonstrate rather than just explain: Let them observe your interactions with your child

• Provide specific language alternatives: "Instead of saying 'Put on your shoes,' try 'We'll need shoes for the park'"

• Explain the why behind strategies: "When we reduce the feeling of demands, her anxiety decreases and cooperation increases"

• Acknowledge the learning curve: "This takes practice—I'm still learning what works best"

• Recognize when they get it right: "Did you notice how well she responded when you phrased it as a choice?"

  
  

One of the most successful ways I found to teach grandparents about PDA was through a "coaching weekend" at our home. Instead of overwhelming them with information, I invited them for a three-day visit focused on connection. Before they arrived, I sent them a simple one-page guide with phrases to try and phrases to avoid. During their visit, I quietly pointed out moments that could become difficult and suggested alternative approaches in real-time.

By Sunday afternoon, my father had a breakthrough moment at the playground. When my daughter refused to leave, instead of his usual "It's time to go now," he casually mentioned, "I'm getting hungry for that pizza we talked about," and started walking slowly toward the exit. My daughter, free from feeling demanded upon, happily followed him to the car. The pride on his face when he looked back at me was priceless—he had discovered for himself how this different approach could transform everyday challenges into smoother experiences.

Starting the Conversation: Explaining PDA to Family and Friends

I remember sitting across from my parents at their kitchen table, trying to explain why traditional parenting approaches weren't working for my daughter. Their confused expressions and well-meaning but unhelpful suggestions made me realize I needed a better way to help them understand PDA. After several difficult conversations and some trial and error, I discovered that using concrete examples and relatable analogies made a world of difference. When I compared PDA to their friend's fear of heights—something they couldn't just "get over" with willpower—I finally saw the light of understanding in their eyes. Now, instead of judgment, they ask questions and look for ways to support us both. Finding the right words to explain PDA to loved ones can transform your support network from a source of stress to a genuine source of help.

When explaining PDA to others, I've found these approaches helpful:

Use familiar comparisons

"You know how some people have phobias of heights or spiders? PDA is similar—it's like having a phobia of being controlled, even in small ways. The anxiety response is automatic and intense."

Focus on the anxiety, not the behavior

"When she refuses to put her coat on even though she's cold, it's not about the coat—it's about the overwhelming anxiety triggered by feeling directed by someone else."

Share success stories

"When we changed our approach to give her more control, we saw dramatic improvements. Instead of telling her to brush her teeth, we now talk about our own brushing and leave her toothbrush available—and she usually chooses to use it."

Provide accessible resources

Not everyone will read research papers, but short articles or videos can make a big difference in their understanding.

When Family Gatherings Become Battlegrounds

Family gatherings can quickly turn from celebrations to sources of stress when your child with PDA and autism faces multiple social demands in an environment filled with sensory challenges and well-meaning but unaware relatives. These events combine all the difficult elements at once: unfamiliar routines, heightened expectations, sensory overload, and relatives who may view your child's reactions as behavioral issues rather than anxiety responses. Without preparation, what should be enjoyable family time can leave everyone feeling frustrated and misunderstood.

Holiday gatherings and family events can be particularly challenging when relatives don't understand PDA. Well-meaning grandparents might insist your child "come give a hug" or aunts and uncles might comment on food refusal or clothing choices.

Before gatherings, I've found it helpful to:

1. Have a private conversation with key family members explaining specific triggers

2. Establish clear boundaries about what comments are unhelpful

3. Create a signal system with your child for when they need a break

4. Prepare a quiet space where your child can retreat if overwhelmed

5. Keep visits shorter when necessary, prioritizing your child's well-being over others' expectations

Remember that it's okay to decline invitations or leave early if the environment becomes too overwhelming for your child. Some of my most meaningful family connections have happened during quieter, one-on-one visits rather than large gatherings. By adjusting your expectations and being proactive with boundaries, you can gradually help family members understand while protecting your child's emotional well-being. Over time, with consistency and clear communication, many relatives can become valuable allies in creating supportive environments where your child can participate comfortably on their own terms.

Building Your Support Network When Traditional Supports Don't Understand

Isolation is one of the most painful aspects of raising a child with PDA and autism when your usual support network doesn't understand. Many parents describe feeling caught between conventional parenting advice that doesn't work and the daily reality of supporting their child's unique needs. This isolation can lead to burnout, depression, and a deep sense of loneliness. When I first realized my traditional support system wasn't equipped to understand our journey, I felt like I was navigating uncharted waters without a compass. It was only when I began actively seeking out others who truly "got it" that I found the validation and practical help I desperately needed.

When conventional support systems don't understand, finding your tribe becomes essential:

• Online communities of parents facing similar challenges can provide validation and practical strategies

• PDA-informed professionals who understand this profile can offer guidance and advocacy

• Parent support groups specifically focused on PDA and autism create safe spaces to share experiences

• Educational resources to share with family members who are willing to learn

  
  

Remember that some people may never fully understand, and that's okay. Your priority is supporting your child and preserving your own well-being.

Sometimes the most supportive people in your journey won't be who you expected. My closest ally turned out to be a neighbor who, though not familiar with PDA initially, approached our situation with genuine curiosity and a willingness to learn rather than judge.

Building a supportive community isn't about convincing everyone—it's about finding those few people who will stand by you with empathy and respect, even if they don't understand every detail of the experience. These connections, whether online or in person, become lifelines during challenging times and remind us that we're not alone on this path.

The Impact of Misunderstanding on Parents and Children

When your child's neurodivergence is misunderstood by those around you, the effects ripple through every aspect of family life. The constant need to explain, defend, and navigate others' misconceptions creates a unique form of stress that compounds the already challenging journey of parenting a child with PDA and autism. For many parents, including myself, the weight of these misunderstandings becomes a heavy burden we carry silently.

Each well-intentioned but harmful comment, each judgment-filled glance, and each unsolicited parenting advice accumulates over time, creating invisible walls between us and potential support systems that should be sources of comfort.

The emotional toll of constant misunderstanding shouldn't be underestimated. Many parents report:

• Increased stress and anxiety about social gatherings

• Strained relationships with extended family

• Self-doubt about parenting approaches

• Isolation to avoid judgment

• Exhaustion from constantly explaining and advocating

Meanwhile, children with PDA may:

• Internalize negative judgments from others

• Experience increased anxiety in family settings

• Develop shame about their difficulties

• Miss out on family connections due to misunderstandings

This reciprocal stress affects the entire family system and highlights why better understanding is so crucial.

Finding ways to protect both yourself and your child from these impacts becomes essential for long-term well-being. For our family, this meant setting clearer boundaries with certain relatives while deepening connections with those who showed genuine willingness to learn. It meant being selective about which events we attended and how long we stayed. Most importantly, it meant creating affirming spaces at home where my daughter's neurological differences weren't just tolerated but celebrated as part of what makes her uniquely herself. By acknowledging the real impact of misunderstanding while actively creating pockets of true acceptance, we've gradually built a more sustainable path forward for our whole family.

Moving Forward: Acceptance Over Understanding

The journey toward helping others understand PDA and autism can sometimes feel like an uphill battle with no end in sight. After months of sending articles, explaining neurological differences, and patiently correcting misconceptions, I reached an important realization: complete understanding from everyone isn't always possible—or even necessary. What matters most isn't that every person in our lives can explain the neuroscience behind PDA, but rather that they approach our child and our parenting with respect and acceptance. This shift in expectations brought me immense relief and opened doors to more meaningful connections with family members who, despite their limited understanding, genuinely wanted to support us in whatever way they could.

Sometimes, full understanding isn't possible, but acceptance can be enough. I've found that some family members may never fully grasp the neurological underpinnings of PDA, but they can still:

• Trust that you know your child best

• Respect the boundaries you set

• Follow your lead in interactions

• Withhold judgment about parenting approaches

• Celebrate progress on the child's terms

  
  

A grandmother who simply says, "I may not understand everything, but I trust you're doing what's best for your child" can be a tremendous ally, even without detailed knowledge of PDA.

This acceptance-based approach has transformed several key relationships in our lives. My father-in-law may not remember the term "PDA" or understand why demand avoidance happens, but he's learned to approach my daughter with gentleness and without demands. He focuses on building connection rather than compliance, and that makes him a safe person in her world. Similarly, a close friend who admits the concepts seem complex has simply asked, "What helps, and what should I avoid?" These acceptance-centered relationships often become the most reliable and comforting parts of our support system. By releasing the expectation that everyone must fully understand, we create space for authentic connections based on respect and trust—which ultimately benefits our children far more than perfect understanding ever could.

Practical Strategies for Daily Life

In the midst of navigating the complex landscape of PDA and autism while dealing with misunderstandings from family and friends, having concrete strategies becomes essential. After years of trial and error, conversations that went nowhere, and others that created meaningful breakthroughs, I've collected approaches that actually make a difference in day-to-day interactions. These aren't just theoretical ideas—they're battle-tested methods that have helped our family maintain important relationships while protecting my daughter's emotional well-being and my own sanity. The key is finding the balance between education, boundary-setting, and self-preservation.

For parents navigating this challenging terrain, these practical approaches may help:

1. Develop clear, simple explanations of PDA that you can use consistently

2. Create a "cheat sheet" for caregivers or family members with specific do's and don'ts

3. Use books and resources designed for children to help your child understand their own profile

4. Practice self-compassion when others don't understand

5. Set firm boundaries with those who repeatedly undermine your parenting

6. Find your supportive community, even if it's not your biological family

7. Celebrate small wins with those who genuinely care

Implementing these strategies has transformed how we navigate relationships in our family. The "cheat sheet" approach was particularly effective with my daughter's grandparents, who genuinely wanted to help but were overwhelmed by detailed explanations. A simple one-page guide with specific phrases to use and avoid made a remarkable difference in their interactions. Remember that progress often happens in small increments rather than dramatic shifts. That relative who once insisted "she just needs discipline" might never fully embrace neurodiversity concepts, but they might learn to interact more effectively with your child through consistent modeling and gentle guidance. Each positive interaction builds a foundation for the next, gradually creating a more supportive environment for your child and your entire family.

Next Steps

Understanding and supporting a child with PDA and autism requires patience, flexibility, and a willingness to let go of traditional parenting approaches. While it can be challenging when family and friends don't understand, remember that you're not alone on this journey.

For more comprehensive support and understanding, I highly recommend our book "A Practical Parent's Guide to PDA and Autism". As parents navigating this journey ourselves, we've compiled strategies and insights that work in real-life situations, not just in theory.

I recognize that parents are incredibly busy, which is why we've also made our book available as an audiobook. You can listen during commutes, while preparing meals, or during those rare moments of downtime. Access the audiobook through Audible US, Audible UK, or Audible Australia.

Visit our website for more resources, support, and a community that understands the unique challenges and joys of raising a child with PDA and autism.

Your Turn

I'd love to hear your experiences and insights:

• What strategies have worked for explaining PDA to skeptical family members?

• How have you maintained relationships with friends who don't understand your child's needs?

• What's the most supportive thing someone has said or done, even without fully understanding PDA?

  
  

Share your thoughts in the comments below—your experience might be exactly what another parent needs to hear today.

References

1. Autism Society UK. (2024). Demand avoidance. https://www.autism.org.uk/advice-and-guidance/topics/behaviour/demand-avoidance

2. Child Mind Institute. (2022). Pathological Demand Avoidance (PDA) in Kids. https://childmind.org/article/pathological-demand-avoidance-in-kids/

3. PDA Society. (2025). What is demand avoidance? https://www.pdasociety.org.uk/about-pda/what-is-demand-avoidance/

4. Psychology Today. (2024). What Does Pathological Demand Avoidance Look Like in Adults? https://www.psychologytoday.com/us/blog/beyond-mental-health/202408/what-does-pathological-demand-avoidance-look-like-in-adults