Navigating the healthcare system as a parent of a child with autism and Pathological Demand Avoidance (also known as Persistent Drive for Autonomy) can feel overwhelming. As a mom who’s been there, I want to share some wisdom that might make your next doctor’s visit more productive.

Why Asking the Right Questions Matters

I’ll never forget sitting in that sterile exam room with my daughter, clutching my mental list of concerns while simultaneously trying to keep her calm. When the doctor finally walked in and asked what questions I had, my mind went completely blank. I stumbled through some vague concerns, and we left with a handful of pamphlets and that familiar feeling of “I should have asked about…”

Sound familiar? I think we’ve all been there.

For those of us raising children with PDA and autism, these missed opportunities can feel particularly significant. Our kids don’t always follow typical patterns, and standard advice doesn’t always apply. I’ve learned through years of trial and error (mostly error, if I’m being honest!) that having thoughtful questions prepared isn’t just helpful—it’s essential for getting the personalized guidance our unique children need.

I started keeping a small notebook (ok, let’s be honest, it’s really using the “notes” section on my iPhone) just for doctor visits, jotting down observations between appointments and questions as they came to mind. This simple step transformed our medical appointments from overwhelming to empowering. I’m sharing some of the most valuable questions from my own journey, hoping they might help you advocate more effectively for your child too.

Development Questions That Go Beyond the Basics

When my daughter was younger, I often left developmental checkups feeling frustrated and misunderstood. On paper, she met all her milestones – her language, motor skills, and cognitive development were right on track or even advanced. What the standard checklists never captured was her intense demand avoidance that made it difficult for her to regulate her behavior and emotions. She could do what was asked, but often simply didn’t feel like it. What changed everything was when I started asking different kinds of questions—ones that acknowledged her PDA profile and how it affected her daily functioning.

Understanding Your Child’s Unique Developmental Timeline

The developmental conversation with your doctor shouldn’t just be about what milestones your child hasn’t reached yet. It should be about understanding their unique trajectory.

I remember one particularly helpful pediatrician who took the time to explain how my daughter’s development, while different, showed clear progress in ways the standard charts weren’t measuring. She helped me see strengths where I had only been seeing delays.

Try asking your doctor: “How does my child’s development compare not just to neurotypical peers but to other children with similar profiles?” This question often opens up a much more nuanced and helpful conversation about what growth really looks like for our kids.

Another question that gave me tremendous peace of mind was: “What specific developmental milestones should I be looking for next, considering my child’s unique neurology?” This top question to ask your child’s doctor think beyond standard checklists and consider what meaningful progress might look like specifically for your child.

You might also try: “Are there alternative milestones or skills I should be tracking that might not be on standard developmental checklists?” When I asked this, our developmental pediatrician actually showed me a modified tracking system that gave us much more relevant information about my daughter’s growth.

These types of questions help shift the conversation away from what your child “should” be doing by a certain age and toward a deeper understanding of their individual developmental journey.

Medication and Treatment Questions

First, I want to be clear that this post isn’t intended to provide medical advice or to advocate for or against medication. Every family makes different choices based on their unique circumstances, and there’s no one-size-fits-all approach. Some parents elect to use medication as part of their child’s treatment plan, while others choose not to. Both choices are valid, and what matters most is making informed decisions in partnership with qualified healthcare providers.

If there’s one area where I felt completely out of my depth initially, it was discussions about medication and treatments, which is uncomfortable to admit since I have spent my entire career in healthcare. The options seemed endless, the potential benefits and risks complex, and the decision-making process overwhelming.

What helped was getting really specific with my questions, instead of just nodding along when treatments were suggested. Our children with PDA and autism may respond differently to standard treatments, and they might not be able to communicate side effects in typical ways. Having a framework of questions prepared helped me gather the information I needed to make informed decisions for my child.

Here’s the framework that might help you navigate these conversations:

Framework for Treatment and Medication Discussions

Understanding the Treatment:

• “Can you explain exactly how this treatment/medication works and why you think it might help my child specifically?”
• “What is the goal of this treatment? What specific improvements might we see?”
• “How long should we try this approach before evaluating whether it’s working?”

Potential Effects and Side Effects:

• “What are the most common side effects of this medication, and how might they present differently in a child with PDA/autism?”
• “Are there any long-term considerations we should be aware of?”
• “How will this treatment interact with my child’s sensory sensitivities?”

Monitoring and Adjustments:

• “How will we measure whether this treatment is working, especially if my child struggles to communicate subtle changes?”
• “What specific behaviors or symptoms should I track to evaluate effectiveness?”
• “If we notice concerning side effects, what’s our plan for adjusting or discontinuing?”

Alternatives and Complements:

• “Are there any non-pharmacological approaches we should try alongside or before medication?”
• “How does this option compare to other available treatments?”
• “How might this treatment need to be adjusted to accommodate my child’s demand avoidance?”

The first time a doctor suggested medication for my daughter’s anxiety, my head filled with a thousand worries. Would the side effects be worse than the issues we were trying to address? How would I even know if it was helping when she struggled to express her feelings? Would it make her sensory issues worse?

I learned that asking specific questions helped transform these vague worries into clearer conversations. When I finally asked about potential side effects specific to children with PDA and autism, our doctor walked me through what to watch for in ways my daughter might express discomfort, even if she couldn’t articulate it directly.

Whatever path you choose regarding treatments—whether medication is part of your approach or not—the most important thing is feeling empowered to ask questions and truly understand the options. Remember that what works for one child with PDA may not work for another, and approaches often need to be individualized. Your role as your child’s advocate is to gather enough information to make decisions you feel comfortable with and to maintain open communication with your healthcare providers throughout the process.

Boredom and Your Child with PDA

I used to think my daughter was just being difficult when she would suddenly refuse to participate in activities she had previously enjoyed. It wasn’t until a particularly insightful conversation with her developmental pediatrician that I began to understand how differently children with PDA and autism experience boredom.

For our kids, boredom isn’t just feeling temporarily uninterested—it can be deeply uncomfortable, even anxiety-provoking. When my daughter became bored, it often triggered increased demand avoidance and led to behaviors that seemed puzzling or challenging.

During one memorable doctor’s visit, I finally asked, “How can I distinguish between behaviors stemming from boredom versus those related to anxiety or demand avoidance?” The doctor’s explanation was eye-opening. She explained that these states often overlap and feed into each other. What might start as simple boredom can quickly spiral into anxiety and increased demand avoidance if not addressed.

I also found it helpful to ask: “What strategies might help my child communicate boredom before it escalates to challenging behaviors?” This led to us developing a simple visual system my daughter could use to indicate her engagement level before she became too overwhelmed to communicate effectively.

Another question that yielded practical advice was: “Are there specific activities or approaches you’ve found helpful for children with similar profiles who struggle with boredom?” Our doctor shared strategies from other families that we could adapt, including ways to introduce novelty without triggering anxiety about the unknown.

I’ve learned that for my daughter and many children with PDA, boredom isn’t simply about needing entertainment—it’s about needing the right kind of engagement that respects their need for autonomy while still providing structure and stimulation. Finding activities that hit this balance has been key for us, and your doctor may have insights into how other families with similar challenges have successfully navigated this tricky terrain.

Communication and Sensory Top Questions to Ask Your Doctor

The first time my daughter had a complete meltdown in a medical office, I felt completely helpless. The bright lights, unfamiliar sounds, strange smells, and inevitable waiting had created a perfect storm of sensory overload. It took me too long to realize that these sensory challenges weren’t just making appointments unpleasant—they were significantly impacting our ability to communicate effectively with healthcare providers.

I started asking our doctor questions like: “What communication approaches would you recommend we try, given my child’s specific profile?” This led to several adaptations in how information was shared with us, including visual schedules for appointments and written summaries we could review at home when my daughter was calmer.

Another question that transformed our medical experiences was: “How can we better recognize and address my child’s sensory needs, especially in medical settings?” Our pediatrician helped us create a sensory profile specifically for medical visits and shared it with other specialists we saw. Some offices even made accommodations like dimming lights or allowing us to wait in our car instead of the waiting room.

I also found it invaluable to ask: “Are there specific sensory-friendly tools or modifications you’d recommend for home, school, or medical appointments?” This yielded practical suggestions like noise-canceling headphones, weighted lap pads, and fidget tools that have become essential parts of our daily toolkit.

One question that particularly helped connect the dots was: “How might sensory sensitivities be influencing behaviors we’re seeing at home or school?” Our doctor helped us recognize patterns we hadn’t noticed—like how certain behaviors consistently followed specific sensory triggers.

These conversations helped our medical team understand the whole-child perspective and led to recommendations that were far more individualized and effective than standard approaches would have been.

Don’t underestimate how much your observations can help shape more personalized care for your child.

School and Learning Support Questions

When my daughter started kindergarten, I quickly realized that her school team, while well-intentioned, had little understanding of how PDA impacts a child’s educational experience. They were using strategies that work well for most children with autism but were actually making things worse for her.

Our pediatrician became an unexpected but crucial ally in this journey. At one particularly difficult point, I asked, “What specific accommodations should we request for my child’s IEP based on her PDA profile?” This opened up a detailed discussion about how traditional behavioral approaches often backfire with children who have PDA, and how accommodations might need to look different.

I remember sitting in an IEP meeting where the school psychologist kept referring to my daughter’s demand avoidance as “non-compliance” and “defiance.” After discussing this with our doctor, I learned to ask: “How can I help teachers understand the difference between PDA behaviors and defiance or misbehavior?” Our doctor provided educational materials specifically for the school team and even offered to join a meeting to help explain the neurological underpinnings of PDA.

Another question that proved invaluable was: “What medical documentation can you provide to support our requests for specific accommodations or services?” Getting appropriate documentation made a night-and-day difference in how seriously the school took our accommodation requests.

I’ve also found it helpful to ask: “How often should we be reassessing school supports as my child develops?” Our doctor suggested quarterly check-ins rather than waiting for the annual IEP review, which allowed us to make adjustments much more quickly when something wasn’t working.

Your child’s doctor can provide key medical perspective to educational teams who may have little familiarity with PDA. Don’t underestimate how powerful this medical advocacy can be in helping create an educational environment where your child can thrive.

Questions About Daily Life and Family Impact

I spent the first few years after my daughter’s diagnosis focusing almost exclusively on her needs. It wasn’t until my other child started showing signs of anxiety and my marriage began to strain that I realized we needed to address the whole family system. During one appointment, I broke down in tears from exhaustion, and our compassionate doctor gently suggested we talk about family impact.

One question that led to some helpful resources was: “What do you recommend for siblings to better understand their sister?” Our doctor recommended specific books and even a siblings’ group at the local children’s hospital that has been tremendously beneficial for our family.

I also found myself struggling with constant guilt—was I doing enough for my daughter with PDA while also meeting my other child’s needs? Asking our doctor, “How can we balance meeting our child’s needs while maintaining reasonable expectations and boundaries?” led to some practical strategies and the much-needed reassurance that setting boundaries was not only okay but necessary for the whole family’s wellbeing.

Another question that connected us to vital support was: “Are there parent support groups specifically for families dealing with PDA that you’d recommend?” Through this recommendation, I found an online community of parents who truly understood our unique challenges in a way that even my closest friends couldn’t.

Perhaps most importantly, when I was at my breaking point, I finally asked: “What strategies might help reduce caregiver burnout while supporting our child?” Our doctor not only offered practical suggestions but also referred me to a therapist who specializes in supporting parents of children with special needs.

These conversations helped me recognize that supporting my child with PDA and autism is indeed a family journey, not just an individual medical issue. Taking care of the whole family system isn’t selfish—it’s essential for sustainable caregiving and for creating an environment where everyone, including my daughter with PDA, can thrive.

The Most Important Question: Building a Partnership

After years of navigating the healthcare system with my daughter, I’ve come to believe that perhaps the most valuable question isn’t about specific treatments or strategies at all. It’s about establishing a true collaborative relationship with your doctor.

Early on, I approached appointments as if the doctor would simply tell me what to do—as if there was a standard protocol for raising a child with PDA and autism that I just needed to follow. But our journey became much smoother when I finally asked: “How can we best work together as a team to support my child’s development and wellbeing?”

I’ll never forget the look of relief on our pediatrician’s face when I asked this. “Thank you for seeing us as partners,” she said. “Because that’s exactly what we need to be.”

This simple question shifted the entire dynamic of our relationship. Instead of me passively receiving advice or the doctor making recommendations without fully understanding our day-to-day reality, we began truly collaborating. I shared detailed observations from home; she contributed her medical expertise and experience with other similar children. Together, we crafted approaches that actually worked for our specific situation.

This partnership approach has made all the difference in my daughter’s care. When treatments don’t work as expected, we adjust together. When new challenges arise, we brainstorm solutions together. And when we celebrate progress, we do that together too.

Next Steps: Making the Most of Your Doctor Visits

As parents of children with PDA and autism, we often become experts on our children’s unique needs and responses. But no matter how knowledgeable we become, we still need medical professionals who can work with us as partners, offering expertise and perspective we may not have.

I’ve found that preparing thoughtful questions before appointments helps ensure we get the most value from these important interactions. Sometimes I still get nervous or emotional during visits, so having my questions written down helps me stay focused and ensures I don’t forget anything important.

After each appointment, I take a few minutes to write down key points and next steps while they’re still fresh in my mind. This has created a valuable record of our journey and helps me track what’s working and what isn’t over time.

For more comprehensive guidance on supporting your child with PDA and autism, I highly recommend checking out “A Practical Parent’s Guide to PDA and Autism.” The book offers strategies and insights that have helped countless families like ours navigate the unique challenges and joys of raising children with PDA.

You can find the book at practicalparentsguide.com – and for busy parents (and I know how busy we all are!), it’s also available as an audiobook through Audible and other platforms.

I remember trying to read parenting books during my daughter’s early years and constantly putting them down because I simply didn’t have the time or mental energy after long days of managing meltdowns and advocating at school. Being able to listen to resources during my commute or while doing household tasks has been an absolute game-changer. If you’re feeling overwhelmed by the thought of adding “read parenting books” to your already impossible to-do list, the audiobook might be exactly what you need.

Remember that each doctor’s visit is an opportunity to deepen your understanding and refine your approach. By asking thoughtful questions and building genuine partnerships with healthcare providers, you’re taking important steps to support your child’s unique journey.

Your Turn

What questions have you found most helpful to ask your child’s doctor? Have you discovered any particularly effective ways to communicate with healthcare providers about PDA and autism?

Your experiences could help other parents who are just beginning this journey.

Share your thoughts in the comments below!

References

1. The PDA Society. (2023). Helpful approaches for children. PDA Society website.
2. National Autistic Society. (2024). Demand avoidance. Autism.org.uk.
3. Child Mind Institute. (2022). Pathological Demand Avoidance (PDA) in Kids. ChildMind.org.
4. Children’s National. (2020). 10 questions to ask a pediatrician at well visits. Rise and Shine.
5. Children’s Hospital Los Angeles. (2023). 8 Questions to Ask at a Well-Child Visit With Your Pediatrician. CHLA.org.