Does it ever feel like your autistic child just doesn’t want to do anything you ask them to do? Have they been diagnosed with Oppositional Defiant Disorder?
If so, I’d like to introduce you to what is probably a more accurate diagnosis for them: PDA which stands for Pathological Demand Avoidance, or, on a more positive and neurodiverse-affirming note, Persistent Demand for Autonomy.
Learning more about PDA and how best to work with children who have a PDA profile has been a game changer around our house, and I think it could be pretty transformational for you, too.
There is hope if you’re raising a child who can best be described as No-Can The Contrarian…let’s dive in!
Understanding Pathological Demand Avoidance
Pathological Demand Avoidance is a specific profile of autism characterized by an extreme need to avoid and resist everyday demands and is anxiety-based. It goes beyond typical autistic traits and can present additional complexities for parents…
Often the things PDAers will refuse to do are in their best interests or even fun. But because it wasn’t their idea, they get stuck in a crippling wave of anxiety that tells them, “This wasn’t my idea, so it isn’t safe.”
It’s most commonly recognized and diagnosed in Europe and the UK but is becoming more known and understood here in the US.
By gaining a deeper understanding of PDA, you can start unraveling the puzzle and finding effective ways to support your child's needs. Almost all parenting information, including resources meant specifically for autistic kids and their families, probably won’t work effectively with a PDA kiddo.
Reduce Demands
Easier said than done, I know! But one of the best things you can do is reduce the amount of demands you make on your child. Get real clear and serious about what things you can let go of control over as the parent or authority figure in your PDA child’s life.
It sounds counterintuitive, but the less you try to control and manage the behaviors you find “unsuitable” the less your child will struggle and the fewer negative behaviors you’re likely to see.
Work On Your Attitude as a Parent
This isn’t what a lot of parents want to hear, but this can be one of the most transformational things you’ll ever do for your PDA kiddo. It can be so hard to try and parent these kids because they don’t want to have anyone in a position of authority over them.
I like to joke that many PDA kiddo came out resenting the fact that they have to be parented and wanted to skip right over their childhood, so they can get straight to adulthood and make all their own decisions!
As a parent, that’s a hard one to work around for many reasons.
For starters, when it comes to safety, most parents feel like that is their primary responsibility and the most important thing they can offer their child. The rules we place on our PDA children to keep them safe are sometimes the things that push them past their limits and into unsafe behaviors and coping strategies.
Get clear on what your role is as the parent of a PDA kiddo, and be willing to step back from what you assumed your place would be in their life.
I’m not advocating for letting them run around Lord of the Flies style, but this diagnosis requires a fresh approach to parenting and often a huge shift in perspective.
Use Flexible Approaches
Flexibility is key when dealing with Pathological Demand Avoidance. Traditional approaches that work with other autistic children may not be as effective for those with PDA.
Instead, focus on finding flexible strategies that allow your child to feel a sense of control and autonomy. Collaborate with your child, providing choices and alternatives whenever possible.
Build Trust and Rapport
Building trust and rapport is essential when supporting a child with PDA. Establishing a positive relationship based on understanding and empathy can help minimize anxiety and resistance. Take the time to really listen to your child, validate their feelings, and work together to find solutions that work for both of you.
Try to spend time just enjoying your child and letting them take the lead in whatever activities you do together.
Creating a close, stable, and trusting relationship is key with a PDA kiddo. Understand there may be some “relationship repair” you need to work on with them. Be willing to put in the time and effort to work through some of the challenges that were created before you knew and understood more about your child’s PDA profile and actively started making changes to your parenting style.
Using Visual Supports
Visual supports can be incredibly helpful for children with PDA. Visual schedules, charts, and other visual aids can provide clarity and reduce anxiety associated with demands and transitions. Incorporate visual cues to help your child understand expectations, navigate routines, and feel more in control of their environment.
It also takes you as the parent out of the equation…it’s not mom or dad telling them to do something, it’s the chart! There are tons of apps available now that can help you set this up electronically. If your child is pre-verbal or isn’t yet reading, many of the apps also have built-in systems that make communication easier.
A special note on timers: if you haven’t already, using your phone’s timer to help PDA children navigate transitions and to disengage from an activity is a great tool…again, it’s not mom or dad telling them they have to stop, it’s the timer. It doesn’t always work, but sometimes it does! Visual timers can be especially helpful for this task.
Collaboration and Negotiation
Engaging in collaboration and negotiation can empower your child with PDA. Instead of imposing demands, explore ways to present requests as options. Allow your child to have a voice in decision-making processes, encouraging a sense of ownership and cooperation.
This book by Dr. Ross Greene was a game-changer in our house! It describes his Collaborative-Problem Solving solution and walks you through the steps you need to implement a radically different way of parenting your PDA child that helps them feel more in control while also helping you navigate your role as their parent in a safe, encouraging, and supportive way.
Seeking Professional Support
For the love of all that’s good in the world, seek professional support from therapists, psychologists, or specialists experienced in working with PDA. They can offer valuable insights, personalized strategies, and support for you and your child.
This is one diagnosis you probably can’t navigate on your own and manage to successfully raise a happy, independent child whom you have a healthy relationship with. Seek support wherever you can find it.
PDA can make getting the other therapies your child needs, like PT, OT, and speech therapy, more challenging. You may have to work on strengthening your relationship with your child, and building up a level of trust and safety with them before you’re able to move on to other therapies.
I’d suggest working with a qualified play therapist or possibly doing Parent-Child Interaction Therapy to address the underlying PDA challenges if your child is struggling with the other therapies they need due to their autism diagnosis.
Make Sure You Get Your Self-Care In
If you’re parenting a PDA kiddo, you have my empathy…raising these kiddos is exceptionally challenging (ask me how I know ๐).
As the mom of a PDA kiddo, it’s beyond challenging to parent a child who refuses to be parented. I let my self-care go for years and eventually found myself as the charter inhabitant of Martyr Mom Island…plus I was about 30 lbs overweight, addicted to sugar, needed surgery for PCOS and endometriosis, chronically exhausted, and I was dealing with widespread chronic body pain and migraines.
When I started to focus on taking care of myself, my relationship with my kids actually improved. My health issues started resolving. Everything got a lot easier, and life has been so much better since I stopped focusing 100% on my kids and started paying attention to my own needs (and even a few of my wants).
Without self-care, I can practically guarantee you that raising a PDA child will have serious, negative consequences for your health and well-being. So please, take care of yourself!
These are some of my favorite self-care resources…
Conclusion
As a parent, you possess incredible strength, love, and dedication. By understanding Pathological Demand Avoidance in autistic children and implementing a few tailored strategies, you can create an environment that nurtures your child's unique needs and dramatically reduces the friction and challenges you’re probably dealing with now.
Embrace their unique perspective, get the support and help you need, and celebrate their strengths! Remember to take care of yourself along the way. Together, we can navigate the path of PDA and help our children, and ourselves, thrive.
Disclaimer: This article provides general information and support. It's essential to consult with qualified healthcare professionals for personalized advice and guidance. This article is not medical advice, and should not be treated as such.
This article is part of our series on Autism and Co-Occurring Conditions…check back on August 2, 2023, to view the complete collection.
Meet your self-care coach!
