Finding the Balance: Supporting PDAers Without Overloading Our Young People
Article Background
Recently, I had the opportunity to do a Q&A session on toileting support with PDA North America. One of the side tangents during the chat was about the balance we often need to strike: ensure giving young people enough information and support to develop toileting skills, without making the task feel too demanding or pressured.
This part of the conversation echoes many of the chats I’ve had with parents and carers over the years. While this chat is focused on toileting, it can be extended to other self-care areas too.
You can listen to that Q & A on PDA North America's Youtube channel here
We know that step-by-step charts, checklists and routines can feel especially tough for PDAers. These kinds of supports can come across as boring, overly rigid or just another demand being placed on them. “You expect me to do all of this, every time? No way!”
PDA stands for Pathological Demand Avoidance or Pervasive Drive for Autonomy
Hear me out: in our efforts to be PDA-affirming, we might have avoided those above supports. But sometimes, it can be helpful to think about striking a balance with gently offering more information, not less.
Image from Canva by Mazirama from Getty Images
You may also be interested in my blogs on PDA such as 'Demanding Respect from PDAers in the School Setting: Why Hierarchy Backfires & What Builds True Connection Instead', ‘Getting to Know More About PDAers: The Less Discussed Characteristics‘,‘PDAers and Compliance: Understanding the Real Challenge‘ and ‘PDA Signposting: A Growing List’
It’s not about forcing a checklist or insisting on visual schedules. Instead, think of it as providing all the information. This way your young person isn’t left guessing. Sometimes, what looks like refusal or resistance is actually a way of saying, "I don’t feel safe because I don’t fully understand what this will involve." That might include not knowing:
What the steps actually are
What each part feels like (especially sensory-wise)
What comes next or how long it might take
When information is incomplete, PDAers (and of course others) are more likely to refuse. This is not because they’re being difficult, but because unknowns feel worrying.
That includes with toileting.
So, how do we offer guidance in a way that feels supportive rather than controlling?
Make it optional - visuals or explanations can sit nearby, not be handed over with an expectation.
Use their interests or humour - perhaps a funny comic strip version of the steps.
Offer different formats - Explore pictures, videos, stories or even acting it out.
Let them be the expert - co-create the guide with them. “What do you think happens after this bit?”
Most importantly, don’t assume they already know the steps. Sometimes they don’t and that missing information might be the very thing getting in the way.
Thank you for learning about the community,
Laura Hellfeld
RN, MSN, PHN, CNL
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References and Resources
PDAers and Compliance: Understanding the Real Challenge, Blog
Getting to Know More About PDAers: The Less Discussed Characteristics, Blog
Distress Language: How to Tune into What Your Child Can’t Say, Blog
Gabby’s Glimmers: An Affirming Story of an Autistic Child and their Favourite Food
Toileting Q & A on PDA North America's Youtube channel