I recently spent time with a group of older primary and early secondary-aged young people and their parents. We were gathering to talk about self-care tasks in the home setting but we found the conversation continued to shift to their school experiences. It was clear that these were young people have been finding school hard, like really hard. It felt important to hear what they had to say and permission was given to share some of that conversation below.
PDA stands for Pathological Demand Avoidance or Pervasive Drive for Autonomy
“Who decided this?”
This came up more than once. It wasn’t just about decisions in general, it was about decisions made for them, not with them. One young person asked this in response to a support that clearly wasn’t working for them. They were confused, frustrated, and excluded from the process that was supposed to help them.
“Why didn’t they ask me?”
This was a quieter comment, almost whispered. There was hurt behind it. This young person wasn’t rejecting support outright, they were asking to be included in how support looks for them. It was a rational question that also reflected wanting to be involved in the decision making that directly impacted them.
“I need time to think. They rush me and then I can’t say what I was going to say.”
Communication takes time. Processing takes time. We might be unintentionally closing down connection during busy days.
“I don’t always know what’s going on.”
When adults make plans, changes, or even introduce supports without explanation or collaboration, it can feel like chaos. These young people are already working incredibly hard just to keep going in school each day. Feeling uninformed only adds to that load.
“I wanted to know why.”
This was a good reminder that curiosity and a desire to understand are not acts of defiance. They’re efforts to connect and make sense of expectations. But for some of these kids, asking “why” has been treated as challenging authority rather than seeking clarity or consent.
There was a clear overall pattern: disconnection.
These conversations were a reminder that when we talk about support or daily school life, we must start by listening to the young people at the heart of it. Their questions expressed frustration but are also invitations for us adults to rethink how decisions are made. We can ask our own questions like, “What do you think?” or “How does this feel for you?” in order to shift towards collaborating together.
About Laura Hellfeld:
Laura is an PDA Autistic and ADHD health educator, independent Nurse & Sleep Consultant, and Associate Editor of Autistic Revolution magazine, specializing in supporting neurodivergent and disabled community members.
Drawing from lived experience and public health service, Laura creates inclusive spaces, hosts community events and co-authors books like Gabby’s Glimmers and Creating Safe Spaces for Autistic People.
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PDA North America is a 501(c)(3) non-profit organization that has supports and resources for Pathological Demand Avoidance/ Pervasive Drive for Autonomy. We provide resources for families, professionals and PDA individuals. Please consider a donation to allow us to better support PDA individuals.
