From Madison Lyonhart:
I don't talk a lot about my children's diagnoses, but today is PDA day and I think it's incredibly important to spread awareness and acceptance regarding it. PDA stands for Pathological Demand Avoidance or Persistent Drive for Autonomy. It is commonly classified as a subprofile of Autism and sometimes ADHD, yet other specialists believe it should be its own separate diagnosis. Well regardless, my boys have all three...Autism, ADHD, and PDA.
Learning about PDA has been a game changer for us and has transformed our lives over the past year. I constantly wondered why we seemed different from other Autism families. Why accomodations for children with Autism just seemed to trigger my children. Why we always felt like we were standing on the edge of a cliff...
PDA is a nervous system disability. It means that demands (go get your coat), perceived demands (time to put shoes on), even biological demands (your body telling you that it needs to pee) are perceived as threat to the nervous system. My children have been stuck in a constant state of fight or flight for years and we couldn't figure out why (nor could our doctors, therapists, teachers, etc)...when we learned about PDA we finally felt seen.
But life is full of demands....so what did we have to do? We've had to strip our lives, specifically the lives of our children, down to the bare minimum in order to get their nervous systems regulated. It's taken a year for us to figure out what this looks like and to act upon it. It has meant that we had to switch to "homeschooling" (which doesn't look like traditional homeschooling at all), we stopped going to church in person, we stop going on trips, we stopped visiting family, we stopped going to fun things, we stopped expecting our children to clean up after themselves, stopped asking them to be polite, stopped setting screen time limits...and the list goes on...because all of those are chalked full of demands and we needed to eliminate everything that wasn't totally necessary. We stripped it down to health and safety and those were the only demands we had. And it has been HARD! People don't understand, honestly we barely understand...
We adopted declarative language, a low-demand parenting approach, emphasized connection over coercion, and began practicing radical acceptance.
After some very hard years and 6-7 very hard months of adjusting and sitting in their nervous system burnout, we are starting to turn a corner. Starting to see the light. But that doesn't mean we jump back into things...it means we allow their nervous systems to lead and stay very attuned to it backing off as needed.
This past weekend we went to a one on one playdate for one hour at a playground where we were the only people. It was highly controlled to be safe, low demand, etc. And we saw the residual impacts for a couple of days because of the effort that it took and the toll it took. Playdates require soooo many demands...get dressed, put on shoes, get in the car, buckle up, go here, obey park rules, don't run off, interact in socially appropriate ways, speak kindly, share, take turns, now it's time to go, get in the car, buckle up, go in the house, take off your shoes....It's a lot for PDAers.
So if you didn't know, now you know and can begin to understand. Because this world isn't built for them, but we can help build a new world. It's worth it because my boys are wonderful, brilliant, kind, loving, and they deserve acceptance and understanding.
