I knew my son was different from the first day I brought him home from the hospital. Looking back now, the best way I can describe it is that he never seemed to be comfortable in his own skin. If people looked at him or spoke to him when we were out and about, he buried his head in my shoulder and screamed.
Once he was old enough to exert his will, exert it he did. At his 4yo checkup, he collapsed into a screaming puddle on the floor after being asked to step on the scale. One year, he lost computer privileges for the entire summer over refusing to accept my husband’s assertion that he wasn’t tall enough to ride a particular roller coaster. My son was close to losing control in a very public venue (and embarrassing his younger siblings, not to mention wasting their time in the park), so my husband gave in and said, “Fine. But if we walk all the way back and you’re not tall enough — which you aren’t — you lose computer privileges for the entire summer.”
My son accepted the challenge. Sure enough, he wasn’t tall enough.
But he wasn’t the least bit upset about losing his computer privileges because, in his mind, he had won. My husband had given in.
You’re not the boss of me!
That was the point where it really crystalized for me that his whole being was focused on proving to the universe that “You’re not the boss of me.”
Nobody understands, either. I had numerous people tell me, “Give him to me for two weeks and I’ll fix him.” I calmly (that part may be a lie) told them, “No, you wouldn’t. He couldn’t care less about rewards and consequences. He’s not a typical child, and he doesn’t respond to typical discipline in typical ways.”
Even methodologies designed for children on the spectrum (like Applied Behavioral Analysis) had zero effect on him. He saw ABA as manipulation, and he did a pretty good job of manipulating right back.
At that time, all of the psychological testing we had done returned “subclinical” results for everything from various learning disorders to conduct disorders. It wasn’t until the DSM-V came out that we were able to get a diagnosis of autism.
As helpful as the autism diagnosis was (especially when it came to the IEP process), I still didn’t feel like that was the whole picture. He had all of the characteristics he needed to get an ASD diagnosis, but there were other characteristics that just didn’t seem to fit anywhere. And we still didn’t have any tools to make him do anything he didn’t want to do — which, unfortunately, included school.
And then I learned about pathological demand avoidance
The day I came across an article on PDA changed everything.
For once, I wasn’t even looking for ways to help my son. I was just surfing the web. Somehow, I stumbled across an article on PDA. It’s a profile on the autism spectrum that isn’t recognized in the US but is receiving a lot of attention (and funding!) in the UK. And when I read the symptoms, my first thought was, “This. Explains. Everything.” Everything!
A child with pathological demand avoidance isn’t just being defiant or obnoxious. They’re in fight-or-flight mode because of the overwhelming anxiety they feel when someone asks them to do something. And it doesn’t even have to be something they dread; some kids exhibit the behavior even when it’s something they want to do. My child hates to be praised, because, in his mind, it creates a demand that he do the same thing again. (I’ve read that this is common among children with PDA.)
Nobody had to tell me my child was demand avoidant, and discovering PDA didn’t miraculously solve our problems, but it did give me a window into my child’s behavior. It also gave me a language and framework to use with his psychiatrist and our IEP team about how to help a child with pathological demand avoidance. They couldn’t use that diagnosis since it doesn’t exist here, but there wasn’t a single person who looked at the pathological demand avoidance profile who didn’t think it described my son perfectly. Nonetheless, none of us could see a solution.
But then my son failed four classes the first semester of junior year.
At first, it seemed as if there was no way he’d start the next year as a senior. But his wonderful IEP team came up with a plan : He’d use the district’s computer-based credit recovery platform to retake those four classes, and then he’d just continue using that same platform to start working through the second semester regular (as in non-credit recovery) curriculum.
Removing a human teacher from the equation also removed the oppositionality.
It worked like a charm. In fact, it was nothing short of miraculous.
Since there was nobody telling him what to do, it circumvented his oppositionality. There was no busy work. He just sat in the library each day, read the text or watched the videos the computer presented him, asked a teacher to open a test when he was ready, and took the test. I think it took him about two weeks to complete credit recovery for all four of the classes he had failed. And he was making great progress on his second-semester classes when COVID-19 showed up and changed everything again.
Our schools closed after third quarter. For fourth quarter, his school offered voluntary “learning” opportunities students could complete to raise their GPA. Since our goal was just to pass everything and start the next year as a senior, his counselor showed him how far he had to go to complete the third-quarter curriculum, and when he completed that, he was done for the year.
If you think your child may have PDA, or if your child’s education is suffering because he hates for anybody to tell him what to do (or alienates teachers by trying to prove he’s smarter than they are), there will never be a better time to circumvent those problems by getting your child set up with 100% computer-based learning, especially with the current wave of the Delta variant. (Not virtual, because attending classes on Zoom doesn’t remove a human teacher from the equation.)
There are a number of platforms that are completely computer-based. Our district uses Plato, but I know there are others. And, thanks to COVID, computer-based learning has become commonplace. If your school district doesn’t use it, try to get it in your child’s IEP. If it’s in the IEP, they have to provide it.
Make sure you brush up on your child’s rights, and then ask for a meeting with the IEP team, even if it’s virtual.
Best of luck! I truly hope this helps someone who’s parenting a child with pathological demand avoidance.
Following are links to books and other resources on Pathological Demand Avoidance. (Disclosure: Affiliate links)
Collaborative Approaches to Learning for Pupils with PDA (This is for teachers but could be a great resource for parents to learn what to ask for in their child’s IEP.)