I wrote “Why Computer-Based Learning Could Be the Miracle Your Autistic Child with Pathological Demand Avoidance Needs” to let parents of kids who might have PDA know about new educational options that have emerged during the coronavirus pandemic. But there’s something else I want to talk about: Having doctors and educators tell you, “Your child is too social to be autistic.”
When you can’t get an autism diagnosis because your child is too social
I never had a doctor say that exact thing to me: Nobody knew what was going on with my child. This was before the DSM-5 came out, so we had lots of evaluations that said “characteristics of” autism, ODD, OCD, BPD, and a few other alphabet diagnosis. We were compiling a lot of clues, but nothing quite fit.
Then I just happened to stumble across an article on PDA. No doctor had ever mentioned it to me, but that’s because it’s not recognized here. And if it’s not in the DSM-V, it doesn’t have a diagnostic code. And if it doesn’t have a diagnostic code, it doesn’t exist.
Fortunately, the UK not only recognizes it, they’re putting a lot of research into it. Moreover, the Pathological Demand Avoidance (PDA) society is a fantastic resource with information on just about any aspect of PDA you could think of.
But I like this quote best. It makes me feel like she’s looking right into my son’s soul:
Back to the whole “too social to be autistic” thing…
It’s true: Kids with Pathological Demand Avoidance (PDA) are often much more social than kids with other types of autism. And that can lead to a delay in getting an autism diagnosis.
Which is a shame, because those social behaviors skeptical doctors are seeing are superficial, not intuitive. They learn to “pass” by observing others and mimicking their behaviors.
My son, for example, has an amazing understanding of social behavior, but it’s academic. He understands the “rules” perfectly well. When he was in high school, he’d follow the ones that benefited him and find creative ways to get around the ones he didn’t like. This kid could take teachers, administrators, case managers (and parents!) down and across so many rabbit holes that you’d lose track of what the discussion was about. Then he’d toss out the resolution he wanted and, often as not, everybody was so drained and confused they just went along with it. Sometimes there was a counteroffer, but he was always ready for it.
And, interestingly enough, he has no problem following the rules at his job. I asked him about it one time, and he looked at me like I was crazy, then explained that doing homework in subjects he would never use was a waste of his time. His job is completely different, because it helps him get the life he wants.
But as savvy as he is at navigating social situations, he does it as an observer. It’s academic, not intuitive. (In fact, he’s explained to me in detail exactly how he does it.) And he constantly asks me why people make important decisions based onemotions rather than logic. (I’m looking at you, Mr. Spock — beam me up!)
Their OCD behaviors are often focused on other people
There’s a lot of comorbidity between autism and obsessive compulsive disorder. If you want to read about the nitty-gritty details, you can find them here (since I’m not a neurologist, I’m not going to try to distill the results of studies on “brain pathophysiology“).
But here’s what I got from those and other sources (not to mention direct experience):
It’s hard to tell whether “ritualistic behavior” is a symptom of autism or a comorbidity of OCD. And it really doesn’t matter.
For most kids on the spectrum, ritualistic/OCD behaviors tend to be solitary: arranging objects in a particular order, “checking,” doing something a particular number of times, etc.
Bottom line about kids in the Pathological Demand Avoidance profile
What I’m hoping everyone takes away from this is that the social aspect of PDA behaviors can lead to a delay in getting an autism diagnosis. I can see how a busy pediatrician, who only has time to get random snapshots of your child, could be fooled.
So your objective (and it really is up to you) is to avoid a delay in getting an autism diagnosis — and therefore in services — because your child is “too social.” Once you get a general autism diagnosis (you don’t need a particular “profile” to get IEP services), you can work on getting accommodations that help kids with PDA. You don’t even have to mention PDA if you can get accommodations that will work best for your child without it. (Some IEP teams don’t like to be “educated” by parents!)
One thing I strongly recommend, however, is a behavior plan. Because when your child takes his demand avoidance to school, you’re going to need it.
If you have a child with PDA, you’re probably giggling right now, because that’s not how your child operates. But a Behavior Intervention Plan can also shield your child from the worst consequences of disruptive behavior. Typically, they cover any behavior that can be linked to the child’s diagnosis.
I truly hope this helps someone out there, especially someone struggling to get a diagnosis because your child doesn’t fit the typical autism profile.
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