Discovering Pathological Demand Avoidance was my “aha” moment, even though it’s an autism profile that's not recognized in the U.S.
Has anyone ever told you that your child is "too social" to be autistic? And does your child sometimes act like his sole purpose in life is to prove that "the universe is not the boss of me"?
From the day he was born, my son was never comfortable in his own skin. The distress just radiated off of him. This was long 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 diagnoses. We were compiling a lot of clues, but nothing quite fit.
When the DSM-5 came out, we were finally able to get an autism diagnosis. It didn’t really change anything except that, when working with an IEP team, autism is a much more “acceptable” diagnosis than something like bipolar disorder or oppositional defiant disorder. So I was able to use the autism diagnosis to get the accommodations my child needed. But that was pretty much it.
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 in the US; it’s not in the DSM-5. 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 the writer is looking right into my son’s soul:
“Anything that compromises the autonomy of that person escalates their anxiety to an extreme state, causing them to appear to be grasping for phenomenal amounts of control over people, places and things.”
My son curled up into the fetal position on the floor at his 4-year-old checkup when he was asked to step on the scale. He used to melt into tears on Saturday nights at the thought of church “hanging over his head” for the next morning. Even compliments upset him, because they set the expectation that he do the same thing again.
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. These kids 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 on emotions 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.
Kids with PDA, on the other hand, tend to have OCD behaviors that involve other people — and they can become extremely agitated if the other person doesn’t comply. For years — even after he graduated high school — our son asked the same questions every day, and we had to respond. (Every morning, he’d ask what’s for dinner, which I find particularly ironic since he never eats what I cook!) And there was one horrible period when his younger brother (who was not much more than a toddler at the time) was the focus. It was terrible for both of them, but my husband and I just answer automatically now.
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. A Behavior Intervention Plan can shield your child from the worst consequences of demand avoidance behavior. Typically, they cover any behavior that can be linked to the child’s diagnosis.
My son is about to turn 20. He’s worked at the same store for over a year and is doing great. If you want some insight on the things you need to teach your autistic child so they’ll be successful after high school, read my article on 10 Truths I Want My Autistic Son to Accept on Faith as He Navigates the Neurotypical World.
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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Great post. Having spent a lot of time immersed in the PDA Community, I know there are many who will relate to what you have written!