I’m having a great time reading other people’s Autistics Speaking Day posts. I used my previous post as an ASDay submission. Reading through other people’s posts, though, I want to post something more explicitly addressing the sorts of invalidation that a lot of us “adult-diagnosed” folks have faced.
One of the myths about adult diagnosis is that if you made it to adulthood without getting an autism spectrum diagnosis, this means that your disability was not very “severe” or, at the very least, that it wasn’t very “visible.” That’s not the case with me. My parents suspected that I had a disability already when I was a child. I first started seeing a counselor in middle school when my parents became concerned about my social isolation and realized that I was not going to outgrow my restrictive dietary habits. I was having so much trouble with bullying in public middle school that my parents took me out and placed me in a small private school; four years later, I had to switch to yet another private school because the two friends I had there were leaving and I needed a fresh start. My repetitive behaviors, including tics, skin-picking, and tooth-grinding, have done serious and irreversible damage to my body.
The problem was not that nobody noticed I had a disability (although I’m sure this happens to some people). It was that, by the time the Asperger’s diagnosis even existed, I was a teenager and had learned to hide most of the symptoms listed as criteria in the DSM-IV, at least in a clinical office setting. So instead, I received a number of “partial” diagnoses that addressed only some of my symptoms (such as social anxiety and compulsive, repetitive behavior).
In some ways I’m glad that nobody identified me as having ASD before I’d already developed a stable sense of self. I was able to escape some of the stigma (and I do think that it can be worse to be seen as having ASD than as having OCD) and avoid some of the more counterproductive “treatments” out there. I especially appreciate that people recognized my tics, compulsions, and social behavior as neurological/emotional issues and did not try to use “behavior modification” techniques to alter them without addressing the underlying issues and discomfort.
Nonetheless, these partial diagnoses prevented me from getting treatment that acknowledged my full range of challenges. For example, picking behavior was treated as exclusively an anxiety problem when in fact it had a sensory integration component. One reason it took so long for me to receive an ADHD diagnosis was that, even though I frequently had attentional lapses, I also sometimes had periods of “hyperfocus” where I would attend to the same thing for hours, whether I wanted to or not. Treatment providers and I both interpreted these hyper-focused episodes as evidence that I did not have ADHD, even though it seems to be a pretty common feature of people who have both ASD and ADHD. I also missed out on the support of people who were actually similar to me.
What I’d like to say to people who don’t think that we adult-diagnosed, “high-functioning” people really have autism spectrum disorder is this: what do we have, then? We all seem to have the same sort of thing, it’s real, it’s disabling and distressing, and it’s remarkably similar to what’s going on with all of those adults who’d been diagnosed as autistic as kids and then grew up to be “articulate” which in your mind means “not autistic.” Suppose you were actually to convince me that we all actually had, say, “squigglebrain disorder.” Even then, we’d point out that squigglebrain disorder seemed to have a bunch of the same features as autism, and that a whole bunch of people diagnosed with autism as kids turn out to have been “misdiagnosed” and actually have squigglebrain disorder. At that point we’d conclude that squigglebrain disorder is on the autism spectrum, and then we’d basically be at the same place that we are now. Why not just let us say “ASD”?