I have been thinking a lot about “formal” diagnosis. Mostly because I have to keep wading into the perpetual argument that is the autistic community.
The argument is “Are self-diagnosed autistics really autistic?”
And I am not really gonna get too much into that argument, because I feel that it is ultimately just another form of gatekeeping and FOMO induced scarcity. As in, “But I am really autistic, so my opinion matters more.” Or “If doctors keep giving out diagnoses like candy, there won’t be enough services for the rest of us.”
Those are both totally real comments I have seen on this argument. 1) Autism is a diverse spectrum full of different experiences, strengths, and weaknesses, no one voice is more real or authentic than the other. They are just different. One person’s story will not somehow dilute yours. And 2) A person would not be going through the painful process of jumping through hoops and paying through the nose for a therapy or service if they didn’t need it. In fact, most autistic people would prefer to be independent without any kind of service. Usually this “therapy hoarding” is coming from a parent of an autistic person who sees Autism Mom™ as their identity. And so ultimately, it’s just another case of “I was autistic before it was cool.”
No, I want to talk a little more about my “formal” diagnosis, because I am starting to think it’s not as formal as I once thought…
As I have written before, I was self-diagnosed before I was formally diagnosed by my doctor. It was a huge battle to get to that point. I was misdiagnosed with wrong disorders, and then partially diagnosed with many co-occuring conditions, like Bipolar, OCD, Anxiety Disorder, and ADHD.
But I had to fight for my autism diagnosis. Mostly because I am a woman who can mask my way through a fifteen minute conversation. (Also because my stimming seemed like manic behavior to my doctor, who specialized in Bipolar Disorder. When you’re a hammer…)
I also had to fight for my ADHD diagnosis. Now that the meds have worked so well for me, my doctor is convinced about my ADHD like it was never questioned by him. But when I mention my autism, he goes strangely quiet.
Which leads me to believe that he is still questioning it…
Now. That could be me and my Rejection Sensitive Dysphoria, I can cop to that. Cognitive distortions magnifying something that isn’t actually there. And to be fair to him, I don’t mention it a lot. I basically pushed for it until I got an agreement and immediately shut up about it because I didn’t want to annoy him.
(I talk more with my counselor, who is very aware of my autism, very affirming, and very helpful with my more bothersome traits. My psychiatrist is really more about medication and diagnostic legitimacy.)
With all that said, I don’t think it’s that strange to feel that I am being patronized as a female patient.
And truthfully, as a master masker, I do change my behavior to what he would want to see. I dig deep for my southern background and say, “Yes, sir.” And “Thank you, Doctor.” Good old fashioned manners to match his good old fashioned suspenders and stoicism. I mean it too. I am not being disingenuous. I am just falling into old patterns because he makes me nervous.
He’s a great psychiatrist. I am not complaining. I think he is certainly the best that is available to me in my small town (technically, the only psychiatrist available to me in my small town.) And even if it took some pushing into modern schools of thought, he got there with me. Who knows? Maybe he was always there. Maybe he just genuinely thought that I was only Bipolar, until he didn’t. Until he saw the effect that the stimulant medication had on me.
But, as I’ve said before, should I have had to fight so hard with a professional to come to a conclusion using the same information at his fingertips that I had? I was researching medical journals, not some hippy-dippy anecdotal evidence. I was looking at the DSM.
Which, ultimately, to me, means that “formal” is nothing more than another example of systemic pressure to conform to what we are supposed to be. What do I mean by that? I mean, we aren’t autistic until we are the right kind of autistic for our specific doctor.
In my experience, no two diagnosticians are alike, so not only are we running up against a gender/racially biased DSM, but the political and cultural opinions of fallible human beings.
“Formal diagnosis” is just another way to fail by society’s standards. And I think we’ve had enough of that for one lifetime. There are good reasons to get a formal diagnosis, insurance purposes and proper help, for example. Like my medications. I needed a formal ADHD diagnosis to get the stimulant medication that helps me the most. I needed my bipolar diagnosis to get the right medication to help me with my mood stability.
But there is no real medication for being autistic. Because autism is not a disease. So, in the end, I say that formal diagnoses are necessary for co-occurring conditions that can be helped by therapy and modern medicine. Like ADHD, like Bipolar, like anxiety and depression, etc.
For your “formal” autism diagnosis? I say get yourself a top hat and ball gown and call it a day. You know you.