I got my formal diagnosis today. It’s hard to quantify how much this means to me. 2020 has been an incredibly stressful year. My mental health has been shit and my writing has slowed to a crawl. On top of that, my lack of a formal diagnosis has been a constant source of anxiety. I’m an autistic author writing autistic characters. While self-diagnosis is widely accepted within the #ActuallyAutistic community, anyone outside that sphere would find it laughable. I know I don’t owe anyone my diagnosis, but when you have a self-diagnosis it’s tempting to caveat everything with “I maybe kinda possibly think” to avoid feeling like lying. I’ve avoided doing that on my author platform, living in fear of the day someone might ask me directly, and me responding with the truth, knowing how that would be perceived.
I mostly avoided formal diagnosis because I was afraid of unforeseen future discrimination. I still am. This stuff can be used against us in things like custody battles. While my spouse would never do that, you never know what the future holds, especially when one lives in a country with a president who openly mocks disabled people. I’m still scared of having a formal record of my diagnosis.
But there’s another reason I avoided professional diagnosis- imposter syndrome. Many of us have co-morbid anxiety (I do) and this leads us down the path of self-doubt, no matter how many times we stack up our traits against the DSM. So what if I sent my psychologist thirteen single-spaced pages of how I met the criteria? What if I was deluding myself? What if I had more friends than I thought? What if I wasn’t outwardly autistic enough for the examiner to see? I had to find someone experienced in diagnosing adult women. Otherwise if I didn’t get a diagnosis I’d always wonder if it was a failing on the part of the examiner.
So I searched. Not a lot of people in my area diagnosed adults, let alone specialized in women. Then I got a lead from a friend—the clinic that diagnosed her daughter specialized in girls and women. They were quite a drive, but doable.
The cost? $5500.
It’s a special kind of hell having to pay thousands of dollars to subject oneself to grueling examination by a professional just to have one’s identity validated. I couldn’t justify the cost so I didn’t move forward. That was a couple years ago (they’re now $6300). I searched again and found a clinic for $2500. Still a lot, and they didn’t specialize in women.
At this point I really wanted a formal diagnosis. If I went with the $2500 place and didn’t get it, I would second guess the results forever. But $6300 is so much god damned money. I could get so many books edited for that. I took a chance and went with the cheaper place. They did mention women on their website, and despite my trepidation when I emailed them, the psychologist seemed decent. (Having been through the whole process now, I can say that she’s good with autistics—great at priming what to expect and you can set up everything by email instead of having to call, THANK FUCK.)
I was initially quite worried, especially since I didn’t know how many of my traits were evident in childhood. That’s pivotal to an autism diagnosis—it can’t be something that shows up in adulthood. This can make it hard to get a diagnosis if you don’t have any living parents/caregivers able/willing to give an accurate history. The psych told me a lot of parents don’t remember enough. I spoke to my mom after scheduling the diagnostic process, not before, so I had no idea how much she recalled of my sensory issues or anything else.
Turns out I needn’t have worried. Learned some new things about myself, like how people thought I was hard of hearing, though my dad liked to point out, “How can she be HOH when she’s so sensitive to noises?” Indeed. After talking to my mother, I was a lot more confident I’d get a diagnosis and stopped stressing over the impending results.
It was nice going into my final appointment today for the results and being more mentally prepared. I’d originally anticipated much crying, but I’d had a week to adjust so I wasn’t an emotional wreck. I feel validated and seen.
I want to end this by saying that self-diagnosis is valid. It’s not like I was any less autistic before my formal diagnosis. There are a lot of barriers to diagnosis. I was very privileged to be able to afford mine. Not can afford it, and that’s assuming they can even find a doctor to take them seriously. Women in particular are extremely likely to be misdiagnosed with things like Borderline Personality Disorder (BPD). BIPOC are still underdiagnosed.