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.
It’s like reading about what’s been in my own head for the last year. I’ve been struggling for so long with understanding why I am the way I am. My mind is quite sharp and I am even apparently quite successful in my field but no-one knows the cost, no-one really knows me. It’s only recently that I found out about undiagnosed adult autism. I am thinking about a formal diagnosis but the cost means I will need to wait a bit longer for it. In meantime, I will try to continue as I have so far, doing the, as you nicely put it, “I maybe kinda possibly think” thing. It is so good to read about your experience, it makes me feel less awkward about it all, less lonely. Thank you
I received my formal diagnosis exactly two weeks after you and I can relate to everything you wrote here (except for a $6,300 quote…that seems way overpriced). I may have been even more worried of being misunderstood than you because I ended up submitting a 62-page document outlining why I thought I might be autistic along with aligning my traits and experiences with the DSM-IV criteria. I had to wait a month between my last assessment session and my diagnosis review session; I was a wreck that entire month. I continually questioned whether I had left too many things out or if I had somehow misconstrued my life experience. It was such a relief when I received my diagnosis. It was as if, for the first time, an authority figure actually saw me for me.
I, too, agree that self-diagnosis is valid and appreciate anyone who is able to find comfort in self-diagnosis alone. It wasn’t enough for me though. I would have always questioned my bias; when I first realized I might be autistic, all of my life’s mysteries clicked into place, and that felt too good to be true without confirmation.
Thank you for sharing your experience!