Autistic Me: A Very Late Diagnosis

(CW: mention of suicide and some ableist ideas get deconstructed)

             Why even call it a diagnosis? Why not just say discovery? Yes, I was actually diagnosed but only because my insurance paid for it. I know it's rare for insurance to pay. I think a discovery of autism is just as valid and real. And it sounds less medical.

            Autism is not a disease. Some people would argue it's not even a disability. Either way, I was surprised to discover that once I was diagnosed, I was expected to become my diagnosis.

            No one tells anyone, "now, you are cancerous." But cancer is a hideously life-threatening disease. Autism (without other intellectual disabilities) is a different neurotype. And while I guess it can be life-threatening (maybe why I was suicidal for years) it's not a disease.

            I have struggled with 5 autoimmune diseases most of my life. Maybe these are co-morbid with autism. I think they were all caused by the stress of being autistic while not being aware of being autistic. And I'm grateful that I'm actually in remission for these diseases right now. But I know there's a big difference between a disease and a way of being.

            So getting diagnosed late (really late) I had to do some difficult brain reconfigurations, maybe because I'm autistic!

            I didn't get diagnosed til I was 55 (and 10 months, to be exact). I was expected to embrace my autism immediately. The doctor said he had nothing to suggest as far as helping me since I'd already been coping this long. He assumed that my MFA meant I was basically fine. If that were true, why was I there trying to find out if I was autistic?

            At almost 56, I'd been myself a long-ass time, and all that time I'd been trying to figure out what was different about me, what was "wrong" and what could I do about it, and he was saying, "you're autistic, now go away." So I had an answer but no idea what to do with it. I could see that I was wearing autistic clothing, and it was a relief to be able to label those clothes, but it was also hard to claim them, as if I'd maybe borrowed them. But they were so comfortable, and they fit so well.

            I felt as if I was expected to instantly revise my entire (half a century plus) history so that all of my previous life experiences became autistic. Because they already were, but I had not seen them that way. And once I discovered my autism, all of my memories autistified like dominoes, every moment, every memory I have, one by one.

            And being autistic, I have a lot of memories since nothing ever prunes away. So it took time to turn all those memories into autistically-understandable moments. For a while I was walking around with lightbulbs constantly going off in my head! It was exhausting refiling all those memories into different drawers like Not My Fault and Misunderstood and sometimes, Amazing and Funny! But I also filled drawers like, I Wish I'd Known, and then there is the  overflowing What If... That's a depressing drawer to fall into.

            Suddenly I had a name for it, a new identity, and eventually an autistic community to understand me. But it took time to start to forgive myself for things I'd spent years regretting and/or wondering about, mulling over, and even yelling at myself for... Autism is a very beautiful reason to apply to my past and my current struggles. But it takes time to process, (and sometimes it's still happening), and I'm 59 now.

            To become an autistic person, (instead of a person with autism), I had to shift how I thought about myself even though I've always been autistic. Every night I sleep and dream inside my autism. Every morning I wake inside my autism. My autism reads my feed and likes what I like. I have announced to family and friends that I am becoming more and more myself within my autism.

            I let autism explain so much of the difficulties of my life that I can take responsibility for now that I know. For example, I hate the beach - it's a sensory nightmare that literally sucks the life out of me - and I don't feel bad about it anymore. I don't feel as if I'm letting my family down by not going. I offer to do other things that don't involve so much discomfort. So I'm figuring it out. I'm also crediting autism for all of my so-called superpowers.

            My son hates all this. "You weren't this autistic before your diagnosis. Why does it seem as if you're getting more autistic?"

            Because I've stopped pretending I'm neurotypical.

            "You sucked at pretending anyway," he says.

            I read over 60 books on how to parent while I was pregnant. I charted my options, unable to trust my own instincts (or even notice I might have had them). My aunt saw my stacks of library books and said, "you treat having a child like a job!" But wasn't it? I mean, I love my son, and I wanted him to survive. I didn't think I should just wing it.

            This doubting mechanism is probably a big part of my autism. Or it could be my history of being gaslit by neurotypicals to distrust myself. So I try to recognize that. By being more aware of what I worry about, I can often let go of the worry completely.

            I teach playwriting and coach writers and other creatives. It's often consoling to find out that our doubts are part of the process, that most of us have them. In the same way, I've found that having a community of autistic friends has helped me realize how alike we are in our struggles.

            But in the mainstream media, I keep reading shiny articles about middle-aged people suddenly diagnosed who are thrilled to wear this new emblem. I wonder, were these articles written in the very first days of their diagnosis? Aren't they all hiding all the ableism that gets baked into our lives? Doesn't it take time to discover all the ableist ways we feel conflicted over our diagnoses?

            It took me time. First I had to face my own discomfort over what I thought and felt about being autistic. I couldn't be out about it in a positive way until I could understand how  conditioned I had been to feel negative toward any differences. Then I had to find these biases, which don't all show up at once. They take time to discover, to root them out and heal.

            I don't want to hide or push away the process I've had to deal with in coming to accept myself as autistic. For the first two years I felt sad a lot, as if I was grieving my neurotypically biased version of my own history. I was grieving a version of my life that wasn't true. On top of that, I felt upset with myself for feeling sad, as if a part of me couldn't accept my actual autism.

As if it meant something bad. In fact, it has meant clarity. Knowing I'm autistic cleaned my rear-view mirror into my past and provided me with a better way to move forward.

            It has been a relief, but not an instant one. A growing one I'm still growing into and probably will continue to grow into and make discoveries for the rest of my life, since my autism is definitely a special interest. There is also huge relief in knowing no one's going to try to fix me. 

            When I first found out, the spectrum was like a pretty rainbow, but I followed it down to a really cold ocean where I was trying not to drown. The fish were like, "but you belong here!" I was treading water madly. It took a while for me to realize I could get out of the ocean, towel off, warm up, and hang out on the rainbow.