I was just diagnosed with ASD (Autism Spectrum Disorder) in December of 2022, a few weeks before my 58th birthday. I wrote about what caused me to seek this diagnosis here. I’m rather new at this stuff, and I’ll be blogging quite a bit about various aspects of it as I go along, reading and learning and wondering what this means for me, as I suspect that quite a few other people are experiencing a similar thing.
Check out my autism category for a list of relevant blog posts, and never forget that 1) I’m just one person, writing about my personal experiences with a thing I only just learned I had. 2) No two people on the spectrum are alike. 3) I am not a medical or mental health professional. 4) I’m not attempting to write a one size fits all autism advice column.
Recently discovering that I have been walking around for nearly 6 decades with autism has given me a completely different perspective on my past, present and future. At first, my ASD diagnosis had me feeling euphoric. Finally! Answers! Vindication!
But the more I learn about my condition, the more reality is setting in for me. I don’t think I realized how profoundly everything in my life would be impacted by this new understanding. I wish I had more support, but services for adult autistics are very thin on the ground.
That really surprises me, because there are an estimated 5.4 million autistic adults in America alone. Despite searching online for hours, I couldn’t find a breakdown as to how many of those were diagnosed as children, how many were diagnosed as an adult, how many suspect but aren’t pursuing a diagnosis, and how many of us are wandering around feeling broken and confused and clueless about autism, like I was a month ago.
Naturally, I feel for that last group the most. Not understanding the why of things can be really isolating and upsetting. Having answers is such a relief, but it’s a bit of a double-edged sword. The majority of us who have managed to fly under the radar this long are most likely highly intelligent and relatively functional, so it would be easy for mental health professionals to assume we don’t need help. But I’m here to tell you that I really, really need help. Here are some of the issues that I’m dealing with.
I’m finding the acceptance process to be similar to that of mourning. I have good days and bad days. There is anger and depression for sure. I haven’t exactly experienced denial or bargaining, but I have no idea how I’m going to feel from one moment to the next.
Sometimes I feel joy because I’m finally finding my tribe, and the more I read about autism, the more I understand about myself. Other times I feel the harsh reality of the prejudices people have about autism, and how those prejudices affect me on a daily basis. One loved one no longer speaks to me, and I’m guessing that’s because she is not willing to discard the drama queen lens through which she has always viewed me. It’s a shame, because she’s the only person left who might be able to give me answers about things that I’m wondering about from my childhood. So in that way, it really does feel like I’m mourning someone I love.
It also feels like I’m meeting myself for the first time. I’m not sure who my authentic self is anymore. After a lifetime of masking my symptoms in an unconscious attempt to fit in, I’m no longer sure what is real. All of that is a lot to unpack, and I am mostly having to do it all alone.
Dear Husband has been extremely supportive and willing to listen, though. In that I’m extremely lucky. He has read quite a bit on the subject, too. But this is essentially one of those you-had-to-be-there scenarios, and I’m happy to say that he’s never had to be there before. I’m having to deal with a lot of guilt because of the extra burden this places on him, too, although he’s never said so. He’s willing to go there with me, but I’m sure it wasn’t in his original 5 year plan.
Looking back at my childhood through the lens of autism is clearing up a lot of confusion for me. The extreme effort my mother put into trying to get me to make friends felt like torture to me at the time, and ultimately it didn’t work, but I can understand why a mother would want her daughter to be more “normal”. To be clear, she never made me feel like I was weird. Society needed no assistance on that score. I just wish she had been able to talk to me honestly about how atypical I was, because then the “what’s wrong with me” battle that raged within me wouldn’t have felt quite as lonely, and maybe I wouldn’t have felt like such a failure at life. But little was known about autism back then, and I’m sure she did the best she could.
Services for autistic adults are, as I said, practically non-existent. I was on a waiting list for 6 months before I was finally evaluated, and now I’m on yet another waiting list to get help from the University of Washington’s Adult Autism Clinic. They told me it would probably take a year. Meanwhile, I’m barely sleeping because wave upon wave of new perspectives about my past keep crashing over me, and I feel like I’m having to tread water.
The need for these services are not going to go away. As autistic children “age out” of the services they now receive, what then? Do they get to fall into this crack with the rest of us? And the more adults get diagnosed, the more they’ll talk to others, many of whom will attempt to seek a diagnosis as well. You might say that adult autism is a growth industry.
From a capitalist perspective, it stuns me that there is such a potentially lucrative unmet need out there, and no one appears to be making an effort to fill it. Hence my desperate plea to future mental health professionals. We need you so badly.
I’ve seen so many therapists who did not spot my autism and sent me on wild goose chases that did not result in any healing or answers. I am trying to find a counselor who takes my insurance and has experience with autism. But so far they’re either not accepting new patients, or they don’t take insurance and want to charge anywhere from $150 to $250 per session, which makes them well out of reach to the majority of us. I’ve also looked for support groups, and they are, indeed, out there. For an equally high fee.
I know I’ll get hooked into the system, however flimsy it may be, eventually. But I’m struggling right now, and crashing into brick walls at every turn. Advocating for myself is stressful and exhausting. I cannot imagine how someone who is even less functional would be able to handle it. I’m sure many give up in despair.
There is a tsunami of adult autistic trauma out there. If you don’t believe me, check out this YouTube video by Orion Kelly about Autism and Self Hatred. It’s heartbreaking to hear this man suffering so profoundly. He does videos about autism on a regular basis, and they’re raw and vulnerable and honest and enlightening. But this one, in particular, is gut-wrenching.
Even if you don’t have time to watch his video, I urge you to scroll down on its page and read some of the 1,442 comments that it has garnered at the time of this writing. Being autistic can come with a lot of baggage. Spending so much time trying to be something you’re not while trying so hard not to be a burden is stressful and exhausting. That in turn causes health issues.
So much pain and loneliness, frustration and anger, confusion and depression is out there. We as a society shouldn’t be wait-listing all this trauma. If we want our communities to be mentally healthy, we need to meet these needs.
Speaking only for myself, I wouldn’t want to be cured even if I could be (and by the way, I can’t). What I want is coping skills and support. I want to feel less alone and more capable. I believe I can achieve that and still be me. But I need help.
I have this fantasy that someday there will be a clinic without a waiting list. This clinic will provide counseling, even to those who are self-diagnosed, and especially to those who cannot afford it. This clinic would provide prompt evaluations and teach life skills to those who need them. It would provide and/or host support groups, and, since we’re dreaming, here, it would even have a quiet, warmly lit café/library to hang out in when you’re feeling misunderstood and overwhelmed. Perhaps it should be called an adult autism community center, which leaves room for all sorts of services and opportunities.
Those of us who find ourselves in the lost generation of adult autistics have been neglected our entire lives. On the whole, this neglect was unintentional. Nevertheless, it happened. Imagine how devastating it is to discover that, even after a diagnosis, that neglect will continue.
We need you. Please don’t forget us yet again. We still have a lot of living to do. Most people, whether they’re on the spectrum or not, just want to live their best lives.
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