Autism Stories
My Special Interest in Autism Crashed Me
more life with late-diagnosed autism
Have I abandoned my autism? This of course I cannot do, no matter how much I ignore it or mask against it or worship at the altar of ableism. So why have I not published anything about autism on Medium for almost three months? Is it possible to burn out from focusing too much on autism?
I suspect that those of you who have been diagnosed longer than I have been will answer: “of course you can — did you not realize this?” Likely you behaved as I did until you crashed, just as I crashed.
— Hello Autism, My New Special Interest —
How did I come to this place in my life? When, 18 months ago, my assessing psychologist set down her pen, looked up, and said those unforgettable words “yes, you are autistic,” my world began to spin too fast. All the things: relief, confusion, grief, mourning, anger, denial, feeling like a fraud, on and on. My ADHD brain touched each of those, then moved on to the next, like some strange speed-dating. My autistic brain wanted everything to slow down, to stop spinning, so I could lay my diagnosis out like a pithed frog to dissect and understand. My autistic brain won this contest, so my diagnosis, my autism, became my special interest.
This special interest consumed my time, consumed me. Book after book, article after article, podcast and YouTube and Medium. But those weren’t enough. I constantly observed myself and kept notes: each new or increased stim; each time I was too literal; every eye-contact struggle; every routine, especially when disrupted. You get the idea. Slowly, I came to internalize my diagnosis, that I really am autistic.
Other late-diagnosed autistic adults told me how common it is to make autism a special interest. It is also common to appear more autistic after being diagnosed. These seeds all come from the same fruit: diagnosis, special interest, becoming more aware of how autism wants to express in us, becoming “more autistic.” And then it becomes far too easy to make autism our identity rather than part of the whole that makes us who we are.
— Too Much Autism as Special Interest = Crash—
So I spun and continued to spin spin spin until I fell and crashed. No longer did I have the energy to obsess about autism; I stopped reading about it, stopped consuming research and personal stories of other autistics. I stopped watching my favorite programs with autistic actors and characters, such as A Kind of Spark, Everything’s Gonna Be Ok, even Mob Psycho 100. And although I have more than a dozen unpublished drafts of Medium articles about my autistic experience, I stopped working on any of them.
My wise self-preservation instincts realized I was crashing. They compelled me to move away from the too-hot crucible of autism as special interest. Instead, they allowed it to linger, inchoate, waiting in the background, for the right time again to emerge. I tried to rest, to read fiction (not easy for my autistic brain!), to write in other forms and about other topics. I wrote poetry, much with a mystical leaning, and published my poems on Medium. I let music possess and carry me. I walked. And walked more. I opened to what might come my way.
— What is Happening to me? Processing My Autism —
As I distanced myself from autism as special interest, I wondered what had been happening to me after my diagnosis. I realized that, in the past 18 months, I have been trying to process an autism diagnosis that I should have been able to process decades ago. Perhaps I would have, if only I were not part of that “Lost Generation” of autistic adults.
All the depression, anxiety, isolation, past bullying, all the current grief, confusion, imposter syndrome feelings, self-doubt, anger, and the rest, I should have been able to understand as connected to my autism. Instead, I judged myself as weak, broken, and inadequate, and I developed profound self-loathing.
Coming to terms with all of this takes considerable time, as other autistic adults have advised me. Much time, much effort, much grief. I am learning to pace myself, embrace patience and self compassion. But I also must keep moving forward.
— My Toe Still Dipped in Autistic Waters —
Even as I laid autism as special interest gently to the side, I paid attention to my autistic experience in the world. I was stimming so much more. Was I faking this, playing the character of autistic? Was it some form of OCD? No, there is this energy, an internal whirling, that I have always felt but had to compress into a tiny red-hot ball. So much pressure; when released, it exploded, often with hurtful results. Now, as I stim with my fingers, or drum, or sway, or shake my knees, or rock and press my thighs, or tap my chest, or close my eyes, etc. etc., I feel that whirling energy begin to calm, to be released in small bursts, not explosively.
I observed how stimulus affects me. Instead of numbing or mildly disassociating, I opened myself to the sounds, sights, smells, tastes, and touches, sought to fully feel them. For example, when I feel a sound start to startle me, I try not to brace; instead I let the sound flow through me, trigger my nervous system, cause me to jump or duck or even shout. Other people might be surprised when they witness this, but eventually, they learn it is all part of my unmasking.
— Now Rested, I Begin Again —
Eventually, I realized that my energy was returning. My interest in autism became rekindled, but the fire was gentler, more embers than flame. I am ready again to take interest in autism. Hopefully, I learned important lessons: I intend to be less obsessed and obsessive. I intend to take it slow. I intend to observe myself closely to see if I’m straining, if I am spinning too fast. There is so much to process, to learn, to understand, about life as an autistic adult. It will take more time than ever I expected.
I am autistic. I cannot deny this, I will not deny it. I live with my autism and all that it means and all the ways it affects me and other people. It is the operating system that always works in the background, no matter what application is being used. It is the generator powering the hospital. It is the water moving the water wheel to grind grain.
I am autistic, but I still I want to live fully. I want to create. I want, as best I can, to have relationships with other people. I want to care for the animals that share my home. I want to open more to the mystical world, to the life within life. I want to picture the workings of objects and machines and to fix them. I want to enter soundscapes, to become transparent to music and allow its strands to interweave with my soul. I want to take tea with crows. I want somehow to be useful to other people. I want much. That I am autistic might make my wants, and their expressions, more complicated, but my autism does not prevent me from offering my gifts to the world.
Hopefully, I can take it a bit slower this time around.
