I was diagnosed with autism by a woman named Kaaren who called me a “very bright young woman” despite the fact that I put my pronouns in the first email I sent her. She asked me one question about myself in the four hours I spent in her office. In the diagnostic report, I was labeled as “low on the spectrum”. I was told that I scored just high enough on the masking questionnaire that she felt “comfortable” diagnosing me. This was followed by a strange display of ableism in which she assured me that I was extremely high functioning and I am so good at masking that my autism doesn’t affect me very much. To her, I am almost normal. 

 

I walked into her office pretty confident that this would end in a diagnosis. I was there for a formality, to take advantage of my insurance that covered this whole ordeal so that I might be able to get official accommodations through my school. I had done two months of research and reflection before I arrived at that office. I had written long lists of the reasons that this diagnosis made sense, talked through my entire childhood with my mother, and immersed myself in autistic culture and community. When I walked into her office, I thought I knew what I was getting into. I was expecting some sort of interview, in which I would tell her how irrationally angry I get when I hear repetitive noise, how, for my entire life, I shut down when my schedule is abruptly changed, how I feel like everyone around me has been let in on a secret that I cannot know, and I’ve been living my life trying to hide the fact that I am constantly confused. I was eager to discuss with a professional why I turned to dance so early and how relearning to stim could boost my mental health and help with the anxiety I have dealt with for so long. I wanted to ask about social challenges, and how I can be so extroverted and still have so much social difficulty, and where my autism fits into that. I was expecting a conversation, at the end of which she would confirm my self diagnosis and send me on my way.

 

Instead, I spent four hours taking tests. It was exhausting and over stimulating and pretty obviously inaccessible to autistic folks. She spent the majority of the time in silence while I filled out questionnaires. The only conversation we had besides a verbal math assessment was initiated by me, and was about a question I asked her about social anxiety. I had done extensive research on the social challenges of autism from autistic voices, and found that not all autistic people are introverts. The social challenges of autism are not the same as social anxiety; I thrive around my friends and am energized by the people around me, yet I find it hard to hold conversations. I love socializing, but it drains my mental energy. I feel as though everyone else has a script, and I am pretending to know what I am supposed to say. This is not the same as feeling anxious around people, and there is a distinction there that I felt was necessary for Kaaren to understand. The question on the paper in front of me was asking about my levels of social anxiety. I told her that I am not an introverted person yet I still find socializing more difficult than I think is normal. She asked if it had to do with feeling like I needed a script, I said yes, and she returned to her note-taking silence.

 

This was my first encounter with the limiting narrative of autism that most neurotypical people believe to be true. To them, I am a list of symptoms. I am unnecessary repetitive movement, I am social anxiety, a black and white brain, a need for structure, a lack of self awareness. To them, my autism ends there, and any other part of my being is nonexistent. That, or, they just don’t care enough to want to know more.

 

The interesting thing about this commonly understood list of symptoms is that they are all visible, or almost immediately noticeable to a person in close contact. Our stimming is noticeable, our discomfort in social situations is obvious, and if our routines are interrupted, our reactions are much more intense than expected. The neurotypical gaze looked at this list of visible symptoms and declared us lacking self awareness. If autistic people were consulted in the creation of this narrative, it would be entirely different. 

 

Because “repetitive movements” does not do stimming justice. I stim for regulation, because my world is loud and layered and bright and too fast, and my body absorbs this cacophony of sensory information. The only way to get that energy out of my body is through movement, through repetition, through expansion and rigor and feeling my body move and release. Stimming is a cycle of energy, an exchange between me and the world and it feels incredible to be part of the living breathing ecosystem of energy. 

 

My discomfort in social situations does not feel like anxiety, although I mistook it for that for a very long time. It feels like there are unspoken rules that I cannot and will never understand. It feels like I am conversing in a language that was not built for me. 

 

And since this universe has networks of rules and expectations that have never made sense to me, my routines are ways that I can control little things in my life, rules that I can understand. In a world where I don’t fit, I make ways for myself to fit. When my routines are interrupted, it feels like a loss of control in the one part of my life that feels entirely safe, and I shut down. 

 

And so this list of symptoms minimizes experience, leaves out sensation, and boils everything down to what is “abnormal” or inconvenient. This is also a generalized list of symptoms that is required for diagnosis. Therefore, to be professionally diagnosed, we have to fit yet another confusing expectation and be what a neurotypical person thinks an autistic person should look like. 

 

My autistic self is not a list of symptoms. It is not always visible. I am not a specimen to be understood on neurotypical terms. My autistic self is not separate from me, it is not a deficit, it is not a disease. My autism is my entire being, it is how I experience and interact with the world. 

 

Kaaren told me that I am “low on the spectrum”, closer to neurotypical than autistic. Here, she is simply wrong. I am not on a spectrum where neurotypical is even an option. And yes, Kaaren, my autism does have a massive effect on me because it is who I am. I do not need your assurance that I am as close to normal as an autistic person can get because I, unlike you, am not afraid of my autistic self. 

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