Why I Fear Receiving -- or Not Receiving -- an Autism Diagnosis as an Adult


I’m going to admit it. I’m scared.

Not the ever-present anxiety over the world in general, but truly scared. All journeys begin with a single step, and today I took one that felt as heavy as it was important.

Today, I booked myself in for an autism assessment.

What frightens me most? That the diagnosis will come back true, or that I will return to the limbo of undiagnosed symptoms I don’t understand? Both. Autism is a heavy word. It comes with societal connotations of behavioral problems and disability. I will be labeled “high functioning” because I can eat and speak and shower myself without assistance, and overestimated in my ability to function. I struggle daily in the most invisible ways. My life has been a steep learning curve, a constant development of rules and reactions through trial and error. I have tried almost every tactic to fit in with others, even blending myself so far into the background I began to lose the parts of me that are unique and special.

What ability I had to express happiness and anger I smothered in an effort to not be troublesome. I didn’t ask for help because I feared being a burden. I twisted myself into a figure I believed was more acceptable than who I really am. Someone who abided by the numerous and confusing rules.

I pushed myself beyond the limits to appear more social, tolerated situations that caused me distress because I felt too guilty to escape. Agreed to things I did not want, made changes that did not suit me, perfected the art of a still face and body. I have excellent control of myself. I can hold the pieces together until I’m alone, but once I crack there’s no stopping the emotional flood.

I call those “episodes,” a terrifying outburst of uncontrolled crying and screaming into my pillow. I scratch my arms and legs, berate myself for “losing it.” The more I suppress the episodes, the bigger the eventual explosion. Part of me knows I’m in no danger of hurting myself, but the mere fact that my brain shatters like that is scary. I can only hold my “episodes” back if someone may witness the event. I’m scared to be alone. Scared of what my head may throw at me while I’m vulnerable.

So I struggle. And I hurt. Somehow, I have a job. Full time work is exhausting. I have one day off a week (supposedly for “study”) to cope. My lunch breaks I spend in a dark room, eyes closed. This is how I manage. I compare myself to other, more active, people and see myself as a failure. But I can work, I do work. I’m proud to work and I love my job. That’s where my fear of diagnosis comes from: I feel like the autistic / high functioning stereotypes don’t allow for people like me. A high-functioning person is often viewed as not needing help, and the perception of autism in general can be of limitations. But it’s the labels that create limits that shouldn’t exist.

Still, the label is a resolution. The beginning of a new chapter in my life where I am no longer a mystery, no longer a failing neurotypical but a person with a set of specific challenges that are different than those around me. Diagnosis means developing strategies outside of those I created out of necessity. It means assistance in understanding the world around me. It means forgiving myself for needing to sit at my desk with sunglasses, and accepting the “episodes” as a natural and needed release.

I’m scared to say I am one of you, in case I am not. I’m scared of finding out there is nothing about me that validates my struggle with the world. I’m scared I could be a pretender, invalidating every truth that the autism community is trying to express. If that happens to be the case, I am so terribly sorry.

For better or worse, I will have this assessment. I will find out where I fall.

To those of you who are also considering, or worrying about diagnosis: you are not alone. The bravest thing you can do in your life is to begin understanding the complexities of yourself. It’s also the only way to completely understand how you best function in the world, to optimize your strengths and develop your weaknesses.

Both possible outcomes of the assessment are scary for me. They’re also both exciting in their own way.

It’s OK to be scared. You can come be scared with me.

JOIN THE CONVERSATION

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