Self-Diagnosing Myself on the Autism Spectrum as an Adult: Where Do I Belong?

Last fall, I came to the realization that I am on the autism spectrum. It was both crushing and eye-opening. Crushing because, how would my life have been easier if I’d had help with things that are most difficult for me? Eye-opening because my entire life to this point suddenly made sense. But now I face a new challenge I know is not unique to me. When self-diagnosing autism as an adult, you may find yourself wondering, “Where do I belong?”

There are adults who have an official diagnosis, some of whom feel that self-diagnosis is invalid.

There are neurotypical adults, who you always loved but felt a disconnect with.

There are adults who have also self-diagnosed, many after their own child(ren) have been diagnosed with autism spectrum disorders. The self-diagnosed seem to be a quieter bunch because we don’t really know where we fit in the mix. Can I say I have autism if I don’t have the diagnosis on paper? I know it to be true — do I need to spend thousands of dollars getting a diagnosis that won’t do me much good on paper because I’m not looking for services?

I have received negative feedback before when I shared my experience as a parent of two children with autism. Maybe I should have disclosed that I, too, have firsthand experience with autism? That I have lived my life behind a metaphoric piece of glass? That I deal with rumination, auditory processing issues, sensory challenges, anxiety, depression and other things? Do I need to disclose this for my voice to be valid? Once again I find myself wondering where I belong.

You’re probably thinking, “Kristin, don’t let it bother you. People say mean things on the internet all the time.” The thing is… logically, I know this. But my brain also works in a way that won’t allow me to let go of things. I still lose sleep thinking about social situations that went wrong in elementary school, middle school, high school, college, etc. I torture myself by repeating them, trying to figure out where I went wrong so I do not make the same social missteps. I script conversations so I can be prepared for next time. I’ll probably be thinking about this for years.

I’ll continue muddling through, making mistakes and trying to learn. Maybe this is just another part of autism — never knowing quite where you fit.

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