“But you don’t look autistic,” a new friend told me recently when I revealed my diagnosis. I could tell from his tone that he meant it as a compliment—his tone wasn’t accusatory so much as reassuring. It was as if he were trying to tell me that I could still find nourishing friendships “anyway,” or at least that our budding one wasn’t threatened.
Because this was not the first time I’d been told that I “don’t look autistic,” I had a response ready: “And what is it that you think autistic people look like?” He froze.
I am autistic: My official diagnosis is Asperger’s, or what is now Autism Spectrum Disorder (ASD). I actually prefer the phrasing he used: “But you don’t look autistic” uses “identity-first” language (“I am autistic”), as opposed to “person-first” language (“I am a person with autism/who has autism”). So he had correctly identified me, even done it in the way I like to identify myself—and then told me I didn’t fit in with those I consider my people.
But ASD is not some oppressive overlay of my “real” personality. My diagnosis means that I fall outside certain bell curves for things like eye contact, needs for structure and routine, social engagement, rigid thinking patterns, and defaulting to literal interpretation, to name a few. These traits are not always immediately visible to the observer, and others have said it—“You don’t look autistic”—with suspicion, as if I look too “well,” too “normal,” too not-autistic to actually be autistic. Somehow I need to prove, with my physical appearance or behavior, that I really am what I say I am.