What Does it Mean to ‘Look Autistic?’March 29, 2016
“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.
Of course, I didn’t “look autistic” enough for anyone in my youth to catch on. Not even my mother, who taught special education for close to three decades, or the therapist who saw me regularly throughout my formative years. I “passed” as neurotypical until I was 28—long enough, in other words, to learn how to contort myself into someone who fit in. On some level, though, it is difficult to fault the people whose care I was under for not noticing sooner: It’s a widely held belief that autism is much more common in boys than girls. This often translates to screening boys more carefully for autism than girls, and misdiagnosing girls with something else—obsessive-compulsive disorder, borderline personality disorder, depression, anxiety.
By the time I got to high school, I was indeed depressed and anxious, unable to interact socially without sweaty, shaking hands. And high-school girls are especially unforgiving of what I came to think of as my relational “failings”—my inability to produce small talk, my struggle to maintain eye contact, my uncertainty about how many details to include when someone asks me how my day is. Because I don’t naturally intuit cultural expectations for socially normative behavior, I had to frantically learn to mimic how I saw others relating to one another—which not only confused me, but likely made me seem robotic and stiff to the people I was trying to connect with. And those connections, even when they happened on a surface level, never felt real to me: It is impossible to metabolize the love people may genuinely be offering if the person they’re offering it to is actually a façade.
I’ve hungered for deep, meaningful connection with other people for as long as I can remember. I’ve known I was different for almost as long. Being aware of the dissimilarities between me and my peers didn’t make things any easier—the awareness made me hyper-vigilant about appearing “normal,” and so all the more anxious. By age 5, I had begun a high-level construction project, creating a new outward-facing version of myself to fit with the social norms I perceived. These contortions, as involuntary as they came to be, never felt natural. I always knew I was hiding, but did not know how obvious that was to others; I can only look out into the world autistically.
I didn’t know that what meticulously maintained masquerade was really about “not looking autistic.” Or that I would be so literally following the “therapeutic” advice of my childhood therapist: “Fake it till you make it.”
What qualifies as “making it,” though? If I don’t “look autistic” enough, people might think I’m a fraud, and I might not qualify for services designed to support me. My need for structure and routine might be seen as “controlling,” my meltdowns (not to be conflated with “tantrums”) merely the mark of immaturity.
If I do “look autistic,” though, would my anger be brushed off as “just the autism talking?” Would my meltdowns “allowed” the way a child’s acting-out would be—tolerated, but not engaged with? When I am so overcome with emotion that I cannot speak, it is called “selective mutism.” When I find joy in something seemingly incongruous with my age, gender or peer group, like trains or circuits, and get engrossed in it long enough to become a veritable expert, it’s called “restricted interests” or “fixations.”
The perspectives I have on people and the world I’ve interacted with thus far in my life are necessarily informed by my ASD, whether it looks like I’m an Aspie or not. Ultimately, when my friend told me I don’t look autistic, he was essentially affirming my constructed normalcy, my ability to fake it. In high school, I would have relished in this aptitude to appear “same,” and would have taken his remark as a compliment. But I’ve come to realize that each attempts to somehow make myself more “acceptable” to someone else, more lovable, has left me with what is, in the end, a false connection. I don’t want to be judged based on my ASD alone, but nor do I want it to not matter. I may not “look autistic” from the outside, but if you see with my eyes, I do.