Monday, April 22, 2013

We've All Got Our Something

Emily Willingham

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

What does it mean to be neurotypical or not?

Someone told me via email that I seem to be "demand(ing) all the trappings of neurotypical privilege" in public while saying that I'm not neurotypical, and I'm wondering about many aspects of it. First, I'll establish that I am what I say I am. That means that I'm a scientist, writer, editor, mother, life partner, and friend. There are adjectives to describe me, as well, but that's a longer list, and I'll avoid both the embarrassment and the indulgence.

What I do know is that I've spent a lifetime being anything but neurotypical (I'm still not sure what that is), and I think I've made at least that much clear. As a woman--what the parsers of Victorian literature would probably call the "odd woman" -- I have had my share of negative experiences related to how my brain works and my behavior, so it's odd to me that someone would describe me as "demanding" the "trappings of neurotypical privilege" in public. I've never demanded any such thing, nor, to my recollection, have I ever experienced them, whatever they are. In my mind, my experiences have been a long string of social learnings, beginning from when I was very young and continuing to today.

I didn't coalesce my feeling of oddity into an identifiable unit until I was in my 30s, but I was aware of not fitting in at least from first grade on, which was easy because my peers made me very aware of it. My social ineptitude and blindness led to considerable childhood misery that included suicidal ideation from a very young age and repeated sentimental listenings of Simon and Garfunkel's "I Am a Rock." As is common with people having my social incapacities, I found myself by junior high in a group of hooligans, struggling to fit in with them because the people who were more like me in other ways -- grades, socioeconomics -- would have nothing to do with me. The hooligans didn't like me much, either, and my greatest triumph from that experience is that I never ended up in juvy.

My parents, in a hyperreaction to get me away from the hooligans and the limited schooling options of my hometown, opted to send me to boarding school my freshman year, when I was 13. A very emotionally immature 13. My 13-year-old self was a mass of contradictions, like most 13-year-olds, but I was even more extreme, unable to read people, unable to tell when they were mocking me until it was too late, subject to some of the most extreme 24-7 bullying imaginable. I wandered alone in the wilds behind the school, read books I liked instead of doing my homework, and once again fell in with a group that could never be described as well behaved. And underwent systematic, methodically cruel mental and emotional torture from the girls around me. Dickens could have written my life in those 9 months and it wouldn't have been hyperbole, but the thrashings would have been mental, rather than physical.

That boarding school year sounds like a mistake, but in hindsight, I think it might have been the best thing for a girl like me. What better way for an inept to learn about social interactions among my peers than to be immersed in those interactions every hour of every day? Was I good at it? Nope. But I came out of those 9 months with an arsenal of information about how people my age thought and behaved, what drove their interactions with each other and with me, how to function among them. I'd learned that my way of association was to use social algorithms, the if-then constructs of small-talk social exchanges that I still use today. It has been immensely useful to me, and I still think of those girls in that school and how much they taught me, often by being mocking and cruel, but the lessons remain good ones.

Indeed, today, I'm so stuck in my algorithms that I'll proceed with one even if the other person's taken it off into a different algorithm. My most common error is to enter into the "How are you?" "I am fine, how are you?" exchange, assuming that the responder will provide that "how are you?" question in return. Even if they don't, I'll still respond, "Oh, I'm fine." I've never been able to tell if people notice it or find it odd, but I do this one all the time. I'm stuck in my ways now, and I can't seem to get a pause inserted into that one to make sure the question gets asked.

I still collect my algorithms, watching people exchange small talk, picking up tips and adding in bits and pieces to existing ones, but for some reason, that oldest of algorithms is one I can't modify for specific situations. If we're past small talk, I'm just genuinely Me, doing one of two things: listening sincerely and intently (which I do a lot) or talking too much, probably being overly loud or overly enthusiastic or swearing a lot. But those more superficial exchanges that come from a place of social niceties rather than being born from the gut? Algorithms.

Another problem for me is reading faces. I can remember faces better than just about anyone I know. If I haven't seen you for 20 years, I'll still probably recognize who you are and link your name and face. I can identify the most obscure actor in a movie and list that actor's previous film and television credits. But if I say something to you that's offensive, subtle facial expressions and body language -- especially passive-aggressive behaviors -- in response will go right over my head. I will not know I've offended unless you tell me. Then, I'll feel bad. Very bad. And I'll apologize. If a person laughs with gusto or expresses what they're thinking in honest words, I'm all good, but those subtle or passive-aggressive behaviors? I miss their implications entirely. My life history is littered with such overlooked passive messaging, and I sometimes laugh at my idiocy when I think about cues like these that I've missed. We're all dumb about something, aren't we?

People have commented to me about my behaviors throughout my life. I've got a decades-long reputation for being blunt. People say things like, "Why don't you tell us what you really think, Emily?" I've blurted out some honest observation at the wrong time and put my metaphorical foot in it. My friends and family know how I feel about hugs (and no, I don't think it's funny if someone knows that about me and then gives me a big, long bear hug. Not funny at all). And I've heard about my flat affect, including from total strangers who drive me up the wall by saying, "Smile! It can't be that bad!" when all I'm doing is walking through the mall. Which, by the way, is kind of that bad, but that's not why I'm not smiling. I won't even get started on my feelings about crowds, lights, noise, or Costco.

Then one day, shortly after I started my postdoc in my mid-30s, a resident who was doing research in the lab met me for the first time. I was in a state of high excitement because I'd just had a hilarious exchange with a postdoc from Brazil who was saying the word "urine" to me in Portuguese and somehow, I couldn't understand the cognate. So he and I were rather hysterical by the time she showed up, having finally understood each other. I tend to get sort of ... edgy looking ... when in the midst of high hilarity. She took one look at me and said, "Hmmm. There's something here, isn't there. You've got something. What is it? ADHD? Something." I must have had that look in my eye, that slightly manic laugh over the word "urina," and she picked up on it immediately. She, of course, must have had a "little something," too, as that was pretty much the first thing she said to me. But her comment was like the proverbial lightbulb in my mind and brought my lifetime of social experience into that light, experiences that now took shape as Something. I've never sought to have my Something named. It was simply useful and somewhat of a relief to know that it was there, recognizable for people paying attention.

In the end, we all have "a little something." Some of us have more Something than others. I don't know what the privileges are of someone who's less Something and more Neurotypical because I've never been that way. Thirty or even forty years ago, I might have benefited from having my "something" labeled, maybe, if people had understood the label and used it to understand me. We use our sons' labels to understand them and as shorthand for the world, and we advocate for them and their future in part on behalf of those labels. Labels are relevant to me but not as important as generalized perspective taking and embracing neurodiversity in all of its forms.

As for me today? The labels I use are the ones that fit my current roles: scientist, writer, editor, mother, life partner, and friend. Considering my past, considering my social struggles and my presentation as the Odd Woman, my ability to bear each of those labels is an enormous privilege to me. And that is something.

Previously published at