Elise* ’16 speaks the way most people write—without garden-path syntax, unnecessary repetition, or filler words. Her tone is even and detached, simultaneously emphatic and matter-of-fact. Her lack of facial and auditory expressiveness is common in autistic people and brilliant but abrasive television detectives—but then, I knew what to look for. We didn’t make eye contact.
Like many women with autism, Elise received her diagnosis relatively late in life. She was frank about the process. “It sucked. I always knew something was wrong, or off, and I just thought I was crazy.” This was the first of several points in our interview where I was forced to suppress a powerful urge to babble in sympathy. My own emotional memory ranges from patchy to nonexistent, but I’ve never had any trouble recalling the way I felt the first time I read the words “Asperger’s Syndrome”: recognition, followed by manic, soaring relief.
One of the more prevalent clichés in the autistic community is that if you’ve met one autistic person, you’ve met one autistic person—a counter to the common misconception that our personalities, opinions, symptoms, and capabilities proceed uniformly from our diagnosis. If anything, our shared experience is the experience of being different. (It’s worth noting that my experience is necessarily and drastically limited to those of us with the cognitive and motor skills necessary for mainstream education. Self-awareness requires some liminal relationship with normality.) We grow up with bizarre talents and unexplained skill gaps, intelligent and incapable and out-of-place. Fear, guilt, and self-doubt are as close to universal as anything I’ve ever encountered.
But we are often met with the polite conviction that people like us don’t exist. Yet even among medical professionals, there is a tendency to assume certain attributes are incompatible with an autism diagnosis.
My own emotional memory ranges from patchy to nonexistent, but I’ve never had any trouble recalling the way I felt the first time I read the words “Asperger’s Syndrome.”
Elise started looking for explanations midway through her sophomore year. “The doctor I saw said, ‘Nope, nothing wrong.’ I wasn’t satisfied with that, and I wanted a second opinion.” She seemed to be in a good place to get one: with Yale’s Child Studies Center, New Haven is a strong contender for the autism research capital of the United States. But that’s not to say that Yale-affiliated psychologists are, broadly speaking, equipped to handle the fact that autistic children grow up to be autistic adults. Most doctors wouldn’t even agree to see her. She was too old, too female, and too competent. “One of the reasons for why I couldn’t be autistic was ‘Oh, but you got into Yale,’” Elise told me. Cue sympathy-babble. No one at Yale has reacted to my diagnosis with cruelty, hostility, or even ill intent, but I’d heard the same thing before.
There is no one autistic story. There is no one “attending Yale while autistic” story, and I haven’t tried to write it. According to the Resource Office on Disabilities, there are at least eleven. That’s how many Yale students have registered for academic or housing accommodations. Judy York, the office’s director, told me that the actual number is almost certainly higher. I’ve spoken to three. Two more declined to be interviewed. With such a small sample size, I can’t claim to be dispelling stereotypes about a marginalized, if miniscule, group. This is a call to accuracy, not action.
We are often met with the polite conviction that people like us don’t exist.
I owe my friendship with Joshua* ’15 to unvarnished anthropological self-interest. I’d been at Yale for about three months and had settled into a socially anxious orbit around other Directed Studies students. He was a chronically introverted physics major. I hadn’t yet met another autistic person at Yale. At that point in my life I’d met exactly two, total. Everything I knew about the inside view came from blogs, magazine articles, and the occasional memoir. I consumed them all in bulk, my curiosity driven by lingering pre-diagnostic doubt. (I still have an irrational fear that I’m faking it.) Our social circles overlapped at exactly one point. I asked our mutual friend to arrange a psychiatric blind date.
It went well. We ate quickly and then, in a virtuosic display of conformity to stereotype, lectured each other on the minutiae of our favorite science fiction franchises for almost six hours. Around midnight, we started talking case history. Like me, he also had ADHD, though he was diagnosed as a young child. In high school, they hadn’t believed he had a learning disability—his grades were too good.
That was less of a problem at Yale. The Resource Office on Disabilities offers two services to students with developmental disabilities: note taking, for lecture classes, and extended time on tests. Joshua used both. “The system was incredible,” he told me the last time we spoke. He had only one complaint. Many autistic people have a marked discrepancy between their verbal and quantitative abilities. Joshua, while gifted mathematically, struggles with writing. He described the sustained effort, even for a short paper, as almost physically painful. “I couldn’t take lots of courses I wanted to take and learn things that I thought would be valuable, in philosophy, the humanities, in public policy,” he said. Heavy writing requirements effectively prevented him from accessing much of the Yale curriculum.
According to York, students also have access to tutoring, writing assistance, and waivers on core requirements. This isn’t always conveyed to the students who might need these resources. Not all autistic or developmentally disabled students are registered with the resource office; of those who are (including myself), no one I spoke to had heard of these additional accommodations. Personally, I’ve always found York and the rest of the resource office staff helpful, especially in seeking housing accommodations. For instance, I requested and received a single. Academics are harder. Universities are often less equipped than elementary or high schools to address individual autistic students’ very different needs, if only because the cases they encounter are fewer and less severe. “It seems unfair to call them unhelpful when they’re not really set up to deal with someone like me,” Elise said. Her situation is Joshua’s in reverse: quantitative skills that lag far behind her verbal ability. “The things they’re able to provide are not relevant to me. So I can’t really blame them for that. On the other hand, it was increasingly becoming clear that I had a problem fulfilling my science and math requirements, and they were patently unhelpful in figuring out what to do about it.”
It’s unsettling to think how much of my behavior is adapted from parents and teachers and occupational therapists in an attempted regression to the behavioral mean.
To find a solution for her particular problem, Elise had to bypass the office. After discovering that dyslexic students are allowed to use literature classes in translation to fulfill their foreign language requirement, she petitioned Yale for a similar substitution: she would take writing-based classes in economics as her QRs. “No one knew it was a thing you could do, and I was the first ever to have ever done it,” she said. “There was no institutional support.” Even so, she doesn’t think her autism is an academic liability. “Being an aspie is probably why I’m good at studying. It’s not in spite of it,” she told me. “I’m good at it because my brain works differently.”
Joshua’s worst problems were more social than academic. Though he got good grades, he struggled with social and organizational skills his classmates took for granted. He didn’t know how to socialize in a group, introduce himself to strangers, or ask girls out on dates. “Yale was set up to help me academically,” he told me, “but not in other ways. But I blame myself and my peers for that, more than the University.”
When I was in eighth grade, my classmates were obsessed with a card game called Mau. The gimmick is that new players can’t be told any of the rules—they can only learn by being penalized for breaking them, and new ones are added every round. The whole thing is entertaining for about five minutes, after which you want to strangle the grinning adolescent sadist who invented it. It’s the best analogue I’ve ever come across for trying to have a social life while autistic. The only difference is that, in Mau, you won’t be ostracized for admitting you don’t know how to play.
Joshua is willing to learn the rules. In an ideal world, he said, “people would actively seek me out and strive to include me, would listen to me when I say things.” This admission made him nervous. Few needs are both more basic than companionship, and more impossible to demand of others. Joshua wanted to be part of a community without forcing himself to be the type of person it naturally embraced. “People will accuse me of ‘entitlement’ for most of what I’ve said here. They’re right in that I do think I’m entitled to it. I think everyone is entitled to it.”
Zack Williams ’16, the president of SAAAY (Students for Autism Awareness At Yale), is an expert on the question of autistic behavioral adjustment. His own experience with social skills training had been overwhelmingly positive. That’s why he wants to complete an MD/Ph.D. in neuroscience, specializing in autism treatment. “I don’t like ABA or anything like that,” he said, naming Applied Behavioral Analysis, a common behavioral therapy, widely opposed in the autistic community for its abuse potential and excessive focus on normalization. But he says, “exhibiting an autism-like behavior is going to impair their social functioning.”
“Should we be getting treatment to conform ourselves to society, or should society expand its range of acceptable behavior?”
Behavioral intervention is a divisive issue. Elise, among others, takes the opposing view. “I know there’s a lot of disagreement—Zack and I have this argument all the time. Should we be getting treatment to conform ourselves to society, or should society expand its range of acceptable behavior?” She shook her head. “Maybe it’s because I was diagnosed so late—I’ve been doing all this work, now you guys can do some work and adapt.”
That was when I realized I was making an effort to avoid her eyes. The same thing had happened when I met Joshua. Both times, I’d found myself anxious not to look too normal. After years spent learning body language’s most common dialect, I’d forgotten how to move and act and speak unnaturally—that is to say, like an autistic person. I tend to agree more with Elise, if only because it’s unsettling to think how much of my behavior is adapted from parents and teachers and occupational therapists in an attempted regression to the behavioral mean.
Social skills are always learned, even if most people don’t take notes. It’s harder for me, and I work harder to compensate. But I can choose to socialize with the people who meet me halfway. That gets easier as the world gets bigger. Joshua is happier since graduation from Yale. “It’s a combination of a change in meds, being with people who shared my values, and being more mature,” he said. “Not sure how much of each.” I’m lucky enough to have found close friends at Yale, as are Elise and Zack. “Everything before Yale was a lot worse,” Elise said. “I have a lot more friends now than I did then. A lot of it is we are incredibly nerdy generally. We are a university of nerdy people. I went to a very small high school. There were fifty people over six years. How many nerds is that? Like four.”
After years spent learning body language’s most common dialect, I’d forgotten how to move and act and speak unnaturally–that is to say, like an autistic person.
“Nerdy” is an interesting proxy for autistic. In defiance of taste and popular opinion, some of us don’t even watch Star Trek. But before “nerdy” connoted awkward, persecuted schoolyard intellectualism, it just meant weird—and that’s in the most pejorative sense. (A similar alchemy has affected the word “geek,” which originally referred to a circus performer who bit the heads off live chickens). For all the benefits and drawbacks of our neurotype, the costs and consequences, I’m most defensive of our involuntary idiosyncrasies. Elise said it more concretely: “On the one hand, I made spreadsheets of my toys when I was 7. But how many 7-year-olds know how to make spreadsheets?”
TV autism—think Sherlock Holmes or Spock—is all social isolation and dazzling brilliance, as if the two could balance each other out. In real life, though, neurochemistry doesn’t have to play fair. My autism isn’t a good thing or a bad thing, it’s just me.
* “Joshua” and “Elise” asked that their names and identifying information be changed.