It was only about a year ago that I became comfortable telling people that I received an autistic spectrum diagnosis as a child. I try to be careful about the phrasing. I don’t say that “I am autistic” or that I “have autism,” I just stick to the facts. That was the way I was classified over twenty years ago. What it says about me as an adult, I don’t really know.
The admission can be polarizing. Many friends and acquaintances are not surprised at all, especially the ones who I grew up with. They remember my social ineptitude and monotone speech, my unkempt hair and aversion to fashion tips, my intense vitamin regimen, love of computer solitaire, my struggles with school and following basic instructions, perpetual virginity, my strange obsessions with unusual topics—the 1996 presidential election, the city of Cincinnati. To them, the “autism” designation gives coherence to all these different aspects of Anders.
To others, this is a total surprise. My adult self simply does not match their conception of what “autism” is. I don’t remind them of the other people they’ve known to be “on the spectrum.” The suggestion that I, a friendly, eye-contact-making, bearded Bushwick dude could be “autistic” comes across as unexpected at best, dishonest at worst. “You don’t have Autism” some say in an encouraging tone as a gesture of support. To them I am a victim of misdiagnosis. But to others, this is an inauthentic claim to marginality, a pathetic grab at sympathy to compensate for my straight, white maleness. As one friend put it, for me to identify as “autistic” is tantamount to me calling myself the N-word. To her, I am the autistic spectrum’s Rachel Dolezal.
The explanation that autism is something that I simply “grew out of” could be a satisfactory one, and it’s a suggestion that at least one doctor has made. In my early twenties, I remember checking in with a naturopath I saw as an adolescent. It had been a few years since our last visit. I was in much better spirits than the shy, mumbly boy she remembered. “Wow, the vitamins must be working,” she said. “I’m not sensing that you have any autism at all anymore.” Even as a young adult, the A-word was still my biggest point of shame. So hearing this was music to my newly normal ears.
The popular understanding of autism is changing, but the notion that it is a disease or disability still persists. I received a few different diagnoses as a child. There was “pervasive developmental disorder–not otherwise specified” which explained my hand-flapping and poor fine motor skills. Another was “sensory integration dysfunction,” which accounted for my clumsiness and love of close contact with the big, red yoga ball I would bounce on every night for hours. Then there was the most vaguely worded of all, “nonverbal learning disability,” which in my case was meant to indicate a large discrepancy between my higher than average verbal IQ (which measures language-based intelligence) and my below average performance IQ (which measures spatial intelligence). Most of these fall under the autistic spectrum umbrella. But what is it that unites these characteristics to put them on that same spectrum? A spectrum that somehow linked me, as a seven year old who couldn’t add and subtract, to a mathematical genius like Dustin Hoffman’s Rain Man?
The truth is that autism has no essential quality. A saying I heard recently puts it well: “If you have met one autistic person, you have met one autistic person.” It’s not out of the ordinary for two people both diagnosed with the same variant of autistic spectrum disorder to have nothing in common whatsoever. Autism diagnoses are based on behavior. Doctors don’t reach them by measuring your medulla oblongata or testing the chemicals in your bloodstream. They do it by asking questions. “Do you like tight or loose-fitting clothing?” “What are your hobbies?” “How many friends do you have?” If enough of your answers track with what your doctor considers autism, then you are autistic. The terms of diagnosis are not objective.
The first recorded use of “autism” was in 1911, by the Swiss psychiatrist Eugen Bleuler, who named it after the Greek word autos, meaning “self.” He thought autism was itself part of another controversial spectrum he had also introduced to the world: schizophrenia. Like many medical scholars of his era, Bleuler was a eugenicist. He believed in sterilizing people who had been diagnosed with schizophrenia. Without this measure, he argued in his Textbook of Psychiatry, “our race must rapidly deteriorate.”
This line of thinking went on to inform Hans Asperger, whose last name went on to become an indelible part of development psychology, as well as fodder for bullies around the English-speaking world. Asperger is remembered by many as a hero of sorts; someone who went to great lengths to protect his brilliant but vulnerable patients from the Nazis. As the historian Edith Sheffer documents in her new book, Asperger’s Children, this depiction is more than a little generous.
It wasn’t until 1981, a year after Dr. Asperger’s death, that the term “Asperger’s Syndrome” was introduced to the world. The condition that would later bear his name was originally coined by Hans Asperger as “autistic psychopathy.” A psychopath, to Asperger, was someone who lacked a specific kind of “social feeling” the Germans called “gemut.” Like Jews, Queer people and Communists, the “autistic psychopaths” were seen as something other than human. Far from the awkward but brilliant Silicon Valley programmers we now valorize as “Aspies,” the psychopaths Asperger described were “mentally retarded people” with “crackpot interests,” who, without intervention, would “roam the streets… grotesque and dilapidated, talking loudly to themselves or unconcernedly to passers-by.” It’s true that some of Asperger’s patients were “cured,” once they demonstrated their usefulness to greater Germany. But others were not so lucky.
Although he was complicit in genocide, Asperger transitioned back into medical practice quite smoothly after the war. He had never formally joined the Nazi party, perhaps on principle, or perhaps as a shield against the prospect of prosecution. His research on autism more or less ceased as the ideas of Holocaust survivor Bruno Bettleheim became standardized. Later exposed as lacking scientific credentials, Bettleheim argued that autism was a product of nurture rather than nature. The notion of autism that Bettleheim popularized was more severe than what Asperger described. Asperger’s psychopaths could communicate clearly; they were just recalcitrant. But Bettleheim’s subjects were often mute. The cause of their condition, Bettleheim argued, was emotionally withholding parents or, as he called them, “refrigerator mothers.”
One should be careful not to overlook the real contributions doctors and scientists have made to improving the lives of those who struggle with mental health. But we can still acknowledge the extent to which labels falling under the “mental illness” umbrella have been used as mechanisms for social control. In the early 20th century, “criminality” was seen as a detectable medical phenomenon, and it wasn’t uncommon for women to be treated for “female hysteria.” “Ego-dystonic homosexuality” wasn’t removed from the Diagnostic and Statistical Manual for Mental Disorders until 1987, and gay conversion therapy is still practiced in most countries around the world. With this history in mind, it may be the case that future generations will see the autism diagnosis as a relic of a different time.
In 2013, both Asperger’s and PDD-NOS (my diagnosis) were taken out of the DSM and replaced with the more general “autistic spectrum disorder.” Yet, Asperger’s legacy remains with us. The diagnosis is still widespread throughout Europe and, even in the U.S where we no longer use it, many people self-identify as Aspies. Autism is still perceived as a primarily male phenomenon, which can be traced back to Asperger’s scholarship. Autism, in his view, was an “excess of masculinity” so women, by definition, could not have it. The women sent to his clinic that exhibited autism-like symptoms, he explained away as having “hormonal issues.”
The conversation about what truly constitutes “autism” is an ongoing one. Although I resist the label personally, I do not begrudge anyone for identifying as autistic, or seeking out an autism diagnosis. In countries with universal healthcare, that diagnosis gives people access to resources they would not receive otherwise. But in other places like the United States, “autism” is considered a “pre-existing condition” and, before the Affordable Care Act, was used to deny people insurance. Leaving this discussion within the domain of medicine is limiting. That’s why a new discourse is emerging, not among doctors, but among activists who push for autistic self-advocacy. They call their framework “neurodiversity.”
Those who struggle with sensory and/or mental health issues should have a right to quality healthcare. But that doesn’t mean there’s something about them that needs to be fixed. Rather than turning personality quirks and cognitive difference into “disorders,” neurodiversity recognizes that the real problem is intolerance. People should be free to flap their hands, twitch their heads, obsess over traffic lights and avoid high sensory environments without judgment. When someone struggles with social cues or subtext, you shouldn’t need to know their medical history in order to treat them with patience and empathy.
Although I think “neurodiversity” is an important step forward, I am hesitant to endorse the “neurodiverse” as a specific identity group. Before doing so, we would have to reconcile what it truly means to be “neurotypical.” A ‘neurotypical’ is someone who, ostensibly, has little to no problems with school, work, cognition or socializing. That type of profile, I would argue, is not very typical at all. I’ve already seen rhetoric suggesting that, try as they might, a ‘Neurotypical’ will never understand what it’s like to be ‘Neurodiverse’, and to claim otherwise is a form of bigotry. Where people like me are supposed to fit within this binary is a little less clear.
I’ve read accounts online of people (mostly men) who identify with the autistic spectrum, but are unable to receive a diagnosis like mine, and truly be considered as such. Although I can claim disadvantage where they can’t, the lives they describe seem, in many ways, more difficult than my own. They have trouble forming social relationships, be they romantic, or just a friend to go to the movies with. Many of them never finished college, or sometimes high school—they had trouble paying attention, they liked learning, but not in the right way. They have trouble holding jobs, they’re addicted to video games. They’re poor, they’re overstimulated, they’re anxious, they’re depressed. Naturally, they want answers. They’d like to know why life is like this for them. What it is about their minds that’s just off. But rather than pose these questions outwardly—at the economic system that oversees their precarity, the gender dynamic that trains them to coax women into submission—instead they look inwards, at their own perceived dysfunction.
Before her death in 2014, Lorna Wing, the psychiatrist who introduced “Asperger’s Syndrome” into the medical lexicon, said this was something she wound up regretting. She said she wanted to throw away the Asperger’s diagnosis, along with all other labels, and “move to the dimensional approach. Labels don’t mean anything, because you get such a wide variety of profiles.” One of the biggest obstacles to fully understanding neurodiversity, and getting to know patients as individuals, are these diagnoses that we’ve relied on for so long.
I look back now at how nervous I was a year ago about letting people in on this aspect of myself, and it seems silly. I can talk about it freely now—with friends, with people I’ve just met, on a stage in front of people I will never see again. I can look at it objectively, I can make fun of it, I can move on to another topic in my words and thoughts. But there are still moments when the autism can act up again. By autism, I don’t mean any physical condition. I mean a specter from the past looming back over me. I’ll be running late, I’ll lose my keys, I’ll say something awkward at a party. Sweat will gather on my palms as I swear at myself, still convinced deep down that these are not banal, everyday mistakes but marks of a defective human. Sometimes I’m able to stop, breathe and talk myself out of it. That used to be a lot harder to do. What helps most now is knowing that the word “autism,” like so many other words, doesn’t have to mean any more than we want it to.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.