I Don’t Believe in Autism

Anders Lee
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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.

35 COMMENTS

  1. Thanks. Good article. I have thought about this a lot as what is called the autism spectrum seems to keep including more and more things, many of which seem in opposite ends of a spectrum. Like everything that is either highly sensitive OR highly insensitive to anything can be considered on the spectrum.

    I used to think I was the opposite of autistic, as I tend to be hyper aware of other people, hyper sensitive to surroundings. But now those traits are also discussed as being on the autistic spectrum.

    I think if the label helps someone get services and accommodations, then it has a use but I definitely don’t know what people are referring to when they identify as autistic
    as it seems to encompass people with both very high and very low levels of different types of sensitivities.

    • Often it leads to discrimination and psych drugs.

      25 years of psychiatric drugging has made me more “autistic” in my behaviors than before. Public rejection and TBI. All my life I have struggled to look “normal.” To this day I’d sacrifice my eye teeth to fit in and be like those around me.

      Being yelled at as a kid for “being weird all the time” by my mom only increased my awkwardness. Ever tried focusing on NOT being weird in your pubic interactions? Great way to drive yourself nuts. 😀

  2. First, everyone’s autism is different, but by the conclusion, your experience and some things you’ve read online are proof enough to negate the entire idea of autism. Awfully convenient that the experience of those whose autism is severe enough that they will never read this article is not even considered.
    My son cannot speak in sentences and cannot care for himself. He is sweet and happy but will probably need lifelong care. He has made little progress in almost 10 years of excellent care and therapies. What helped you? What made a difference?

    • My condolences. Your son no doubt has a learning disability, but it sounds so different from Anders’ experience that lumping them into the same category is doing both a disservice.

      As Dr. Breggin has said the human brain is the biggest mystery in the known universe. Precious little is known about it.

      Have you seen the short documentary “Autism is a World”? The young woman in that can’t talk but communicates through a machine like that Steven Hawkings used.

  3. Thanks for this Anders. I found new and interesting facts from your writing.
    It would be really interesting to do a blog with a timeline graphic from the start of the first diagnosing to now. There has been so much changing. When I started becoming aware my view was that this was a DD issues and this persisted with PDD . There also was a book Son Rise by Barry Kaufman and I had heard stories of total transformations. I would also like to see environmental toxins and other data in the timeline. Rachel Carson, I think only touched the top of the iceberg.
    Global info too!
    Then there is the whole yes sensory integration issue The Spirited Child was a big book in the day.
    Artists of all ills have that and in some places I have heard we are all in the spectrum.
    Also allergies and asthma. Both issues especially in urban areas.
    And just for the heck of it – there used to be cancer islands- folks would go house to house and ask and some were found and there is the public health issue in Victorian England about disease and water wells.
    There is so much and I am sure at times I have or fall into the spectrum for what it is worth- not much.
    The big issue here is school. To get help you need to get labeled.
    If every child had an IEP – change and the money to execute education like those who are truly privileged.

  4. In 2005, prior to researching into the DSM and psychopharmacology, as I was driving down to see a concert in Chicago with some friends. We passed a car with one of those autism bumper stickers on it. I knew in my gut at that moment, that autism was not a real disease. I don’t believe in autism either, but I no longer believe in any of the DSM disorders, they’re all nothing but scientifically “invalid” stigmatizations. An unfortunately legal way to defame innocent people. Glad you’re doing well now, Anders, thanks for sharing your story.

  5. I have also language intelligence. I have also language awarness like James Hillman.

    Psychiatric language is not human. Diagnosis is only a mark on a psychological map, or it should be if we have human attitude toward psychological reality.But we have not, we have empty nominalism, false empiricism, empty judgements without roots. We talk about psyche as if she was deprived of beauty. Psychiatric language is a destroyer of the worlds.

    We should have a phenomenological attitude and then diagnosis would be only a human description of the psychological archetype/style of thinking. But now, we have some fake medical illnesses, demonization or theological negation, and we think that apollonian ego is in the center of the psyche. Psyche needs Copernicus and Luther King in one person. We need political defenders.

    I can only recommend James Hillman “Re – visioning psychology”, and his vision of psyche. This is my cure. This cure is a cure of the psychiatric language, because that language needs to be healed. Psyche is psyche, and apollonian ego wants to destroy psychological reality and create false biological model of psyche.

    Monoteism/purism/theology, medical language, or apollonian ego perspective, are not the proper ways to describe psyche.

    Thank you for an important article.

  6. Thanks Anders for an interesting and inspiring article. As humans each of us are unique but being different brings diversity and creates more meaningful experiences in life. I’m so glad to hear things are going better and daily challenges are easier to handle. Wishing you all the best!

  7. As someone with OCD ( which is on the spectrum) I think denying that there is a problem that exists in objective reality ( not being able to function within parameters of self and group help which are basically one and the same) is philosophically idealistic , conformist, bourgeois, existentialist and exploitative . At the same time , tolerance IS most definitely the key to overcoming as intolerance is the CAUSE not the EFFECT . Alienation from the products we make causes an aire of conformity that disguises itself in a veneer of non -conformity : there is no I in TEAM ! Instead of being in a natural reciprocal voluntary help human collective , a body is on a ship of slaves with enforced solitude . This causes stress / dysfunction . That dysfunction is then exploited , the” special needs ” person working for minimum wage as a sacker at Walmart. ” Rudolph with your nose so bright , won’t you guide my sleigh tonight ?” Then ” tolerance ” becomes exploitation . Instead we should strive for a natural reciprocal voluntary help human collective, the likes of which Che Guevara talked of, where help is OFFERED not FORCED .

  8. Finally someone else has read Edith Sheffer’s Asperger’s Children. It is the definitive book on the topic of so-called “Autism.” If you haven’t read this book, there is no way of understanding what “Autism” might even mean. The truth is that “Autism,” like “Schizophrenia,” is a myth… a very dangerous and destructive myth.

    What? Autism a myth? Yes. It’s time for this myth to be dispelled: https://psychiatricsurvivors.wordpress.com/2018/09/02/the-myth-of-autism/

    • Dragon Slayer what would you say to parents like MellowMack? What about those classified as “autistic” who can’t talk or take care of basic needs for themselves?

      Some of us can call ourselves socially awkward or eccentric but others have real problems learning and holding down jobs. How do you explain that?

        • So Edith Sheffer addresses the “severe cases”? I guess I will read the book.

          My BFFL is an educator and has been encouraging me to get diagnosed with autism. She believes it will automatically cancel out my “bipolar” label. But that goes contrary to what I see.

          Even if it were valid I don’t need another XXXX label! People are cruel and hateful to everyone the least bit different. All you have to do is wear ugly paisley slacks, bite your nails too much, talk too much or too little, not be organized 100% of the time, or say something clever/creative. Bingo! You’re crazy and worse than Jeffrey Damer with leprosy in the eyes of the “Normals” who act, dress, and talk like everyone else.

        • For Dragon Slayer or anyone else, what books do you recommend for learning the history of modern psychiatry? RW’s books are great but focus primarily on modern Pharma-psychiatry in the last 30-50 years.

          From my readings “asylums” began as an industry around the time of the Age of Reason and the Industrial Revolution. I think the former played a really big role in the obsession with the sane vs insane dichotomy of “mental health.”

          • Rachel, look for a book called “Out of Bedlam”. It’s a good, well-researched history of “deinstitutionalization”, but the author basically ignores most of what we here at MiA know to be true, and she also ignores any serious discussion of psych drugs. But it’s still very interesting, helpful, and useful….
            Also, look for “A Few Buttons Missing”, written by a psychiatrist, and a professional co-writer. I just now easily found it on amazon…. The quack shrink is named Fisher, and it was published in 1951. When you read it, consider the author’s discussion of his childhood, through the lens of what we know NOW about trauma, parental abandonment, and “ACE’s”(adverse childhood experiences)….

      • Rachel. Psychological man is not someone for sale. Those people are psychologically beyond material reality. They are supposed to not cope.

        The problem is that apollonian ego does not cope with that fact, that psychological man is not someone who is born to cope.

        They are representing psychological reality. Those kids are like gods. Utility is not their aim. We need to accept psychological hierarchy, autistics are on the highest position. But apollonian ego/simple materialists cannot cope with the fact that our usefulness is something important only for MONEY REALITY, not for psychological reality. That is why we need psychological socialism. Psyche as a greatest value.

        Materialism, utility are the lowest form of psychological meaning.
        I know that one day they will see those kids as a form of secular gods.

        This is my agenda. Psychological titanism is also my invention.
        Titans. We should remember about that word, it describes psychological work of ego. Materialists are materialists, psychological man is psychological man, and he means more than material function.

        Materialism is not enough to build a human state, now we have a camp for biological machines. It is not enough for psyche, so I invented more than utility —–psychological aesthetics to which belongs schizophrenia and autism.

        Actually, James Hillman is the only one defender of psychological meaning.

        • Autism and schizophrenia are like Jackson Pollock’s paintings.
          You cannot use it, you cannot cure it, just because you do not understand the vision. You can only admire the form of expression.
          The aesthetics is what we need. Autism and schizophrenia means more than apollonian ego simple material reality, so they are being destroyed by apollonians.

          Those who are being destroyed today, are gods of the tomorrow.

          • We do not need psychiatry. We need people who will love psyche more than anything. We need psychological socialism. We need to abolish ego. We also need the children to read Hillman’s books in school.

            Because children should know that psychiatry is a false prophet and human psyche is real.

      • Having a problem caring for oneself or holding down a job is an extremely contingent and regionally-, time-, and culturally-specific (read, random!) thing. It can’t serve as an objective measure of any sort. What it takes to hold down a job is changing rapidly, even in one place, time and culture. So someone meeting or not meeting this bar can’t be used to “prove” anything about the “real” presence of a “real” disorder.

    • Thanks for this link DS, as I did not know the origins regarding the invention of Autism. As I read this review on Edith Sheffer’s book I really felt like crying for the children who were discarded as “waste”.
      It falls right in line with the rest of psychiatry’s other invented and harmful diagnoses that paint people as damaged and hopeless.

      But I certainly feel the pain of parents like MellowMack and ask the same questions as Rachel777….What to say to these parents and how can this be explained?

  9. Thank you for sharing your story Anders. I really enjoyed and appreciate your articulation of the nuanced contradictions between diagnosis and ones evolving life at the various intersections. You point out so well the various failure between diagnosis and ones developmental life, and in the process-rather nicely, put a spotlight on the utility of diagnosis: for whom does it best serve? You seem to have taken and the diagnosis of autism, wrestled with it personally and socially, and turned it into your own creation. Bravo!

  10. Smart article.

    My real beef with “neurodiversity” is the “neuro-” prefix. There is absoliutely no reason to believe that there is anything “neuro” going on, that is, something in the brain. Same as psychiatric issues. There is no reason to believe that anything “neuro” or in the brain is going on with someone who hears voices or has visions, wants to die, or whatever. This is a BIG problem for neurodiversity advocates who want to create a worldview in which some of us “have” “special/different” brains or neurology, and some don’t. It’s not tenable. It’s not real.

    • You’re right. It’s not helpful MM. NAMI has been trying the “Be nice to us; we’re different” for years. Of course with NAMI it’s more like, “Please don’t hate us because we’re defective. If we swallow all these gosh awful pills we’re almost safe to be around.”

      The Mad Pride or Neuro-diversity movement tries to put a positive spin on Crazy but the notions of life long madness can never be viewed as a positive. And Kay Redfield Jamison and others have sort of been trying to prove that because an occasional “mad genius” emerges maybe society shouldn’t ostracize some members for crimes they never actually committed.