Content warning: This post contains a discussion of sexism, racism, and eugenics within autism research and advocacy
I’m a weirdo. That’s what everyone says. Sometimes, I don’t know what people mean when they say things, and that can make me feel alone even when there are other people in the room. And all I can do is sit and twiddle, which is what I call my self-stimulatory behavior, when I flick a pencil against a rubber band at a certain frequency and think about all the things that I could never do, like research penguins in Antarctica or have a girlfriend. I don’t know. I’d like to go to Antarctica. It’s quiet there…except in the rookeries, where the penguins breed. [chuckles] Those aren’t quiet. No, sir. I’m finished with my answer. [full transcript]
This is the opening monologue of the Netflix show Atypical. It is delivered by the main character, an autistic teenager, Sam Gardener, who is unusually fascinated with Antarctica. The monologue, the viewer comes to find, is in response to a question delivered by his therapist.
I recall watching this scene for the first time and feeling instantly connected to Sam. The similarities were apparent from the start. I have my own version of twiddling, or stimming, which is usually leg bouncing. I remember as a child and teenager that I frequently bounced my leg under the table during family dinners. It would rattle the dishes, which my mother would gently comment on, and I would stop. I’m bouncing both legs while I write this. In addition, my answers to my therapist’s questions sound a lot like Sam’s: extremely thorough, and often punctuated with something like “I’m finished with my answer”. I bring my own interests and preoccupations into the session, even when they might seem tangential. For Sam, that’s Antarctica, and, for me, it’s social theory.
When I first saw Atypical, I did not know that I was autistic. I was (and still am) seeing a therapist for posttraumatic stress disorder, which co-occurs in most autistic people. After I watched several episodes, keeping detailed mental notes of the similarities between Sam and me, I googled “What is autism?” The first result was a webpage by Autism Speaks, an organization that, at the time, I only vaguely recognized as a major charity-advocacy organization. I read their description of what autism is:
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated 1 in 44 children in the United States today.
When I turned to Autism Speaks to tell me what autism is, I got an answer that placed “social skills” front and center. Although I knew that social interaction was often problematic for me, I did not feel it was because I lacked “social skills”. The phrase – social skills – struck me as an unhelpful and vacuous appeal to normativity, and still does. I knew, and still know, that I’m an exceptionally strong communicator. Thus, I dismissed the possibility that I was autistic, and I repeated this same process of searching for information and finding unsatisfactory answers a few more times. I didn’t realize that I was participating in the misrecognition of autistic people as socially deficient. This misrecognition kept me from recognizing my autism, and, in doing so, prolonged my search for answers about my fragile mental health.
Eventually, prompted by a bout of intense burnout and seeing others like me also discover later in life that they were autistic, I started looking for other answers to the question “what is autism?”. I found ideas that not only differed from Autism Speaks’, but even contradicted them. For example, I previously wrote about the Intense World Theory, developed by neuroscientists Markram and Markram. Their answer to the question “what is autism” suggests autistic people, because of their “hyper-perception, hyper-attention, hyper-memory and hyper-emotionality”, find social interaction overwhelming, and, thus, feel the need to avoid it. According to the Intense World Theory,
[t]he lack of social interaction in autism may therefore not be because of deficits in the ability to process social and emotional cues, but because a sub-set of cues are overly intense, compulsively attended to, excessively processed and remembered with frightening clarity and intensity.
You won’t find this explanation on the first page of results if you search online for “what is autism?” It is not nearly profitable enough. Disability studies scholars Alicia Broderick and Robin Roscigno write about the autism industry, a lucrative business. Broderick and Roscigno argue that, in order to sell their products, especially “early intervention” based in Applied Behavior Analysis, the industry works to maintain “virtually propagandist monopolies of ideas” about “what it means/is to be autistic”, in cooperation with partners in research, government, advocacy, and other arenas.
Broderick and Roscigno argue that the powerful advocacy organization Autism Speaks is an important partner for the autism industry. Through its advocacy work, Autism Speaks helps to create, perpetuate, and amplify the idea that autism is a social deficit that should be “fixed” through intervention, as early as possible, as often and as long as needed. Autism Speaks’ answer to the question “What is autism?” is an answer that presents autism as something to fear, and the autism industry’s products, as the obvious and necessary antidote.
If you, like me, are skeptical about what the Autism Industrial Complex is selling, let me offer you another answer to this question, what is autism? I do not intend to provide (nor do I claim to have) a definitive or comprehensive answer. Rather, I simply wish to highlight how we might take a different view of this label by thinking about its history, including notably the ideologies of its originators.
I want to begin with the inescapable fact of what sociologist Judy Singer calls “neurodiversity”. Singer uses this term to direct our attention to important, but largely imperceptible, differences in people’s nervous systems. She writes that the term draws attention to “the limitless variability of human cognition and the uniqueness of each human mind”. Singer stresses that, as a species, humans have always been neurodiverse. This neurodiversity long predates the diagnosis of autism, as well as the academic fields and industries that have since arisen to claim the idea of autism as their domain.
The term “neurodivergent”, coined by neurodivergent activist Kassiane Asasumasu, is also useful to my discussion. In an interview with Room magazine, neurodivergent activist Lydia X. Z. Brown explains the term in the following way:
Neurodivergence is a brain outside of what most of society considers normal, healthy, stable, sane, or intelligent. Many forms of neurodivergence and many types of neurodivergent people exist in the world. Neurodivergence includes developmental disabilities, cognitive disabilities, neurological disabilities, learning disabilities, intellectual disabilities, and psychosocial disabilities. People can be born neurodivergent, and people can become neurodivergent – for instance, by developing dementia, having a traumatic brain injury, or surviving a stroke.
The diagnostic label “autistic” appears to have developed in the early 1900s as an attempt to draw attention to neurodivergent traits seen in privileged children. The label has long been used as an attempt to describe and explain neurodivergent behaviors in what disability studies scholars Margaret F. Gibson and Patty Douglas describe as “surprising deviants”. The authors note that early research presents autistic children “as white, middle to upper-class and, simultaneously, as rare examples of an unusual pathology that should not be confused with other childhood diagnoses or hereditary ‘taint’.” This is important since, as I will discuss more below, “autism” is simply one of many diagnostic labels that have been applied to what may be the same neurodivergent traits. Hans Asperger, an Austrian physician, was one of the first people to use the diagnostic label “autistic”, and his use of “autistic” reflects this eugenic legacy.
Historian Herwig Czech discusses available historical records of Asperger’s work including his well-known 1944 article about “autistic psychopaths”, one of the earliest known publications to discuss “autistic” as a diagnostic label. In this article, Asperger presented the cases of four boys each representing different presentations of “autistic psychopathy”. According to Czech, Asperger ascribed advanced intellectual abilities to two of them, while acknowledging their need for alternative schooling arrangements in order to learn successfully. In general, Asperger presented himself as someone who could “turn troubled, difficult, or ‘abnormal’ children into useful members of society”. Czech notes that Asperger has been particularly celebrated for his validating portrayal of a subset of autistic children who he argued, using eugenic logic, were useful.
However, Asperger never claimed to offer the same opportunities to all troubled children. According to Czech, Asperger and his colleagues “claimed to be able to salvage those who could be salvaged and to know where to draw the line”. Historical records that Czech examines suggest that Asperger “was a well-functioning cog in a deadly machine”, having been willing “to lend his expertise to the selection of children for elimination” by the Nazi state.
Thus, from the very beginning, the idea of autism has been shaped by eugenics. The earliest answers to the question “What is autism?” were developed to mark the apparent neurodivergence of children who were thought to be useful to the state or to capitalism, in spite of their apparent deviance. Ideas about autism, including those held by many professional autism researchers and clinicians, continue to reflect this ideological legacy.
The most obvious evidence of this is that autism is, to this day, diagnosed more readily in people privileged by race, gender, and class. Part of the explanation for this is simple: scientific descriptions of autism have historically focused on the neurodivergent behaviors of white boys from affluent families (for example, the work of Asperger I discussed above). Researchers’ nearly exclusive focus on this subset of autistic people led them to conflate the autistic behaviors of affluent white boys with autism itself, leaving little space in the label for everyone else.
For example, rhetoric scholar Jordynn Jack discusses the way prominent psychologist Simon Baron-Cohen genders autism in his “Extreme Male Brain theory”. Jack notes that Baron-Cohen’s research often conflates autism with behaviors and interests that are treated as masculine within society. For example, Baron-Cohen focuses on people’s systemizing and empathizing traits, suggesting that autistics are high in systemizing and low in empathizing, much like men, according to Baron-Cohen at least. Jack argues, however, that Baron-Cohen and his associates have a tendency to associate “systemizing” with activities that are socially understood as masculine. For example, in questionnaires used to measure “systemizing”, a number of questions pertain to use of technologies like cars and computers, but “[t]he test itself ignores the gendering of the listed technologies as masculine and omits technologies typically gendered as feminine” such as dishwashers, sewing machines, or knitting. Thus, the systemizing tendencies of autistic girls and women may be missed by these research tools and by mental health practitioners who have been trained to see autism in this way.
Relatedly, the history of autism should be understood alongside concurrent histories of other labels that have attempted to mark similar neurodivergent traits. There are many examples of other labels used to mark neurodivergence in racially oppressed groups, and these labels portray neurodivergence much less sympathetically than “autism”. In an article reflecting on being neurodivergent and Black, Aïssatou Odia Barry draws attention to the way Black neurodivergence has often been stigmatized, for example, by researchers and others using the label “crack babies”. Barry argues that the prevailing assumption about Black neurodivergence is that it is “the result of a dysfunctional family unit rather than a mere neurological disposition”.
The history of “fetal alcohol syndrome” in Canada provides another informative example. Medical anthropologist Caroline Tait has documented how concerns about fetal alcohol syndrome among Indigenous children stem from researchers’ and the Canadian government’s unsubstantiated and racist claims that Indigenous women are more likely to abuse alcohol during pregnancy than other pregnant women. Caleigh Inman builds on Tait’s work, connecting the over-emphasis on Indigenous fetal alcohol syndrome to an under-emphasis on Indigenous autism. Inman notes that while the Canadian government is strongly focused on fetal alcohol syndrome among Indigenous children, it reports having no records of incidence of autism among Indigenous children. Inman, thus, argues that Indigenous autism is erased through many neurodivergent Indigenous children being given the diagnosis of “fetal alcohol syndrome” instead.
Throughout much of its history, the idea of autism has been controlled by nonautistic others and used to explain and describe others’ neurodivergent behaviors. This has led to misrecognition of what autism is, because nonautistic people systematically misinterpret the causes of autistic behaviors. Nonetheless, the label of autism has from its beginnings provided some protection from eugenic harm and provided a more positive portrayal than labels like “crack babies”.
My brief history of this label, however, must also include the meanings autistic people have promoted, through their activism, especially over the past few decades. Neurodivergent historian Sarah Pripas-Kapit discusses neurodivergent activist Jim Sinclair’s 1993 essay, “Don’t Mourn For Us”, calling it “neurodiversity’s first manifesto”. In the essay, Sinclair speaks back to nonautistic perceptions of autism that xe encountered amongst nonautistic parents of autistic children. Sinclair’s essay forcefully rejected the notion that autistic people were deficient, reframing their traits as simply different from nonautistic norms.
Pripas-Kapit writes that Sinclair’s ideas remain radical even today. This is, in no small part, because of the tireless work of the Autism Industrial Complex in drowning out competing ideas about what autism is. It is also important to note that when neurodivergent activists call for greater acceptance of neurodivergence, it is racialized neurodivergence that is most urgently in need of acceptance and support, especially given that autism advocacy has often failed intersectionally. Addressing an audience of predominantly white autism researchers and practitioners, Morénike Giwa Onaiwu shares her views of this intersectional failure:
When I—as a black person, as a woman, as an autistic adult, as the mother of black autistic children, as an advocate—think about the world of autism research and practice, the words of Doughboy come to mind. In a poignant ending scene from the late African American director John Singleton’s iconic debut film, Boyz n the Hood, Doughboy sadly remarks, “Either they don’t know, don’t show…or don’t care about what’s going on in the hood.” Similarly, when it comes to autism, either they—or should I say you all—do not know, do not show, or do not care about black, indigenous, people of color (BIPoC) very much.
Intersectional failure, Onaiwu notes, can be observed in the preponderance of media about autism that centers white men, to the near exclusion of other autistic people. For example, the Netflix show Atypical focuses on the experience of Sam Gardener, a white male autistic teenager. I was once a white male teenager, and I grew up in a time and place that shares many similarities with Sam’s community. Because of these similarities, I found it that much easier to relate to Sam’s experience. If stories like Atypical can help us to know better what autism is, then we need to address the intersectional failure in media representations of autism. We need stories of autism that are about people other than affluent white boys and men. When people of color search for autism online, they need to be able to see themselves in what they find, just like I did, eventually.
For the reasons I’ve laid out above (and undoubtedly many more), all answers to the question “what is autism?” are necessarily partial and flawed. I don’t purport to have a definitive answer to this question, but I hope to have provided some important context to understand the label. In particular, I hope to have shown that the diagnosis has its origins in eugenic thinking, but that its meanings continue to be reshaped both by the Autism Industrial Complex as well as other voices, most notably neurodivergent activists like Jim Sinclair and Morénike Giwa Onaiwu.
If you are looking for answers to the question “what is autism?”, perhaps because you suspect you or someone you care about might be autistic, I recommend checking out the Autism Self-Advocacy Network’s “About Autism” page for an answer that contradicts the Autism Industrial Complex’s deficit-oriented answers. They provide six overarching statements about autistic people in comparison to nonautistic people: “We think differently”, “We process our senses differently”, “We move differently”, “We communicate differently”, “We socialize differently”, and “We might need help with daily living”. As these statements show, many autistic people see ourselves as different from, but not less than, nonautistic people. If you care about autistic people, listen to us when we tell you what we are. When you read the Autism Industrial Complex’s fear-inducing ideas about the alleged deficits of autistic people, remember Robin Roscigno’s question “What if autism isn’t that scary, but that your fear is being used to make a lot of people very wealthy?”
- Autistic Self-Advocacy Network. n.d. About autism.
- Barry, Aïssatou Odia. 2022. A reflection on being Black and neurodivergent. The Varsity.
- Broderick, Alicia & Robin Roscigno. 2021. Autism, Inc.: The Autism Industrial Complex. Journal of Disability Studies in Education.
- Crenshaw, Kimberlé. 1989. Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics. University of Chicago Legal Forum.
- Czech, Herwig. 2018. Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism.
- Engelbrecht, Natalie. 2018. The autistic brain & PTSD. Embrace Autism.
- Gibson, Margaret F. & Patty Douglas. 2016. Disturbing Behaviors: Ole Ivar Lovaas and the Queer History of Autism Science. Catalyst: Feminism, Theory, and Technoscience.
- Inman, Caleigh Estelle. 2019. Absence and Epidemic: Autism and fetal alcohol spectrum disorder in Indigenous populations in Canada. Canadian Journal of Disability Studies.
- Jack, Jordynn. 2011. The Extreme Male Brain? Incrementum and the Rhetorical Gendering of Autism. Disability Studies Quarterly.
- Markram, Kamila & Henry Markram. 2010. The Intense World Theory – a unifying theory of the neurobiology of autism. Frontiers in Neuroscience.
- Medina, Mike. 2020. Flap like a butterfly; stim like a bee. Embrace Autism.
- Onaiwu, Morénike Giwa. 2020. “They Don’t Know, Don’t Show, or Don’t Care”: Autism’s White Privilege Problem. Autism in Adulthood.
- Pripas-Kapit, Sarah. 2019. Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural and Intellectual History of Neurodiversity’s First Manifesto. In: Kapp, S. (ed). Autistic Community and the Neurodiversity Movement. Palgrave Macmillan.
- Roscigno, Robin. 2021. Your Autistic child can have a great life. Here’s how. TEDxMileHigh.
- Sinclair, Jim. 1993 / 2005. Don’t Mourn For Us. Autonomy: The Critical Journal of Interdisciplinary Autism Studies
- Singer, Judy. n.d. What is neurodiversity? Reflections on Neurodiversity.
- Tait, Caroline L. 2003. Fetal Alcohol Syndrome among Aboriginal People in Canada: Review and Analysis of the Intergenerational Links to Residential Schools. Aboriginal Healing Foundation.
- Thompson, Rachel. 2020. Disability Justice Advocate and Writer Lydia X. Z. Brown on Autism and Neurodivergence. Room.