April is Autism Acceptance Month. Because our understanding of Autism is rapidly evolving, so too is the language we use. In this article, I’ll discuss current best practices for language and address some of the common misunderstandings around Autism.
Autism is a neurological status (“neurotype”) characterized by differences from Neurotypical brains. To qualify for a diagnosis of Autism Spectrum Disorder under the DSM-5 (2013/2022), which is the current guidebook used by mental health professionals, a person must show significant impairments in each of three areas: Understanding expectations in social interactions, following cultural norms for non-verbal communication, and maintaining peer-appropriate friendships. Additionally, they must show persistent behaviors in at least two of these four areas: Repetitive motions or speech (often called “stimming”), adherence to routines and rituals, high fixation on specific interests, and strong sensitivity to environmental stimuli.
There is a lot of language to unpack in the preceding paragraph. It was written from the perspective of an Autistic person, and so it has a generally more positive tone than the words used in the DSM-5. For instance, the DSM-5 refers to “persistent deficits”. Also, I distinguished between “Autism” and “Autism Spectrum Disorder”, just as I referred to “Autism Acceptance” in the first paragraph rather than to “Autism Awareness”, which was the original name for this month.
The prevalence of Autism diagnoses has been increasing rapidly over the last few decades. In the year 2000, one in every 150 children was diagnosed; by 2010, this was one in every 68; by 2020, it was one in 36. The reasons for this increase include the changes in criteria, but also include other factors, such as increases in sound and light pollution, greater availability of information, and changes in how people interact in an internet-focused world. At the same time, Autism Spectrum Disorder as a diagnosis is only called for when the level of challenges becomes substantively debilitating: Many people with the Autistic neurotype function reasonably well in society with few external supports. Hence, it’s likely that the percent of people who are Autistic is much higher than the rate of diagnosis.
In the past, the stereotypical Autistic child was a boy, generally white, who is extremely temperamental, self-centered and arrogant, a poor communicator, and either highly intelligent or obsessed with a narrow topic. Examples from media include Malvin in the 1983 film WarGames, as well as Sheldon Cooper (The Big Bang Theory and Young Sheldon), Raymond Babbitt (Rain Man), and Dr. Shaun Murphy (The Good Doctor).
“Autism” itself as a diagnosis is fairly new. The first person who was officially diagnosed died only last year. Because of the newness of the diagnosis, the early data and hence perceptions were skewed towards people with the easiest access to mental health care and support.
However, Autism itself is hardly new. It’s been suggested, for instance, that Isaac Newton, Henry Cavendish, Albert Einstein, and Wolfgang Amadeus Mozart were likely Autistic. Meanwhile, Harpo Marx’s on-stage persona had several Autistic hallmarks, including his famous mutism and intense eye contact. YouTube has a Harpo Marx compilation video which is a veritable checklist of common Autistic characteristics: literalism (e.g., “cut the cards”), body posture quirks, inappropriate emotional responses and social interactions, and so on. Indeed, while Autism as a diagnosis is less than a century old, Autism as a trait is likely much, much older than that.
These days, as identification and diagnostic rates increase for girls, women, and nonbinary people, as well as for people of color, the stereotype is changing. Entertainers Chloé Hayden, Kayla Cromer, and Dominique Brown, researcher Temple Grandin, artist Stephen Wiltshire, activist Greta Thunberg, and many others are changing the face of autism.
Other stereotypes are also changing. Older language distinguished between “high functioning” Autism, also called Asperger’s Syndrome, and “low functioning” Autism. Entertainers like Dan Aykroyd and Gary Numan were diagnosed with Asperger’s Syndrome. However, with the DSM-5 as well as a changing understanding of Hans Asperger’s complicity with the Nazi eugenics program, that term has largely fallen out of favor in the Autistic community. At the same time, “functioning” language has been replaced with support levels.
Level 1 Autists require the least external support: We have the hallmark traits, but have learned to mostly manage them. That doesn’t mean we’re not disabled and don’t sometimes need accommodations, but those needs are less intense than at other levels. Level 3 Autists require the most external support: As children, they provide the greatest challenges for teachers; as adults, they are likely to require group home supports.
This new leveling reinforces the “spectrum” aspect of Autism, but it’s important to note that the spectrum isn’t a linear one. Autism is a neurotype: It’s not the case that “everyone is a little bit autistic”. Level 1 Autists aren’t “less” autistic than level 3: We’ve just developed better external coping mechanisms. One of the biggest coping mechanisms is masking, which is presenting an external persona so that we fit in better. Because of our social challenges, Autists experience a lot of ostracism as children, and masking comes from self-protection against trauma. Harpo Marx’s intense eye contact is a common artifact of masking: Most Autists don’t like eye contact, and sometimes we overcorrect by making too much of it.
Autism is a spectrum from the sense that each of the criteria are present in differing amounts in different people. A common stereotype is that Autists are math geniuses, but many Autists have dyscalculia, which is a learning disability involving mathematics. Another common stereotype is that Autists are mute or struggle to talk, but many Autists are hyperlexic. I myself was late to speaking, but when I started to speak, I had a large vocabulary. A common statement in the Autistic community is: “If you’ve met one Autistic person, you’ve met one Autistic person.”
There are two major ways in which Autism is disabling. Autism is in itself a disability: Even level one Autists may struggle with bright lights, certain sounds, or smells; we may struggle with interacting with people, and we have a high rate of unemployment because of fear of rejection, a drive to avoid demands, or struggling with understanding complex tasks.
The other major form of disability comes from social stigma: We may also lose jobs because we’re competent but weird or difficult to work with. Social ostracism is very high, and most of us, regardless of our support needs, have experienced a lot of trauma and bullying. Even well-intentioned non-Autistic people can cause harm by speaking over us and treating us like children.
Right now, the majority of the Autistic community prefers identity-based language, that is, “Autistic people/people who are Autistic” instead of “people with Autism/people who have Autism”. We see our Autism as an intrinsic part of ourselves, with both its strengths and its weaknesses. As the fictional TV character Adrian Monk says of his Obsessive-Compulsive Disorder, “It’s a blessing… and a curse.” Musician Gary Numan, for instance, has talked about how his Autism has allowed him to experiment free of stressing about external judgments.
Another common stereotype is that Autists lack empathy, but that isn’t true: Most of us are very empathetic, but we communicate our empathy differently. The Double Empathy Problem suggests that Autists and non-Autists struggle with mutual empathy because we don’t have a common way of communicating, and the non-Autists, being culturally dominant, expect us to conform to their style.
Autism is not a disease, and it has no cure. It is a neurotype, and it has both advantages and disadvantages. As a result of the social stigma and the issues with masking, the prevailing opinion within the community is that we are not puzzle pieces to be fit into a non-Autistic mold; Autists exist on a spectrum, and most of us prefer an infinity sign (either gold, for Autism, or rainbow, for neurodivergents overall). Listen to those of us who can communicate, and help all of us to find our voices.