(Image: rainbow infinity symbol representing neurodiversity; credit to Autistic UK)
Quick note: I am going to use identity-first language. If that bothers you, read this article on the Autistic Self-Advocacy network. Check out the links at the end if you need more convincing.
I’m sure many of you are aware that April has been designated “Autism Awareness Month,” with “World Autism Awareness Day” set to kick it off this year on Monday, April 2nd. In just about two weeks, it will be time again for neurotypical (NT) people to show off just how aware and conscientious they are. The trouble is, autistic people have been voicing serious complaints about this campaign and the organization who runs it for over a decade. Some NT people have listened, and some haven’t. Still others remain blissfully unaware of the emotional (and sometimes physical) damage that Autism Speaks has inflicted on the very population it has been ostensibly trying to serve.
What many NT people seem to miss is that to most autistic people – such as myself – autism isn’t a disease or a disorder but a different way of perceiving and interacting with the world. From that perspective, autism is yet another misunderstood and marginalized identity in a world that continues to have a very difficult time accepting and accommodating diversity in any of its forms.
On February 20th of this year, a shelter-in-place alert went out at Norwalk High School after a student reported hearing someone slinging a gun in the bathroom. Although the incident turned out to be a false alarm, school dismissed early that day, leaving the student body scared and confused. Many students, as a result, took to bullying and harassing an autistic student named Owen Lynch, blaming him for the incident and spreading rumors that he had brought a gun to school. He hadn’t. No one had.
Lynch happened to be in the bathroom when the alarm was raised, so it was understandable that the police would be overcautious in their response, especially so close on the heels of yet another mass school shooting in America. What is unacceptable, however, is the bullying that Lynch endured as a result of a situation that had nothing to do with him.
Every time a mass shooting happens (all too often these past several years), a small but increasingly loud group of people wonders if there is a connection between autism and people who commit mass murder. (There isn’t.) The conversation about guns in America is beyond the scope of this particular post, but the damage that this sort of speculation causes is unforgivable. Autistic students are already more likely to be bullied than NT students are, and students like Owen Lynch are now facing a false but increasingly widespread belief which will only exacerbate the problem.
The problem these days doesn’t seem to be awareness, but acceptance. It would be difficult to find a person in the United States (and likely elsewhere) who hasn’t heard the term “autism” before, but that doesn’t stop people from perceiving it as a threat, tragedy, disease, or combination of the three.
Even the Schroeder article that I referenced above focuses primarily on the ways that autistic students’ deficits place them at an increased risk for bullying, failing to place responsibility on the NT population for bullying them. Time and time again, we focus on “fixing” autism, rather than accepting it as another form of diversity. This reinforces the othering of autistic people, which exacerbates our marginalization and isolation, further increasing the likelihood of bullying and perpetuating a cycle it was ostensibly intended to correct.
The focus on the tragedy of autism is a component of the Impairment or Medical Model of disability, which interprets a disabled person’s experience as the result of their disability and/or medical condition. Deaf and hard-of-hearing people are disabled because they can’t hear. Wheelchair users are disabled because they can’t walk. We help these people by “fixing” them, using hearing aids, cochlear implants, surgeries, physical therapy, etc.
In contrast, the Social Model of disability takes into account the way that society places disabled people at a disadvantage. Deaf and hard-of-hearing people have trouble communicating because most of the world uses sound-based language. Wheelchair users have mobility restrictions due to the near-ubiquitous presence of stairs and narrow doorways. The Social Model presents a major shift in how we view disability, placing responsibility on nondisabled people and the larger community instead of exclusively focusing on disabled people as being “broken.”
The Schroeder article spends most of its time discussing autism through the Impairment/Medical model, with very little focus on the ways that individual and systemic bias contribute to bullying. In contrast, a study in 2016 examined first impressions that NT people formed of autistic peers, given varied types and amounts of information. (In this study, ASD refers to ‘Autism Spectrum Disorder,’ and ‘TD’ means ‘typically developing.’) They noted:
observers’ first impressions of individuals with ASD engaging in real-world social behavior were found to be robustly less favorable than those of matched TD controls. These negative first impressions were consistent for both adults and children with ASD, for static as well as dynamic stimuli, for both brief (2–4 s) and longer (10 s) glimpses of social behavior, and did not change with repeated exposure. Further, because these impressions were associated with reduced intentions to socially engage by observers, they may reflect a previously under-recognized contributor to the reduced quantity and quality of social interaction experienced by individuals with ASD
Person-first language aside, this article uses the Social Model to examine the struggles that autistic people experience. Rather than focusing on the individual deficits that may be causing autistic people to experience isolation, they study the reactions and intentions of NT peers. As a result, they’re able to identify factors that the NT community doesn’t seem to consider. For example, autistic people are largely viewed as having trouble with social interactions, but rarely is it acknowledged that we struggle in part because neurotpyical people avoid interacting with us.
Here’s another important takeaway from that study:
…negative first impressions of adults with ASD occurred only when audio and/or visual information was present, and not when the transcript of their speech content was evaluated (Study 1). This discrepancy suggests that social presentation style rather than the substantive content of social speech drove negative impression formation of individuals with ASD. Supporting this conclusion, a static image was sufficient for generating negative first impressions of those with ASD and including additional information, such as body movement or voice, did not worsen them further. In contrast, first impressions of TD controls improved with the addition of a visual information, suggesting that unlike the ASD group, visual cues helped rather than hurt the impressions they made on observers.
Negative first impressions that NT people form about autistic people have nothing to do with the content of what the latter actually say. We now have empirical evidence that these judgments are insubstantive. Yet they persist, and this article is one of few to suggest that the fault does not lie with autistic people alone. We aren’t disabled simply because we have trouble with social interaction, but also because the neurotypical world is conditioned to perceive us in a negative way when we don’t conform to their expectations.
When autistic people do “pass” as neurotypical, by suppressing autistic traits and intentionally adopting NT behavior, it usually requires a concerted effort with an intense emotional cost. Ada Hoffman wrote a long post about the emotional labor that autistic people perform in order to appear NT in different situations. As she points out:
Any autistic person who “passes”, or tries to pass, is doing a ton of invisible emotional labour by definition. Even people who don’t pass usually do some of this labour so that they will bother people less.
Most of the material in social skills classes for autistic people is geared towards teaching us to do even more of this emotional labour in even more circumstances.
Hoffman also discusses the types of emotional labor that are particularly difficult or easy for autistic people to perform, as well as types of emotional labor that many autistics are performing constantly, which might not seem like work to a NT person. In a particularly heartbreaking moment, she points out that “Many of the complaints that NTs have about autistic people boil down to the fact that autistic people are not doing enough emotional labour for them.”
So even though autistic people who attempt to pass as neurotypical are constantly performing more emotional labor than our NT peers, NT people still avoid us because our efforts are not enough to make them feel comfortable. Viewed from this angle, it starts to look as though the problem isn’t inherent to autism after all.
This article talks about the problems that autistic women face when they constantly attempt to pass (an habit also known as “masking” or “camouflaging”).
Some of the participants reported that they camouflage in order to connect with friends, find a good job, or meet a romantic partner. “Camouflaging well can land you a lucrative job,” Jennifer says. “It helps you get through social interaction without there being a spotlight on your behavior or a giant letter A on your chest.” Others said they camouflage to avoid punishment, to protect themselves from being shunned or attacked, or simply to be seen as “normal.”
This pattern can be very damaging to mental health.
Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.
On the other hand, being open and genuine about one’s autistic identity “comes with its own burdens, such as a stigmatising label and lower expectations for achievement.” Even further: “Many said they have played so many roles to disguise themselves through the years that they have lost sight of their true identity.”
Social interaction is meant to be reciprocal, so I’m not saying it’s unfair to ask autistic people to perform any emotional labor during social interactions. What I’m saying is that the burden shouldn’t be entirely on us to change who we are in order to make NT people more comfortable. I say this partly because social interactions tend to be disproportionately exhausting for autistic people, and partially because if NT people are perceiving autistic peers as awkward, unattractive, and unfavorable to talk or hang out with based on still photographs alone (see Study 1 of the Sasson article), then our attempts to camouflage can only take us so far. At some point, it becomes unfair to view autism through the Impairment/Medical model and place the blame for social breakdown entirely on us.
Which brings me back to Autism Speaks.
For specific reasons why autistic people dislike Autism Speaks (often notated by autistic people as A$), look here, here, here, and here, for starters. Because A$ is the main organization behind “Autism Awareness Month,” “World Autism Awareness Day,” and “Light it up blue,” you can probably infer how the autistic community feels about these campaigns.
I’ll tell you anyway: they’re abelist, fear-mongering crap that make NT people feel good about themselves while simultaneously othering the very population they are pretending to help. But don’t take my word for it.
The Social Model of disability is crucial for understanding autistic people because it forces the conversation to include our input, allowing the autistic community to explain our own needs and perspectives. As a variety of self-advocacy groups have stated: “Nothing about us without us.” Meanwhile, A$ and Awareness Month have typically been about autistic people, but almost entirely without us.
The Medical/Impairment model results in trends like Applied Behavior Analysis, the popular but intensely problematic method of intervention which has been linked to increased symptoms of post-traumatic stress disorder in people who are exposed to it. The Social Model brings us groups such as the Autistic Self Advocacy Network, the Autism Women’s Network, and communities on social media such as the #ActuallyAutistic and #AskingAutistics hashtags on Twitter.
Where the A$ campaigns are largely founded on the Impairment/Medical Model, the Social Model of autism provides the foundation for Autism Acceptance month, an alternative campaign started and run by autistic people. “In a nutshell,” their description states, “Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world.”
In conclusion, as stated by one of the most well-written fictional characters I’ve ever seen on television (in a show that was, incidentally, written by an autistic person): “That’s what people don’t get, is they need to get me.”
Would you rather be accepting than aware? Would you rather be an advocate and ally than perpetuate this cycle of theatrically-well-meaning ableism? Here are some ideas:
- Check out this list of ideas from the Autistic Self-Advocacy Network and Autism Acceptance Month
- Read some of these books by autistic authors. Alternatively (or in addition), read some of these books by autistic authors.
- Be extra nice to your autistic friend, family member, acquaintance, coworker, etc. We are about to be bombarded for 30 days straight with allegations that we are broken, tragic, burdensome, an epidemic, at fault for being bullied, and (relatively new this year) potentially responsible for America’s gun violence problem. Ask the autistic person in your life what you can do to help them get through this month. Then (this is key) respect and honor their answer.
- Share any or all of the above resources with the neurotypical people you know who like to perpetuate damaging stigmas about autism, well-intentioned as they may be.
- Enjoy the visual component of activism? Instead of blue and puzzle pieces, go for red and more inclusive, autistic-created symbols such as the rainbow brain or infinity symbol. Searching for “neurodiversity” on websites such as etsy.com and redbubble.com will bring you to a variety of paraphernalia worth looking at, with the added benefit of supporting autistic artists!
- Into social media? Check out the hashtags #AutismAcceptance #AskingAutistics #neurodiversity or #redinstead. On Twitter, you can actually post questions under #AskingAutistics, and there is a large community of people who will answer you honestly. (If you are not autistic, please do not use #ActuallyAutistic, as that tag is meant for autistic people.)
Happy Autism Acceptance month!