The Outdated Language of Autism ‘Awareness’ Month
A shift among advocates reflects the view that autism is simply another neurotype — not a disease to be cured.
Originally published by The Progressive
BY MEG HARTLEY, APRIL 28, 2023 2:54 PM
While Autism Awareness Month may have started with good intentions, every April my autism support groups are flooded with upset reactions to Autism Awareness posts. While these posts mean well, because society’s conditioned people to beware of autism, they usually come out infantilizing, condescending, or even dehumanizing, advocating for the end of autism…which they don’t seem to realize means the end of autistic people.
In the decades since 1970, when the Autism Society first established Autism Awareness Week (which then evolved into Month), we’ve learned a lot about being autistic, and it’s important that the language we use reflects this. The Autism Society recently shifted away from using the term “awareness” by renaming the event Autism Acceptance Month. Unfortunately, the public really hasn’t caught on.
This may not seem like a big deal, but for people who are autistic, language matters. Fifty years of promoting “Autism Awareness Month” creates “real barriers for Autistics to be seen as more than a stereotype,” writes researcher Maddy Dever in the Canadian Journal of Autism Equity. We should instead, she says, aim to move from “words and thoughts that cause exclusion and segregation to words that promote inclusion and accommodation. Changing our language changes the way we think, changing the way we think, changes the way we act, and our actions can bring about change that will allow Autistics to thrive.”
Autism is a descriptor for neurological differences that result in our experiencing and processing the world differently. These differences cause us to react, think, and behave in alternative ways. Autism is a neurotype — not a disease. But the “awareness” framework can make people think it is. When people advocate for “curing” autism, they’re actually rooting for “no more autistic people.” The conversation can quickly devolve into one about eradicating us, and that’s not okay.
There are many meaningful ways to integrate us into society, but first society has got to desist in trying to get us to “stop acting weird.”
An autistic life is worthy of living. Even if it did make physiological sense, I wouldn’t want to be cured of being autistic — I want to be cured of the things that cause autistic burnout and our terrifying suicide rates. There are many meaningful ways to integrate us into society, but first society has got to desist in trying to get us to “stop acting weird.”
When society has such homogenized expectations of “normal,” it results in people either being excluded or encouraged to hide their differentness. With autistic people, this behavior of “masking” can result in autistic burnout, leading to an increase in problems including extreme sensory sensitivities, communication troubles, meltdowns, and debilitating exhaustion — all of which, ironically, can result in the inability to mask or, for many, participate in society at all.
These are just some of the reasons why the autistic community advocates for an acceptance over awareness frame: it emphasizes accepting that we’re different, learning what autism really is, and letting us be us.
The switch from ‘awareness’ to ‘acceptance’ is part of a larger neurodiversity movement that views brain differences as not inherently lacking or wrong — just different. And beyond that, it’s part of the social model of disability, which “identifies systemic barriers, derogatory attitudes, and social exclusion, which make it difficult or impossible for disabled people to attain their valued functionings.” It’s time for society to make room for more of humanity, and switching to Autism Acceptance Month is a part of that.
Additionally, the current popular verbiage has other problematic aspects. Autism Awareness Month may have started out with intentions of truly helping autistic people, but it’s become the biggest income booster for the autism industrial complex — a litany of groups like Autism Speaks that claim to help autistic people, but are known in the community for doing the opposite.
There is another way: It’s time to actually listen to autistic people about what we need to better manage our easily-overwhelmed but also uniquely equipped brains.
Here are some tips to get you started on being a part of our societal transition to autism acceptance:
Know that different doesn’t mean worse. Don’t dismiss or judge people for needing sensory gear (headphones, tinted glasses, etc.), stimming (repeated movements, fidgeting, etc.), needing mobility assistance (cane, walker, etc.), requiring different ways of communicating (nonverbal, requiring text, etc.), or other differences people often incorrectly associate with lack of intellect or competence.
Take disability accommodations seriously. Similarly, when someone needs a disability accommodation, that doesn’t mean they “think they’re special,” it means they have different needs. The ADA may require employers to provide reasonable accommodation in the workplace, but in practice it’s much trickier, with pushback from bosses and rolled eyes from coworkers. It’s hard enough to have different needs, and it’s harder still to ask for accommodations, so for the love of god, don’t make it even worse — and call out anyone who does.
Don’t get offended when someone asks why. Some of us need to know why in order to do the best job we can. Autism acceptance advocate Callum Stephen summed it up impeccably: “One of the best things you can do for autistic people is explaining why. Why you want us to do a thing (X way); why something isn’t possible; why you’re upset with us; etc. We may not intuit the ‘why,’ and knowing helps us to contextualize and act with purpose and direction.”
Ask questions instead of assuming the worst. One of the biggest myths around autism is that we lack empathy, but to us it looks like non-autistic people often lack empathy. Autistic sociologist and autism researcher Damian Milton described this issue as the “double empathy problem,” which proposes that “the social and communication difficulties present in autistic people when socializing with non-autistic people are at least partly due to a lack of mutual understanding between autistic people and non-autistic people — i.e., most autistic people lack understanding of non-autistic people whereas most non-autistic people lack understanding of autistic people.” Autistic people are often inherently on different wavelengths, so to speak, so more communication is often needed to accomplish mutual understanding.
Don’t assume you know what autism “looks” like; that’s not a thing. While some of us move with tics like twitching or blinking, lots of us have been taught to mask, and may seem “normal” or different in a way that’s hard to put your finger on. As we say in the community, “If you’ve met one autistic person, you’ve met one autistic person.”
Speak up when you hear outdated language. Allies are crucial in helping change to really take root, there’s immense power in speaking up for individuals not given a sufficient voice in society — so, please, correct people who’re still saying “awareness” and fill them in on why the shift is needed.
Ask the government to adopt “acceptance” terminology. Make a public comment to the Interagency Autism Coordinating Committee and encourage them to revise the outdated and harmful “awareness” terminology and make Autism Acceptance Month official in the United States.
We need everyone to know they should not write us off. In addition to desperately needing understanding and support, we have a lot to contribute — and that’s exactly what acceptance will help us do.
