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Sometimes, I feel like a unicorn. I work with autistic children, and I’m also autistic myself. At times, it feels as though people like me don’t exist—at least, not according to the media.
I bring this up because April is here, and with it, Autism Awareness Month. But it’s often only one type of awareness: parents’ perspectives, with puzzle pieces galore. Businesses “light it up blue.” All proceeds go straight to Autism Speaks.
Every year, I secretly hate it.
Lately, I’ve noticed a shift. The Philadelphia Zoo, for example, will host Autism Acceptance Day on April 16. They aren’t alone—in 2020, the Autism Society of America also switched to Acceptance Month. The Autism Self-Advocacy Network has been pushing for “acceptance” over “awareness” since 2011. The difference between the two might seem like semantics, but to the autistic community, it’s a leap forward in the right direction.
What’s so bad about “awareness?”
Autism Awareness sounds like a good thing. Awareness campaigns bring attention to important causes like ALS and breast cancer … which are diseases. And that’s the thing: we don’t fully understand what autism is. While it’s historically treated as a disorder, some argue that it’s a natural variation of the human neurotype. Framing it as a dreaded, deadly disease like cancer doesn’t leave a good impression of autistic people.
Autism Awareness Month began in 1970. At the time, autism wasn’t well known; 50 years later, everyone knows what autism is. Since 2005, Autism Speaks has become the de facto face of Autism Awareness. Suzanne and Bob Wright founded Autism Speaks to find a cure for their grandson. They’ve always focused on caregivers’ perspectives, often emphasizing how difficult autism is.
Parents of autistic kids need support, but the popularity of Autism Speaks drowns out the voices of autistic people themselves. Imagine if straight, cisgender parents of LGBTQ+ children led the LGBTQ+ movement, or if white parents always led the discussion on transracial adoption. It severely limits the topic.
We don’t want a “cure”
Autistic self-advocates universally hate Autism Speaks, which usually takes a position opposite to that of actual autistic people. For example, Autism Speaks insists on using the term “person with autism” while most autistic people prefer “autistic”—because autism is nothing to be ashamed of—but “person with autism” is widely seen as the only acceptable term. It doesn’t sound weird until you try "person with Americanism" or "person with maleness." We don’t need a reminder that Americans or men are people. Why do we need it for autistics?
But autistic people find their most serious disagreement with Autism Speaks because the organization originated to seek a cure; it raised the “awareness” that autism is the worst fate that can befall a family. Autism Speaks has a history of releasing ads claiming autism will destroy a couple’s marriage and steal the family’s happiness. It has since removed “cure” from its mission statement (where it still notes its merger with an organization called Cure Autism Now), but we still feel the impact. Autism may be a unique neurotype that comes with strengths as well as disabilities. If that’s the case, then autism can’t be cured; it’s just who we are.
The “cure” obsession only stigmatizes autistic people. Autism Speaks could use their resources to promote services that help autistic people, not just interventions for children. Even if a cure were possible, surveys indicate that autistic people don’t want to be cured—even those of us with high support needs. We like ourselves, despite our disabilities.
It’s time to move away from that kind of awareness.
Supporting autism acceptance
Autistic self-advocates have a saying: nothing about us without us. With acceptance movements, autistic voices are finally being included in the wider conversation.
At its core, autism acceptance means seeing autistic people as real people, not as something to fix. It means valuing us for our differences. We’re so used to vilifying autism that we rarely acknowledge the positives—and believe me, there are positives.
A 2020 study from the Journal of Neuroscience illustrates this. The published results showed that neurotypical individuals were more likely to support a bad cause in exchange for money, while autistic individuals were more likely to refuse, even if it meant losing money. The researchers concluded “ASD [Autism Spectrum Disorder] individuals are more inflexible when following a moral rule … and suffer undue concern for their ill-gotten gains.” Concern for morals? I’d call that integrity. But because the medical community only pathologizes autism, even our strengths are warped into weaknesses.
It happens all the time. Narrow interests can also indicate intelligence and drive. Taking people literally can mean valuing honesty. High sensitivity and attention to detail are components of creativity and innovation. Autistic people are more than our struggles. Our unique qualities aren’t defects.
The truth about neurodivergent people
If you only see autism as a set of problems, then you aren’t really seeing autism. I grew up in the heyday of Autism Speaks, but I didn’t recognize autistic traits within myself. I understood sarcasm, so I couldn’t be autistic (boy do I love that stereotype). I had empathy, so I couldn’t possibly be autistic (autistic people can be deeply empathetic, we just don’t show it conventionally). I was creative and emotionally intelligent. Never mind that I had sensory issues, intense interests, selective mutism, and difficulty in social situations. I didn’t accept the autism in myself because I grew up hearing how terrible autism is.
Seventy percent of autistic adults are unemployed. We get little support as adults navigating the neurotypical world. Autism Speaks dominates fundraising every April, but the bulk of its money goes to advertising and research. Very little goes to help autistic people. Job training, measures to promote neurodiversity in the workplace, and reasonable accommodations can all help autistic adults find and maintain careers. It’s possible, but only when we value the contributions of neurodivergent people.
This April, ditch the tired old “awareness” campaigns. Acceptance is what autistic people need right now.
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