Many autism organizations are celebrating April as Autism Awareness Month. But others, especially those in which autistic people have a say, are celebrating Autism Acceptance Month instead. Why?
Because Autism Awareness doesn't really help autistic people in general, and kids like my son Leo specifically. It makes it too easy for well-meaning people to feel they are "doing something" about autism if they wear a blue ribbon or buy a blue light bulb -- when neither of those actions translate to real-world benefits and support for autistics and autism families. Autism Awareness campaigns let people look at pictures of kids like my sweet Leo (riding his bike in the photo), and say "awww" or "bless his heart" while still considering him as a statistic, a number in an "epidemic" (autism is not a disease), a burden to society.
It's infuriating. Witness what Bob Wright, co-founder of Autism Speaks, has to say about Leo and other autistic people last week when the CDC released a new report declaring autism prevalence rates to be one in 88:
"We have an epidemic on our hands. The costs are staggering and will continue to rise as prevalence continues to increase. We know that early diagnosis and treatment are critical, so it is imperative that the U.S. government steps up its commitment to helping people living with autism today. There is a way to address this. The investment we make now is essential to reducing the immediate and long-term costs of autism to families and society."
Yes, autistic people do need support. From society. But so do many other groups, and I don't see organizations using them as coffers-draining boogeymen. Won't society also see increasing costs as that looming bolus of Baby Boomers starts aging and needing care? Why are we segregating autistics as financial millstones, using them as props to scare already-fidgety tax payers -- instead of figuring out best practices to support those who need it, regardless of non-uncommon circumstances?
Personally, I interpret the CDC report as a more accurate depiction of what autism numbers have been all along, and hope it means more autistic people who need services and support will get them. That's a good thing, on my checklist.
And my hope is that the CDC report -- in revealing that autism is even more common that we thought -- will be a needed step towards autism acceptance, because my autistic son doesn't need awareness. He needs people to understand him and his needs without stigma or pity -- or to accept that some of his behaviors are not wrong but may take time to get used to, for those without first-hand autism experience.
All this is why I'm heeding the call of Paula Durbin-Westby, an autistic self-advocate who put out a Facebook call for April 2 to be Autism Acceptance Day instead of Autism Awareness Day. She says Autism Awareness Day and Month is about:
ACCEPTANCE, not tolerance, not "yes, but...", just acceptance. Pro-neurodiversity, pro-supports and services, against "cures."
Another autistic adult, Meg Evans, says about Autism Awareness versus Acceptance:
Awareness campaigns [...] can cause the public to overlook the real people they’re about. Autism ends up being perceived as if it were something separate from the person – a collection of problems to be dealt with, rather than a group of people in need of understanding and accommodation. What’s missing, all too often, is the willingness to simply listen to the concerns of the Autistic community in a quiet, nonjudgmental way. The din of autism awareness has gotten so loud that the voices of real Autistic people sometimes can’t be heard above it. If members of the public, instead of simply contributing money to an awareness campaign, would take the time to sit down and talk with Autistic people in their communities, I expect our society would move a lot farther toward acceptance.
I couldn't agree more. And I hope you will join those who are celebrating Autism Acceptance Month starting April 1st.
More information on Autism Acceptance Month:
- Paula Durbin-Westby at the Autism Acceptance Month blog has compiled a list of some of the people, blogs, and organizations that will be participating in Autism Awareness Month.
- Elesia Ashkenazy for Autism Women's Network interviewed several autistic advocates about the importance of acceptance versus awareness for her post Autism Awareness Month: Nothing About Us Without Us!
- And at Thinking Person's Guide to Autism, where I am an editor, we will be featuring profiles of autistic people of all ages, every day during the month of April -- with the goal of helping our readers understand that autistic people are as diverse and complex as any other population united by a label.
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