Dear well-meaning strangers

By Lydia Brown of the Autistic Self Advocacy Network

Dear well-meaning strangers,

Everywhere you look, in person or online, you will be bombarded with public service announcements, billboards, letters, emails, graphics, and all manner of multimedia about “autism awareness.”

Here’s a revolutionary idea.

Every time you see or hear something that says something about “autism awareness,” mentally replace that “awareness” word with “acceptance.” There is a wide gulf between “awareness” and “acceptance.” Not all awareness is good awareness, and awareness itself can be the farthest thing from acceptance.

Awareness only means some peripheral knowledge that something exists, whether as an idea, a fact, or a reality. One might be “aware” of Al Qaeda, but that says nothing about your knowledge or understanding of the group’s structure, leadership, ideology, or history. All it means is that you are aware that something called Al Qaeda exists. Maybe you know that Al Qaeda is a terrorist group. Maybe you know that Usama bin Ladin was its leader until he was killed a year ago. But if you were to walk into a room full of Al Qaeda’s leaders or full of counter-terrorism agents discussing a sensitive operation targeting Al Qaeda, and proclaim to be “aware” of Al Qaeda, they would all laugh at you.

Awareness means very little.

To be aware of autism means only that you know that something called “autism” exists. You may not even know any Autistic people. Or you may know one or a few, but still have very little grasp on what exactly autism is or means, never mind the full breadth and depth of Autistic culture and community.

Autism acceptance is a revolutionary idea when juxtaposed with autism awareness. Anyone can be aware. It takes about two to five seconds to become aware of something, perhaps slightly longer if you have cognitive delays. Acceptance requires actual effort and the willingness to set aside misconceptions, preconceived notions, stereotypes, and media-branded images and ideas. Gone with the idiot savant, the slightly socially awkward genius, the presumption of incompetence, the pity and fear based campaigns, the debunked theories of causation and recovery.

Acceptance means the active consideration of the idea that Autistic people have a unique and natural and normal way of existing in the world. It comes with its challenges but also with many rewards. Disability does not mean defective or broken or diseased. It means lacking typical abilities or lacking specific abilities. Autistic is not a swear word. It is a beautiful word, a name for an identity that represents an entire group of people who are diverse in their personalities, characters, abilities, and deficits. Autism is not homogeneous. Autistics are not homogeneous. But we are everywhere; we are a part of your community. We are in your children’s schools, your houses of worship, your neighborhoods, and your workplaces.

We cry for acceptance, but usually our voices are silenced or ignored. Awareness campaigns are very rarely created by us about us, but about us without us. Please pay very close attention to what you see or hear about autism. Question what you read. Examine the rhetoric used to grab your attention while passing through a subway station or driving along an interstate. What words are used? How often will you hear “intervention” or “treatment” or “devastating” or “awareness?” How often will you hear “acceptance” or “supports” or “self-determination” or “self-advocacy?” You will hear words taken from the fields of biology, psychiatry, psychology, and charity. You will hear very few words taken from the fields of sociology, public policy, and disability studies.

If you have children, teach them to pay attention to the type of language they see or hear, and teach them to question what the people who put that language there wanted them to think when they heard or saw their words. Introduce them to Autistic people you know — children, youth, adults. Instead of carefully-positioned, stark images of Autistics on billboards, let them see the real faces of autism. Show them that accepting their peers is far more important and respectful than merely tolerating them.

And if you can, take a stack of sticky notes (or better yet, paper and that blue painter’s tape) and a permanent marker, and write “acceptance” on them. Write messages of hope and community — there are Autistic youth and adults who are there to welcome Autistic children into the community, support them as they age into adolescence and adulthood, and speak for them as policymakers try to remove access to necessary supports and services. And whenever you see a billboard or a poster somewhere about autism awareness, take one of those sticky notes and cover the word “awareness” with “acceptance.” Leave a website or email address for people to copy so they can learn more.

Don’t fall for the awareness campaigns. Fight for acceptance.

Sincerely,

An Autistic person