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All Done Autism Awareness

by Shannon Des Roches Rosa

There’s a saying we overuse in my household: “All done, [X]!” We’ve actually swiped the saying from our son Leo, who is eleven and autistic, as “all done” is what he proclaims when he is completely fed up with the activity or person at hand.

Personally, I am “all done Autism Awareness.” I don’t think ‘awareness’ is useful. If my loud, handsome son is in the room, you’ll probably be aware that he’s there — but that awareness doesn’t place you under any obligation to support or understand him. Yet support and understanding are what he needs. He does not *need* your awareness.

Autism Awareness soaks up the color and slant of any agenda, positive or negative, in a socially acceptable and often self-congratulatory fashion but without pressure to create real change to help autistic people. Not every Autism Awareness promoter does this, of course — but I’ve seen too many people and organizations use Autism Awareness as a fear-laden sledgehammer to scare people into donating money to dubious causes. Awareness campaigns also imply passivity and so are mildly helpful at best, infuriating at worst.

Instead, I prefer Autism Acceptance — it galvanizes the positive aspects of Autism Awareness, and cements them into a unequivocal statement of action. Acceptance means valuing my son’s rights as a person, as well as the rights of his spectrum-mates. Acceptance means understanding that my fierce mama bear love, protectiveness, and defensiveness about my son’s autism should not overpower autistic voices on autism issues and policy. It means acknowledging that I am by definition an outsider in my son’s world, and must rely on the courtesy of autistics to help me understand what being autistic means, what it’s like to *be* a person like Leo in a world made for people like me.

I did not start out from a place of acceptance. As a disability community outsider and a fairly non-intuitive person, I lacked the context, experience, and insight to see past our society’s too-prevalent autism stereotypes of pity and parental burdens. I never knew anyone who identified as Autistic, never realized the full variation of the autistic experience, never considered that autism did not have to preclude Leo from living a full and happy life. Thankfully, the online and offline worlds are alight with autism acceptance trail blazers — autistics of course, professionals and parents too. They have not only shown me the way, but shown me incredible patience along the way (I’m not always the best listener). And I remain mindful that I still have much to learn about autism, and that much of that learning will come from Leo himself.

A final note: Acceptance does not mean surrender — quite the opposite. I accept my son for who he is, *and* I am a human blunderbuss when it comes to demanding the supports Leo needs to be a successful, happy student and kid. I will continue to demand that society accept him and his spectrum-mates, as well.

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