Let’s begin here: Whether April is Autism Awareness Month or Autism Acceptance Month, I think the place where autism awareness and acceptance need first and foremost to be engaged is within the autism community. Does the autism community — people on the spectrum themselves, families, autism organizations — accept autism? If not, why would anyone else? How aware are we, too — and is that awareness, when it is present, focused mostly on ourselves and our own families or on broader notions of well-being for autistic people and general society? When we achieve awareness beyond navel-gazing and, to be fair, survival, are we also achieving compassion and lovingkindness? Are we committed to improving the lives of others? When awareness is achieved broadly, inside and outside the autism community, what does that look like? Will it mean acceptance? And let’s consider the consequences if the answer to that last question is no.
So here’s a short post born from a long thought — the following paragraph/really, really long and dense sentence — which I posted on LinkedIn the other night and then was about to post on Facebook but instead pulled it back to supplement it with a few additional comments here on the blog as my mind continues to flit around it:
If we take the new 1 in 68 number from the CDC for autism prevalence in the U.S. population for people 21 and under (and disregard that the ratio will of course increase again as our overall diagnostic capability increases and subpopulation under-detection biases ameliorate) and project it across the world population, on my assumption that autism prevalence isn’t necessarily increasing but rather just our awareness and detection of it, the world population of autistics is more than 106 million people — a population larger than that of all but 11 countries on this planet.
I’m not suggesting this is a statistically mature approach, but let’s use it as a starting point for conversation and a few notions.
Notion No. 1: Autistic people often feel alone. You are not alone. You may be isolated. That can be corrected. Take a walk through a supermarket, and you’re likely passing by one or more people on the spectrum. Building opportunities for connection is work, but relatively low-lying fruit, to use a stubborn phrase I picked up at a former workplace: it’s not difficult to accomplish if people, organizations, and communities choose to accomplish it.
Notion No. 2: Autistic people fight to assert autistic identity. Set down your arms. The population may be marginalized in most societies, as many individuals continue to languish and struggle, but not in its numbers within and across societies. Those numbers carry power and meaning ready to be claimed. And, given the regular upward revision of the statistics, autistics are one of the faster growing populations on the planet. Better organization and conscious choice offer revelatory if not revolutionary possibilities. Stop defending. Instead, assume acceptance, claim your power, and spend more time conceptualizing and creatively fostering new, innovative opportunities and possibilities. Create the good future for autistics and for everyone.
Notion No. 3: The ways in which American society approaches education, work, and socialization for autistic people are terribly inadequate. Most of the approaches are ill-conceived; some are ignorant and cruel. Families are given inappropriate, biased ideas, information, and options; once they buy into them, they become the chief defenders of the status quo, because we all have a strong psychological tendency toward finding evidence to support the choices we’ve made, especially consequential ones. Autistic and non-autistic alike suffer for it in families and communities. We have to do better, and we have to do better now; failure to do so means failing all our children and our future, and the burdens created will haunt them both. To be honest, I’m not optimistic about this at the moment. American society already fails children in numerous ways. We are partisan and narcissistic, and we lack the value system, the will, and apparently the intelligence to come together and make the meaningful sacrifices and good choices to turn that around. I’m not sure how the autistic population might fare better than that in this society, but I hope it can be part of a movement to affect society in positive, meaningful ways that make us — all of us — better.
Notion No. 4: We create a lot of petty differentiations and incidental classifications as human beings. We can invest a surprising amount of identity in being born a few miles on this or that side of a national border, this or that side of a school-district boundary, to parents who belong to this or that social group or political party. But some core identities that tether in significant — if sometimes unfortunate — ways still fundamental to human identity include sex or gender, sexual preference, race, and, for many, religion. The autistic-allistic distinction may be of similar dimensions. That doesn’t mean it always will be; see my post on autism, race, and identity. But long before the distinction can recede, first the education and increased societal consciousness necessary for rights awareness and equal opportunities — a process engaged for many decades in those other areas, and still being engaged even as we acknowledge extraordinary progress and change — need to take place for neurodiversity, as well. Exactly because we’ve had so much experience in these other categories, the movement forward can build on those histories and be more sophisticated and effective, expediting the timeline toward better societal integration, fairness, and kindness.
106 million, and that’s a conservative projection.
1 in 68 doesn’t surprise. But it certainly matters.
Welcome to autism nation.
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Ray, you are so darn right it’s all about what YOU said! And this is why for the first year since Autism Speaks took over ( I was there before they were!!! with the kids!) I am not lighting it up blue on Facebook. It is so much bigger that lighting it up blue! Acceptance. What Jim and I have done since day 1, as well as encourage. It isn’t all about fixing people. U afftim you! I love what you said! xox jean!
PS: sorry about the typo!