How April Moved from Autism Awareness to Autism Acceptance Month
April 3, 2024
"In order to accept someone for who they are, you have to be aware of what’s going on."
-- Ondrea Marisa Robinson
The story of how April became Autism Acceptance Month instead of Autism Awareness Month may be the purest reflection of how attitudes toward something that has probably been a part of humanity forever have been, and are changing. 2024 marks the fourth year of National Autism Acceptance Month and the sixth year Illinois has recognized it as such.
Autism Awareness Month was created in 1970 by Bernard Rimland. He would go on to be one of the autism “experts” who assured the creators of the movie Rain Man that they needed to scrap the ending they’d written. That ending would have had Dustin Hoffman’s autistic savant character moving in with his half-brother, and it was changed because supposedly there was simply no way that an autistic adult could ever live outside of an institution. I’m not kidding.
What changed? Starting in the 1990s, a community of self-identified autistic adults emerged. Following in the footsteps of the broader disability rights movement--which, of course, was inspired by and frequently overlapped with the movements for the rights of African Americans, women, and LGBTQ people--they began to articulate what was wrong with the “medical model” of autism. The medical model viewed autism as a “problem” to be “cured.” They might blame it on heavy metals or “refrigerator mothers,” but autism was seen as a bad thing. But the lived experiences of autistic people gave them a very different understanding of themselves.
First, this group applied the “social model” of disability to autism. The best explanation of the social model I know of is the one Eric Garcia provides. We're Not Broken. As Garcia explains it, “[The social model] doesn’t diminish the needs of disabled people or the fact that disability can have complications. Rather, it recognizes the needs that disabled people have and works to give them services so they can live more fulfilling lives. At its core, the social model advances the civil rights of people who have certain developmental disadvantages but are not inferior because of them.”
The autism community also embraced the related idea of neurodiversity. This term, coined by the Australian social scientist Judy Singer, implies an understanding of the world in which there are no “normal” brains, only differences that are not, in and of themselves, good or bad.
One thing you will notice about our accompanying book list is that almost nothing is more than 10 years old. Does this mean that there was no worthwhile writing about autism before 2015? Not at all. At the same time, the way that autism fits into American society now is much different from the way it did less than a decade ago.
"Who I am as both a mother and an Autistic matter. I will not demonize parents because I am one. I know the struggles they face. I will not demonize Autistic persons because I am one. I know the struggles they face."
-– Tiffany Hammond
For anyone paying attention to autism in the United States during the 2010s, it was hard to miss that there were really two autism communities. One was composed of openly autistic adults, the other of the (theoretically) neurotypical (the use of the term “neurotypical” to refer to the bizarre traits exhibited by nonautistic people started out as a way to mock the clinicians who pathologized everything an autistic person said, did, or was) parents of children with autism. At best, the two communities ignored each other. At worst, they fought, sometimes viciously. Either way, they certainly weren’t viewing each other as potential allies in a shared struggle. It was heartbreaking to watch.
If this particular cold war now seems to be thawing, it’s partially because of how much more visible autism and autistic people are. An era when parents could look to no positive examples of an autistic person living a life that anyone would want for their child (and in which autistic young people had almost no identifiably autistic role models) is very slowly giving way to a new one. There are now many different templates for autistic people making lives for themselves not in spite of their differences, but because of them.
There are many proudly autistic people who are distinguishing themselves in every field. You surely know some of their names, and there seem to be more every day. But few, I think, have changed as many hearts and minds as the growing number of openly autistic parents. Many of these parents only discovered their own autistic identities after their children were diagnosed. This is especially common with mothers. Autistic women remain far more likely to go undiagnosed, though the gap is closing.
These are the Tiffany Hammonds and Morenike Giwa Onaiwus who built bridges between the two autism communities. They also allowed for the possibility of there only being one autism community, capable of pulling for the changes that will allow all neurodiverse people to live their best lives. Often, the parents leading the way are individuals with what Hammond describes as “multiple marginalized identities.” This is not a coincidence.
If any of these changes will also benefit large numbers of neurotypical people, much as the proliferation of ramps, lifts, and sidewalk cutouts has also made life easier for people who don’t have mobility needs, then all the better. And that is what autism acceptance looks like.