April is national Autism Acceptance Month.
The 30-day period that was previously known as Autism Awareness Month began in 1970. Ironically, specific criteria for diagnosing autism were not available until 1980, although the term and concept were coined as far back as 1911. Between 1911 and 1980, Autism was considered a form of schizophrenia. Over the years, we’ve had research and better definitions for the diagnostic criteria. Causes for autism have been suggested and debunked (childhood vaccines do not cause autism, in case you missed that memo).
Over time, autism also became recognized as a spectrum of disorders. The related diagnosis Asperger syndrome was added as a diagnosis in 1994, but then removed as a separate diagnosis in 2013. This left us with the currently accepted diagnosis of Autism Spectrum Disorder.
But I would argue that all the shifts in diagnosis and definition potentially have less impact on the way we look at autism than the subtle shift from autism awareness to autism acceptance.
For most people on the autism spectrum, understanding the causes of autism and the intricacies of diagnosis do nothing to improve their lives. Nor does passive “awareness” of autism. What we need is true understanding and a commitment to breaking down barriers and empowering autistic people. People with autism need access to educational opportunities, jobs, intimate and social relationships, and good housing. Simple awareness doesn’t achieve that.
Worse than passivity, the awareness term was also couched in a tone of a threat to be aware of, in the same way we might have awareness of domestic violence or the opioid epidemic. The outcome of eradicating autism is eradicating autistic people, which is far more dangerous and threatening than autism itself could ever be.
Thus in 2011, the folks at the Autistic Self-Advocacy Network suggested a change from awareness to acceptance. This change is not simply a shift in semantics. One definition of acceptance is “the belief in the goodness of something,” and close synonyms include approval, recognition, cooperation, affirmation and acknowledgment.
According to the advocates at ASAN, “acceptance is an action, and it goes beyond changing the language we use. In order to truly practice autism acceptance, autism organizations must also change how they think about autism, and how they work to represent autistic people.”
It also necessitates a shift in how the general population views autism and which voices matter in the conversation. Since the time autism was first recognized, the conversation has been dominated by medical professionals, scientists, social service professionals and families. Autism acceptance centers people with autism as the experts in their lives, their goals and their needs.
In that vein, I must be clear that I am not autistic. Listening to me is not enough. If you think there might be some validity to what I share (or especially if you don’t!), take time to seek out autistic voices. They are easily found at https://autisticadvocacy.org/, and a growing array of autistic bloggers and vloggers are available on the internet.
Tara Kiene is president/CEO of Community Connections Inc.
