I want to share a conversation I once had with a business representative who was interested in me contributing to their autism awareness efforts:
Me: I’d be happy to help with your efforts. I and my daughter are both on the spectrum, and I’m happy to help out with Autism Acceptance Month. I’ll help how I can, except for promoting anything to do with Autism Speaks. I don’t personally support that organization.
Them: Thanks. April 2 is Light It Up Blue Day. Would you like to help us coordinate that?
Me: Thanks for reaching out. I’m sorry, but Light It Up Blue is an Autism Speaks-associated event. They have done a lot of damage to the public perception of autism and fail to accurately represent autistic voices to the public. I would be happy to do other things to engage autism and neurodiversity acceptance, like a Q&A about growing up with autism, talking with your HR or Facilities departments about creating sensory-friendly work environments, discussing how to better accommodate neurodiverse employees and candidates, etc.
Please note that I edited this conversation for brevity and anonymity.
I heard nothing after that. I actually didn’t expect to. Sometimes, people don’t understand when we in the autism community say that we feel silenced at times. It’s not that anyone is pointing at us and saying, “Be quiet!” (Well, except occasionally on Twitter.) Instead, the issue is that we end up marginalized when the way we want to contribute to the conversation doesn’t fit a predefined pattern — conventions of engagement that have been defined by non-autistic people.
We silence people when we simply don’t include them in the conversation — or when we drop out of the conversation when it becomes uncomfortable. Imagine a panel on women’s health that included no women, a community event on race issues that featured no minority voices, a symposium on accessibility that had no disabled participants. These seem ridiculous (even when a couple have indeed happened), but that’s the way we still handle autism. The conversation is about us rather than with us.
When it comes to autism “awareness,” we have culturally become comfortable with a shallow definition of the word. We have events showing that we acknowledge autism is indeed a thing. We can quote statistics and figures. But awareness isn’t enough anymore. Unfortunately, awareness has brought with it stigma and misinformation. We have to move past awareness to acceptance and cooperation, and the only way that will happen is by bringing autistic voices into the conversation.