Awareness is trendy. Everywhere you look people are raising awareness about things. Sometimes even things they know very little about.
For example, here’s a 2-minute awareness video titled “Listen” that is intended to “inspire positive change through a deeper tolerance and understanding” about autism (Trigger/Seizure Warning for flashing graphics, loud abrupt sounds).
Do you feel more aware? Do you understand what it’s like to be “a child who is non-verbal” and an “extreme case” (in the words of the producers)?
No, you don’t. How do I know this? Because the people who made that video don’t know what it’s like to be a nonverbal autistic child.
Neither do I, of course. I am not and nor was I ever a nonverbal child. Only a nonverbal autistic child or someone who was once a nonverbal autistic child understands what it’s like to live that experience.
I am autistic, however, and I know that my vision is just fine. The world is not blurry to me. People and objects don’t fade in and out of focus. I don’t see blank objects or perceive the world in flat 3-color animations.
But thinking in pictures! All autistic people do that, right? Well, no.
Ah, but this is meant to be an interpretation. Silly literal autistic me. Of course. Autistic brains are a metaphorical funhouse, an interpretative fever dream, leaving us with nothing but a “constant struggle to cope with the world” around us.
Do I sound angry? Because I am.
The video has over a thousand likes and I assume many more views. There are people who will watch it and assume they know what autism is. The creators did research, after all. They spent time “within the autism community.” Certainly they must be experts, or at least be presenting an accurate representation of what it’s like to be a nonverbal autistic person.
Unfortunately, they’re contributing to the very problem that they set out to solve:
Imagine living a life where the world you perceive and experience around you is entirely different than that of your peers, and your family — where you feel… misunderstood.
We feel misunderstood because nonautistic people keep telling our stories, without asking us for our input. We feel misunderstood because nonautistic people make assumptions about what it’s like to be autistic and then present them as fact. We feel misunderstood because, like the adult in the video, people are talking to us and at us and about us but they’re not listening.
I don’t need this kind of awareness.
And I certainly don’t need to be tolerated.
I need acceptance and I need for the voices of autistic people to be the ones speaking about autism.
Yes, I wish you would.