yes, autism defines me

I recently saw a local paper cover a Temple Grandin talk.

Temple Grandin is considered the most accomplished and well-known adult with autism in the world, having earned a doctoral degree in animal science, developing the facilities in which half the cattle are handled in the United States, and sharing about autism through writing and speaking.

However, Grandin says that having autism does not define her.

“Autism is an important part of who I am, but career comes first, autism second,” she said Friday at the Kids & Dreams Foundation’s Autism Conference in Kearney.

“Autism doesn’t define me” is a common thing I’ve seen people say. Supposedly, the benefit of “person-first” language, like “person with autism”, is that it “doesn’t let the label define the person.”

Grandin gave this example in her talk:

However, there was one piece of advice she shared that seemed to be universal: “Don’t get hung up on the label.”

She shared a story of when she traveled to the Kennedy Space Center, and met a variety of people who built and designed the technology to launch people into space that she guessed were “on the spectrum.”

There was one man she met who had Tourette Syndrome and designs launch pads. While having Tourette was a part of who he was, that wasn’t the primary thing, she said, that defined him, which she said was a good thing.

“So what would you rather be? Mr. Launch Pad or Mr. Tourette’s?” she asked. “As I walked onto this big American flag and now I’m seeing the launch pad, I get to thinking, ‘Mr. Launch Pad’s a whole lot more cooler. And the other thing I learned … (is) the right stuff rode the rockets. The misfits, the geeks and the nerds, they built the stuff.”

Stories like these and her own prove that someone with autism or any other condition can go on to be successful.

Maybe I’m being autistic and literal-minded here, but yes, autism defines me. I was missing a fundamental part of who I was without the label. Autism means something fairly specific. It’s the dimension of personality (or the mental quality) that autistic people have in common. Of course, people vary along many dimensions, but “autism” is the one autistic people share.

Its effect is pervasive. It changes pretty fundamental things about movement, perception, attention. It’s the basic wiring pattern of your brain, which everything else is built on top of.

My understanding of Tourette’s syndrome is that it’s a basal ganglia problem that causes people to say and do things they don’t want to do, things that aren’t them. I’m not aware of large numbers of people with Tourette’s syndrome who’d refuse a cure. There’s a difference.

When normal people say a label “defines” someone, they don’t mean that the label is accurate and descriptive. They mean that it defines someone socially, where they mostly agree that autism is a terrible shame. It isn’t, and it shouldn’t be treated that way. Making people stop treating it that way is the point of neurodiversity activism. When people discourage “defining yourself with labels”, what they’re saying is that the stigma is terrible (and they probably buy into it).

How can something that fundamentally changes how I socialize not be a defining trait for me, socially?