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May
21

Thursday Morning on the Train With Tony

I was riding the W train on my morning commute today when a school group boarded at Knox station. A young boy in the group sat across from me, immediately put his fingers in his ears, and stared out the window.

After the train started rolling, his legs bumped into mine, which caused his mother to slide them away and apologize to me. She handed him an elastic keychain, which he quickly stretched across his lap. A few moments later, his feet were once again crowding into my space. His mother was reaching to move his feet away when I interrupted her, “It’s okay. I’m on the spectrum, too.”

Her reaction was at once shocked and full of relief. It was as if she were completely exposed, her worst secret was obvious to everyone around her; at the same time, she was relieved because she didn’t have to put on appearances anymore and constantly apologize for whatever social faux-pas was being unwittingly committed by her son. “Thank you,” she said, and we began a conversation about her son, Tony.

Tony and his classmates were on a field trip to Union Station. I asked where they were going to visit while they were downtown, thinking they might go to the state capitol or the U.S. Mint or, really, anywhere from the plethora of choices in the heart of Denver.

“Nope,” said his mom, “we’re just riding the train.”

Then it occurred to me. Tony wasn’t the only Autistic kid in the class. The entire class was on the spectrum. The purpose of the trip was get acclimated to using public transit. The journey, quite literally, was the destination.

When I asked Tony’s mom how she liked the school, she said that she loved it but that she was concerned because next fall Tony would be enrolling in a public school for the first time. Her main concern was that Tony would be bullied at his new high school. I completely understand this fear, and I tried to assuage her worry by telling her that it has to be better than it was when I went through school.

“Awareness is definitely better than it was,” she replied, “but I’m still worried.”

Rightfully so. We’ve reached a point where everyone is aware of Autism, but it’s not exactly the rosiest of pictures. Thanks to organizations like Autism Speaks, Autism has been pathologized and demonized to be a plague on children and families. The “world leading Autism advocacy organization” has equated Autistics to missing children.

We need to move beyond awareness to acceptance. That’s the only way we’ll find a day when kids like Tony or myself can grow up without being bullied for being ourselves, bullied based solely upon our brain structure. So our brains are wired differently than “normal” brains and it causes us to act differently than the masses. Big deal. Accept it. We’re not missing. We’re not sick. We’d be perfectly happy if you would just let us be ourselves and not treat us as a disease.

Everyone is aware of Autism. The problem is that they’re only aware of Autism Speaks’s vision of Autism. In order to move on to acceptance, we need to change the awareness conversation. It’s not about blue puzzle pieces anymore. It’s about neurodiversity (rainbow brains don’t quite have the iconography of the puzzle piece, though). Everyone’s brain is different. While some of us are far more different than the generally accepted norm, it doesn’t mean that we’re lesser humans. And it damn well doesn’t mean we need to be cured.

 

Autistics Speak

The way to change what people are aware of is to present the actual, living Autistic point of view, rather than the pathologized point of view. Autistics speak. It’s time to listen to us.

I’ve come to realize that the fear of the unknown is really what drives most peoples’ views of Autism. As such, I should stop hoping for change and acceptance on a large-scale basis in the short term. All I can do for now is share my story with anyone who will listen, and hope that our conversation will make them aware of the real Autism and eventually open them up to acceptance. Small-scale, one-on-one advocacy in the hopes that someday the individual points will coalesce into wider acceptance.

I’ve never really felt as at ease in a conversation with a stranger as I did this morning with Tony’s mom. I think the reason for that is because she is aware of Autism, is accepting of Autism, and understands exactly what I am talking about when I talk about my brain. She isn’t Autistic herself, but as an Autistic ally, she gets it. It was refreshing to meet a parent who wanted her child to be himself, rather than simply trying to cure him of his Autistic mind. And that’s what I imagine broad Autism acceptance would feel like. Welcoming. Open. Unafraid.

Today was the only time I have ever wished my morning commute were longer. We only shared ten minutes on the W train but I felt an immediate kinship with Tony, like we had shared life experience without knowing each other. For a few brief moments, I felt connected with a non-verbal 14-year old boy with fingers in his ears. It made me wonder if this was the type of connection we each miss with the outside world, a connection with each other that NeuroTypicals take for granted.

Not isolated.

Accepted.

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