What Autism Means to Me

When asked to write about what autism means to me, I jumped right in. I had a metaphor ready, and I set my fingers to the keyboard. But everything I typed in my first draft was no good. So, I tried to look at it from another perspective. Then another. Before I knew it, this simple question gave me a serious case of writer’s block. It seemed that no matter what I wrote, someone would take issue with it. Somebody would angrily declare, “That’s not what autism is to me!”

And he’d be right. Autism can be described. But it refuses to be defined. That’s because autism will never mean the same thing to two people. Especially if those people are coming from different perspectives. Parents vs. teachers. Grandparents vs. parents. Science vs. conspiracy theorists. Parents of “low-functioning” children vs. “high functioning” self-advocates. The media. Public perception.

It’s a lot of cooks in the kitchen. Their problem is that they can’t all agree on what they’re cooking. They all want different things. They all approach autism from their own subjective experiences. They observe autism from their respective places and report back to the world – which constructs its concept of autism from these reports. And that is problematic. (This article is continued where I’m guest posting today at A Dog for David…)

3 thoughts on “What Autism Means to Me

  1. You shouldn’t worry about your description too much. Everyone with an ASD is different, so it’s likely that our ideas about autism are different. And sometimes it can feel like it’s autism vs the world, which can become overwhelming. Besides asking someone “what autism means to them” is an incredibly difficult question to answer.

  2. I’m going to go read the rest of it but wanted to comment here. I think you’re exactly right and that often, what you’ve said about trying to define it is part of what makes it hard for parents like me who are fairly new to the world of autism. My son has been diagnosed as ASD but not autistic (huh?), receives ABA therapy in an autism classroom but has a developmental pediatrician who is impressed that he makes eye contact with her, so she thinks he’s not. Guess he’s high-functioning? His language is extremely delayed though…and the words he does have are very difficult to understand…
    Thanks for writing about this!

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