Living With Autism

“What’s it like living with autism?”

It’s a question that’s often posed in publications, interviews, and news shows. On the surface, it looks like a question seeking understanding, but the context often belies that sense.

When I read or hear everything surrounding the question, the focus of the questioner is often on how the autistic person deals with the “burden” of autism or how they “overcome” it.  Sometimes it revolves around how much the autistic person does or doesn’t appear to act or speak like the questioner. The question carries with it an externalization of autism, as though it’s something imposed on top of a person’s experience of the world.

And with all of that comes an almost unconscious sense of condescension from the questioner – how awful it must be that autism keeps you from being like me.

“What’s it like to be so different?”

I perceive and experience the world through an autistic lens. I think and react in ways that are shaped by my autistic brain. It’s the only experience I know and the only one I’ve ever known.

I don’t “live with autism” other than in the sense that I live. I might as well ask you what it’s like living without autism?

It is true that I have experienced some pretty awful things in my life, and some of those I might not have experienced if I hadn’t been autistic. But those experiences were not caused by autism. People rejected and hurt me because I was different. Others saw that I was vulnerable and exploited or abused me.

I didn’t “live with autism” so much as I “lived with or among non-autistic people.” And collectively, human beings can be pretty horrible to people who are different or vulnerable.

My monsters were never imaginary. They were all too real.

However much I tried to meet the demands placed on me from living among people unlike me and however close I came to emulating their behavior, it was never enough.

The way I think, experience the world, and perceive reality is not something I “live with”. It’s who I am. I have spent my life “living with” an often hostile and frequently dangerous world of people who have more often rejected my place among them than accepted me.

And perhaps that would have been easier to handle if I didn’t care so much and so deeply. I’m vulnerable, at least in part, because I care.

There is one thing I wish non-autistic people could hear clearly and loudly.

I don’t live with autism.

I live with you.