Tuesday, February 21, 2017

Why I keep writing about Autism

On days like today, I am tempted to never write about Autism again.

Most Autistic people spend a lot of our lives having people try to figure out what is "wrong" with us and why, telling us that if we only tried harder we would be better at the things that challenge us and that the things we are good at or passionate about are irrelevant, trying to get us to change the ways we think and speak and move and the things we like and dislike, and telling us how difficult it is to understand us.

When we speak about or experiences we tend to be told that we are too sensitive, asked to listen to and agree with people's theories about where Autism comes from, lectured to about the non-existent "Autism epidemic,"  told that Autistic people are a burden on our families, or shut down by being told that we aren't "really" Autistic or that we are "high functioning" (a presumption based on our ability to use language)  and therefore aren't "Autistic enough" and therefore should defer to the wisdom of "experts."   The similarities between these responses and the things we have heard about ourselves all our lives can bring up a lot of relational trauma.   After one of these conversations, it often takes me a day or two to recover my capacities to write and engage.

And it is heartbreaking and frustrating that after four years of writing and speaking and teaching about Autism, the starting point of most discussions is still defending our right to exist as we are.  There is so much more about my Autistic experience that I would like to be sharing beyond convincing people that my existence is not a tragedy.

So why do I keep writing about Autism?

Because when I found the writing of people like Nick Walker and Rosie Guedes and Lydia X. Z. Brown it transformed my sense of who I was and of my place in the world.   And every once in a while I hear from another Autistic person who feels that same sense of recognition when they read my words, or a parent who gains a new empathy for their child from hearing about my experiences.

Because it is an act of intellectual self-defense.  After a lifetime of internalizing the idea that there is something wrong with my way of being, in order to not re-internalize those ideas I need to speak out when people repeat them.   Especially when they are people in my communities.

Because I know other people I love feel under attack when anti-Autistic messages are out in the world and not everyone is out to the people in their lives or has the emotional resources to speak out on a given day.

And, because, occasionally, people listen.  And every time one fewer person is repeating hurtful ideas about Autism, there is a little more room for Autistic people to carve out space to exist in this culture.

So I will keep writing about Autism, despite the cost.    But please remember when you engage me, this isn't an abstraction for me, this is my lif.


1 comment:

IrisWeaver said...

Dear Sean, you have helped change my understanding of autism. Please keep writing.

The things that get said to autistic people also get said to people who have been abused or talk about their trauma. It is maddening and utterly unhelpful. I know how awful those comments feel.

You are strong and brave to keep writing, and I will keep reading.