Wednesday, June 17, 2015

Acceptance and Privilege

An old picture of Flynn with a truck
I've written about my enormous level of privilege before, but not in the context of autism, specifically. 

As a parent, I try to read as many perspectives as I can, and there is a clear divide in our community between folks with severely affected children and my own perspective as a parent with a kid who would likely have been diagnosed with Asperger's Syndrome a few years back.

I've long been in the "accept my kid exactly as he is" camp, but perhaps this is just a reflection of my own privilege and that of my family.  Would I feel differently if my situation were different?  For example, a friend of mine wrote this wrenching Facebook post during Autism Awareness Month:
My son's form of autism is fairly "serious", so you won't hear from me that I wouldn't have him any other way, because you bet your ass I would, even though I love him fiercely, just the way he is. And yes, those two things can both be true.+
Her son is entirely non-verbal and has no alternative means of communication, despite having attended an extremely expensive private autism-specific school for several years.  He is likely to need one-to-one support for his entire life.

That's a hard reality to confront and accept.  Other friends of mine are also struggling heavily right now, as they are coming to terms with the limitations that may exist for their autistic children.

As for me?  I don't want to change my son and I'm not mad at autism. Autism is a very clear component of my child's personality - it doesn't define him, but it's sure as hell a part of who he is. The extremity of Flynn's interests, his behavior, his sensitivities, his need for structure and stimulation, all of these are incredibly intertwined with his autism.  There's quite simply no way to lay down a marker and say, here is where the autism ends and here is where Flynn begins.

As such, I've never been one of the parents in the "fuck autism" camp.  I don't want to get rid of his autism, and I never will.  I can't.

But maybe that is just a component of my privilege.*  Flynn can talk to me.  He can explain his interests and obsessions to me.  We can talk about them, and I can introduce new interests.  He can talk through his powerful emotions and difficult moments.  I have a way in. 

But what if I didn't have a way in and he didn't have a way out?  What if I was convinced he was intelligent, but I had no way to talk to him?  What if I couldn't even tell whether he was intelligent?

Don't get me wrong - a lot of the time Flynn isn't able to express himself.  Language can be hard for him, and his needs and feelings often aren't expressed accurately or fully.  But what if he didn't have a way to tell me anything, other than through behavior?  And what if that behavior was often obsessively repetitive, serving the need for self-stimulation and regulation rather than other needs?

Well, that would suck.  A lot.  And knowing how powerfully I love my son, I'd probably want to change that.

+This quote is shared anonymously, with permission from its author.
*None of this is meant, in any way, as an excuse for ableism in language or behavior.  Autistic kids deserve respect, no matter what, most of all from their parents.

No comments: