Susan's Blog

Thursday, November 20, 2008

You Don’t Need To Blend In To Be Real

I was working on the last chapter of my book, where I talk about parents’ recommendations for the future, and a young man with Asperger’s wrote to me, asking if I’d like his opinion. I am so glad that he did that, because it got me thinking again about Nat and wondering about the world from his perspective. I guess I had been thinking about how stimmy he has been lately, and I was now feeling a little guilty about letting him be that way. You know, aren’t I supposed to be trying to make him as “functional” as possible? To blend in? For that is what I’ve heard many times, from educators and others.

And suddenly, after reading what this young man wrote to me about how nonverbal autistics need more tools to help them communicate and to help the rest of the NT world to understand them, I was so ashamed. I thought of Amanda Bagg’s video, and watched it again. I had a lump in my throat watching her familiar movements, and it made me miss Nat so much, and then I was so horrified at myself for having momentarily lost what is most important: letting Nat be Nat. Amanda shows herself, throughout her video, going through every one of the five senses, interacting in one way or another with something in the room, rocking and looking veyr much the way Nat does when he is doing his thing. She says, (and I’m paraphrasing, and I hope this reference is okay with her) “Ironically, when I interact with every aspect of my environment, it is called ‘being in my own world,’ but if I limit my responses to only a limited few things, I am thought to be opening up to the world.” She also says (paraphrasing again) “My inability to speak in your language is seen as a deficit, whereas your inability to speak in mine is seen as natural.”

Watch this video and you will, hopefully, really feel what I am saying.


Jim Sinclair’s work and presentations on boundaries serve as a compelling and practical compass for sorting out which kinds of behavior we should be asking individuals to change, and which kinds we should be asking (no, *requiring*) society to accept.

It has a great deal to do with whether legitimate boundaries are being violated.

Compare hand-flapping (that quintessential autie stim that so much energy is invested into extinguishing) with screaming.

Screaming violates a sensory boundary for others. Sound travels in all directions, and can’t be selectively filtered out (without specialized equipment).

Hand-flapping, OTOH, violates no such boundary. You don’t have to look at it. An attempt to posit a boundary of the form “I don’t want to have to look at behavior I consider weird” is morally defective: semantically equivalent to “I don’t want people with racial features I don’t like swimming in the public pool I use”.

Requiring eye contact, when other solutions obtain for the problem “how do I know you are listening to me”, is also a boundary violation — in the other direction.

This very simple notion can help sort through quite a lot of questions about what kinds of behavior need to change, and what kinds don’t.

It’s not the only metric to use, of course. Another critical metric is *safety*: does a behavior put people, property, or the environment at risk?

But so much can be made clear and consistent by identifying the boundaries involved.

Clear understanding, explanation, and expectations regarding boundaries, is fundamental to a pro-self-advocacy, pro-neurodiversity approach to child-rearing — autistic and nonautistic — and to living life harmoniously.

— added by Phil Schwarz on Thursday, November 20, 2008 at 10:49 pm

This is awesome. It kinda makes me want to scrap ABA. It’ll be over within the next six months anyway. I’ve never been okay with the idea that my kid is so separate from anyone or anything. I’ve never seen anything wrong with the flapping either. This video is a neat confirmation of that. -Tina G.

— added by Anonymous on Friday, November 21, 2008 at 9:25 am