Friday, October 26, 2012

Conversations Between Autistic Self-Advocates and Autism Parents - Part 1

Self-Advocate Elizabeth (Ibby) Grace's blog Tiny Grace Notes is subtitled "Ask an Autistic," and that is exactly what people do -- solicit Autistic insights from her. We asked if we could republish a recent conversation Ibby had with Tina, an autism parent -- to show that these conversations do happen, that they can be fruitful, and in the hopes that more such exchanges will happen.

This is part 1 of 2.

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Tina:

I have a question. I have a severely disabled son. He is nonverbal, is still in diapers, has self harming behaviors, hits himself in the face repeatedly and eats with his hands. I doubt he will ever progress to the point of living independently. I just can't imagine that ever happening as he's already 12 years old and only in the last year has he indicated that he understands what I mean when I ask him if he wants to go outside for some fresh air.

I get really tired of people saying how labels are bad. I mean when anyone sees him they get how tough it is and they use words like severe and low functioning, and they're right to, because he is. I don't see how that's a bad thing, it's an honest thing, from my perspective. Also people who seem so dead set against labeling are either able to write down their views (something my son cannot do) or they are parents of kids who are much farther along than my son. Truthfully I don't really care about the labels, but I do feel upset when people make such a big deal about labels, when it's really clear the severe label isn't one that fits them.

Also I'd like to see something that would make him able to go to the bathroom and not have to wear a diaper, use a utensil to eat his food and speak. If that's a cure, then I'll take it, if it's something else, great I'll take that. But I'm sick of everyone arguing about this stuff when they can WRITE and TALK!

You seem like a reasonable person. I'd love your views on all this. Thanks.

Ibby:

Thank you for the compliment of saying I seem like a reasonable person :)

Your question is interesting and very current right now. It is something I am indeed ready to talk more about and would like to think about some more. But before I do that, it is important for me to make it fit better with your family by knowing more pertinent details about your son, if you don't mind my asking. You will notice I almost always ask to know people better because I don't think what they cannot do gives me a good enough mental picture, enough to hold onto in my mind to feel like it is really possible for me to be able to talk about a person.

So your son, what does he love? What are some things that really seem to interest him or hold his attention? Another thing that I found really fascinating is that he recently started indicating that he knows what you mean when you ask him if he wants to go outside for some fresh air. How does he indicate this? And is the answer usually yes, or no? Are there other things he indicates to you? Are there things he can't stand? Things you can predict he would gravitate toward? I would just love to hear more about him, whatever you can think of that you don't mind telling me.

Then I will honestly tell you my thoughts on labels. And I do appreciate you taking the time to ask me about them even though I am a person who can write, and has written this:

http://www.tinygracenotes.com/2012/10/a-person-is-not-function.html

So I will do my very best to answer well and in a balanced and nuanced way.



A version of this post was previously published at http://www.tinygracenotes.com. The second part of this conversation will be published on Monday, October 29th.