Susan's Blog

Thursday, November 10, 2005

Autism, Self-Representation, and Communication

An interesting thread came up on a favorite blog of mine. The question was about how there is a real need for the autism advocates to let the voices of autistics be heard, and not just think that we (parents of autistic children, advocates for the autistic) know it all. This is true, of course. Who better than autistics to represent the views and issues of autistics? But I also think that we all have to remember that there is a whole spectrum that falls under the autism umbrella, and that some autistics cannot speak for themselves. Other forms of communication should certainly be developed, that goes without saying!

The thread went on to blast me for arguing that parents are often the best advocates for autistics, if communication is an issue! The question asked of me was:

would you want men speaking for women?

How on earth are they the same thing, I wonder? Besides, yes, I believe that there are some men who are wonderfully empathic and capable of speaking for women. A sensitive person is a sensitive person, no matter the gender or the neurological wiring.

So I responded by saying that parents of autistic children are trying to help their children be heard, and I gave the example of how I drag Nat to speech therapy weekly. But the response to this was that

“speech” is not the same as communication, and that in fact some of the best autistic communication has come from autistics who don’t/can’t talk.

I was stymied by this. I then asked, if speech is not the way to go, then what is there? What am I overlooking? Shouldn’t I, his mother, be trying to give him as many tools of expression as possible? How else do I find out what is on his mind? I can’t read his mind!

What am I missing here?


Hi Susan :o)

I posted a little clarification on AD’s blog after I read back my comment. It basically said that I hoped you hadn’t thought I was saying you were adopting a worrying position.

OK, re: your last point. I am in no way attemptong to speak for or against Michelle’s experience. She and Amanda Baggs are amongst two of the cleverest people (regardless of Neurotype) that I’ve ever come across. Michelle is verbal whilst Amanda is not. I’ve talked online with them both and never felt that eiterh Amanda or I were unable to discuss things in the same way as Michelle and I were able to discuss things.

For me personally, I know of several autistic people who were glad of speech therapy as kids – including Gareth Nelson of AspiesForFreedom – and we try and ensure our child has as much Speech Therapy as we can get for her (her on ability to cope with it is the limiting factor alongside its rarity of availability in this country). As long as she displays a desire to speak she’ll continue to get speech therapy. At the same time, we use PECS and very recently she’s shown a strong desire (and quite a lot of skill) to get to grips with a keyboard and mouse.

Communication is communication – speech is only one aspect of communicating. I don’t think speech and helping people to speak is a bad thing (or we wouldn’t do it) but its not the be all and end all either.

Just my 2p :o)

— added by Kev on Friday, November 11, 2005 at 8:42 am

Hi Kev!
Thanks for this. It is great to keep reminding myself to think outside that ole’ box when it comes to my kiddos!

— added by Susan Senator on Friday, November 11, 2005 at 9:55 am

Hi Susan,

If you can find your way to Michelle’s QT board you will have her there as a captive expert. She answers all questions to the best of her ability.

try here

That might be her most recent post, but from there you can ask her a question.

She might not be able to tell you how to find out what your son is saying without words without knowing him. I think her point is that people communicate all the time. If you respond to the little things they are encouraged to communicate more.

Have you tried a communicator board thing… one is called a Mackaw, I think. The person punches a button and it talks, it can be programmed to say anything.

Michelle is not against speech therapy. Not at all, but the way some people’s brains are wired they can’t talk, or can’t talk when they really want to talk or can’t talk under pressure.

Did you read the case study that Dr. Gernsbacher wrote about. At first the young man couldn’t even point to a word on big paper taped to the wall, he couldn’t point like most kids because of dyspraxia, but he could use his shoulder muscles… eventually he was able to type, but it took a lot of help.
There’s a link to that case study as a pdf file half way down that blog entry.

It’s just an example of the different ways people communicate.

— added by Camille on Saturday, November 12, 2005 at 3:18 am

I’m guessing the person who wrote that some of the best autism communication is not speech meant written words. I am fascinated by what Tito Mukhopadhyay writes. He’s the autistic teenager from India, whose amazing mom, Soma, taught him how to write. He expresses what it’s like to be autistic and writes poetry. But he can barely talk at all.

— added by Wendy Gulley on Sunday, November 13, 2005 at 10:38 pm

Hi Susan,

Came across this blog-post Googling for something else. I have a suggested blog and blogger to read, regarding speech and alternatives to it: Joel Smith, a self-advocate from Wyoming. His website and blog are at — definitely worth a read, and I think it will answer some more of the “what am I missing here?” questions you had when you wrote this post (if you still have any of them).

— added by Phil Schwarz on Wednesday, October 11, 2006 at 10:22 am