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Wow.(stunned)

Michelle. Incredible. Thank you.

Your point that autism research says more about the researchers themselves than it does about autism...

exactly so.

Your praise of Laurent Mottron...I echo, it.

Your anger at the system...absolutely appropriate.


Camille

As far as I am aware, the publishers are still awaiting chapters.... mine's in, but they didn't have Tony Attwood's last I heard.

Good chapter.... might put mine up there.....

would so much wish to send a copy to one diagnostician whom went to see......
who decided that autistics cannot love their children,
who decided that autistics cannot have empathy,
nor any self awareness.....

minna-waiting for the book

Thanks Michelle for that essay, which I like very much.
I was deeply touched and profoudly moved by "I identify totally with the cast-offs"; and the paragraph about Rosa Parks.
However I disagree with you about autism societies in so far as it applies to the National Autistic Society(NAS) in the UK. The NAS does welcome and represent autistic people. At least one autistic person, maybe two, is on the Board of Trustees; all members, whether autistic or not, have a vote on resolutions at the Annual General Meeting (AGM); autistic people speak in the business sessions of conferences and AGMs; on its website http://www.nas.org.uk there are several articles by autistic people and a substantial number of links to autistic people's websites.
The NAS is inclusive of autistic people and they can belong to it with integrity.

Edited by author 09-01-2004 05:01 PM
Hi Philip:

I often use the NAS as an example of the right general direction for an autism society to take, if it starts in the state Autism Society Canada is in.

It is still not by, about, for autistic people. Autistics are still in third person there. Are the goals of NAS the goals of autistics? You are in a better position to say.

I stand by what I say until autistics are represented equally with non-autistics in an autism society, as a matter of course, and that all materials publicly presented by this society, and all its decisions, have significant autistic participation. That when you phone or contact the NAS, you will be communicating with an autistic.

The presence of a "real" autism society could be detected if and when appalling stories about autistics, false and damaging information about us, were instantly countered by these societies. This distribution of false and damaging information should then be diminishing, having been effectively countered. Is this what is happening? What I see is an escalation.

I have seen the NAS counter public insults (though a non-autistic person was assigned to do this); and their involvement in the cases of the AS people locked up in secure facilities was very good.

But compared to for example the CNIB in Canada (Canadian National Institute for the Blind, which has a blind president), which objects when a television show suggests that the possibility of blindness is cause to contemplate suicide--and compared to the Canadian Down Syndrome Society, about which I've written extensively, the NAS is still in a primitive state.

Can you imagine the NAS putting a large colour advertisement in the Times (featuring an autistic adult, along with a non-autistic adult, captioned "Different Genes. Same Value.") stressing the contributions of autisics to society, and saying that intolerance must be cured, not autism? Because the CDSS has done the equivalent in Canada, and (they told me), they are just getting started.

The NAS looks good to me, too, but only in comparison with the pathetic situations elsewhere, of which Canada's is the worst. That doesn't make it an organization about and for autistic people.

I wouldn't dare speak for him, but I think the NAS's autistic board member might not quite entirely agree with your view, while pointing out that through his own hard work and determination (and humour and all round brilliance) he has been able to make headway in the NAS.

That's good, but given what is happening to autistic people, is that enough? Unlike ASC, the NAS is not directly harmful (compare their website to ASC's, and their position re intervention to ASC's) so far as I can tell. That's wonderful, and can (to my mind) be credited to autistics who fought in various ways (fighting against the autistic "quota" system, handing out leaflets at all meetings, etc). But this struggle is far from over. And of course in Canada it has already, so far as I can tell, been lost. I think you are telling me that the NAS has taken a direction towards a real representation of autistics, and I would agree with that (which is why I state the situation varies from country to country).

Edited by author 09-03-2004 01:54 PM
Hi Michelle,
I was very interested in your thought-provoking comments on the NAS. I'll have to look up its goals to see if they are those of autistics.
It maybe that I am too pleased with any crumb of representation and involvement given to autistics. At least the NAS gives more than a crumb, but the entree (I think that's the right word) course rather than a full meal. Better than nothing, but still leaves one hungry for more.
I agree wholeheartedly with your vision of what a "real" autism society would look like, however I fear that any autism society would be likely to be dominated by parents of autistic children, and that it will be a steep uphill struggle to make our vision a reality.
 On a scale of 0 to 10, with 0 as no place for autistics, and 10 as brilliant, fantastic, perfect for autistics; I would give the NAS a score of 4.
The CDSS colour advertisement in the Toronto Globe and Mail is marvellous. I've just seen it on their (CDSS) website.
In my message /m5, I should have thanked you for your book chapter and not your essay.

Edited by author 09-03-2004 09:22 PM
Hi Philip,

I agree with your score for the NAS, though some days it achieves a 5. At least they really are going in the right direction, and an autisic does not have to brace herself (and preferrable not have eaten for some time) in order to read their website.

I'm very susceptible to the presence of "crumbs" myself. It's hard not to collapse in gratitude when we are not totally excluded or denigrated. I try to fight against this feeling, which is a real problem in Canada. You almost want to say "thanks for not calling me a plague" or "thanks for not writing I would be better off if I had cancer".

ASC put its crumb on its website (a patched-in list of autistic strengths). It is working on some other crumbs. Maybe I'm learning, because in view of ASC's position at the Supreme Court, and their decisions about the Workshop/White Paper from which autistics were banned (and press releases celebrating same), these crumbs make me gag.

I saw that CDSS advertisement when and where it first appeared, in the Globe and Mail. I burst into tears. That was how I found out about CDSS.

Michelle...

"Can you imagine the NAS putting a large colour advertisement in the Times (featuring an autistic adult, along with a non-autistic adult, captioned "Different Genes. Same Value.") stressing the contributions of autisics to society, and saying that intolerance must be cured, not autism? Because the CDSS has done the equivalent in Canada, and (they told me), they are just getting started."

Would be nice, wouldn't it? But I fear you are right in agreeing with Philip's rating for the NAS; I doubt that - even with the hard work put in my a certain gentleman in that organisation - a full page advertisement (of the sort you mention) in the Times would ever appear.

And, even though it is heading in the right direction, that is still only a bite of a chicken nugget... and (with me, anyway) too small a bite can make me choke just as bad as too big a bite.

Edited by author 02-17-2005 09:00 AM
Although Michelle has posted on The Misbehaviour of Behaviourists comment board (m1077)about the book "Coming Out Asperger", see http://www.jkp.com/catalogue/book.php/isbn/1-84310-240-4, which is coming out "soon"; I'll post my musings about disclosure as it relates to Asperger Syndrome (AS) here.

I'll mention that although I don't believe there is any significant difference between AS and autism, and prefer to use the terms autism/autistic for all the autism spectrum, I'll use AS here in deference to the book's title.

Disclosure can be the diagnosis and subsequent informing by a person's doctor, pyschologist, psychiatrist or other professional of their AS, or of their child's AS: or the disclosure by the AS person to other people in their lives that they are AS.

Professional diagnosis of AS is neither a life or death medical necessity, nor completely irrelevant, offensive and unthinkable like 'diagnosing' for being gay or lesbian would be. I am one of those people who have discovered by self-diagnosis the truth of their AS, and found it liberating and enlightening. I prefer the term 'self-discovery to 'self-diagnosis'.

I have read that there are people who refuse to admit that they may be AS, and parents who refuse that their chidren may be, and avoid reading about it.

http://www.as-if.org.uk/reasons.htm has very good information and advice on diagnosis, and on disclosure by the AS person and by NTs.

I very much want to read this book, I may treat myself and buy it.

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