Please post further comments on Leadership in the Autism Community to following discussion board:
http://www.quicktopic.com/27/H/vJvhV4fDnBgw7

Hi Michelle,

I just sent you an email -- when I read the Globe article a while ago, I was thrilled about the message reaching a major paper!

Please email me at estee@wolfond.com regarding Canadian Autism Acceptance Network.

http://joyofautism.blogspot.com

Michelle, I appreciate your response. Canada is our friend and we welcome your signatures. On behalf of all the voiceless, wherever they may be, a heartfelt thank you. Robin - Danielle's Aunt

Edited by author 09-11-2005 08:24 AM
Re Danielle's Law again, I'm not sure Canadians can sign the petition. I saw no Canadian signatures in a skim-through. But if any Americans drop by, I hope they read this petition and consider signing it.

Thanks Helen. The "naughty child" (and the summoned-for-a-reprimand, etc) sure sounds familiar to me. I hope you have more success than I did. Apart from the autism societies, Canada's only dedicated "AS" organization still had no AS person involved in its governance, last I looked.

And AS organizations are a bit baffling to people like me who don't have an AS diagnosis (I have an autism diagnosis, in fact I have several...).

I've always wondered what would have happened had I encountered good faith in any of my interactions with the autism societies. I'm pretty sure what you're looking for would be in the way of good faith, of being considered as an equal, of not being dragged through a charade to satisfy someone else's needs, of not having condescension heaped on you. It doesn't sound promising, but I hope you encounter a bit of good faith somewhere.

I apologize for overlooking this comment board recently (I really am a very disorganized person).

Here's a direct link to information about Danielle's Law http://www.thefamilyalliance.net/WindsorHi...cleDaniellesLaw.htm

I certainly remember reading, some time ago (with anger and disbelief), David Holmes', now ex-President of Eden services, objections to this law being passed at the state level.

I've very happy to see Danielle's Law going to Washington. Thank you to Robin for providing that information. And sorry it took me so long to respond.

Hello Michelle. Thank you for this great article. I am the leader of the Adult Support Group in Australia's Asperger Syndrome Support Network (Qld)Inc. I have recently criticised our organisation for what many of my fellow members consider discrimination (to a lesser degree than in your case). I have been "Invited" to attend a committee meeting this coming week to "discuss" but I feel like I am just a naughty child being summoned to the Principal's office to be reprimanded and scolded. Although my group wish me well, we believe that I will be wasting my energy attending. Will let you know how it goes.

June 21, 2005, Press Event for Danielle's Law
Representative.Rush Holt's Statement:

"A measure of our society worth and compassion is how we treat our most vulnerable citizens. If we fail to do all we can to protect those who cannot speak for themselves, we cannot call ours a civilized society. My hope is that out of the tragedy that befell Danielle will come a renewed commitment to social responsibility.That is what this bill is all about; reaffirming our promise to care for those who are most at-risk."

THANK YOU FOR POSTING

Robin
"To the world you might just be one person, but to one person you might just be the world".

http://www.petitiononline.com/mod_perl/signed.cgi?rt123456

"DANIELLE'S LAW" GOES TO WASHINGTON PETITION

Please support Danielle's Law which was recently introduced in Congress by New Jersey Rep. Rush Holt. Danielle's Law requires staff who work with people with develomental disabilities or traumatic brain injury to dial 911 telephone emergency services in life-threatening emergencies, something that Danielle was not afforded. Danielle had difficulty breathing for over 14 hours and reported temperature of 105 degress, and because of the failure to call 911, when Danielle needed it most, she tragicaly died, like so many other helpless victims. Please visit Danielle's page off our website: www.thefamilyalliance.net YOUR SUPPORT IT VITAL. PLEASE SIGN OUR PETITION.

Edited by author 05-20-2005 12:08 AM
Hi Stacy, I'm not sure where to start. There's a long ongoing discussion hooked up to a different article on this website (the Misbehaviour of Behaviourists; at the bottom there are links to the archives as well as the current board which is here http://www.quicktopic.com/27/H/vJvhV4fDnBgw7 ).

I could also suggest joining the Yahoo group AutAdvo if you want privately to ask questions about the issues you are concerned about. There are other websites such as http://neurodiversity.com and http://www.autistics.org , Jim Sinclair's site http://web.syr.edu/~jisincla/ and the Autism Network International site which includes a history of this organization http://web.syr.edu/~jisincla/History_of_ANI.html .

I'm very glad your family is refusing to medicate and institutionalize your brother.

On the comment board I referred to above (and in the archives), there is a lot of discussion of communication in "non-verbal" autistics; and of "aggression" and what behaviour that is labeled "aggressive" might mean. There are pretty good discussions of last straw behaviours, self-defence behaviours (two overlapping categories I put forward to more accurately explain what is going on when you are autistic and your communication fails), self-injury, etc (there may also be a lot of stuff you find irrelevant).

I'm not sure what you want exactly for feedback, but you're very welcome to ask questions here or (I suggest) on the Misbehaviour board; it might then be possible to give you useful information or anyway things to consider.

Hi, I'm new in this discussion. I'm a grad student in Ohio and I'm currently doing research on autism and its political ramifications. My brother is autistic, non-verbal, sometimes aggressive, and almost 20. He still lives at home and my family has been urged to either institutionalize him or heavily medicate him, neither of which we want to do. I'm just now learning about the debate between ABA/cure and pro-autisitic societies. I'm just trying to learn as much as possible. I would appreciate any feedback and am just grateful to have found this site.

The comparison with the study of aging is very apt. What would have happened, had there not been an effort to alter the biased status quo? There are good examples to follow. I see no excuse for refusing, in the case of autism, to consider balanced and rational approaches which have a proven record both as good science and as good public policy.

This is an excellent topic and well-overdue in providing a 'scientific' approach consistent with humanistic values in the study of autism - and in sharp contrast to much of the 'science' that precedes it.

Here - http://www.spectrumsociety.org/facilitators.htm is an interesting and thought-provoking article about self advocacy for developmentally disabled people by Dave Hingsburger.

The link to the "Disability Cool" web site which Dave mentions favourably is http://www.geocities.com/HotSprings/7319/discool.htm.

Edited by author 05-09-2005 08:10 AM
Eslapion- Translate what and for what? My Intervention guide? If so, you may indeed translate it!

Too bad you won't let me translate it... well maybe one day.

Soon I hope.

Mike, I sleep regularly, about once a week....

Thanks Philip and Camille. And my boss, Ralph, for figuring out how to do things (I just noticed I missed one of your messages, Philip, through forgetting to look at one of the boards).

I agree with Kathryn re anonymity. Remember "J."? Or was it "J", without the full stop? And I don't mean people like Mike and John, who are not "anonymous", at all, in my books.

I *still* want Mike's fail-safe instructions for generating and lucratively marketing a new autism treatment posted somewhere, like on autistics.org, with full attribution, but life is not ideal...

As suggested, here's a complete list of discussion boards:
http://www.sentex.net/~nexus23/naa_qt.html

Regarding the anonymous site, in the long run, anonymity on the Internet is a sign of weakness, not of strength. I anticiptae that ultimately, as 20 years from now, it will be as socially unacceptable as appearing on the street in a mask (or in a white hood).

Quotations on leadership:-

From the Tao Te Ching by Lao Tzu

"The best of all rulers is but a shadowy presence to his subjects....
When his task is accomplished and his work done,
The people will say 'It happened to us naturally'."

"...those who would be above
Must speak as if they are below
Those who would lead
Must speak as if they are behind."

"The most effective leader takes the lowest place."

Carl Jung - "The true leader is always led."

Jean Chretien as reported in the Toronto Star 7 June 1984 -
"Leadership means making people feel good."

Michelle,

Permission to get teary eyed in public?

Thank you for sharing that.

Gratitude from the bottom of my mushy heart to Drs. Gernsbacher, Zeffiro and Mottron.


Camille - hates crying in the library

Hi Michelle,

Thank you very much for the article "Leadership in the Autism Community."

True leadership is accountable and doesn't hide behind a cloak of anonymity.

If you write slowly then it is a darn good thing you don't sleep regularly as there just wouldn't be the time!

We obviously have FEAT BC eyes on us...that is good maybe some parents will get the hell out before they waste their children's lives waiting for treatment-it is no secret that autistic adults are discriminated against by this group...in fact I think you could easily win a lawsuit against them--they are so zealous for their cause that I don't think they even realize that much of what they do is not only misleading but downright illegal!

Right on yourself Mike.

Will talk with my boss about maybe consolidating some of the comment boards...when we started out, the mere suggestion that I might seem in any way to be prolific (I write maybe slower than any person I have ever encountered) would have made us laugh out loud.

Right on Michelle!

You may want to consider linking all these discussion boards to one central one? Might free up some time...

I keep thinking about the goal of an 'indistinguishable child' and how misguided that is. There is an assumption that the main cause of social isolation for autistics is autism. So if I'm not autistic then I should be free from social isolation-right? Wrong!

The cause of social isolation for autistic adults is prejudice, fear and loathing from the public. Indistinguishable children grow up to do things like the high school shooting in Columbine...the BTK killer was indistinguishable from his peers too.

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