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AUTISM AND EXTREMISM IN KEN
2004 Oct 27
I am writing in response to your e-mail correspondence sent to the Right Honourable Paul Martin on July 28, 2004 which was forwarded to me for my consideration. Please accept my apologies for the delay in replying.
I have reviewed the documentation you and Ms. Carol Skelton provided. I would like to re-affirm the commitments I made in my letter to Ms. Skelton and to assure you that your concerns are taken seriously. You have raised many important issues that provoked serious thought and discussion. I am committed to reinforcing the importance of including individuals with autism in discussions on future priorities.
As you are aware, departmental officials are working with the Autism Society of Canada, encouraging it to take a more proactive approach to including people with autism and in the discussions, the organization itself has made a priority to support greater involvement of people with autism in its governance and operations. I can assure you that departmental officials will continue to work with the organization in this regard.
Finally, I would like to take this opportunity to recognize your ongoing efforts to raise awareness about autism and in articulating the voice of people with autism in Canada.
I appreciate you bringing these matters to my attention.
2004 Nov 16
The Hon. Ken Dryden
Dear Minister Dryden:
Thank you for your October 27, 2004 response to the letter I wrote to Prime Minister Paul Martin (July 28, 2004). I have also read your response to the Hon. Carol Skelton, which is here http://www.sentex.net/~nexus23/moc_skdr.html.
Ms Skelton wrote:
I wonder how many more questions I will have to ask, how much more evidence I will have to provide, how many more issues will accumulate and proliferate, how many more lives will be diminished or crushed by intolerance and hatredóbefore a leader steps forward and finally takes a stand against the ostracism of autistic Canadians.
As you have noted, ASC has recently found a place for its consumers, in a powerless, segregated, supervised ghetto. My first question is whether you approve of ASCís actions in this regard, which are accurately described here http://www.sentex.net/~nexus23/naa_one.html. As in my letter to the Prime Minister, actions taken by your department are also reported. My second question is whether the actions of your department have met and continue to meet your standards as to how autistic Canadians should be treated.
My third question is: are you or your government going to apologize? I have twice asked for an apology at the ministerial level for statements made by the person in charge of Canadaís disability agenda. Deborah Tunis, ex-Director General of the Office for Disability Issues (ODI), wrote these profoundly offensive statements on behalf of your predecessor. As Iíve accurately reported, she has since been offensive on her own behalf. And if you are unwilling to apologize for your departmentís denigration of autistic Canadians, you cannot expect us to be heartened that "departmental officials are working with the Autism Society of Canada". It was your Senior Ministerial Advisor, Claude Jacques, who impressed upon me with memorable rudeness that my concerns amount to an annoying, worthless, ridiculous waste of time.
This accords exactly with ASCís view, as you can read here http://www.sentex.net/~nexus23/naa_ascd.html. I imagine Mr Jacques and ASC would get along rather well. To further bring you up to date, ASC has recently issued an open letter. Iíve responded, here http://www.sentex.net/~nexus23/naa_asol.html. Apart from its lack of openness and honesty, ASCís open letter brims with ASCís satisfaction with its own actions and decisons to date.
Minister Dryden, in many ways, ASC has been a tremendous success, and my fourth question is whether you understand the nature and consequences of this success. ASC has used funding from your department to incite fear and dread of autism, and to promote one specific "medically necessary" treatment for all autistics. In your response to Ms Skelton, you wrote:
I suggest also that you obtain ASCís application to intervene in Auton at the Supreme Court, since this an official record of what ASC has doneócomplete with an affidavit from the Presidentóand contains ASCís portfolio of cost-benefit analyses. These represent ASCís core policy position, in which all autistics untreated by one "medically necessary" treatment are written-off lifetime liabilities. That includes me. To ASC I am just another $2million drain on society.
ASCís public and government education campaign has resoundingly paid off. The fight for one specific "medically necessary" autism treatment in Canada is now constantly in the headlines. We also now have Senators spreading "awareness" on Parliament Hill, where autism is described as a "frightening disease" which must be combated at all costs. A Senator quotes non-autistic parents who know that only one "medically necessary" treatment can save their sick autistic children. These parents elaborate the ruin autism has brought to their families:
Minister Dryden, ASC does not object when autistics are left out of the debate, or when we are portrayed in dangerously negative ways. Instead, ASC had been a leader in equating autism with known-to-be-fatal, universally dreaded diseases, and in describing the existence of autistics as frightening. ASC has also set an example by publicly banishing autistics from important discussions and decision-making.
In spite of ASCís fine words in its open letter, a few months ago, ASC went to the Supreme Court and did not at any time mention that autistics should have been involved in a six-year legal process determining our future in Canada. ASC submitted the lengthiest application to intervene of all the Auton interveners. Nowhere in ASCís hefty Motion Book is there even one word about the essential role of autistics in making decisions about autism research, services, and treatment. In its Auton written argument, ASC claims more than once that those requesting ABA interventions are autistics; that we ourselves are demanding "medically necessary" treatment for our illness. ASCís factum also does not waste one word on the implications of the absence of autistics from an autism human rights case. This does not stop ASC from claiming to represent what is good for us. And ASC unconditionally supports the Auton parentsófor whom autism is a cancer-equivalent affliction requiring eradication, and for whom one autistic is one too many.
Apart from being a leader in portraying autism as a treatable disease, ASC has deployed a thesaurus of sensationalismóstaggering, alarming, crisis, tragedy, skyrocketing, frightening, epidemic, plagueóto ensure all Canadians are scared of autistics. Everyone now knows that autistics deprived of one "medically necessary" treatment belong in institutions. Everyone now knows that if an autistic progresses at all, this must always and only be due to an IBI program. Even if gains are minimal, unsustainable, and arduously achieved, the IBI program must continue for fear the child will "regress". This is because everyone knows that outside of these programs, autistics naturally deteriorate and are doomed. Everyone now knows that untreated autistics, myself included, are non-contributing liabilities depleting the nationís finances. Minister Dryden, this is how autistics experience ASCís "important role" as a "catalyst". My fifth question is, do you, like ASC, believe this is good for us?
In the list of links above, I included a press release about ASCís autistic-free autism workshop and White Paper, to show that ASCís "autism community" does not include autistics; but this also highlights ASCís approval of NAAR. NAAR is a parent-run American funding body whose stated mission is to prevent or cure autism.
My colleague, Ralph Smith, wrote to his Liberal MP recently, expressing concern about the inaccurate and irrational portrayal of autism at the federal level. He was promptly assured that a program working towards the prevention of autism was being funded. This sequence of correspondence is posted here http://www.sentex.net/~nexus23/tap_red.html. More recently, my Liberal MP put her prestigious stamp of approval on a press release (see http://www.cihr-irsc.gc.ca/e/25229.html) in which autism is described as a "devastating disorder" and NAARís dedication to curing and preventing autism is promoted.
NAAR is an organization which has no autistic participation. NAAR has claimed it has "made a dramatic impact on the autism research landscape in Canada." From the evidence above, NAAR seems also to be dictating or at least influencing Canadian government policy. ASC brought NAAR to Canada, this being ASCís way of promoting the prevention and cure of autism. I have another question, my sixth. Can you tell me if it is now your governmentís policy, as it is ASCís, to promote prevention of the existence of autistic people?
Minister Dryden, none of ASCís core positions, as reflected in its public work and its legal positions, is science-based, much less ethics-based. ASC has only selectively and uncritically provided limited information to support one specific view of autism and one specific "medically necessary" treatment.
ASCís positions are extreme. They are characteristic not of autism societies, but of FEAT (Families for Early/Effective Autism Treatment), which is a movement demanding "effective" treatment for all autistics. In Auton and elsewhere, ASC argues repeatedly for "effective" autism treatment without once defining "effective". This is because "effective" is assumed to mean "effective in making the autistic resemble a non-autistic, regardless of financial or personal cost".
The central tenets of both ASC and FEAT are, first, that autistics are sick and inherently defective and doomed; and second, that "effective treatment" with the goal of working towards becoming normal is our only possibility. Both ASC and FEAT groups promote and pursue this one possibility vehemently to the exclusion of all other possibilities. My seventh question is whether you, your department, and your government agree with this view of autistics and our possibilities in Canadian society.
FEAT groups are overtly hostile to those who promote the value of autistics as autistics. They insist, as ASC recently has, that autistics who can speak or write, and express positive views of autism, must be ejected from the real debate. Such autistics, they claim, fail to understand the real issues about real, "debilitating" autism. Both ASC and FEAT demand that all autistics must be identified early, then supplied with one "medically necessary" treatment starting in the first years of life and continuing indefinitely or until we "recover". At the same time, both ASC and FEAT dismissively contend that if autistics donít want treatment for our catastrophic disease, we can just say no.
Both ASC and FEAT groups take the position that when all autistics are demonized, in order to present a compelling case for one expensive autism treatment, this is good for us. Both entities deny that autistics may have any human dignity or emotions worth considering, or any interests at all worth protecting. Neither sees us as sufficiently human to experience consequences when truly horrific portrayals of autistics are propagated in the media and enshrined in the law.
I was firmly told by Ms Tunis that ASC is being funded on the basis that it is a group of parents fighting for early behaviour interventions for their autistic children. I agree with this description of ASC, which is the description of a FEAT group, not an autism society. In his unforgettable way, Mr Jacques confirmed that Ms Tunisí statement is the only explanation for ASCís funding I will ever get. My eighth question is, can you confirm this explanation please, or has your department repeatedly lied to me?
The record of ASCís actions amounts to a campaign to frighten the public and governments into funding one "medically necessary" "effective" treatment for all autistic Canadians. There is no evidence ASC has done anything else, except promote the prevention and cure of autismóthese also being ultimate goals of FEAT groups. As Iíve written before, ASC has as one of its provincial members a FEAT group. Two ASC members funded a FEAT groupís intervention in Auton. One of ASCís members uses for its "source material" not the website of an autism society, but the website of a FEAT group. And one of ASCís members is interchangeable with its corresponding provincial FEAT group, the autism society serving as a platform for FEATís agenda. My next question, number nine, is when is ASC going to be forced to change its name and public presentation to reflect its nature, its function, and its federal funding? If you oppose such changes, my tenth question is why?
My eleventh question: why have the issues Iíve brought forward been ignored? I have provided evidence in quantity. I have made minimal, inexpensive or cost-free requests as to how to mitigate the harm which has been and continues to be done. Recently, I compiled a document composed of all the responses I have received from your government. Not one of them indicates that any of the great quantity of evidence I have provided may be worth considering. The assumption that autistic people, and our many allies, cannot comprehend what is good for us glares down from every inadequate, dismissive, disrespectful, contemptuous, insulting, and/or offensive response.
Minister Dryden, in your response to Ms Skelton, you mention,
We are asking that ASC present itself
accurately, in order to mitigate the harm ASC does, and we have asked this
all along. Here are some other ways of stating what we have already stated:
These are reasonable and modest requests, made consistently for more than a year now, here adjusted slightly to cope with the escalation of rhetoric and demands accurately predicted, Minister Dryden, in the original open letter I wrote a long time ago, when your department was still a ministry:
ASCís core policy positions are in direct violation of what we think of as Canadian values. By successfully promoting false, biased, and sensationalist views of autism, ASC profoundly violates the equality and dignity of autistic Canadians and puts our lives, health, liberty, security, and future at risk.
Minister Dryden, does ASC meet your own standards? Is this what you want for autistic people in Canada? Would you tolerate this kind of treatment for any other Canadians? Those are questions twelve, thirteen and fourteen.
There is already an effort to have a national autism medical treatment program. This program would be premised on the "fact" that all autistics of all ages are sick and require medical treatment until we no longer are sick. A petition demanding changes to the Canada Health Act, to make ABA-based IBI "medically necessary" for all autistics, may soon be tabled in the House of Commons. Everywhere there are efforts to find a final solution for what is portrayed as Canadaís autism problem: the unwanted existence of autistic people.
I am asking you to recognize that Canadaís real autism problem is not located within autistic people. Canadian society is moving inexorably towards embracing the worst kind of intolerance, with the worst consequences available. This is intolerance of human difference as government policy: intolerance approved of, paid for, and mandated by the state.
Minister Dryden, my response to you, which underlines ASCís success in imposing its extreme views of autism on Canadian society, was inspired by a recent letter to the National Post, which begins:
Hereís the rest of the letter supporting Mr Ivisonís, or ASCís, work:
Minister Dryden, my last question is what part are you going to play?
Thank you for your time.
|This letter was emailed to Minister Drydenís office on November 16, 2004|
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