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Fifteen Questions About Canadaís Autism Problem

2004 Oct 27

Dear Michelle, 

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. 


Ken Dryden


2004 Nov 16

The Hon. Ken Dryden
Minister of Social Development
Ottawa, Ontario

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: 

Finally, it would be appreciated if you could also provide me with a response that addresses each of the matters raised in Ms. Dawsonís May 3rd, 2004 letter [to then-Minister of Social Development, Liza Frulla], as well as the substance of her subsequent letter to the Prime Minister.  My May 3rd letter (also here http://www.sentex.net/~nexus23/naa_lf2.html), despite being in the hands of your department, has totally been ignored, and your department has refused to explain what happened or why. My letter to the Rt. Hon. Paul Martin provided evidence of government funded and enacted human rights violations. This too has been ignored, as has the pervasive misrepresentation, disrespect, and discarding of autistic Canadians. 

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:

The Autism Society of Canada plays an important roleÖ, acting as a catalyst for research and debate related to individuals with autism and their families. I want to underline what kind of catalyst ASC has been, while playing its "important role". Here is a representative sample of ASCís work over the past few years:


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:

I sold my house to pay for the program, my elderly parents gave up their retirement nest egg and I sacrificed the university education fund of my other son to pay for the program. Eventually, the bank refused to loan me any more for my son's medically necessary treatment and today I am still heavily in debt as a result. [source: Debates in the Senate, October 26, 2004] This is typical of media stories, which have escalated recently. Losing your house is no longer enough. The story must now be more compelling, with the future of entire families going grimly down the drain. Like ASC, media stories have underlined that autism ruins the marriages, careers, health, and sanity of parents, as well as their finances. Another parent is quoted by a Senator, about her autistic daughter: If my daughter had cancer she would be in hospital immediately and they would have doctors and specialists provided for her immediately. For us, we would have to wait at least 10 months to get her seen by a doctor and with this disability 10 months is too long. [source: Debates in the Senate, October 26, 2004] Here is one of the Senators: Twenty years ago, the Autism Society of Canada estimated that one child out of every 10,000 was afflicted with autism. A few years ago, the society estimated that the proportion of children with autism was one out of every 1,000. The Autism Society of Canada now fears that these numbers have become worse. [Ö]   Honourable senators, I need your help to raise awareness about this frightening disease. [source: Debates in the Senate, October 19, 2004] I could pull dozens of similar recent quotes, from the media and political press releases, from Hansard in Ottawa and elsewhere. Here is a political press release from a Nova Scotia MLA: Applied Behavioral Analysis ABA is an intensive behavioural therapy with years of scientific and practical experience behind it. It has proven to change the quality of life of autistic children. According to the Canadian Autism Society, ABA can cut autism costs in half and save $1 million over the life of person with autism. [source: http://www.maureenmacdonald.ca/html/press/Oct2804.html] Here is the Globe and Mail:  The therapy [ABA-based intensive behaviour intervention or IBI] is considered a wonder treatment for children suffering from the mysterious neurological disorder.  Still in the Globe and Mail, a description of an autistic child before the "wonder treatment": Öspeechless, anti-social, emotionless preschoolerÖ he lived in his own small worldÖ  And after more than three years of "wonder treatment" and "hundreds of thousands of dollars in funding": But even in the few months since Michael stopped receiving therapyÖhe has regressed. [source: Globe and Mail, Nov 13, 2004] Here is the National Post, where all autistics are sick, and IBI is what we need: By contrast, governments across Canada are fighting a bitter legal battle to ensure autistic children remain the only Canadians whose core health needs are not met by medicare. [source, National Post, Nov 10, 2004] Here is the New York Times (the parents are Canadian, and the entire article is about Canadian autism legal cases): Öparents involved in the suit contend that they have a constitutional right to have their children's therapy entirely paid for by the government, just as a cancer patient is coveredÖ [source: New York Times, Nov 8, 2004] All of the above statements can be shown to be directly inspired by ASC or by groups and legal positions ASC supports. All would meet the approval of ASC and its members. In not one of the above cases was any autistic person involved in the "debate" except as an exhibit. 

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, 

Öboth families caring for children with disabilities and individuals with disabilities are provided with resources to participate in public dialogue. Many autistic people are also parents of autistic children, and many parents and professionals have allied themselves with positions consistent with those Iíve expressed in the correspondence your department has treated as irrelevant. Iím not sure how often people who donít want money write to you, but I have never asked for money or whatever else you may mean by "resources". When I met with ODI in Ottawa, I paid for my own accommodation. Autistics and our allies have been very efficient in funding ourselves, providing tremendous resources (for example, janet norman-bainís extraordinary website which is recognized around the world for its excellence; the collaboration between Ms norman-bain and the American autistic Camille Clark to produce the superb and unprecedented Autistic Adults Picture Project) without demanding government money. 

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: 
a.  We want our voices to be heard in all matters which concern us. All matters having to do with autism concern us. 
b.  We do not want ASC to pretend that ASCís voice represents our voices. We want ASC to stop pretending to represent anyone but those who share ASCís extreme views, as represented in its public and legal positions, of autism and autistic people.
c.  We want ASC to accurately identify its government-funded autism agenda and strategy (as written in ASCís White Paper) as being the outcome of a process which barred all autistic participation.
d.  We want ASC to hurt us less, so we can proceed, as autistics, safely and freely in our work, in our communities, and in society. We want to stop being portrayed, by the extremist group of parents ASC truly represents, in ways that are damaging and dangerous to all autistics.
e.  We specifically want ASC to stop presenting itself in ways that have resulted in the now-universal false assumption (by the public, the media, and governments) that ASCís government-funded extreme views of autism are science-based and widely held, including by autistics.
f.  We want to remove the fiction that ASC is helping, representing, and advocating for autistics, while instead ASC is misrepresenting, exploiting, banishing, segregating, belittling, and demonizing most of us, according to ASCís wishes, and regardless of ours.

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: 

In autism, the public discourse, from which we are absent, has escalated to the point where all our talents and persistence, our brilliance and courage, will no longer be able to resist this trend.  You will lose access to our extraordinary abilities and youóyour ministry, your government, your countryówill find that no amount of money or recognition can ever satisfy those who seek to exclude, denigrate, and eradicate us.[source: http://www.sentex.net/~nexus23/naa_js.html]

Conclusion: Canadaís Autism Problem

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:

Good for Mr. Ivison for telling it like it is.  Iíll interrupt to say Mr Ivison, the journalist being praised by the letter-writer, is one of Canadaís many newly-minted ASC-style autism experts. He knows autistic people are sick and must undergo one specific "medically necessary" treatment, or else we are doomed. He sees no need to speak with autistic people for an article about our nature, rights, and treatment. Instead, he unethically quotes the words of a fictional autistic personóinvented by a normal personóto cleverly imply that autistics believe we are sick, and are disgusted that the government is not paying for treatment so we can become healthy, which means non-autistic. Mr Ivison is ASC personified.

Hereís the rest of the letter supporting Mr Ivisonís, or ASCís, work:

As a new(ish) father of a two-year-old, I don't know what I would do if we found out our daughter was autistic. Actually, I do know --we'd go broke, give up everything and be exhausted 24/7. [Source, National Post, Nov 13, 2004] Congratulations to ASC, to ODI, to SDC; to your predecessors, to Prime Minister Martin, to Mr Jacques, Ms Tunis, and the many others who have actively or passively played their part in making Canada a country in which autistics are notorious, feared, dreaded, unwelcome and unwanted.

Minister Dryden, my last question is what part are you going to play?

Thank you for your time.


Michelle Dawson
Montreal, Quebec

This letter was emailed to Minister Drydenís office on November 16, 2004

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