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WE ARE NOT YOUR COMMUNITY
In Response to Autism Society Canada’s Open Letter
by Michelle Dawson
Autism Society Canada (ASC) has recently posted an open letter http://www.autismsocietycanada.ca/pdf_word/OpenLetter.pdf . This letter contains many misrepresentations of ASC’s documented past and present statements and actions. It also seriously and dangerously misrepresents autistics. For these reasons, comparisons between ASC’s assertions and reality are necessary.
The reality: ASC has strong views about the worth, rights, and place of autistic people in Canadian society, as well as within their own society. These views have been and continue to be expressed in legal actions, in the support of legal actions, in ASC’s documents, on ASC’s website and the websites of its members, to governments, to governmental organizations, and to the media. Those who object to ASC’s views are simply ostracized from ASC’s "community".
The reality: If ASC considered autistics vital, ASC would not have waited until 28 years after its founding to say so. Instead, ASC has enacted this pretense only in the last year, after its federal funding was threatened. Letters from the Minister of Social Development, Ken Dryden, to myself and the Hon. Carol Skelton are evidence that ASC did not alter its façade of its own accord.
The reality: ASC recently and deliberately excluded all and any autistic people from participation in the development of Canada’s "Autism Research Agenda and Autism Strategy". ASC has only congratulated itself for this action. Peter Zwack and Lisa Simmermon were directly involved in the decision to bar autistics from this essential process. Jo-Lynn Fenton described step one in the process, the banning of autistics from decision-making at the Canadian Autism Research Workshop, as a "runaway success". A press release in which ASC states that the "autism community" was involved in the CARW is evidence that ASC does not genuinely consider autistics "vital" to the "autism community", and is prepared to banish us from this community whenever expedient for themselves.
The reality: In information currently posted by ASC, the existence of autistic people is described as "alarming" and "staggering", not as "vital" to anyone’s community.
The reality: ASC has segregated autistics into a powerless ghetto with no decision-making powers. This is not how "vital" members of a community are treated. This is instead how people with differences are silenced. These segregated autistics are handpicked by the member societies which have not in 28 years found autistics "vital" enough to be their representatives on the ASC Board.
The reality: Last year, David Vardy, ASC’s Newfoundland Board member stated in the Senate, "Autism is worse than cancer in many ways, because the person with autism has a normal lifespan." ASC has not apologized for telling autistic people that everyone would be better off if autism killed us. Similarly, Carmen Lahaie, President of my ASC member affiliate, stated in the media that a murdered autistic boy was "happy now". People who are "vital" to a community are not unapologetically characterized by the leadership of that community as better off dead.
The reality: The "largest group" of autistics is the result of autistic children and dependent adults, who do not have a choice, being included in the numbers. Many autistics seeking out their ASC member have been greeted with contempt, hostility, mockery, and condescension, and this has been documented. So equally has the gratuitous denigration of autistics by member societies.
The reality: If many autistics are at the Board level in ASC members, then ASC members are rife with autistics who approve of ASC’s exclusion of themselves from the CARW, and approve of ASC calling every single one of them a $2million burden on society; this last being ASC’s and all its members’ current legal position. ASC members would also have to be blessed with autistics supporting the view that they are a plague, that autism must be cured or prevented, that autism is like cancer and AIDS, etc. ASC is contending that autistics are heavily implicated in the denigration and segregation of ourselves; and that this denigration and segregation represent our true wishes.
The reality: Many of ASC’s members do not identify autistic people in their governance, and in some cases as even being in their organization. Here are examples, west to east:
My ASC member society has an autistic on its Board. His position is "permanent guest".
The reality: Apart from the three figureheads, ASC is a secret organization. In contrast, most of its members very properly disclose their Boards (and some their staff). Also, Autism Society of America discloses its Board, its advisors, its staff, and its volunteers. And the National Autistic Society (UK) discloses its national councillors, its regional councillors, its Directors (Board of Trustees), its chief executive and senior management team. Yet ASC has refused to disclose the balance of its Board, or its autistic consultants. It can be concluded that those who work with or for ASC do not want to be associated with it.
The reality: ASC has equated autism with cancer, and has combined this with declarations that we are a staggering epidemic. This is in order to make autism frightening and threatening to society—unless sufficient funds are supplied to prevent or fix us. Dr Zwack told both myself and my lawyer directly that he was aware of falsely portraying autism in totally negative and sensationalized ways. But he would not stop, since this would result in less money for parents. ASC has no compunction about forcing autistics to live in an "environment" in which the populace is terrified and appalled by us.
The reality: Public education by ASC had paid off. This can be seen in recent statements in the Canadian Senate, where a Senator describes autism as a "frightening disease", which must be combated. The need to treat the "symptoms" of autism before they become "permanent" is stressed. ASC is invoked, about the increase in "afflicted" autistics:
The reality: Human rights processes at the provincial level have been used by those who have ASC’s approval to ensure that autistics cannot fight for the rights other Canadians take for granted. It is impossible to fight an infringement of one’s rights when one’s nature is considered, in the jurisprudence, to be the equivalent of cancer and AIDS. Thanks to ASC-approved legal actions, this is the "environment" encountered by autistic Canadians.
The reality: ASC’s legal position is that autistics cannot participate in society unless we are fixed by one specific "medically necessary" treatment, that is, Applied Behaviour Analysis (ABA)-based Intensive Behavior Intervention (IBI), which must start early in life and, in the absence of "recovery", continue indefinitely. ASC’s legal position, and information ASC has provided to Health Canada, states that less than 5% of autistics who have not had this treatment can proceed—participate—in society.
The reality: Autistics are so freely denigrated, with no whisper of opposition from the society which claims to advocate for us, that it is assumed that we ourselves share this view of ourselves. Others, also educated via ASC, have assumed we have no feelings and therefore cannot be hurt. ASC’s "environment" is also one in which autistic voices are dismissed because everyone knows that if an autistic adult is not in an institution, she cannot be "really" autistic.
The reality: ASC has provided a very narrow and self-serving range of information, none of it to date from an autistic. For example, ASC has provided endless series of cost-benefit analyses, every one of them chalking up all untreated autistics as lifetime liabilities. ASC has also issued a series of alarmist and sensationalist press releases, most portraying autism as a tragedy/crisis, and most portraying ABA-based IBI as the one "medically necessary" treatment for autism. Only information supporting this treatment has been provided by ASC. Only information promoting the idea that autism is a medically "treatable" illness has been provided by ASC.
The reality: The information ASC has provided to "government agencies", as exemplified by ASC’s autism awareness material for Health Canada, is false, sensationalist, and entirely negative. For three years in a row, ASC has informed the government, those who make decisions about us, that we are hopeless, dangerous and destructive. ASC claims to be doing so on "our behalf". Mr Vardy’s testimony to the Senate is another example of this ASC objective at work.
The reality: Another organization ASC has communicated with is the National Alliance for Autism Research, an American funding body. This communication has resulted in NAAR’s agenda dominating Canada’s research priorities. NAAR’s stated agenda is curing or preventing autism. When an autistic Canadian wrote to his MP, concerned about the rights and portrayal of autistics at the federal level, he was promptly informed by his government representative that an expensive effort to "identify and prevent" autism was being funded. This kind of response can be traced to ASC’s communication efforts.
The reality: ASC needs handpicked autistics to support its positions, so that autistics who oppose these positions—including that autism equals cancer, that untreated autistics belong in institutions, that all untreated autistics are lifetime liabilities—will be silenced.
The reality: ASC’s Director-at-Large is the one autistic in Canada judged by ASC’s Board to best suit its purposes.
The reality: ASC has created a powerless segregated ghetto. Most modern societies have rejected the "separate but equal" pretence. ASC has not even reached this stage in the evolution of prejudices, being stuck at the "separate and unequal" stage.
The reality: ASC only values the opinions of those autistic adults willing to accept ASC’s place for autistics. This means accepting that ASC will at times expediently denigrate and exclude autistics, in addition to controlling, limiting, and correcting us—for our own good.
The reality: ASC has widely divergent standards as to what constitutes "respectful and inclusive" when it comes to autistics versus non-autistics. ASC would never tolerate parents being called a plague; or cancerous, diseased, dangerous and disastrous; or better off dead, or happy now that they are dead; or as belonging in institutions, or as albatrosses with a precise financial liability attached—not unless these parents are also autistic. Nor would ASC tolerate parents being excluded from Canada’s autism agenda/strategy, unless those parents were autistic. Nor would ASC tolerate having parents relegated to a powerless segregated consultancy group, unless those parents were autistic.
The reality: ASC’s leadership barred autistic adults from the most essential decisions about us, and in so doing instructed the "autism community" as well as society at large that this is how we should be treated.
The reality: ASC has disregarded or rejected completely the work of those many autistics whose work has been recognized internationally and nationally in the autistic community—this being the community of autistic people and our allies—as well as in the legal and research communities.
The reality: All of the seven cost-benefit analyses ASC submitted with its Auton application assume that all autistics deprived of IBI are a $2million burden on society, and that not one single untreated autistic contributes a dime. Further, ASC is sworn to support the Auton parents, whose position is that without early IBI, autistics are doomed to institutions and to being a financial drain on society for the rest of our lives. The Auton parents made no exceptions across the spectrum, and nor anywhere in its legal position has ASC.
The reality: In its Auton application, ASC puts the percentage of autistics it describes in 12., above, as less than 5%.
The reality: In a press release, ASC has described the fate of all early IBI-deprived autistics as a "bleak institutionalized future".
The reality: All autistics have different needs from non-autistics, regardless of how non-autistics choose to classify us to suit their agendas and priorities. That does not mean that we require "special treatment". That means we must have our differences and rights recognized as an integral part of society, just as the differences and rights of other minority groups are so recognized. It is not "special treatment" to supply autistics, however classified, with the assistance and information we need in order to succeed as autistics, no more than it is "special treatment" to supply non-autistic children with what they need in order to succeed as non-autistics.
The reality: ASC assumes that differences in apparent autistic "functioning" are—in untreated autistics—entirely due to inherent factors. Factors such as gross prejudices in society, which prejudices have been promoted by ASC and other autism "advocates", are ignored. How well do groups of people described publicly as an epidemic, tragedy, plague—or as belonging in institutions, or as having a cancerous nature—do in society? How well should we? Did aboriginals do poorly in Canadian society circa the residential school era because they were aboriginal? Would ASC characterize those aboriginals who did well in spite of a society entirely intolerant and contemptuous of them as "high-functioning"?
The reality: In its "Care with Terminology" section, ASC is compounding one apartheid with another. The former regime had non-autistics as superior and autistics as powerless and inferior. The superimposed apartheid segregates autistics from each other, and allows a selected few autistics to have worth since they are normal enough to pass (the less than 5% ASC allows for in its legal position and government information). Meanwhile, the rest must be subject to an intensive"medically necessary" treatment to fix their "seriously debilitating" condition.
The reality: This new apartheid poses the same problem as its model. Where do you draw the line, and who draws it? What percentage of black makes you black, not white? What differences are considered debilitating, and which can "pass" by non-autistic standards? In both apartheids, all judgments are towards the normal, which is white-is-good in the original and non-autistic-is-good in ASC’s version.
The reality: It is ASC’s obligation to delineate its standards for classification. Where would ASC classify me, a person with serious self-care and self-injury issues, a person who can no longer tie her shoes (though once could, with difficulty), cannot safely own a toaster, and has been locked up and been threatened with being locked up? Where would ASC classify an autistic who doesn’t speak, needs home care, is not reliably continent, has also severe self-injury, and has spent large parts of her life in institutions? Because this person has been dismissed as "high-functioning" by those who disagree with her writing, as have other autistics with similar and additional issues. We are all said not to understand real autism, and a great deal of expedient terminology has been applied to us in order to silence us.
The reality: Autistic people vary widely and across multiple dimensions, including time. ASC neglects to say when in an autistic’s life the person is classified and either is allowed to pass or is considered to be inevitably doomed without an arduous medical treatment. In reality, young non-verbal autistics who have a severely limited range of interests—perhaps for only one kind of material—and are therefore labeled "low functioning" are exactly the same autistics who, several years later, have developed speech or its equivalent and acquired a "high functioning" label. There is no intrinsic difference between these two autistics, who are the same person. And this outcome cannot reliably be tied to any currently marketed treatment.
The reality: The supposed divide between "high" and "low" functioning autistics has been called into question experimentally. It has been shown and argued that autistics cannot be accurately judged as to our intelligence or "functioning" by the criteria developed with "non-autistic" as the standard and ideal.
The reality: ASC, in a recent press release, has proposed the same treatment for all autistics. This is the basis of ASC’s cost benefit analysis portfolio:
Cost-benefit studies have demonstrated that if all children with autism were provided with early intensive behavioral intervention, the current annual cost in Canada of providing services to people with autism, which is estimated at $3 billion, will be cut in half.In another press release, ASC, which is here referring to the same treatment in the quote above, states that severity, age, and diagnosis are irrelevant when it comes to autistics requiring medical treatment:
This decision will go a long way to compel provinces and territories, such as Quebec, that have been unwilling to finally provide effective autism treatment to provide it regardless of severity, specific diagnosis or age.Also in a press release, ASC supports the idea that autistics who do not get "medically necessary" treatment by a certain age are write-offs, for whom families must be compensated:
A class action is ongoing in Quebec that is not only demanding that IBI be made available to all children with autism spectrum disorders but also requesting compensation for children with autism who have been condemned to a severe lifelong handicap because they have been denied medically necessary early intervention.In the same press release, ASC supports, as it has many times including in its Auton intervention, the Auton decision that depriving any autistic of early IBI is a violation of the autistic’s Charter rights:
In October 2002, the British Columbia Court of Appeals ruled against the B.C. government and established a clear precedent that it is discriminatory under the Canadian Charter of Rights and Freedoms for a provincial government to deny medically necessary fully funded IBI for children with Autistic Spectrum Disorder for all ages for as long as deemed beneficial by the child's physician.Finally, ASC’s public position is that early IBI is the only way to avert the natural fate of all autistics:
It is widely recognized that early intensive behavioral intervention can significantly improve the functioning of children with autism, which the BC Court of Appeal noted in its decision, and is critical to avoiding an otherwise bleak institutionalized future.ASC cannot now honestly argue that this treatment is optional. ASC’s education and legal efforts have resulted in media reports as follows, this one describing an ABA-based IBI for a school-aged autistic boy:
"We have two choices: either we pay or he regresses and we can't handle him and probably send him to an institution," Mr. Manuel said. "If it wouldn't be for these treatments, there would be no hope for them (autistic children)," he said. [source, New Brunswick Telegraph-Journal, April 23, 2004]The above being one of numerous possible examples. ASC itself in the media explained what ABA-based autism treatment is like:
But cost should not be an issue, said one expert at the Autism Society Canada who argues ABA should be funded as long as it is medically necessary under a system of universal health care.The above adds the information that all the autism, like all the cancer, must be eliminated before the treatment can stop.
The reality: ASC supports in its legal position legal decisions which equate autism, across the spectrum, with both cancer and AIDS. ASC further legally supports the position that without early IBI, only one in 64 autistics shows any improvement at all, ever. If ASC does not truly hold the position it has sworn in Auton, ASC should make a public statement renouncing this position. If ASC does stand by its legal position, ASC must explain how ASC proposes to allow options for children. ASC has to explain why, when it comes to catastrophically ill children, treatment in autism is optional, whereas treatment for, e.g., cancer or AIDS will be imposed regardless of the parents’ wishes, even if the child has to be apprehended. ASC has legally argued, by supporting the Auton parents’ position, the view that autism is a catastrophic illness, which, left untreated, results in a completely and likely dangerously dysfunctional, isolated, uncommunicative, and dependent human being.
The reality: Children cannot refuse treatment. To the contrary, autistic children across the spectrum raised in a society where, thanks to ASC-style autism "awareness", it is casually and constantly said that autism is just like cancer and that autistics if untreated deteriorate in institutions, will understandably become terrified of their own nature. They will be highly motivated to get rid of every bit of their autism, so as to survive their cancer and escape being taken from their homes and locked up.
The reality: ASC is claiming that if ASC generates and publicly supports legal positions in which all autistics are described in entirely negative ways, and that this view of autism is inscribed in Canadian jurisprudence, that this will have no effect on autistics who remain autistic, or on the human rights of autistic adults and children. This is like arguing that if it is established in Canadian jurisprudence that homosexuality is a catastrophic pathology medically "treatable" with an early IBI—which it was, historically, by Dr Lovaas—this will have no effect on the rights and status of homosexuals or those children considered "at risk" for homosexuality.
The reality: ASC now needs to explain which autistics are sick and which aren’t, which can and should be denigrated, and which shouldn’t, which are disordered and which aren’t. It isn’t autism that has "medicalized" itself. It is ASC which has pathologized all autistics. Proposing now, after ASC has its legal position delivered, that some few shiny examples are not sick, is blatantly dishonest. ASC must now explain where the dividing line is, as to who is diseased and who isn’t; who has cancer and who hasn’t; who must be treated until the autism/cancer is gone, and who has a "choice".
The reality: This is an evolution of ASC’s position that autism is a treatable disease, something that improves as you get rid of it, and something ideally which would be eradicated. This position has had consequences for every autistic Canadian. The consequences are equivalent to what would have happened had homosexuality remained a pathology, and Dr Lovaas’ early IBI recognized as proof that this pathology is treatable. In such a society, we would never have reached the point where gay marriage is being accepted in province after province. Instead, we would have parents marching to the courts to demand "medically necessary" homosexuality treatment, designed to produce a child indistinguishable from his peers. Homosexuals would have no rights, except to "medically necessary" treatment for their pathology. This is what ASC has accomplished for autistics.
The reality: When a human difference is classified as a disease and then declared treatable, those having this difference no longer have rights as themselves. An official in the Chief Commissioner’s Office of the Ontario Human Rights Commission could neither believe nor contemplate my concerns, because he knew autism was cancer, and you get rid of cancer. The only right guaranteed for autistic Canadians is now the right to treatment to stop being autistic.
The reality: ASC defines neither "effective" nor "improvement", but in the one "medically necessary" treatment ASC has supported in its legal position, effectiveness and improvement means that the autistic works towards resembling a non-autistic. As for one single program benefiting all autistics, it is worth repeating ASC’s position:
The reality: Strengths and weaknesses in ABA-based IBI, which is the only "medically necessary" treatment ASC supports in its legal position, are determined entirely by the needs and priorities of non-autistics. No autistics have been involved in the development or implementation of this treatment. No ethical review of this treatment, which is applied to clients who cannot consent, has ever been conducted. An ethical review would require participation by autistics, which has not happened. ASC allows, in "effective treatments and programs", only input from "parents and professionals".
The reality: This exemplifies ASC’s determination to make autism a disease, and to have discrimination against autistics defined as the failure to eradicate the disease.
The reality: The only treatment ASC has promoted, and fought to have funded, is ABA-based IBI. As has been repeated, ASC supports without reservation the Auton parents. The Auton parents rejected all treatments not based on Dr Lovaas’ work. Here are quotes from their written argument or factum:
It is submitted that the government’s longstanding and persistent refusal to fund what has been found to be both effective and medically necessary treatment runs contrary to the fundamental principle of protecting the children’s right to life and to health. [at para 65]
The reality: Added to the above is the predicted doom of all untreated autistics, this "fact" being one cornerstone of the Auton parents’ position, and one permeating ASC’s public statements to date. ASC promotes only one treatment, and insists that without it autistics are guaranteed gruesome fates as regressed inhabitants of institutions. Is ASC now saying they are kidding, and that these statements on its part are just another instance of ASC’s campaign to extract money from governments so parents can have "indistinguishable" kids?
The reality: The legal actions ASC supports have portrayed autistics as sick, disordered, devastating, defective; a cause of unimaginable sorrow, stress, and pain; condemned to 24 hour care; unable to communicate, learn, or participate; an insult to our own inherent dignity and that of our parents, a violation of our own psychological and physical integrity, and the psychological integrity of our parents; and so on. Not one good thing has been said about autistics as autistics in these cases, which hinge on ourselves being disasters and therefore meriting such an arduous, unlimited, costly treatment. ASC insists that our rights are being served by these cases, which have successfully replaced the rights we should have as human beings in Canada with the single right to one specific "medically necessary" treatment; this to intensively train us to pass for those Canadians who do have rights.
The reality: In ASC’s Canada, words like "improvement", "adaptation", and "highest potential" simply mean that every effort will be taken to try to make us normal. And this effort will never stop, since medical treatment will, in ASC’s Canada, be given to all autistics, cradle to grave, if that is what it takes to "improve" and "adapt" and achieve "potential".
The reality: When autistics in Canada have spoken out, we have been ostracized by ASC. The discrimination we face is based on the grossly prejudicial and entirely negative views of autism ASC has forcefully promoted in its past and present. Unlike other disabled Canadians, autistics have to deal with an organization which deliberately misrepresents, demeans, and belittles us and is now lying about this.
The reality: ASC should learn from Canadians with Down syndrome, who have been prominent in advocacy for their rights and dignity. Now imagine if the one DS organization claiming to represent people with DS promoted with all its resources the "treatment" of DS. DS is of course "treatable" via prenatal genetic testing followed by selective abortion. Imagine an organization promoting this "treatment" pretending they are interested in the rights of DS people. It is unimaginable. But this is what autistics face with ASC: an organization whose members promote the prevention and/or cure of autism; an organization which collaborates with a funding body whose goal is the prevention or cure of autism; and an organization which premises its policies on the view that autism is a treatable catastrophic disease.
The reality: Canada is a very bad place to be an autistic. Nowhere else has autism so forcefully been made into a cancer-equivalent disease—this being in our jurisprudence, along with the 90% of us across the spectrum who are in institutions. Nowhere else have autistics been so thoroughly mocked, degraded, demonized, and ostracized by a government funded national disability organization claiming to advocate for us. Nowhere else have all human rights for autistics been eliminated and replaced by the demands of some parents and their service providers to have autism become a medically treatable illness.
CONCLUSION: We are not your community
We are autistics and the allies of autistics: the autistic community. Some of us had great hopes for the open letter, our open letter, when it first was written more than a year ago. We saw parallels with other struggles for the most basic of human rights, for the most rudimentary dignity, where a turning point was necessary, where a stand had to be taken.
We politely asked, please hurt us less.
You ignored us, and now you have slapped our face with your dishonesty and hypocrisy.
It is not so hard to apologize when you insult people—when you insult them in ways that may put them in danger, as David Vardy did, as Carmen Lahaie did, as many others have—or when you bar, banish, and exile people based on their differences. You have not apologized.
It is not so hard to not denigrate us, or to be accurate about yourselves and ourselves, or to be respectful and constructive. But you have not chosen these possibilities. It is not so hard to include us, but instead you built a ghetto. You are proud of what you have done.
We are not your community. That is your decision, and your loss.
the time the above was written, some of ASC’s most offensive press releases
have been taken down. However, the accurate press release quotes above continue
to be representative of ASC’s position. ASC’s legal position remains unchanged,
and ASC continues to celebrate and promote its autistic-free White Paper.
One of ASC’s press releases can be found at http://www.beaudincom.com/autisme/nouvelle/communique_4.html . An archive of ASC’s
recent press releases (up to and including 2004), including those referred
to above, can now be found here http://web.archive.org/web/20040403214415/http://autismsocietycanada.ca/en/press_releases.html
|© Michelle Dawson 2004 | Published November 1, 2004|
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