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In Response to Autism Society Canadaís 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 ASCís documented past and present statements and actions. It also seriously and dangerously misrepresents autistics. For these reasons, comparisons between ASCís assertions and reality are necessary. 
1. ASC writes: "We are open to feedback from our community."

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 ASCís documents, on ASCís website and the websites of its members, to governments, to governmental organizations, and to the media. Those who object to ASCís views are simply ostracized from ASCís "community".
2. ASC writes: "ASC considers people with Autism Spectrum Disorders (ASD)Öas vital parts of the autism 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 faÁade of its own accord.

The reality: ASC recently and deliberately excluded all and any autistic people from participation in the development of Canadaís "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 anyoneís 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, ASCís 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.
3. ASC writes: "Autism societies and their member groups in each region represent the largest group of people with ASD in Canada and most include the active participation of adults with ASD, many at the Board level."

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 ASCís exclusion of themselves from the CARW, and approve of ASC calling every single one of them a $2million burden on society; this last being ASCís and all its membersí 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 ASCís 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:
a. Victoria Society for Children with Autism: "The Society's broadly based membership includes parents and foster parents of persons with autism as well as teachers, special education assistants, child and youth care workers, speech, physical and occupational therapists, social workers and other professional and non-professional people." Also: "Members come from all walks of life.  Some are parents and family members, others are caregivers.  Still others come from the professional community (including Special Education Teachers), while some are friends of families.  All are welcome at VSCA." Also: "VSCA endeavours to provide, through our monthly meetings, newsletters & website, a forum for parents and professionals to communicate on the many issues surrounding autism and a network for parent and family support."
b. Autism Society British Columbia: "The Autism Society of British Columbia (ASBC) was started in 1975 and is a parent based and directed society providing support to individuals with autism and their families in British Columbia and Yukon."
c. Autism Society Central Alberta: "Öis a parent support and information group for families with a member diagnosed with Autism or a related disorder."
d. Autism Calgary Association: "Purpose: Provide support to families of persons with Autism Spectrum Disorders; Resource for interested professionals, educators and care givers; Provide single voice for families of persons with Autism Spectrum Disorders".
e. Saskatchewan Families for Early Autism Treatment: "SASKFEAT is a provincial organization made up of families, friends and dedicated professionals who have a genuine interest and concern with the well-being and development of individuals with autism or within the autism spectrum." Ms Simmermon is SASKFEATís spokesperson.
f. Autism Society Ontario: "ASO is guided by a Board of Directors, composed primarily of parents of individuals with autism, plus a host of volunteers and respected professionals who provide expertise and guidance to the Society on a volunteer basis."
g. Autism Society Nova Scotia: "We are interested in making connections with parents, professionals, societies and other groups that make up the autism community throughout Nova Scotia."

My ASC member society has an autistic on its Board. His position is "permanent guest".
4. ASC writes: Lisa Simmermon, the President of ASC, is our primary spokesperson and she can be reached at info@autismsocietycanada.ca. Peter Zwack, first Vice-President and Jo-Lynn Fenton, second Vice-President, are our other spokespersons and they can be reached at info@autismsocietycanada.ca as well.

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. 
5. ASC writes: "We work to ensure that people with ASD live in an environment that supports their well-being and enables them to reach their full potential as participating members of their communities."

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 societyóunless 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: 
    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.
The reality: Countless media stories describe autistic people as "devastating", "aberrant", prone to aggression, an absolute disaster, as completely destructive of our families and possibly the economy, as having to be "grabbed back from the abyss of institutionalization". Letters to the editor describe the birth of an autistic child as a "crime", and autism as a "terrible disorder", and there seems to be a competition to see who can publicly complain most about their autistic child. Anyone proposing that autistics are good is deluged with outrage, including from ASCís entourage. Much of this pales against what has been said by those supported by ASC in legal cases. The outcome of this kind of autism awareness is an "environment", nurtured by ASC, in which autistics are dreaded and feared, and mourned on discovery as though lost or dead.

The reality: Human rights processes at the provincial level have been used by those who have ASCís approval to ensure that autistics cannot fight for the rights other Canadians take for granted. It is impossible to fight an infringement of oneís rights when oneís 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: ASCís 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. ASCís legal position, and information ASC has provided to Health Canada, states that less than 5% of autistics who have not had this treatment can proceedóparticipateóin 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. ASCís "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.
6. ASC writes: "The objectives of ASC are to: Provide a wide range of information and general referrals to the public regarding ASD"

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.
7. ASC writes: "The objectives of ASC are to: Communicate with government agencies, and other organizations on behalf of persons affected by ASD and their families"

The reality: The information ASC has provided to "government agencies", as exemplified by ASCís 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 Vardyís 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 NAARís agenda dominating Canadaís research priorities. NAARís 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 ASCís communication efforts.

8. ASC writes: "ASC, like all voluntary organizations, is working hard to grow and change with the times. We are involving more people with ASD at the Board level. ASC is actively encouraging people with autism to be participants not only in their own provincial/territorial autism societies but also at the national level.

The reality: ASC needs handpicked autistics to support its positions, so that autistics who oppose these positionsóincluding that autism equals cancer, that untreated autistics belong in institutions, that all untreated autistics are lifetime liabilitiesówill be silenced. 

9. ASC writes: "ASC has created a Director-at-Large position on our Board for an adult with ASD. We recently filled this position from a list of candidates nominated by our member societies."

The reality: ASCís Director-at-Large is the one autistic in Canada judged by ASCís Board to best suit its purposes.

10. ASC writes: "In addition to Board representation, ASC is also in the process of developing a Consultation Group of adults with ASD."

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.
11. ASC writes: "Autism Society Canada deeply values the opinions of adults with autism, and continues to be willing to learn, consider ideas and make improved efforts to carry out our work in a respectful and inclusive manner on behalf of all people affected by Autism Spectrum Disorders in Canada."

The reality: ASC only values the opinions of those autistic adults willing to accept ASCís place for autistics. This means accepting that ASC will at times expediently denigrate and exclude autistics, in addition to controlling, limiting, and correcting usófor 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 attachedónot unless these parents are also autistic. Nor would ASC tolerate parents being excluded from Canadaís 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: ASCís 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 communityóthis being the community of autistic people and our alliesóas well as in the legal and research communities.
12. ASC writes: "There are people with Aspergerís or high functioning autism who need little or no special treatment or educational programming, individuals who may enjoy a very high level of functioning and may contribute significantly to the well-being of all."

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" areóin untreated autisticsóentirely 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, plagueóor as belonging in institutions, or as having a cancerous natureódo 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"?
13. ASC writes: "In contrast, there are many families who have children and adults with seriously debilitating autism conditions, who are affected deeply by a myriad of communication, behavioural, sensory and physical problems Ė children and adults who will need intensive treatment and support to reach their full potential.  ASC tries to advocate for all people with ASD. Due to the spectrum nature of autism, it is important to keep in mind that individuals with autism vary widely in their needs, skills and abilities."

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 ASCís version. 

The reality: It is ASCís 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 doesnít 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 autisticís 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 interestsóperhaps for only one kind of materialóand 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.
14. ASC writes: "We understand that there are people with ASD who may not require or want any kind of treatment."

The reality: ASC, in a recent press release, has proposed the same treatment for all autistics. This is the basis of ASCís 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 autisticís 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, ASCís 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. ASCís 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.

''You don't say to a cancer patient, 'You're at stage three, so you'll be cut off because your treatment is only useful when you're at stage one or two.' '' [source, National Post, March 31, 2004]
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 parentsí wishes, even if the child has to be apprehended. ASC has legally argued, by supporting the Auton parentsí 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 IBIówhich it was, historically, by Dr Lovaasóthis will have no effect on the rights and status of homosexuals or those children considered "at risk" for homosexuality.
15. ASC writes: "Parts of the autism community feel that autism has been "medicalized" to the point where individuals who are unique in their skills, abilities and value to their communities, have been denigrated, forgotten or eclipsed by the "disorder.""

The reality: ASC now needs to explain which autistics are sick and which arenít, which can and should be denigrated, and which shouldnít, which are disordered and which arenít. It isnít 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 isnít; who has cancer and who hasnít; who must be treated until the autism/cancer is gone, and who has a "choice".
16. ASC writes: "The Right to Treatment"

The reality: This is an evolution of ASCís 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 Lovaasí 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 Commissionerís 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.
17. ASC writes: "ASC believes that early effective treatment, which can lead to great improvement for many people with ASD, should be made available. At ASC we do not believe that any one single treatment or program will benefit all people with ASD."

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 ASCís position:
    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.

18. ASC writes: "Designing individualized effective treatments and programs for children should depend on a careful assessment of the child's profile of strengths and weaknesses, as well as the input from parents and professionals."

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".
19. ASC writes: "Autism Society Canada supports universal access to evidence-based effective treatments for people with ASD of all ages. Governments must not discriminate, and must fund, just as they do for other conditions, effective treatments based on current scientific evidence and recommendations of the individualís medical team."

The reality: This exemplifies ASCís determination to make autism a disease, and to have discrimination against autistics defined as the failure to eradicate the disease. 
20. ASC writes: "The right of choice is paramount, and ASCís efforts are to ensure that all people affected by autism have the possibility of accessing effective treatment and services that they can then choose or decline."

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 Lovaasí work. Here are quotes from their written argument or factum:
    The appellantsí persistence in characterizing the Lovaas-style treatment as "controversial" ignores the factual finding of Allan J. that "early intensive behavioural intervention, a model developed by Dr Lovaas and colleagues at the University of California" was uniquely effective in treating autism and ASD. [at para 41]

    It is submitted that the governmentís 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 childrenís right to life and to health. [at para 65]
That is, Lovaas-inspired early IBI is "uniquely" effective. Failing to provide it is a violation of the most basic human rights. ASC supports this position. The parents also write in their factum's statement of facts, again accepted by ASC, that re Dr Lovaasí treatment:
    None of the many conventional attempts to treat autism had achieved anything close to such positive results. [at para 19]
Also in the statement of facts, accepted by ASC, future treatments will be based on Dr Lovaasí work, unless there is experimental proof otherwise:
    While more and better variations of the methods developed by Dr Lovaas may be developed in the future, only experimental proof, not any form of orthodoxy, is the criterion for replacing any present, already proven methods by any future method. [at para19]
That is, the Auton parents, and therefore ASC, take the position that Lovaas-based IBI is "already proven"; that other treatments have in comparison been failures; and that Lovaas treatment cannot be displaced by any other treatment unless there is "experimental proof". This factum was submitted not long ago, and supported by ASC not long ago. Unless ASC is contending that between the Auton hearing in June and the release of their open letter in October, a new treatment that eclipses Lovaas-inspired IBI has been "experimentally proven", ASC cannot claim to promote any "choice" in treatment whatsoever. In the alternative, ASC was dishonest at the Supreme Court of Canada.

The reality: Added to the above is the predicted doom of all untreated autistics, this "fact" being one cornerstone of the Auton parentsí position, and one permeating ASCís 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 ASCís campaign to extract money from governments so parents can have "indistinguishable" kids?
21. ASC writes: The legal actions that ASC supports all deal with the correction of the inequitable application to individuals with ASD of benefits normally afforded to other Canadians. They specifically deal with the rights of individuals with ASD of all ages.

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. 
22. ASC writes: "Targeted, accessible services will offer individuals with autism conditions the best chance of improvement and adaptation, enabling them to reach their highest potential." 

The reality: In ASCís 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 ASCís Canada, be given to all autistics, cradle to grave, if that is what it takes to "improve" and "adapt" and achieve "potential".
23. ASC writes: "Like other Canadians with disabilities, people with Autism Spectrum Disorders are becoming more organized and are speaking out about their lives and their rights, and the discrimination they face."

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. 
24. ASC writes: "First-hand insights into the challenges of living with this complex disability and the unique knowledge now being shared among people with autism, their families and professionals, will likely have a profound effect on the future development of autism treatments and the continued development of both family and adult supports."

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 diseaseóthis 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 peopleówhen you insult them in ways that may put them in danger, as David Vardy did, as Carmen Lahaie did, as many others haveóor 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.


Note: Since the time the above was written, some of ASCís most offensive press releases have been taken down. However, the accurate press release quotes above continue to be representative of ASCís position. ASCís legal position remains unchanged, and ASC continues to celebrate and promote its autistic-free White Paper. One of ASCís press releases can be found at http://www.beaudincom.com/autisme/nouvelle/communique_4.html . An archive of ASCís 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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