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Autism Society Canada Builds a Ghetto

by Michelle Dawson

What has Autism Society Canada (ASC) done, in the soon-to-be-a-year since autistics and our worldwide allies signed an open letter demanding that they change? 

First, and still, they have ignored the open letter, accurately titled "No Autistics Allowed". Whatever concerns motivated the people who signed and continue to sign the open letter are of no concern to ASC. ASC remains incapable of taking the concerns of autistics and our allies seriously, and equally remains incapable of the basic courtesy of responding when written to.

ASC remains steadfastly at the forefront of the battle to turn autism into cancer, behaviour interventions into "medically necessary" treatment, and autistics into pariahs. In Canada, this battle has practically been won. Regardless, ASC is now enlisting autistics in this fight, both to allow ASC to claim to represent all autistic Canadians, and to prevent dissenting autistics from using legal and other processes to have our true voices heard.

It has also been nearly a year since the Canadian governmentóthe relevant federal minister, and the relevant federal directorateóhas been informed that ASC falls far outside the standards required for government funding and approval. What has the government done? Two ministers, the ministersí offices, and the directorate have unanimously praised ASC. In chorus, they have dismissed with contempt the evidence provided by autistics, who they see as failing to understand and appreciate what is good for us.

PART ONE: Autism Society Canadaís Autistic Consultants

ghetto (get-oh) noun (plural ghettos) Ö(3) a segregated group or area 
óOxford paperback dictionary

The ghettoís blueprint

1.) The ASC Board recently decided to rectify its autistic-free status by constructing a segregated powerless group of autistic "consultants". One autistic has been or will be selected by each of the provincial and territorial members which comprise ASC. This handpicked autistic enclave has the assigned duty of discussing what the ASC Board tells it to discuss, then reporting to the Board, which makes all the decisions. 

2.) There will also soon be a popularity contest, a sort of "Canadaís chosen autistic" pageant, in which the ASC Board will choose its favourite autistic from among the handpicked segregated autistic consultants. This selected autistic will have a position of "Director at Large", and will sit as an autistic appendix to the existing Board. 

3.) The above process is detailed by ASC in writing. One detail is that this autistic ghetto has, as ghettos often do, an architect. This is ASCís real consultant, Dr Kevin Stoddart. He is a non-autistic hired by ASC to ensure the "successful functioning" of the powerless segregated autistics. 

4.) ASC has informed its provincial/territorial membership re its new segregated offshoot. Among other criteria, ASC is insisting that candidates for the autistic ghetto "be able to make decisions in a setting that accommodates and encourages the expression of a variety of opinions". This is just in case this autistic wins the ASC Board popularity contest and becomes the Boardís chosen autistic. The other autistics will not have to make decisions at all; in fact they are prevented from doing so. 

5.) Those of us proposing that autistic people are not a catastrophe have not experienced the ASC Board as accommodating and encouraging the "expression of a variety of opinions". Nor have those of us who opposed ASCís outpouring of support for a parent who killed her autistic child. When I once suggested that ASC describe autistics in less derogatory ways, I was shouted down by a member of the Board. Meanwhile, this Board did accommodate and encourage the view of at least one of its members, when he stated that everyone would be better off if autistics died of autism, rather than continuing horrifyingly to live.

The ghettoís rules of conduct

6.) While ASC has an existing Code of Conduct, the arrival of autistics in this previously autistic-free zone apparently requires a new Code, also designed with the help of Dr Stoddart. This new code hasnít been written yet. According to ASCís rules, the citizens of the ghetto have to agree to follow a Code of Conduct which doesnít exist yet and in which they will have no say.

7.) The soon-to-be-replaced existing Code reads, in total: "We will all treat each other with respect and we will refrain from making derogatory remarks."

8.) The ASC Board must be complying with the old Code, just as they expect the handpicked autistics to comply with the new Code. This means that ASC considers it respectful and non-derogatory publicly to wish autistics dead. It is also okay publicly to banish us from the most important conference for us ever held in Canada, and to equate in the media our nature with cancer, and to develop and pursue a legal position in which autistics who remain autistic are assumed to be worthless, doomed, onerous write-offs. It is also okay to describe our existence as tragic/staggering/alarming, and to blame us for being killed and for destroying our families.

9.) ASCís interpretation of the old Code raises questions about whether respect is due to non-autistics only. Also, to what extent will the ghettoized autistics, and the Boardís autistic appendix, be obliged to support, or to refrain from criticizing, ASC legal and public positions derogatory, disrespectful, harmful, and at times dangerous to themselves?

ASCís legal position

10.) ASC intervened in the Auton case at the Supreme Court of Canada. ASCís position, according to its factum and accompanying press release, includes its wholesale support for the parents in this case. ASC "supports the position of the Respondents and endorses the submissions in their factum.". This is a current, irreversible legal position, on the public record.

11.) As argued by the Auton parents, this legal position is that Lovaas-type Applied Behaviour Analysis treatment is the one and only "effective" "medically necessary" autism treatment. 

12.) By maintaining this legal position, ASC violates the disclaimer repeated throughout its website. ASC "does not support, endorse or recommend any method, treatment, product, remedial center, program or person for people with autism or autism related conditions."  Either ASC is being dishonest in this disclaimer, or dishonest in its legal position. The provincial ASC members who have similar disclaimers are also being dishonest, since all provincial and territorial members are sworn, in ASCís application to intervene, to support ASCís position.

13.) ASCís legal position is also that without the one endorsed treatment, autistic people have no possibility of progress, communication, participation, autonomy, personal decision-making, contributing to society, achievement, dignity, development, learning, intelligence, integrity, health (physical and psychological), life, liberty, and security.

14.) ASC is now recruiting autistics while maintaining a legal position which argues that our participation in society, much less this Society, is impossible due to our medical condition. ASC officially states that we canít communicate, or make decisions even about ourselves, and are dangerous to ourselves, have no possibility of life, never show any improvement, and belong in institutions. This would be true of all available adults, who in Canada have not had the "medically necessary" treatment ASC swears that we are doomed without.

15.) As a result, autistic adults agreeing to participate in ASCís structure are participating in an organization which informed the Supreme Court that this participation is impossible, and that the unrectified existence of such adults is a waste and a tragedy. Either ASC was dishonest in the Supreme Court, or ASC is lying to autistic adults when it claims we can participate.

16.) Here are some excerpts from ASCís application for leave to intervene in Auton. They represent the kinds of positions fundamental to ASC. Many of the statements are repeated more than once; the financial burden information is repeated seven times:
a.  Autism Society Canada is a national public interest organization committed to advancing the interests and well-being of individuals affected by autism/Autism Spectrum Disorder and their families.
b.  Current lack of or ineffective treatment results in a lifetime cost of $2million per person with autism.
c.  New annual lifetime liability for new cases in Canada: $60 billion
d.  Many people now know someone with an autism condition, and in the near future, most families will have a member with an autism condition. 
e.  More people have autism conditions than breast cancer, AIDS, or Parkinsonís.
f.  Life potential not realized: Without effective early treatment, less than 5% of people with autism conditions are able to proceed in mainstream life.
g.  Tragedy: Families caring for a person with an autism condition frequently experience physical and mental exhaustion, which has led to some tragic actions where parents have taken the lives of their children and attempted to take their own lives as well (more than half the Canadian children with disabilities whose lives were taken by parents in the past few years had autism conditions).
h.  Parents of people with autism conditions often experience depression, isolation (due to the challenges in taking their child out in public, and from family criticism due to lack of understanding) and divorce.

The ASC welcome mat

17.) Nominees for ASCís ghetto have to be members of, and favoured by, their provincial member societies. The difficulty and distress this may cause to autistics continues to remain unaddressed. 

18.) If I join my provincial member, I have to support my local affiliate, which says Iím a plagueóa terrible plagueówhich must be eradicated once and for all, and says I canít speak for myself, and must be spoken for by non-autistics. This view is shared by my provincial member. An autistic going to a meeting of ASCís PEI member will be told that a person like her, or like her sons, is "horribly sick". She will be lectured by a member determined to spread the word that "having an autistic child is comparable to family violence". 

19.) An autistic in Saskatchewan will have to join a FEAT group in order to participate in Canadaís "autism society". ASCís current President, Lisa Simmermon, told me last summer that there were only two intelligent autistic adults in Saskatchewan. Autistics in BC will have to join a society whose president described them in the media as sick, and autism as the equivalent of cancer. Autistics joining from Newfoundland have to grapple with ASCís Newfoundland Board member testifying that autism is worse than cancer because autistics have a normal lifespan. An autistic approaching Nova Scotiaís ASC member will find their newsletter reports via its ASC Board member that a workshop from which autistics were banished was a "runaway success".

20.) Every autistic approaching a provincial or territorial ASC member will be approaching an organization which is sworn to support ASCís legal position (see points 10 to 16 above) in the Auton case at the Supreme Court. 

FEAT Canada

21.) ASCís federal funding, according to Deborah Tunis, Director General of the Office for Disability Issues (ODI), is granted on the basis that ASC is a group of parents fighting for early behaviour interventions for their young autistic children. This is the definition of a FEAT group. Since ASC has taken a legal position indistinguishable from Canadaís FEAT groups, and has a FEAT affiliate, and has little in common with autism societies like the UKís National Autistic Society, it is accurate to describe ASC as the worldís first national FEAT group.

22.) FEAT groups are not known for welcoming autistic people, or for respecting the possibility that our differences are not akin to fatal diseases. ASC itself applauds the autism equals cancer equation on its website; this also is the legal position ASC supports. Autistics willing to contribute to ASC by paying to join its provincial/territorial members, and those selected by ASC for its autistic ghetto, are then in a position of funding and supporting their own denigration. Encouraging this phenomenon, as ASC and Dr Stoddart are doing, shows an extreme absence of basic respect and ethics.

The secret society

23.) ASC has refused to disclose the names of those on its own Board, apart from the executive trio (Lisa Simmermon, Peter Zwack, Jo-Lynn Fenton). It has also refused to disclose the names of the powerless autistics it has recruited to represent all autistic Canadians.

24.) Since I am not welcome to communicate with ASC, I attempted to communicate with ASCís hired consultant-to-the-ghetto, Dr Stoddart. We previously had spoken a few times. Dr Stoddart seemed to express interest in the issues I raised, as well as a willingness to take these issues to ASC, then to report back. What happened instead was that Dr Stoddart curtly informed me that he cannot give me information in any way about ASC and its decisions re autistics.

The silencing of true voices 

25.) Examined objectively, ASC would be indistinguishable from a FEAT group in all its public activities and positions. It is also funded as a FEAT group and has a FEAT affiliate. But it claims to represent the entire Canadian autism community. In Auton, ASC describes itself to the Supreme Court as "the only national public interest organization committed to advancing the interests and well-being of individuals in Canada who are affected by autism/Autism Spectrum Disorder and their families", and as a "national organization with pan-Canadian representation of the Canadian autism community".

26.) The government which funds ASC parrots ASCís view of itself. The former Minister of Social Development, Liza Frulla, wrote: 

I also believe that with the growing awareness of the impact of Autism Spectrum Disorders (ASD) on the lives of Canadians, we very much need organizations like ASC. I understand that ASC is the only pan-Canadian organization advocating for those with ASD. 27.) Regardless of ASCís and Ms Frullaís contentions, ASC does not act like a disability organization. ASC deliberately promotes harmful, unbalanced, and misleading views of autistic people in order to obtain funding for the one treatment ASC endorses. The propagation of truly offensive and dangerous information harmful to all autistics is never opposed by ASC, whereas accurate information which may undermine its FEAT-based position always is.

28.) ASC is now in a position to use its ghettoized autistics to silence public and legal dissent against its expediently negative and destructive views of autistic people. ASC will flourish its consultants to prove it represents us all, and to ensure opposing views are marginalized. ASCís powerless segregated autistics will displace the true voices of all autistic Canadians who do not share ASCís public and legal positions.

PART TWO: Your Time Is Up

up adverb Ö(11) finished; your time is up
óOxford paperback dictionary

Some of the opposition

29.) Other political parties have been approached about the current governmentís support for ASC. The Conservative Party of Canadaís Social Development Critic, the Hon. Carol Skelton, has written a letter supportive of the idea that more than one view of autism exists and is valid. The New Democratic Party (NDP) of Canada, contacted for many months before and after the recent federal election, has not taken a position.

30.) Autistic Canadians do know the position of the Ontario NDP. The NDP in Canada is a left-wing party supportive of minorities and human rights issues. In 2003, the Ontario NDP wrote the following to ASC (proudly displayed on ASCís website):

Thank you very much for your request for information about the NDP's policy regarding funding for Autism treatment. The Conservative government only funds I.B.I. treatment up until a child's sixth birthday, and the funding that does exist is doled out sporadically through the Ministry of Community, Children and Family Services. More than 900 children who desperately need treatment sit on waiting lists. Many of these children will turn six without ever receiving treatment. Others will begin treatment and have it snatched away just as it begins to work. Autism is an illness that has an effective treatment. No child with cancer would be denied treatment based on their age. The NDP will begin immediately to fully fund all IBI treatment for autistic children through OHIP, regardless of age. [Ö]

Howard Hampton, Leader
Ontario NDP 

31.) The Ontario NDP has also refused to speak with any autistic person concerning its position about autism treatment.

Members of Parliament, and the Senior Ministerial Advisor

32.) While my former MP was sympathetic, the recent election saw a boundary change which put me in the riding of the Hon. Lucienne Robillard, a Liberal. Ms Robillardís riding assistant, provided with an outline of the relevant issues, concluded that I wanted more funding for ASC. She then stated Ms Robillardís support for Montrealís autism society. This is the society which calls for the eradication of the terrible plague of autistic people, and previously praised and hired a woman who killed her autistic son. Ms Robillardís assistant stated that since I had responses from Ms Frulla, I should be satisfied. She further expressed the same kind of incredulity and ridicule as Ms Frullaís Quebec Assistant once did, when he exclaimed "Who do you think I am, Jesus Christ?" in response to my concerns.

33.) jyspy (janet norma-bain)ís Liberal MP, the Hon. Wayne Easter, has politely been contacted by her many times over the course of several months. Mr Easter has yet to act, or to reply to his constituent. In March, jypsy wrote "Surely you are not going to support the silencing of this resident of your riding", to which she has had no meaningful response.

34.) In Social Development Canada, both the deputy ministerís office and the relevant assistant deputy ministerís office refer all concerns about accountability in ODI to Claude Jacques, Senior Ministerial Advisor. Some months ago, Mr Jacques had expressed to me his total satisfaction with then-minister Liza Frullaís responses to the concerns of autistics, as well as with the actions and positions of ODI.

35.) This time Mr Jacques allowed me ten minutes on the phone, in which time I explained that not one concern communicated to the successive ministers and ODI has been in any way addressed, except with insults, ignorance, and contempt. I explained that ODI officials making decisions about autistic people were acting on gross biases and prejudices. As well, autistics have learned that writing more letters is not going to resolve this problem, not so long as ODI has the priority of defending its actions at all costs, regardless of the destructive consequences to autistics and to the credibility of their own standards and mandate.

36.) Mr Jacques, speaking on behalf of his Minister, replied that all the concerns I communicated to the ministers and ODI had been responded to. He was mystified when I suggested that Ms Tunisí statements and actions might not be consistent with the legal and respectful treatment of disabled people. His final judgment was that I had written letters, I had phoned people, and I had been to a meetingóso I am done. It is over. And my time is up. 

The Office for Disseminating Intolerance

37.) ODI and the ministers who have signed letters in response to the open letter have presented a variety of views as to how and why ASC is funded. These versions are contradictory.

38.) Former Ministers Jane Stewart and Liza Frulla wrote that ASC meets the existing criteria, but they did not explain how or why this is true.

39.) Ms Tunis wrote that autistic people, across the spectrum, are children and/or canít speak, and/or canít participate in an organization. She insincerely apologized for sending me this information, which she assumed came from ASCís application for funding. An alternative version was not supplied by Ms Tunis until I met with her in June. Here she explained that ASC is funded as a de facto FEAT group. There is no provision for the funding of such a group in the criteria for the funding ASC receives.

40.) Claudette Perron, a bureaucrat speaking for ODI, stated that ASC was funded by accident, since disability groups were not properly scrutinized in the past. This does not explain why ASC continues to be funded.

41.) No one at ODI has acknowledged or objected to ASCís denigration of its autistic consumers. ODI appears not to be able to perceive this denigration. It is fair to assume that funding the denigration of disabled people is not in ODIís mandate. Is ODI claiming that ASCís catastrophic version of autism is accurate? Or is ODI claiming that an exception is being made, since denigration is good for autistics? Ms Tunis did make it clear that the denigration of people with Down syndrome would not be funded. She and ODI share ASCís position about the worth and treatment of autistics, and ODI now approves of ASC enlisting powerless autistics to lend the appearance of credibility to legal and public positions denying their own value and worth. 

PART THREE: Against Extremism

extremist noun a person who holds extreme viewsÖextremism noun
óOxford paperback dictionary

ASCís only possibility

42.) ASCís position is extreme. The fury which greets any person with the temerity to write positive and accurate information about autism is a tribute to this extremism. The president of an ASC member affiliate attacked in the press the idea that autism may not be cancer, and that autistics may be good. She described these ideas as "frightening" and "outrageous". ASC continues, in spite of some cosmetic changes to its website, to advertise how horrible autistic people are, what a burden, how staggering and alarming and so on. 

43.) In its legal position, which ASC is unlikely to disown or reverse, the very existence of autistics who could participate and contribute to ASC is utterly, repeatedly, and brutally denied. So when ASC seems to be reporting that they may have an (unnamed) autistic Board member, we can ask how this happened. The only possibility is that this person underwent Lovaas-type ABA as a child and of course "recovered". ASC does not allow for the presence in society of any other kind of autisticónon-recovered autistics who have had ABA are also written off by ASC. 

44.) This is an extreme position, founded on extreme prejudices. The failure of officials representing many levels of government hierarchy, as well as various political persuasions, to notice this extremism is a tribute to the efficacy of ASCís public education efforts. 

Your persistent denial of us

45.) My own position has been described as totally negative, as destructive, as an attack on ASC. This is a further tribute to ASCís education of the Canadian public and governments. ASC has ruthlessly attacked the worth and dignity of autistic people and has banished us from anywhere that counts. And this has passed very nearly unnoticed, as has false and biased information ASC freely and proudly distributes. 

46.) At the same time, every suggestion on the part of autistics objecting to ASCís more destructive policies has been entirely ignored. Not one recommendation we have made has been even contemplated, much less implemented. This too represents extremism on the part of ASC, and ODI, and those bureaucrats responsible for ODI. All these people have told us that no matter how we present our case, no matter what we have to contribute, our ideas and ourselves will be categorically rejected. We perhaps would be better not communicating at all. Our time is up.

47.) We oppose extremism. We believe a balanced, accurate view of autism, encompassing the fact that autism is an essential part of who we are, does not represent one "side" in the argument, much less a destructive, negative attack on anyone. Instead it is a statement that autistics are human beings with human rightsóa necessary starting point for a discussion encompassing many different views. We disagree with ASC that the only way to achieve ASCís goals is to denigrate autistic people. We disagree that all positive views of autism must be attacked, for example on the grounds that "good" autistics are so rare as to be irrelevant. We disagree also with many of ASCís goals. This should not surprise you, since these goals were decided in our forced absence.

48.) We disagree with the segregation of autistics from the mostly non-autistic people deciding what is good for us. We did not ask for handpicked autistics to be slapped into a voiceless ghetto, a ghetto complete with non-autistic supervision and rules of conduct. Segregation is an attack on people with differences. It is extreme. So is the implicit message that autistic adults must be controlled, trained, moderated, guided, restricted, and corrected by non-autistics for our own good.

49.) We approached you who are ASC, then approached your hired gun, Dr Stoddart, believing we had a great deal to offer your organization, believing that we could work towards changes beneficial to all. We have been torn down by your entirely negative and destructive views of us. What has ASC done? You have attacked us, attacked our humanity and existence and worth, and you have done this irreversibly in public. You have refused to work constructively with us as equals, to genuinely encounter us and our great variety of experiences, abilities, and perspectives. You have rejected our honest humanity.

50.) We are sad and angry at your persistent denial of us. We will never understand or accept it.

© 2004 Michelle Dawson, all rights reserved | This page published September 16, 2004
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