Home | Index | Blog | Accès inderdit aux Autistes: La Société canadienne d’autisme parle pour elle-même
1. Jane Stewart Responds to No Autistics Allowed | No Autistics Allowed Responds to Jane Stewart
2. Liza Frulla Responds to No Autistics Allowed | No Autistics Allowed Responds to Liza Frulla
3. Canadian Government Denies Existence of Autistic Voices - No Autistics Allowed Talks Back
4. Liza Frulla and the Impact of Autism | Autistics and the Impact of Liza Frulla
5. Autism Society Canada Celebrates Its White Paper - An Autistic-Free Autism Strategy and Agenda
6. No Autistics Allowed One Year Later - Autism Society Canada Builds a Ghetto
7. Autism Society Canada's "Proactive Approach" - Evidence for a Communication Disorder
8. We Are Not Your Community - In Response to Autism Society Canada’s Open Letter
NO AUTISTICS ALLOWED
AN OPEN LETTER
23 Oct 2003
The Hon. Jane Stewart
Autism Society Canada (ASC) receives funding from HRDC. This letter is about the appropriateness and the consequences of this funding.
ASC, as a National Disabilities Organization (NDO), receives an organizational grant under Social Development Partnerships (SDP), and also this year received a special project contribution.
According to HRDC, "The purpose of organizational funding for NDOs is to promote the representative voice of people with disabilities as full and equal citizens in Canadian Society. These national organizations must be consumer controlled." HRDC makes it clear that consumers are people with disabilities, and that "NDOs must be either consumer-controlled or consumer-focused in terms of structure and outlook." Further, "consumer-controlled refers to an organization where consumers represent the majority of the organization's board, staff and membership. Consumer-focused refers to an organization where consumers and their family support providers represent the majority of the organization's membership and where consumers are included as active participants in the governance of the organization."
Challenging the funding
Does ASC meet the criteria for funding? ASC's consumers are, like me, diagnosed autistics. ASC calls all those diagnosed anywhere along the autism spectrum autistic: this departs from existing norms in diagnosis, but in this letter I will respect ASC's terminology. There are three problems in ASC's relationship with its consumers.
The first is ASC's denigration of autistics through sensationalism, condescension, and misrepresentation. ASC denigrates its consumers in order to fulfill the emotional and perceived financial needs of non-consumers.
Secondly, ASC excludes consumers from governance, and by excluding us from all policy- and decision-making, promotes the exclusion of autistics from the whole public discourse about autism. ASC excludes its consumers in order, again, to meet the emotional and perceived financial needs of non-consumers, and to cater to the intolerance of non-consumers. The first and second problems have formed a vicious circle in which the denigration of autistics ensures our continued exclusion, and this exclusion in turn means the denigration accumulates unchallenged in our absence.
The third problem is ASC's contention that its members are the provincial autism societies, and ASC has no control over its membership. This means that ASC has no way to write a proposal in which it can claim to conform to SDP's criteria for organizational funding. In fact, if what ASC contends is true, then its membership has no responsibilities whatsoever.
Sampling the challenges
These are in no way comprehensive.
1.) If ASC is at the mercy of its membership, who chooses the membership? ASC's Ontario member is Autism Society Ontario, which is neither consumer-controlled nor consumer-focused. The Autism Project, which is consumer-founded and consumer-controlled, was not chosen by ASC to be a member. ASC is claiming no control over its members at the same time it is choosing some members over other members.
2.) ASC not only lacks consumer focus, it lacks any consumer presence whatsoever. At best, autistics have honorary, decorative, and token roles, and even these roles are rare.
3.) ASC organized a major autism conference called the Canadian Autism Research Workshop (CARW). This took place in October 2002 and was billed by ASC as the first ever meeting of major researchers, governments, funding bodies, service providers, and the "autism community". ASC decided to bar autistics from every aspect of this conference with the exception of being hired to provide lunchtime entertainment for the non-consumer decision-makers.
4.) I was told by an ASC official that it was understood from the beginning of planning for the CARW that the "autism community" meant autism societies, and autism societies mean non-autistics, that is, non-consumers. ASC was telling me that consumers, that is autistics, are assumed by non-consumers to have no place and no say in autism societies. My attempt to find out how the decision to exclude autistics from the CARW was made failed because the decision, if it was made at all, was too insignificant for any non-consumers to remember.
5.) ASC also succeeded in choosing CARW participants, more than 70 of them, who like ASC believe that autistics have no place at an autism priority- and policy-making conference, and have no interest in autism research. Our exclusion was neither noticed nor commented on by any of ASC's chosen non-consumers.
6.) The CARW's objective was to produce "An Autism Research Agenda and National Autism Strategy for Canada", and there now exists an ASC-produced White Paper with this title. ASC will be using its special projects contribution from HRDC to distribute this paper to, among many other entities, governments, universities, and hospitals across Canada.
7.) Because I'm autistic, ASC refused to send me a draft of the White Paper, but I have managed to look at one anyway. There is no disclaimer in this lengthy paper indicating that Canada's autism agenda/strategy was devised, discussed, and decided in rooms where autistics were not allowed, even as silent witnesses. In common with all information produced by ASC, nothing good is said about ASC's consumers in the White Paper: we are relegated to the Non-Autistic Person's Burden.
8.) The role of ASC's consumers in ASC was scheduled to be discussed in a board meeting last August. I asked that autistics be allowed to participate in this meeting; ASC refused. Then I asked that one autistic (I suggested a non-verbal person) be present as a silent witness. ASC again refused. ASC's president, Lisa Simmermon, told me that ASC's bylaws bar the participation and even the presence of its consumers in board meetings. Later ASC's Quebec board member, Peter Zwack, told me that some board members expressed discomfort at the possibility of having an autistic in the room. The other board members sympathized, so we were banished. Further, an ASC official told me the board as a whole believed that were autistics allowed a say, we would make totally selfish and irresponsible decisions.
9.) The above indicates the difficulty any autistics would have participating in ASC member societies, since the ASC board is drawn from and represents these societies.
10.) Further on this point, ASC member societies have not welcomed autistics. An autistic called jypsy, who is celebrated around the world for her extraordinary website, was invited to a meeting at her ASC member society not because she was recognized as a consumer, but because she is the parent of one, which gives her non-consumer status. She was informed at this meeting that all autistics in the province over the age of 25 were incarcerated in the local psychiatric hospital. Jypsy's ASC member society does not provide a link to her award-winning site, which is considered to be the most comprehensive autism resource in the world.
11.) The executive director of my ASC-member society in Quebec told me earlier this year that this society (FQATED) is for parents, that is, non-consumers. On a website that has a direct link to ASC's site, the vice president and spokesperson for FQATED, Carmen Lahaie, states about autism, and therefore the existence of autistics: "It is time to try to understand then act to cure and prevent this plague once and for all." Also she states: "People affected by PDD [a broad term used to describe autism spectrum disorders] will never be able to speak up for themselves, so they wait and suffer. We, parents and professionals, have to do it for them."
12.) David Vardy, ASC's board member from Newfoundland, deployed his autism society credentials in a Senate Committee hearing in order to say he was speaking (as ASC claims it does in its pamphlet) "on behalf of Canadian people with autism". On our behalf he said: "Autism is worse than cancer in many ways, because the person with autism has a normal lifespan." On our behalf, after maligning all autistics including his brilliant son, Mr Vardy said that the only way to convey what a nightmare it is to be in his shoes is to drop sensationalist stories about autistic violence into the hush at Rotary Club meetings. No autistic was invited to speak on "behalf of Canadian people with autism". Mr Vardy did his best to ensure we never will be, in the Senate or elsewhere.
13.) ASC has given strong support to legal positions taken by and for non-autistics, that is non-consumers, in cases involving autism. In the Auton case, now at the Supreme Court, ASC has given approval to arguments generated by non-consumers in which autistics are portrayed as being doomed to isolation and institutionalization unless saved by one particular autism treatment; and in which autistics are said to be destructive not only of ourselves, but of our parents' lives, finances, marriages, and sanity. ASC promotes the existing decisions in Auton as great victories even though Auton has so far been conducted in its entirety without the participation of a single autistic.
14.) ASC also proposes to intervene in Auton on behalf of non-consumers without consulting or considering consumers--autistics--in any way whatsoever. Further, ASC has no interest in an intervention in Auton or in similar cases conducted by an autistic for the interests of autistics.
15.) ASC also promotes the non-consumers' legal position in a proposed class action in Quebec. One aspect of this position is that autistics who have not had one particular autism treatment by a certain age are assumed to be hopeless and condemned forever to be a burden on non-consumers, who in turn are demanding financial compensation.
16.) ASC has shown no support or interest in legal cases conducted by an autistic in the interests of the rights of all autistics. I've initiated and pursued six such cases: three won, one lost, a fifth under investigation and a sixth just started. These cases are unique and have set precedents. ASC not only does not help; it is an obstacle. I've had to explain more than one hundred times over the years--to lawyers, disability organizations, officials--that autism societies, including ASC, its members, and its members' affiliates, are there for the needs and rights of non-autistics, not autistics.
17.) ASC and its members more generally stand in the way of any autistic seeking assistance or services. The presence of "autism" societies leads to the belief that autistics, that is consumers, are being helped, supported, and included, and have a voice. The contrary is true. ASC and its members are obstacles to us ever being helped, supported, included, and listened to.
18.) ASC's website has nothing good to say about ASC's consumers. There is nothing about our documented (in peer-reviewed science) strengths, our superiority to non-autistics in many domains, our culture, our extraordinary accomplishments and contributions to society, and the fact that autistic genetics and behaviours are essential to the well-being of society. Nothing on ASC's website is written by an autistic. ASC has many well-described links to other sites created by non-consumers, including to a site that twice calls autistics a plague. There is no link to any site identified as being created by and for autistics, though many are available. Jypsy's link is tacked on at the end, with no explanation.
19.) ASC promotes its version of the puzzle pin, a symbol that most consumers object to. The notion that autistics are puzzling, mysterious, or baffling is the same sort of offensive cliché as describing Aboriginal peoples as primitive.
20.) In autism epidemiology, there is only faint evidence for a small increase in actual cases of autism. Regardless, ASC raises the alarm, using words like "epidemic proportions", "rapid increase", "staggering levels", "staggering national increase", and "increased dramatically". Calling consumers an epidemic has not, however, been sufficient to the needs of non-consumers: autistics have been prominently referred to as a plague several times this year.
21.) ASC declares every diagnosed autistic to be a $2million burden on society. If heroic early intervention measures are taken, ASC claims this millstone can be whittled down to $1million-per-autistic. ASC applies this calculus right across the spectrum, indicating ASC's conviction that even the majority of its consumers (60% to 80% according to Dr Susan Bryson, of whom ASC approves) who have normal to superior measured intelligence are so defective that even the most intensive interventions can only halve our damage to the nation's finances. In its cost-benefit analyses of its consumers, ASC informs the public that none of us has ever or will ever contribute anything to society. Like all ASC consumers, I am described as a lifetime liability.
22.) Further to the above, ASC surrounds its consumers with words like "tragedy", "condemned", "lost human potential", "wasted lives", "bleak institutionalized future", and "profound human suffering". ASC ensures that parents given the news their child is autistic will be, as Mr Vardy put it, in a state of trauma.
23.) "Canadian Autism Crisis": five times in its press releases, ASC makes use of the deaths of two of its consumers, both killed by a parent. ASC is referring to John Churchi, who was autistic, and Chelsea Craig, who was not (she had Rett syndrome, which is not an autism spectrum disorder). ASC claims these deaths ("an alarming statistic") resulted from desperate families being denied services. That is not true. ASC is lying and reprehensibly using the deaths of human beings to further the emotional and financial needs of its non-autistic members. I challenge ASC to produce any evidence that these children died for any reason other than they were in the way of a mentally-ill parent suffering a psychotic episode. In both cases, which I have investigated, the provision of services or lack thereof was not an issue.
24.) ASC's "alarming statistic" also includes the killing of Charles-Antoine Blais by his mother. I have a complete file on this case, including court documents and interviews with the lawyers and judge involved. Charles-Antoine was certainly killed because he was autistic. There is academic expertise in the area of how, why, and under what conditions autistics are disproportionately assaulted and killed by our caregivers. One of the identified conditions is permission: the parent is in a milieu where autism is seen as an endless nightmare of pain and suffering from which there is no escape or relief. Who then would not consider ending the nightmare by killing the autistic, who would not understand and forgive such an act?
25.) This is what happened in the Blais case. Charles-Antoine's mother, Danielle, was in the milieu I described above, a milieu provided by parents, service providers, and autism societies. After she killed her son, Ms Blais was deluged with praise and approval. She achieved the status of hero and martyr. Autism societies rushed in with a vigil, a demonstration, a legal fund, daily personal letters, and court testimony, all in support of Ms Blais. She did not go to jail and was designated by both the judge and Ms Lahaie (of the plague remark above) as a valuable resource for other parents of autistics, in effect, as a role model. Ms Blais was then employed by an autism society in this capacity.
26.) As for Charles-Antoine, Ms Lahaie said, "I think he is happy now." In her capacity as an autism society official, Ms Lahaie implied, as did Mr Vardy in the Senate, that death is an improvement on autism.
The goal is to stop ASC from actively hurting its consumers. This would start by requiring ASC to present itself accurately in all its actions and pronouncements.
Step 1: HRDC is providing ASC with a contribution of $20,000 to print and distribute the White Paper mentioned above. This funding should be contingent on ASC adding three accurate statements to the cover page of this paper. Since it has not yet been printed, this would cost ASC nothing. These are the three lines:
No autistic people were invited to participate in the production of this
Step 2: Autism Society Canada should change its name to reflect its real objectives, membership, and governance. The new name should indicate that this organization is by and for parents, eg, Parents of Autistic Children Canada. ASC should require the same changes of its provincial member societies, and require these members to impose this change on their own affiliates. ASC must be required in all communications--with governments, sponsors, the media, and the public--to identify itself accurately as a parent's group and to issue verbally or in print in all its communications the statement iii., above, adjusted to accommodate its new name.
Step 3: The previous steps make it clear that ASC is not eligible for the HRDC grants it is receiving. In the case of the White Paper, HRDC is condoning and perpetuating an act of segregation by financing the dissemination of its outcome. In the case of the organizational SDP grant, ASC is working to ensure its consumers do not have a representational voice, and by showing Canadians how we should be treated, is also ensuring we will never be seen as equal citizens, or even as human beings with rights. ASC is actively hostile towards autistics and, given that many of us have been scarred by brutal acts of intolerance, we will not be battling our way in. My attempts to work with ASC have resulted in me being notified that it is wrong for this consumer to communicate with ASC.
Step 4: ASC in its new incarnation would be free to seek from HRDC grants in line with its real objectives, membership, and governance. This would raise the further question of whether the Canadian government wants to lend the credibility of federal funding to an organization which specifically excludes and denigrates an identifiable group of Canadians. There are already plenty of Canadian autism groups occupying this territory. Does your government want to fund another one?
Historically, groups excluded from the whole public discourse about themselves--the social, legal, political, and ethical discourse--have the worst and most expensive outcomes. In autism, the public discourse, from which we are absent, has escalated to the point where all our talents and persistence, our brilliance and courage, will no longer be able to resist this trend. You will lose access to our extraordinary abilities and you--your ministry, your government, your country--will find that no amount of money or recognition can ever satisfy those who seek to exclude, denigrate, and eradicate us.
|Comment from Dr. Laurent Mottron|
|Les demandes de M. Dawson constituent un tournant historique dans les relations entre les personnes autistes et non autistes. Pour la première fois, une personne autiste remet en cause de manière recevable les fondements juridiques et institutionnels qui déterminent la place des personnes autistes dans notre société. Ce qu'elle dit bouleverse tout ce que nous avons l'habitude de penser de l'autisme, et qui fonde notre conception de l'aide que nous pouvons leur apporter. Ce qu'elle énonce est particulièrement difficile à recevoir pour ceux qui consacrent leur vie à l'autisme et qui, forts de leur bonne conscience de parents, de professionnels de la santé ou de scientifiques, sont persuadés de bien faire. Le premier sentiment que nous éprouvons à la lire est que ses positions sont dictées par une hostilité à l'égard du monde des non autistes. Les parents de personnes autistes et les intervenants se voient remis en question d'une manière radicale, déstabilisante. J'ai eu cette position il y a quelques années. Puis, à la longue, ses raisonnements font leur chemin, et on comprend que ce qu'elle dit est juste. Les écrits de M. Dawson correspondent à ce que pouvaient écrire les porte-parole de minorités ethniques ou sexuelles il y a un siècle. Autrement dit, ce n'est pas seulement elle qui est en avance, c'est surtout nous qui sommes en retard. Ce que dit et écrit Michelle Dawson est le produit d'une pensée et d'une réflexion soutenues dans une extrême solitude depuis vingt ans. La profondeur de ses propos, qui n'ont pas fini de nous modifier, n'apparaîtra, j'en suis convaincu, que dans quelques années. Je soutiens la lettre de Michelle Dawson, parce que ce qu'elle dit est plus proche des fondements éthiques de notre société que ce que nous disons et mettons en pratique à propos de l'autisme. Je la soutiens aussi parce je lui suis reconnaissant de m'avoir ouvert les yeux sur les dimensions humaines et historiques de l'autisme, alors que je n'y voyais qu'un handicap additionné d'une énigme scientifique.||M. Dawson’s demands represent a historic turning point in the relationship between autistic and non-autistic persons. For the first time an autistic person questions, in a valid way, the legal and institutional foundations which determine the place of autistic persons in our society. What she says drastically changes all that we are used to thinking regarding autism, and our ideas about what help we can provide. What she expresses is particularly difficult to accept by those who dedicate their lives to autism and who, on the strength of their good conscience as parents, health professionals or scientists, are convinced that they are doing the right thing. Our first reaction to what she writes is that her position is dictated by hostility toward the world of non-autistics. The parents of autistic persons and their caregivers feel challenged in a radical, destabilising way. This was my own position a few years ago. But in the long run, her reasoning makes its points, and one understands that what she says is sound. M. Dawson’s writings correspond to what spokespersons for ethnic or sexual minorities were writing a century ago. In other words, it is not only her who is ahead but, above all, us who are behind. What Michelle Dawson says and writes is the product of sustained thinking and reflection carried out in extreme solitude for twenty years. The depth of her words, which will alter our thinking for a long time, will only appear fully in a few years, I am sure. I support Michelle Dawson’s letter because what she says is closer to the ethical foundations of our society than what we say and practise in relation to autism. I also support her because I am grateful to her for having opened my eyes to the human and historical dimensions of autism, when I saw it only as a handicap with a scientific enigma added.|
Mottron, M.D., Ph.D.
Directeur de la clinique spécialisée de l'autisme
Chercheur agrégé, Université de Montréal.
Since intolerance and its consequences know no borders, and what happens to an autistic anywhere happens to all of us, this list of endorsements equally knows no borders. We are autistics, parents, family, friends, professionals...
Moriarty, New Mexico
Amanda M. Baggs
"jypsy" janet norman-bain
M.A. Boeschoten, M.Sc.
Sara Sims Carr
Patricia E. Clark, Board of Directors
Ken and Louise Dawson
Denise "Moggy" DeGraf
Lawrence C. Foard
Morton Ann Gernsbacher, Ph.D.
Mary Johnson, Editor
(Ms) Jesse Kaysen
Annie Lahaie, M.Ps.
Marc Yves Leclerc, M.D.
Vancouver, British Columbia
Kathleen J. Lent, R.N. Manager
Russell M. Lloyd
André Masse, M.D.
Laurent Mottron, M.D., Ph.D.
Jon A. Peterson
Jon T. Peterson
Carol S Peterson
Mary Jane Ready
Edgar R. Schneider
Kassiane A. Sibley
Jim Sinclair, Coordinator
Laura A. Tisoncik
Kimberly-Anne and Martin Urquhart
Bronwen van der Wal
Carol Ann Williams
|This letter was received and signed for by Minister Stewart's office on the morning of October 24, 2003. At HRDC's request, the letter was also sent to the office of Deborah Tunis, Director General, HRDC Office for Disabilities Issues, where it was received and signed for on the morning of October 24, 2003.|
|Note: ASC's website has undergone many changes since the writing of the above letter. This is noted in the updates below. For an accurate summary of ASC's actions and statements, see the archive of their recent press releases here http://web.archive.org/web/20040403214415/http://autismsocietycanada.ca/en/press_releases.html|
|1 Dec 2003 follow-up to this letter:
Jane Stewart Responds to No Autistics Allowed | No Autistics Allowed Responds to Jane Stewart
|12 Dec 2003 follow-up: Paul Martin replaces Jean Chrétien as Prime Minister and names a new cabinet. Jane Stewart loses her position and is no longer in cabinet. HRDC is divided in two: Human Resources and Skills Development, Minister Joe Volpe; and Social Development, Minister Liza Frulla.|
|24 Jan 2004 follow-up:
Liza Frulla Responds to No Autistics Allowed | No Autistics Allowed Responds to Liza Frulla
|1 Mar 2004 follow-up:
Canadian Government Denies Existence of Autistic Voices - No Autistics Allowed Talks Back
|3 May 2004 follow-up:
Liza Frulla and the Impact of Autism | Autistics and the Impact of Liza Frulla
|1 June 2004 follow-up:
Autism Society Canada Celebrates Its White Paper - An Autistic-Free Autism Strategy and Agenda
|20 July 2004 follow-up:
In the wake of the 28 June 2004 election of a minority Liberal government under Prime Minister Paul Martin, the Hon. Ken Dryden is sworn in as the new Social Development Minister.
|2004 Jul 22 follow-up:
Autism and Ostracism in Paul Martin's Canada - Not the Usual Autism Letter
|2004 July 28 follow-up:
"I Am Certain That the Ministers Will Give Your Views Every Consideration"
No Autistics Allowed One Year Later - Autism Society Canada Builds a Ghetto
|2004 October 18 follow-up:
ASC's English website goes "under construction", with the note: "We are re-designing our site in order to make it more accessible to our many diverse visitors." ASC's White Paper, Auton Factum, accompanying press releases, and disclaimer remain posted.
|2004 October 30 follow-up:
Autism Society Canada's "Proactive Approach" - Evidence for a Communication Disorder
|2004 November 1 follow-up:
We Are Not Your Community - In Response to Autism Society Canada’s Open Letter
|2004 Nov 16 follow-up:
Autism and Extremism in Ken Dryden's Canada - Fifteen Questions About Canada’s Autism Problem
Is Autism Prevention Government Policy? - A Letter to the Hon. Karen Redman
|2005 July 14 follow-up:
ASC's new website is up. ASC now lists its Board of Directors, but not its autistic ghetto. ASC's direction and priorities remain unchanged, as seen by ASC's promotion of their autistic-free White Paper and of their cost-benefit-analysis-based Auton intervention in support of "medically necessary" ABA/IBI for all autistic Canadians. ASC continues directly to support all legal cases (without exception) in which autistics are characterized as doomed or less than human without ABA/IBI. The concerns raised here http://www.sentex.net/~nexus23/naa_asol.html have not been addressed.
|Sign the web version of this letter|
|The deadline for signing the original letter (above) closed October 22, 2003. If you would like to sign this web version, please e-mail your endorsement here. Personal comments may be added here.|
Rochester, New York
David N. Andrews BA-status, EPiT
Donald E.G. Beggs
Robert & Virgynia Bingham
Henry Black, P.E.
Craig W. Chadwick
Jim Crawford, Dip. P.E., T.S.T.C.
(Melbourne), BSc. (Indiana), MSc. (Chicago)
Nancy E. Deren
S. Goldschmidt, USA
Nicholas and Jean Lanxon-Whitford
Ole Jørgen Malm
Nina and Richard Martin
David K. March
Birmingham University, UK
Daniel D. Peavey
Colin Revell, BA Social Sciences
Fred N. Rose
David and Kathleen Seidel
Clara Sturak and Chris Chandler
Jacques Trempe, C.A.
Donna Williams, BA Hons, Dip Ed
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