OTTAWA, Canada: A remarkable Open Letter signed by many prominent autism campaigners and authorities from arouund the world has been sent to Jane Stewart, Canada's Minister of Human Resources Development, questioning the appropriateness and consequences of her department's funding to Autism Society Canada (ASC).

The letter, from a leading Montreal autism advocate, Michelle Dawson, who is herself autistic,  points out that ASC, as a National Disabilities Organisation (NDO), receives an organisational grant under Social Development Partnerships (SDP), and also this year received a special project contribution.

Dawson's letter quotes HRDC as stating: "The purpose of organisational funding for NDOs is to promote the representative voice of people with disabilities as full and equal citizens in Canadian society. These national organisations must be consumer controlled."  HRDC, Dawson writes, 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 organisation where consumers represent the majority of the organisation's board, staff and membership. Consumer-focused refers to an organisation where consumers and their family support providers represent the majority of the organisation's membership and where consumers are included as active participants in the governance of the organisation."

The open letter goes on to question whether ASC meets these criteria for funding?  "ASC's consumers are, like me, diagnosed autistics," writes Dawson.  "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 fulfil 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 [the] criteria for organisational funding. In fact, if what ASC contends is true, then its membership has no responsibilities whatsoever.
 
Dawson claims that 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. ASC organised 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. 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. 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."

Dawson's letter goes on to sat that the ASC produced a white paper with the title "An Autism Research Agenda and National Autism Strategy for Canada," to be distributed distribute to governments, universities, and hospitals across Canada. "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."

The role of consumers in ASC was scheduled to be discussed at a board meeting last August.  Dawson requested that individuals with autism be allowed to participate in this meeting, but, she says,  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 by-laws barred 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 had expressed discomfort at the possibility of having an autistic in the room. The other board members sympathised, so we were banished.  Further, an ASC official told me that the board, as a whole, believed that, were autistics allowed a say, we would make totally selfish and irresponsible decisions."

Dawson also notes that ASC member societies have not welcomed people with autism. "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 recognised 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. "

Dawson's open continues: "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.' 

David Vardy, ASC's board member from Newfoundland, deployed his autism society credentials in a Senate Committee hearing, Dawson notes, in order to say that he was speaking (as ASC claims it does in its pamphlet) "on behalf of Canadian people with autism."  He said:  "Autism is worse than cancer in many ways, because the person with autism has a normal lifespan." 

"On our behalf," Dawson continues