Autism Change.org and Estee Klar Misrepresent Canada's Autism Climate
Posted Feb 13 2009 4:51pm
Change.org's autism page does not present a progressive view of autism. The Change represented on it's autism page represents no change at all. It is a media portal for the neurodiversity ideology which says that people with autism should not be cured or treated for their autism disorders, although the term "disorder" is frowned upon at Change.org.
According to the neurodiversity ideology found at Change.org autism represents variations in personality and ways of thinking. Autism is no longer a medical disorder defined by the DSM requiring treatment. Instead a social model of autism is put forward, one which views problems encountered by persons with autistic personalities as the result of society's failure to accommodate autistic personalities and ways of thinking. There is little, if any, mention of the life situations facing the severely autistic, some who live their lives in institutional care, or of self injury, or aggression, or the cognitive deficits of many persons with Autistic Disorder.
Change.org continues its subservience to neurodiversity ideology with an article by neurodiversity blogger, and Michelle Dawson disciple, Estee Klar which seriously misrepresents Canada's autism realities. Ms Klar in The Canadian Autism Climate: Too Cold For Comfort Introduction misrepresents the Canadian autism climate and attempts to pass off her views as representing the realities of Canadian autism parents.
In the article Estee Klar, now a graduate student in critical disability studies, and a long time anti-ABA ideologue, continues to advance her neurodiversity thesis that autism should not be viewed as a medical disorder. "Based on the notion that autism is a disease or something “wrong,” the government of Canada continues to endorse an intervention promoted by a series of parents in Canada."
The "notion"? Autism is defined as a disorder in the DSM. Presumably, Ms Klar as a parent of an autistic child, obtained for her child a medical diagnosis of one of the autism disorders before beginning her career as an anti-ABA advocate. Presumably there were observable behaviors or lack of development that prompted such a diagnosis. Was Ms Klar hallucinating, imagining such deficits, when she sought medical attention for her child, the attention that resulted in a medical diagnosis that Ms Klar now blithely dismisses as a "notion"?
Ms Klar is not sure, in her attack on ABA in Canada, who to blame for the fact that most Canadian provinces now provide ABA interventions to one extent or another (services that parents of autistic children in most states in the US are also fighting for from their health insurance providers):
Whatever the entry point into the foray of autism, what lies ahead is largely dictated here in Canada of what the government dictates is the proper autism “intervention.” Based on the notion that autism is a disease or something “wrong,” the government of Canada continues to endorse an intervention promoted by a series of parents in Canada.
As the quote indicates Ms Klar begins by labelling ABA as a government dictated autism intervention. Then she loses her train of thought and indicates that gee, ABA was actually "imposed" because ABA was "promoted" by a series of parents in Canada. Apart from the contradictions in this statement, blaming first the government; than a "series of parents", it illustrates the extent to which Ms Klar is out of touch with other autism parents in Canada and out of touch with any semblance of the realities confronting persons with autism and their families.
Parents in every province in Canada have fought hard to obtain ABA interventions for our children. I am one of those parents. Together with many other parents here in New Brunswick I fought hard to have government put ABA services in place by trained ABA service providers. New Brunswick went from providing no autism specific services to provision of ABA intervention by trained workers and clinical supervisors in the pre-school years and now is implementing an autism training program for teacher aides and resource teachers in New Brunswick schools.
I have also been involved across Canada meeting people from Halifax to Toronto to British Columbia working hard to achieve ABA services for autistic children in every part of Canada. It is not just " a series of parents" who are promoting ABA. Ms Klar has not been involved in such advocacy and is speaking purely as an ill informed outsider, ideologically opposed to our efforts.
Ms Klar has a more serious problem when advancing her misrepresentation that ABA is "imposed" on Canada's autistic children. The truth is, and as someone actually involved with autism parental organizations in Canada, I know this, many autistic children, including in Estee's Ontario, still languish on waiting lists to receive ABA interventions. ABA is NOT imposed, it is sought after by parents who want to help their autistic children. The waiting lists exist because so many parents want ABA for their children. Such lists are powerful evidence to refute Ms Klar's "notion" that ABA is imposed.
Nor do Governments provide expensive services because a few parents "promote" something. It was a very substantial number of parents, with too much common sense to gloss over the realities of their children's autism disorders, and with hundreds of studies and credible reviews of ABA as persuasive authorities, that resulted in governments moving across Canada to provide ABA. Not because it should be "imposed" but because most parents want ABA for their autistic children AND because to date it is the only evidence based effective intervention for autism. The most recent review confirming the evidence basis for the effectiveness of ABA was the American Academy of Pediatrics, Management of Children with Autism Disorders, (2007):
The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4
Ms Klar was not one of those parents who fought for effective ABA treatment for autistic children. She does not know the obstacles that had to be overcome to convince government to take action and provide ABA services. She does not know what she is talking about when she comments on Canadian autism parent advocacy.
I do know what I am talking about and many other parents in New Brunswick and every province in Canada do as well. The families in the BC cases in Auton and Hewko, the families in the Ontario Deskin Wynberg case know what ABA for autism advocacy really entails. People in Ontario that I have actually met, like Barry Hudson, Jennifer O'Brien, Norrah Whitney, Bruce McIntosh and Stefan Marinoiu know what they are talking about. I have met autism parent advocates from coast to coast like Jim Young from Nova Scotia and Jean Lewis fom British Columbia. We are not sitting at a Toronto art museum pondering social models of autism. We are dealing with the hard cold realities of life for many of our autistic children. We have been involved in the difficult advocacy necessary to help our children.
Ms. Klar misrepresents autism realities, the effectiveness of ABA as an autism intervention, and the challenges faced by Canadian parents who fought so hard to obtain ABA to benefit their children.
Estee Klar has not been involved with the parent advocacy that has resulted in ABA services being provided for autistic children in Canada. Estee Klar knows not of what she prattles.
Change.org should be ashamed of itself for promoting Estee Klar's regressive neurodiversity ideology.