Monday, April 27, 2009

Elizabeth Svoboda's autism culture movement: A letter

Dear Ms Svoboda,

I've read your article about the so-called "autism culture movement," something I am not involved in. In this article my actions are falsely characterized then commented on. At no point was I contacted or interviewed.

Apart from placing me in a movement I don't belong to, and falsely characterizing me as a "crusader," you misrepresent both the nature of Auton and my role in it. In Auton at the Supreme Court of Canada, I opposed both sides, and both sides opposed my intervention.

My position in Auton was about autistic people in Canada who, like me, have not received ABA-based interventions starting very early in life (for many reasons, including that we are too old). This would be most autistic people in Canada. Both sides in Auton, as well as the lower court decisions, dehumanized and wrote off this majority of autistics as doomed, as undeserving of consideration as human beings with human rights, and as belonging not in families or society but in institutions.

My stated role in Auton at the SCC was as one autistic person. Through the lower courts and up to the Supreme Court of Canada, both sides in Auton, as well as the lower court judges, agreed that not one autistic person should have a say in the proceedings--proceedings which engaged Canada's highest law, our Charter of Rights and Freedoms.

Starting before the Auton SCC hearing in 2004, I made my position in Auton fully public, posting online all relevant documents. My intervention was based on the lower court decisions, the 5,000-page evidentiary record, and the applications, responses, replies, and/or written and oral arguments of the parties and other interveners. That is, I was responding to the case as it existed as a Charter case (engaging Canada's highest law, our Charter of Rights and Freedoms), not to some generic demand for ABA services. As with interventions by others in many other cases, the purpose of my intervention was to provide the Court with information it did not already have.

The SCC decision was not based on my intervention but on the failure of the Auton parents to make their case. The premise of the Auton parents was that all "medically necessary" services in Canada are publicly funded for everyone, but this premise is false. Because of this and other major errors on their part, the Auton parents lost. My intervention is mentioned in the SCC decision (though not very accurately), so it was likely influential in some way, possibly in alerting the Court that the two sides in this case--which entirely agreed with each other in excluding, dehumanizing and writing off autistics--were not the whole story.

In your article it is falsely and uncritically assumed that US and Canadian laws and ABA-related legal issues are the same. This is not the case. The way laws have been used in ABA litigation differs by country and has changed across time, with numerous contradictory claims being made (one example here). In Canada, ABA litigation has engaged virtually all of Canada's major human rights laws. The legal status of autistics in Canada has been determined almost entirely through ABA litigation and autistics daily live the consequences.

While I have learned a lot since 2004, the basis of my position in Auton is still the position I take now. Here it is:

1. Autistics are human beings with human rights.

2. Autistics deserve to benefit from and be protected by recognized standards of science and ethics, including professional ethics. These are the standards that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes.

3. Services for autistics, whatever those services may be, should be asked for accurately (with respect to the existing scientific literature), ethically, and respectfully.
That's all. In Canada, those demanding ABA services have been unable or unwilling to do so accurately, ethically and respectfully. They could have chosen otherwise. For example, they could have chosen to take the position that autistics deserve recognized standards of science and ethics. If they had, Canada would be a much different--better and safer--place for autistics.

My experience in human rights cases arises not from anything remotely related to the "autism culture movement" or any "crusade" as you falsely claim, but from my error in disclosing my diagnosis to my employer. This not only destroyed my (long, exemplary--according to my employer) blue collar career, it put me in danger. It took almost ten years and a lot of legal work to mitigate some of the damage.

I recently won the first autism-related case referred to the Canadian Human Rights Tribunal for a hearing. Because of jurisprudence arising from ABA litigation in Canada, particularly Auton, and how this enshrined legal status of autistics has influenced the Tribunal, I had to ask the Tribunal to rule on whether autistics were regarded as human under the Canadian Human Rights Act.

This was not "crusading," as you misrepresent it, much less anything related to any supposed "autism culture movement." The numerous actions taken by my employer in response to knowing I was autistic were so extreme (though they are typical of how autistics--the majority of us who have not undergone ABA programs starting early in life--are regarded and treated in Canada), I did not have much choice.

I've gone on to take the risk of testing my ideas about autism via peer-review, and to show what an uneducated autistic (who has the behaviours and lacks the basic skills routinely invoked to scare people about autism) can contribute to autism research, given the opportunity. My publication record is nothing special, but it is not too bad for someone who has never attended university as a student, who has truly spectacular day-to-day difficulties, and who has been written off numerous times.

I disagree with many of the statements made about ABA-based autism interventions in your article--on both supposed "sides." I have criticized as inadequate, inaccurate and harmful many of the popular criticisms of ABA-based autism interventions. I disagree with ASAN's overall position about ABA, which in many areas is poorly informed and ignores the major underlying issue of quality of intervention research. At the same time, ABA as an approach to autism has been defended by its promoters as though it were an ideology, as sacrosanct and above scrutiny and criticism. ABA is supposed to be a field of science. The poverty of how ABA-based interventions have been both criticized and defended demonstrates the poor standards of science and ethics that are routinely promoted as what autistics deserve.

If you asked, I would tell you that "cultural phenomenon" views of autism have been harmful to autistics, detracting from crucial issues of basic human rights and standards. You won't find "neurotypical" much less "curebie" in my writing, and I sometimes disagree with ASAN's public positions and recommendations (for example, with respect to ABA-based autism interventions and autism research priorities). I have never claimed to represent other autistics, unless individual autistics have specifically given me this privilege.

At the very basic level where I function, representation is beside the point. The issues that matter involve attempts, by those promoting ABA-based interventions and others similar, to remove the basic human rights of autistics (for example, those of us who have not undergone ABA programs starting early in life), and to deny us recognized standards of science and ethics. Anyone is free to deny their own basic human rights, and to deny themselves the basic standards that exist to protect and benefit everyone. But denying basic human rights and basic standards to others is another story.

I wrote virtually nothing about "neurodiversity" until those unfamiliar with my work persistently associated me with it. In response I defined neurodiversity as part of the general idea that disabled people should have human rights--mainstream and noncontroversial except when the disabled people are autistic. I suspect people on both supposed "sides" disagree with this definition, but I don't have a "side," much less a "crusade" and do not have what it takes to be part of any "movement" much less a cultural one.

The standards currently applied to autistics are such that you are free to misrepresent me, and major legal decisions and issues, and so on, all you want. There's nothing I can do except put accurate information on the record, again, even though it has been here all along, for anyone who takes autism seriously.

Regards,

Michelle Dawson
Autism Specialized Clinic
Riviere-des-Prairies Hospital
University of Montreal


Postscript: Sharon at The Voyage blogs about "Autism Culture in Salon."

Saturday, April 25, 2009

Autism under the sun: Epidemiology from Aruba

ResearchBlogging.orgA recently epublished paper reports autism epidemiology in Aruba (van Balkom et al., in press). The findings: autism prevalence of ~19/10,000 and autistic spectrum prevalence of ~53/10,000 (of which only ~2/10,000 Asperger individuals were identified). Because case finding methods were very conservative and limited, the authors state that:

These prevalence estimates should be considered minimum prevalence.
Even so, these figures are

similar to recent reports from the United Kingdom and the United States.
For example, the combined Chakrabarti and Fombonne (2001, 2005) studies reported autism prevalance of ~19/10,000 and autistic spectrum prevalence of ~61/10,000. Very similar figures from the UK were recently found by Williams et al. (2008). In fact the reported minimum autistic spectrum prevalence in Aruba is noticeably similar to reported autistic spectrum prevalence in the Faroe Islands (~56/10,000; Ellefsen et al., 2007).

I am no climatologist, but all available reports converge on Aruba, which sits not too far from the equator, being a remarkably sunny and dry place. This is not the case for the Faroe Islands, which have a cloudy, rainy, foggy climate where sunshine is rare.

Speculation that lack of sun exposure may cause autism via Vitamin D deficiency is back in the media, providing a reminder that Michael Waldman and his Cornell colleagues persist in claiming that less precipitation means fewer autistics. Aruba's recent autism epidemiology sheds some bright light on these hypotheses.


References:

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA, 285, 3093-9.

Chakrabarti, S., & Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. American Journal of Psychiatry, 162, 1133-41.

Ellefsen, A., Kampmann, H., Billstedt, E., Gillberg, I.C., & Gillberg, C. (2007). Autism in the Faroe Islands: an epidemiological study. Journal of Autism and Developmental Disorders, 37, 437-44.

Balkom, I., Bresnahan, M., VogtlÃĪnder, M., Hoeken, D., Minderaa, R., Susser, E., & Hoek, H. (2009). Prevalence of treated autism spectrum disorders in Aruba Journal of Neurodevelopmental Disorders DOI: 10.1007/s11689-009-9011-1

Waldman, M., Nicholson, S., Adilov, N., & Williams, J. (2008). Autism prevalence and precipitation rates in California, Oregon, and Washington counties. Archives of Pediatrics and Adolescent Medicine, 162, 1026-34.

Williams, E., Thomas, K., Sidebotham, H., & Emond, A. (2008). Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort. Developmental Medicine and Child Neurology, 50, 672-677.

Monday, April 06, 2009

Definitely not autism advocacy: the People First ribbon

People First attended the recent autism conference in Halifax, where their work was featured in my presentation. Here is the information People First provides with their black and yellow ribbon pins:

We wear these ribbons to let Canadians know that too many people are still locked in institutions.

We are horrified that Canadians keep institutions open. We are angry that new kinds of institutions are being built.

The black ribbon is because people in institutions are not safe. Many have died. We mourn their deaths.

The yellow ribbon is for liberation--we want all people in institutions to step into freedom.

All people regardless of the severity of their disabilities should live in the community with the support they need.
Here is how People First defines institutions:

An institution is any place in which people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise control over their lives and their day to day decisions. An institution is not defined merely by its size.
Meanwhile, autism advocacy leaders in Canada have long insisted that autistics just naturally belong in institutions, a view which in consequence is enshrined in Canadian jurisprudence, under Canada's highest law:

Unless their condition is successfully treated, almost all autistic children are doomed to a life of physical, emotional, social, and intellectual isolation and eventual institutionalization - a tragic outcome for the children, their families, and society.
Here "successfully treated" means undergoing unlimited ABA-based autism interventions starting very early in life. Most autistics in Canada cannot meet this requirement, ergo autism advocates claim there is no choice except to lock us in institutions for our own good and the good of society. Canada's most powerful autism advocacy organization, FEAT (also known as "Medicare for Autism Now!"), adds that we must live in restraints and have our teeth pulled.

Canadian Senator Jim Munson, who has publicly supported FEAT, has used his power and influence to make it widely known that autistics' natural place is not in society or communities or families or the workplace but in institutions. Like other leading autism advocacy organizations and individuals, Senator Munson is insulting and undermining the very important hard work and achievements of People First.