An Autism Parent's Letter to Morton Ann Gernsbacher
Posted Sep 12 2008 11:31am
Morton Ann Gernsbacher, Professor of Psychology, President Association for Psychological Science
Centracre mental health facility in Saint John New Brunswick Canada which houses patients with a variety of mental disorders including persons with severe autism. It is not known whether Ms. Gernsbacher has ever visited such a facility to consult with autistic residents of such facilities about meaningful participation in her research efforts.
" Listservs, Yahoo groups, and even Second Life are teeming with autistics’ informed and articulate discussions of autism research — from persuasive deconstructions of their putative lack of mirror neurons, empathy, and theory of mind, to provocative hypotheses about atypical minicolumns, Purkinje cells, and 2D:4D ratios, to book-club-like discussions of the classics. Press releases, conference presentations, and journal articles are devoured and digested, sometimes with burps as simple as “no sh*t, Sherlock” (in response to a Nature Neuroscience publication of mine).
However, autistics are almost never consulted by autism researchers (thereby violating the mantra of disability rights, “Nothing About Us, Without Us”), and often they are explicitly excluded. Ms. Dawson has documented Canadian research conferences that barred autistics from attending but curiously welcomed parents of autistic minors as expert contributors.
Why haven’t autistics’ own voices been heard? Why haven’t autistics been as actively recruited to participate in all aspects of the research process as they’ve been recruited to participate as research subjects (even posthumously by donating their brain tissue)?
Perhaps it’s assumed that autistics just wouldn’t be able to handle high-level research. If so, someone ought to tell Vernon Smith, who was awarded the 2002 Nobel Prize in Economics (alongside APS Fellow Daniel Kahneman) for pioneering the field of experimental economics. And somebody better alert Richard Borcherds, who was awarded the mathematics equivalent of the Nobel Prize — the Fields Medal — in 1998. Both academics are diagnosed autistics."
- Morton Ann Gernsbacher, The True Meaning of Research Participation Observer, April 2007, Volume 20, Number 4
Your paper The True Meaning of Research Participation is interesting and thought provoking. As the father of an 11 year old boy who is severely autistic I am somewhat disturbed though by your express identification of autistic persons with the high functioning persons mentioned in the article. Your basic point, that autistic persons should be consulted in research, assumes (1) that all autistic persons are capable of being consulted in a meaningful way or (2) that high functioning persons such as your colleague Ms Dawson, Amanda Baggs, or Jim Sinclair, are representative of the great number of autistic persons, including my son, who do not share their communication abilities. Your article also goes on in a very flimsy way to suggest that objectivity is not an issue when these persons are involved in research. I hope you will not be too offended that I, a mere parent, find your assumptions faulty and your argument flawed.
I will not insult someone of your academic standing in the discipline of psychology by citing studies and reports which indicate that many autistic children do in fact have serious cognitive and communication impairments which render meaningful consultation by such less fortunate autistic persons an impossibility. You know this already although you do not address this point in your article.
I am not as certain though about the second possibility. Your whole article seems to be premised on the belief that Ms Dawson, Ms Baggs, Mr Sinclair and other autistic persons with very substantial communication and comprehension abilities are somehow representative of autistic persons such as my son who have much lower abilities in these areas, who can barely communicate at all, and in many cases, can only do so after years of Applied Behavior Analysis intervention. If that is indeed your assumption then as a parent who has actually lived 24/7 with a severely autistic son for 11 years I have to say I find your assumption to be flawed and not based on any obvious understanding of the realities of autism for persons with more severe cases of autism.
I spoke twice by telephone with Ms. Dawson, albeit briefly, when I was president of the Autism Society New Brunswick. On those two occasions she contacted me seeking access to a copy of a document prepared at the request of ASNB for possible use in litigation. Ms Dawson as you know has very substantial comprehension and communication abilities. What she does not have is much in common with my son or the many low functioning autistic persons who lack basic communication and comprehension. These are two important areas of life. They can literally mean the difference between life and death if, by way of a personal example, a child does not realize that cars will hurt him upon contact.
These differences can mean that dialogue between parent and child, and other persons in the child's life, is extremely limited. These differences mean that many lower functioning autistic persons will live in institutional care for the rest of their lives. This is an existing reality not an academic theory or debate. As a lowly parent, concerned about my son's future, I do not accept your flawed premise that Ms Dawson and others with similar comprehension and communication are sufficiently representative of the autism spectrum of disorders to suggest that autistic person are included in research by virtue of THEIR inclusion.
Your comments about objectivity are disingenuous at best and misleading at worst. Your own colleague, Michelle Dawson, has been a fierce opponent of efforts by Canadian parents to obtain government funded Applied Behavior Analysis treatment for their children. To that end she has appeared as an intervener in the Supreme Court of Canada proceedings in the Auton case and she has appeared before the Canadian Senate Committee which examined autism treatment funding issues in Canada. Ms Dawson's lack of objectivity is documented by her well known comments about parents and organizations seeking treatment for their autistic children: "“ They want autism to be a sickness that needs to be cured, ” she said. “ They say horrible disgusting things so they can get more money for their lobby groups. They make me sick,” Ms. Dawson said."
- Andre Picard, Globe and Mail, February 20 2006
If you check the internet you can find many more instances of disparaging remarks made by your colleague about parents and politicians seeking ABA treatment for autistic children. I do not share your professional standing. I am simply a parent. And I am a lawyer. Objectivity is also evaluated in my profession. Ms Dawson's public views about autism, and her demonstrated public hostility to parents, professionals and politicians seeking to treat or cure autistic children is more than ample evidence of her lack of objectivity. With respect your homage to Ms Dawson and other agenda driven high profile high functioning autistic persons also demonstrates your own abandonment of professional objectivity.
Ms Dawson has participated in your research as your colleague. Conor Doherty, an 11 year old with Autism Disorder, with profound developmental delays, has not participated and has not been consulted. Michelle Dawson does not speak for my son. Perhaps you, Dr. Gupta, Ms Dawson and Ms Baggs can make a visit to some mental health institutions where they care for youth and adult lower functioning autistic persons less fortunate then your friends. And please, revisit the quaint notion of objectivity while you are there.