An Autism Parent's Letter to Morton Ann Gernsbacher

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

http://www.psychologicalscience.org/observer/getArticle.cfm?id=2147


Dear Dr. Gernsbacher:

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.

Respectfully,


Harold L Doherty
Fredericton New Brunswick
Canada

Is The Neurodiversity Movement Ashamed of Lower Functioning Autistic Persons?

It seems at times that the Neurodiversity Movement is ashamed of the lower functioning members of the autism world. Autism is defined by the ND movement as simply another natural variation of human wiring. "Autistic intelligence" is defined as a different, perhaps even a superior form of intelligence. Doubt is cast on whether lower functioning autistic persons even exist by the more strident ND'ers. Even autistic persons who have demonstrated no communication skills, engage in seriously and repetitively self injurious and dangerous behavior should not be treated or cured in the view of the ND movement.

Parents who seek to help their OWN children, not the ND'ers themselves, but their own children, through attempts at cures or treatment are vilified by the ND movement. Every major parent driven autism advocacy organization from Cure Autism Now to Autism Speaks, Autism Society Canada, Autism Society America, National Autism Society UK, FEAT organizations, all are roasted for their efforts. They are derided as self centered whiners by the proud members of the ND movement. Pejorative labels such as "Autism Squeaks" and "curebies" are used to dismiss those seeking to cure or treat autism.

Recently CNN's Dr. Gupta featured the story of Amanda Baggs, diagnosed as being a low functioning autistic person, but clearly very intelligent and, with the aid of technology, an excellent communicator. The implied message - even low functioning autistic persons are really quite intelligent and do not need a cure or treatment. Unfortunately Dr. Gupta played into this denial of the existence of truly low functioning autistic persons by continuing a long history of media focus on autistic savants and other high functioning autistic persons while ignoring the sometimes brutal realities which confront low functioning, seriously disabled, autistic persons.

My autistic son, Conor, is a low functioning autistic person who brings me great joy. I delight in talking about how happy he makes me every single day. But, unlike members of the Neurodiversity I am not ashamed to admit the severe challenges he faces in life and I am not afraid to talk about them publicly. Unless such public discussion takes place there will be no improvements for Conor and other autistic persons like him. Of course that is exactly why the Neurodiversity movement attempts to censor such discussion. Content with themselves they wish to deny the opportunity for lower functioning autistic persons to be treated and cured. Is the Neurodiveristy movement ashamed of its lower functioning autistic cousins? It certainly looks that way to this "NT" (Neurotypical).



TIMES ONLINE

Is autism simply in the wiring?


Ailments come and go. I don’t mean in a personal sense — although my lumbar vertebrae are creaking again after a blissful period of quiescence — but in a social and historical sense. Homosexuality is no longer an illness. Lefthandedness no longer merits a cure. Could autism be next?

Some people argue that the developmental disorder — which compromises communication, social interaction and imaginative play — is merely an example of human “neurodiversity”. Just as disabled individuals sometimes prefer to call themselves differently abled, some people with autism would like to be regarded as differently wired. To try to alleviate or cure autism, they say, is tantamount to oppression. And genetic tests, which are in development to identify autism in the unborn, are a mere step away from eugenics.

This movement, which boasts groups such as Aspies for Freedom (a reference to Asperger’s Syndrome, a high-functioning form) and the Autism Liberation Front, does not accept the image of autistics as odd loners. Instead, nonautistics are portrayed as sad conformists unable to operate outside the social horde. It opposes any attempts to “cure” or even treat autism.

The movement is driven, unsurprisingly, by those at the high-functioning end of autism. It is ironic that they have been accused of not empathising with others at the low-functioning end, who are less able to cope with everyday life.

Professor Simon Baron-Cohen, a leading autism researcher at the University of Cambridge, says: “I agree that high-functioning autism is better characterised in terms of neurodiversity. Low-functioning autism may also be, but is probably best characterised as involving additional disabilities, such as learning disability, language delay, epilepsy and so on. I don’t think we are looking to ‘cure’ autism any more than we are looking to cure lefthandedness or being gay. But if there were treatments or interventions that help without affecting the areas of strength [such as the excellent attention to detail] I imagine these would be welcomed.”

http://tinyurl.com/2t6yp9