Sunday, June 10, 2007

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

18 comments:

Estee Klar-Wolfond said...

You just showed your utter naivete about the person you write about here. It is laughable. You have not done your research.

Autism Reality NB said...

If the mother who tells me that I should find joy in the fact that my son is severely autistic gives me a one line putdown with no explanation I will take that as sincere flattery.

To the extent that you said anything of merit I addressed Ms. Gernsbachers remarks as published. You offered ... what is it called ... kitsch?

ballastexistenz said...

I don't agree with functioning labels in either direction. But I have never been officially classified as high functioning.

Autism Reality NB said...

ballasexistenz I am not concerned about your official classification. The fact is, as your post indicates, you have substantial comprehension and communication abilities. Please try to undersand not all autistic persons share your abilities. The differences in comprehension and communication levels result in profound differences in ability to function in life. It results in profound differences of life prospects. These are serious real life issues not peurile internet debates.

ballastexistenz said...

Differences in comprehension and ability to function in the world are something I've never denied, in fact I frequently bring that sort of thing up with people.

However, I tend to do so in a much more complex way than you have done, because you have political reasons for classifying people into high-functioning and low-functioning. I don't. I just care how people actually function, and I am aware that the realities are more complex than "communication of a certain level == ability to function in the world at a certain level".

At any rate, please refrain from putting words in my mouth.

Autism Reality NB said...

I did not "put any words in your mouth".

My "political" reasons as you describe them are all aimed at securing treatment for my son and other low functioning autistic persons who lack your comprehension and communication abilities.

The world is very complex and when a person lacks basic communication skills, whether oral, or through some form of assistive technology, they do not function well in the world. You simply choose to run from that reality in your comments but that is perhaps because you have no stake in helping people such as my son who don't have your communication and comprehension levels.

ballastexistenz said...

Also, please don't call my reasoned disagreement with you a "puerile internet debate" and imply that I don't know anything about serious real-life issues. I thought that you did not allow things like name-calling here, and I don't think there is anything at all puerile about my points.

One serious real-life issue overlooked is that autistic adults die of starvation because they are thought of as too "high-functioning" to need any help functioning in the world, on the basis of communication abilities.

In reality, it has been shown over and over again that autistic people's level of adaptive skills does not correlate to our academic abilities. I have an IQ of 85 and an adaptive skill level of 45. That means that I need a good deal of assistance to get through a day, and if that assistance is not provided on the basis of my communication skills, I am in serious danger of dying of starvation, infection, dehydration, or some other problem.

I am more than aware of how autistic people live. I am the one who has lived in institutions and been told I would spend the rest of my life there, rather than visited them. I am the one who has been too dehydrated to sit up, and so thin that I could not sit down without a cushion. I am the one who has lived in an apartment that was several kinds of unsanitary because I was unable to clean it and unable to use the toilet in the toilet. I have walked into traffic rather than watching others do it. I have accidentally and with no particular intent to do harm to myself, opened a car door on a freeway because of an automatic movement.

I have advocated -- when practically nobody else including her family would -- for an autistic woman who was locked in a bare room of her own home with only her own crap to play with, and not even any toilet paper. Similar for an autistic man who was stuck in a crappy institutional setting and had no way out, and his family was restricting his access to what friends he did have. These people were labeled low-functioning and got the low expectations and low standard of living that comes with that label.

I have in addition to this watched an autistic man I know get thinner and thinner, and soil himself, and live in a filthy environment, but nobody would help him because he could communicate well in some areas and had a high-paid intellectual job. I have watched an autistic woman become homeless for similar reasons. And I have watched another autistic woman get denied services for being "too high-functioning" (based solely on her speech skills) and I have seen the life-threatening infections she still periodically has as a consequence of her hygiene services being too long delayed in coming.

I think I am more viscerally aware of the dangers to autistic people than anyone outside of an autistic person ever could be. I am always aware that minus a communication device and a supportive family then I could be in the same boat as many of these people, and that in many cases I have been in the same boat.

My solutions and values are different than yours, but to suggest that I know nothing of the real-life problems facing autistic people, just because I disagree with you, is to assume far too much. My solutions do involve dealing with the official classifications because those classifications have serious effects on our lives. There is absolutely nothing puerile or theoretical in anything I say.

ballastexistenz said...

You are putting words in my mouth with every reply you make, though.

I do advocate for all kinds of autistic people. Just because I do not do it in the way that you would choose does not mean that I don't do it. I have always acknowledged the existence of the people you are talking about (although I do not assume I know what they do and don't comprehend, because those assumptions frequently prove false, and I do not shove them into a particular category). You are telling me I haven't, and that I don't. That is putting words in my mouth.

Autism Reality NB said...

You may well be more viscerally aware of the realities of life for low functioning autistic persons than some other persons and you may well have been low functioning without the assistance of technology. But if you have been in institutional care then you know that some autistic persons will not reach your very sophisticated level of comprehension and communication. For some technology will never be the solution and if you have as much experience as you allege then you know that to be true.

My son is at a severe level of comprehension and communication deficit. I have also visited severely autistic adults in institutional care. The reality is grim in these cases. It IS peurile to argue incessantly about classifications when you know that profound differences in ability exist.

Ms Gernsbacher's article sets out several points with which I disagree and I expressed that disagreement. I will continue to do so when appropriate.

Although you were referenced in her article, and hence in my reply, I also addressed the objectivity concern very specifically with respect to her colleague Michelle Dawson who has intervented in Canadian legal and political proceedings very agressively in opposition to government funded ABA interventions for autistic children and youths. She has an agenda and her views are not remotely objective and should not be held up as such by Ms. Gernsbacher.

Autism Reality NB said...

ballasezistence,

You have personally embraced the classification of Autism Disorder. yet you presume to dictate to the rest of the world that no distinctions should be drawn on what has always been recognized diagnostically as a spectrum of disorders of varying severity.

There are many learned articles dealing with cognitive deficits of severely impaired individuals. The fact that in some cases intellectual assessments may have been inaccurate does not mean that such differences do not exist.

I have 11 years of living with my son 24/7 as a basis on which to assess his abilities as do many other parents. I have also been very active as an autism organization member, activist and lawyer in working with autistic persons at varying points on the spectrum. The differences between these individuals are often very significant and substantial. When you can write lengthy pieces and argue on the internet you do not share the same severity of deficits as my son and many others. And the differences should not be ignored.

Anonymous said...

Doherty, I know that there is probably no point in even attempting to argue with you over this one, but you are missing the point, or simply misreading.

No where in that commentary she wrote implies that just about any autistic person should be given active participation in research, any more than just any neurotypical. Compentency and research standards are important, regardless of neurotype. But I'm sure my point will be lost on you.

Autism Reality NB said...

"Doherty"?

Anonymous, that sounds kind of funny coming from one who posts anonymously.

I did not say that Gernsbcher said ANY high functioning autistic person could contribute to research Anon. What she said was that for some reason research should include autistic persons. That is what I have objected to for the reasons I stated. A High Functioning autistic person bears no special ability to offer the perspective of lower functioning persons. They face completely different life challenges.

There is despite the gloss over of the issue by Gernsbacher a real concern about objectivity in any research resulting from persons who have an agenda to promote. The examples given by Ms Gernsbacher all have agendas that would impair any perception of objectivity particularly Michelle Dawson who actively campaigns against ANA and treatment for autistic children and who is sickened by parents seeking such treatment.

Have a nice day Anonymous, whoever you are.

Harold Doherty
Fredericton NB Canada

Autism Reality NB said...

Anon

Before you seize on my typo to issue any discourses "ANA" should read "ABA".

Doherty

Maya M said...

Mr. Doherty, at first I couldn't quite understand why you were so indignant about Ms. Gernsbacher's article, but after reading your comments, I think that I understand (please correct me if I'm wrong): You think that researchers must be objective and if they are not (e.g. if they are autistics doing research on autism), their agenda will force them to do bad science.
This is quite a common opinion, but there are people who disagree with it, and I am among them. My experience shows that people can be objective only when they know very little about the subject and don't care about it at all. Researchers should of course be well informed about their field of research and also should have some passion towards it, so they are not expected to be objective. And the whole history of science shows that they are not.
This is especially true when the research field is not an abstract one but something from very real life. You write, "There is... a real concern about objectivity in any research resulting from persons who have an agenda to promote. The examples given by Ms Gernsbacher all have agendas that would impair any perception of objectivity particularly Michelle Dawson who actively campaigns against ABA." Do you mean that Ivar Lovaas and the other pro-ABA researchers have no agendas? That you can expect from a person who receives his salary for doing ABA to be objective about ABA?
There are research fields where nobody can be expected to be objective. E.g. every researchers belongs to one race or another and so is biased about race. Should, therefore, all research on human races be cancelled?
When the research field is some human condition, I find it is very good to have some researchers with the condition. Their experience is likely to give them ideas that would not even come to the minds of other people. So I am glad that Ms. Dawson does research on autism. Parents of children severely affected by autism should also be represented in autism research. I've read one of them - Michael Fitzpatrick; perhaps there are others I don't know about.
Ms. Gernsbacher has a point. Ms. Dawson has a point. You have a point. I welcome your defense of your point, but disagree with you that autistic and pro-autistic researchers should be silenced because of lacking objectivity.

Autism Reality NB said...

Maya M

Thank you for your comments. I did not though say that "pro-autistic researchers should be silenced because of lacking objectivity." Nor do I accept your characterization of these persons as pro-autistic researchers.

My concerns are:

1) That the high functioning autistic persons mentioned are not representative of all autistic persons, paricularly the very many autistic persons with low comprehension and communication abilities.Including these persons does not thereby include persons at the lower funcioning end of the autism spectrum in research.

2) Your comparison of Michelle Dawson to Ivar Lovaas is not a valid comparison. Ms. Dawson is an active campaigner in courts and political proceedings against and evidence based treament for autism. She has also publicly made very peforative statements against parents and organization seeking to cure and treat autistic children. THAT type of agenda and public position renders her incapable of any claim to objectivity.

Joeymom said...

I'm sure I will be drawn and quartered for commenting here, but I'm feeling vociferous this morning (and my Joey is having his ABA therapy, so I have a minute to BE vociferous.)

Joey is often referred to as "high functioning." It drives me absolutely batty. These labels have absolutely nothing to do with actual functioning. They don't even have that much to do with actual communication or social skill levels. In fact, I haven't seen "high functioning" and "low functioning" used in any consistant, useful way at all. They just seem to be ways to get around providing services, consulting autistics about issues and policies that effect them, and other negative, destructive label-abuse.

We don't have Joey in a 40-hour program. He's never needed that kind of intensity. He does very well with the one-on-one in learning and generalizing certain kinds of skills. Well and good. Its just one method for communicating and teaching- one that is actually used very often with NT kids, thoguht they don't give it a fancy medical term. You do somethig right, I reward you. You get teh answers right, I give you an A. Or a toy. Or a chocolate.

We do have some parents in our school system who insist that all autistic kids ought to be given 40 hours of ABA. Some of their kids need that much intensity just to teach them how to learn and to communicate with others what they have learned- this is the first step to being able to self-advocate. It is, indeed, very dificul to consult someone who cannot communicate with you.

However, insisting all kids get 40 hours of ABA is ignoring the indivudality of the child, dismissing the laws that require special education to be individualized, and not appropriate.

So we come to the happy medium- gauging, for each child, what methods they need to learn which skills that they need to survive, to thrive, and to be the best person they can be. Gauging what a child's potential might be, and listening and watching carefully to see what the child's strnegths are, and how to guide that child to improving their deficits.

As to whether or not you should find joy in your child, I can only say that I hope one day soon to write a blog entry called "Welcome to India." But then, I'm a South Asianist...

Anonymous said...

Canadian researchers have proven yet again recently (Scherer and Szatmari, February 2007) that autism is GENETIC. In other words, autism is a DNA code just like blond hair or green eyes or big feet are DNA codes.

This being FACT, there is no reason to continue to waste money searching for a CURE that will never exist because you cannot CURE autism anymore than you can CURE normalcy.

The thing to do is to stop trying to MAKE autistics act like neurotypicals and start learning how autistics think and feel and perceive their environment. Only then will we see true leaps in communication between the two.

Rather than focus on how 'bad' things are, it's time to focus on the 'good' within the situation and trust me, it exists.

And before you slam me for my comments, I'd like you know that I, too, am a parent of an autistic child -- a single parent!

Autism Reality NB said...

Anonymous 12:36 said:

"The thing to do is to stop trying to MAKE autistics act like neurotypicals and start learning how autistics think and feel and perceive their environment."

Really, it is that easy is it? And which autisics tell you that? The ones who are non-verbal and can't communicate with or without technology or the ones who post regularly on the internet? There are huge differences on the Autism Spectrum of Disorders.

Thankfully we did not subscribe to the Neurodiversity rhetoric that you espouse. We have worked to help our autistic son and to educate him in the way he learns as we would with any other child. And he has made huge gains because of those efforts.