Sunday, December 28, 2008

Michelle Dawson, ABA and Autism in 2009

I read recently still more anti-ABA commentary from Ms Michelle Dawson, a long time crusader against government provision of Applied Behavioral Analysis for autistic children. Together with her colleague, Dr. Laurent Mottron, she has appeared as an "autistic" before the Supreme Court of Canada and before a Canadian Senate committee examining funding of autism treatment to oppose government funding of ABA treatments for autistic children.

Ms Dawson also comments frequently on the internet, and in the mainstream media, to speak on behalf of "autistics" and to advocate against ABA for autistic children in Canada. Ms Dawson takes great pleasure in explaining how the professionals who contribute to the American Academy of Pediatrics, the MADSEC (Maine) Autism Task Force, the New York State Department of Health, the Association for Science in Autism Treatment, and any of the professionals who actually work with autistic children, including heaven forbid, low functioning autistic children, are wrong about ABA and its effectiveness in helping autistic children make substantial, sustained gains as summarized in 2007 by the AAP:

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations.

ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. 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.31–40


Given the well documented record of sustained gains reported for autistic children using ABA, as reported by such credible agencies, it is difficult to understand the opposition by Michelle Dawson and her colleague and supporter Dr. Laurent Mottron. The writings of neither of these two staunch opponents of ABA disclose any first hand involvement with ABA.

Nor is it clear whether they have any direct contact with severely impaired autistic persons, you know, the ones who do NOT appear before legal, political and media entities on a regular basis, the people, like my son who require 24 hour supervision, the ones living in institutional care, THOSE "autistics", the ones whose existence Dr. Mottron and Ms Dawson rarely, if ever, mention. Dr. Mottron publishes several papers a year in learned publications about autistic savants and persons with Aspergers and High Functioning Autism. (With 2009 literally around the corner look for more papers from Dr. Mottron on autistic savants and the charcteristcs of superior autistic intelligence). Dr. Mottron is OK with Canadian tax dollars going to support his "research" into savant intelligence but opposes funding of ABA interventions for autistic children even those with limited communications, the "autistics" who do not appear in his frequently published papers.

Michelle Dawson, in addition to being a researcher working with Dr. Mottron, and assisting his investigations of high functioning autism, is also herself an "autistic". Affidavits filed by Dr. Mottron and Ms Dawson, then a postal worker, in support of her appearance as an intervenor before the Supreme Court of Canada describe her as an autistic person or autistic individual. She also states that she was diagnosed with "autism". Her specific autism spectrum disorder, or pervasive developmental disorder, is not expressly mentioned in either affidavit.

In her affidavit Ms Dawson, despite a slim affidavit record of her own "autism", challenged the legitimacy of the parents and professionals who appeared in the proceedings:


20.

In addition, no autistic individuals testified or participated in the process. Yet there are autistic individuals who could have coherently and cogently explained the realities of autism, with both its benefits and weaknesses to the courts.


21.

The courts were only left with the perspective of parents and the state in what became an argument over who was responsible to assume the costs of dealing with the disability;


22.

I believe that the perspective I could bring to this Court would be of assistance to the Court and allow it to have a fuller understanding of the issues before it;


23.

I know of no association or group seeking to intervene in these proceedings who could bring the true perspective of autistic individuals;


24.

While several groups and associations exist to promote the rights of autistic individuals, in my experience, they are usually dominated by parents and professionals, and very seldom have any input from autistic individuals, even when the autistics seek to participate in these organizations.


Ms Dawson intervened in Auton, according to her solemnly declared affidavit, because she offered the true perspective of autistic individuals. She made this solemn declaration without stating her specific autism spectrum disorder, elaborating on why she herself was not diagnosed until she was an adult in 1993-4, or discussing any differences that might exist between "autistics" who can appear before the Supreme Court and those who struggle with basic language. Nor did she explain in her affidavit how she could speak on behalf of those autistic children and adults who, unlike her, cannot speak at any significant level.

A few years ago I had the pleasure of two very brief telephone conversations with Ms Dawson. She contacted me because I was at that time the President of the Autism Society New Brunswick and she was interested in obtaining a copy of a document prepared for the ASNB by a Universite de Moncton law professor pertaining to autism and the Canadian constitution. I was surprised later, when learning of her intervention in the Auton case in the Supreme Court of Canada, that she purported to speak on behalf of so many other autistic persons; given her obvious abilities contrasted with the severe challenges faced by so many autistic persons, including my son.

On reflection I also remembered our brief conversations and the fact that despite taking on this self appointed representational role on behalf of "autistics", including my son, she had never asked me, during those conversations any questions about autistic people in New Brunswick or the health, education or living conditions of persons with autism spectrum disorders in New Brunswick. She disclosed no obvious interest in informing herself, while talking to the then President of ASNB about conditions faced by autistic persons in New Brunswick. (Nor did Ms Dawson ask whether we had any persons with an Autism Spectrum Disorder serving on our Board of Directors)

Of course Ms Dawson's failure to ask me any such questions now makes perfect sense having read her affidavit. As a mere parent of an autistic child I had no information that would be of any value to Ms Dawson who after all is an "autistic". Despite the responsibilities that nature, our society and our laws bestow upon parents to care for and nurture our children, we are not qualified to represent our autistic children's interests in Ms Dawson's view. Despite living with them, caring for them, loving them and sacrificing for our children, despite seeing their challenges and struggles up close and helping them overcome those challenges we can not possibly offer the perspective that Ms Dawson, a total stranger with no commitment to them or responsibility for their well being, can offer because she is after all an "autistic".

My son is severely "autistic". His diagnosis is autistic disorder, assessed with profound developmental delays. He can not speak for himself in ordinary daily interaction let alone before the Supreme Court of Canada. The information I just presented is supported by professional assessments and is more information than Michelle Dawson supplied in her leave to intervene affidavit in Auton. Michelle Dawson, whatever her diagnosis, has nothing in common with my son and does not, and never did, bring his "perspective" to courts, legislative bodies or in her media appearances.

Michelle Dawson will continue in 2009 to tell the world that the AAP, the US Surgeon General, the New York State Department of Health, the MADSEC (Maine) Autism Task Force, the Association for Science in Autism Treatment, Dr. Mickey Keenan of the University of Ulster, Dr. Doreen Granpeesheh of the Center for Autism and Related Disorders, Dr. Alan Harchik of the May Institute, Dr. Paul McDonnell, Professor Emeritus (Psychology), Dr. Ivar Lovaas, and literally thousands of other health care professionals and researchers are all wrong about the effectiveness of ABA in helping autistic children make sustained substantial gains in intellectual and social skills.

Meanwhile in 2009, Michelle Dawson and Dr. Mottron will undoubtedly continue to receive Canadian tax dollars for their research into, and publish papers about, autistic savants, Aspergers and high functioning autism. Curiously omitted from their scholarly works will be the severely autistic, those with cognitive deficits, those who injure themselves and others and live lives of dependency and solitude after the parents and others who actually care for them are gone.

If past is prologue Ms Dawson will still not ask about those "autistics" much less fortunate than her, like my son, or other autistic persons in New Brunswick, or elsewhere. Ms Dawson will continue in 2009 to ignore the existence of intellectually impaired, communication challenged, severely autistic persons on whose behalf she purports to speak. And she and Dr. Mottron will continue to oppose government funding of ABA for autistic children.




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9 comments:

Stephanie Lynn Keil said...

I receive a variety of treatments. One of them probably is ABA but they don't call it ABA.

I HAVE to have a motivation to do anything I don't want to do. And as I have autism that list is quite vast.

My current motivations are art and music. They will say to me, "Now Stephanie, today you have to work on ___." I usually won't want to but then they say, "After we work on ___ you can paint for a little while before we work on something else. If you don't want to participate then you can sit there until you go home or you can participate and then paint for awhile." And they mean what they say: I've sat in the same place all day once, miserable. They wouldn't let me do anything. I whined, had a meltdown, but they didn't let up on what they said. That only happened once. The next time I participated and they did what they promised: I could paint.

Without my motivations (and punishment for not participating) I would be very disabled because I wouldn't care enough to do anything and just remain in my own world. It's not always fun but therapy isn't always supposed to be fun.

Art and music therapy has also been wonderful for me, too.

Stephanie Lynn Keil said...

What really annoys me about these "autistic" people speaking on behalf of people with autistic disorder is the fact that they claim to be severely autistic but that their superior intelligence cancelles out the severe autism. I, too, have superior intelligence (that couldn't be measured until I was 18 when I developed a social conscience and actually understood the significance); I have an IQ above 120. My IQ reflects my severe language impairments: I'm retarded in the verbal section but a genius in the non-verbal section. My severe language defecits are seen every moment in my life: I can only understand concrete language (both oral and written), I take everything literally, I have severe problems understanding what people are saying, can't understand anything social/political, can't have a conversation (even online), can't really even speak. I also, despite my high IQ, still have severe communication and cognitive defecits from my severe autism. No one can claim that I am retarded in an intellectual sense but they can easily claim I am retarded in an autistic sense (because I am).

I see so many people who claim to be "severely autistic" and that they have accomplished what they have because of "superior intelligence." I don't understand these people because we think very differently: they have conversations about their autism and form social skills groups and "autistic communities," things I cannot do and do not understand why they do these things in the first place. They "advocate" for other autistic people, actually care about other autistic people, actually realize that other people exist and are different from them. I still do not understand why I need to have relationships and why I need to communicate with other people, other than to get what I want. I still don't know what other people think although I now know they think differently from me. I still crave isolation and reject any attempts at social contact (aside from the internet which provides distance). I still live in my own world (only about 75% of the time now), still injure myself, still cannot communicate well verbally, still reverse my pronouns, still "stim," am still "severely autistic" in every way except for the fact that I have superior intelligence, a high IQ.

I can do advanced math but the world, especially the social world, which all of these "severely autistic" people navigate so well, is very confusing and terrifying to me. So I avoid it and retreat into myself. I don't care about "autistic communities," about Neurodiversity, about advocating, about politics; I have never been attached to another person, not even my mother. When my mother moved to Texas I didn't even care. In fact, I was glad she left because now she doesn't annoy me so much. I know this sounds cold but that's the reality of "severe autism." And I recieve intense treatment for my autism because without it I would be locked away.

Autism is primarily a social and communication disorder and people obviously have forgotten that. Severe "stimming" and not knowing how to boil water are not autism; I "stim" but I know how to take care of myself (because I have a high IQ) but not anyone else, I do not communicate with others and do not understand anything social. I currently survive and navigate the world without talking to another human (verbally). I'm very egocentric and have obsessions and rituals/routines which dominate my life. Where are the obsessions and rituals/routines of all of these other "severely autistic" people? I realize that symptoms vary from person to person but these are seen in every person with severe autism, whether they have a high IQ or not.

I've given up trying to make this logical so I am now just giving my opinion...

Barry Hudson said...

Hi Harold,

After our son was diagnosed with autism, in addition to research supporting ABA, I read much of the writings by Dawson [including her entire blog] and Morton (as well as the complete affidavit of Dawson you quote here). I felt it was reasonable to hear [read] an ABA counter argument as part of my research to find out how to best help my son. If I did not read both “sides” I felt my research would be lacking. In my view the writings of Dawson and Morton have an underlying current of conclusions based on dated research, personal angst and being able to quote some studies that say ABA is not effective. I do not know what has transpired to create such disdain for ABA but the conclusions that ABA is harmful ignores the advances in the processes and procedures since Lovaas’s first study. The person that diagnosed our son was not an ABA supporter saying (as Dawson and Morton have said) that ABA creates a robotic like behavior. Such a conclusion ignores the research of Partington, Sundridge, and Carbone (these being the big names, I do not mean to limit the advances contributed by others).

In the case of my son we still do not know where he sits on the spectrum. He is four and a half and is verbal (for wants at a basic level, he is not conversational) and he has basic personal care skills for dressing, eating, toileting and in terms of receptive skills he is near age appropriate. Our son has been in ABA for about year and a half (roughly 25 – 30 hours per week). Prior to ABA our son was entirely incapable of any of the afore mentioned skills, spent the entire day stimming (crouching and rising up like a flower – an action he seen in preschool that the preschool let him do all day so he would not need any attention, we took him out of the preschool the second we found this out).

We used ABA to teach our son the skills he has and we have the video to prove it. If one believes he would have acquired the skills he has on a spontaneous basis they are sorely mistaken. Without the use of ABA and consistent behaviors in daily living I doubt our son would have advanced to where he is now. We have not used any form of aversive or punishment (the issue often derided by nonABA supporters as being ABA’s terror). Rather, we have used positive reinforcement only. AntiABA folks appear to have no understanding that ABA is a means of teaching.

In my view governments want to keep Dawson and Morton around so that they can say – Gee, look, our funded experts do not agree! This is simply a means to avoid supporting (and funding) meaningful therapy and support for ASD individuals. After our son’s diagnosis I realized that our society (and governments) do not want to really help ASD individuals, they are only reacting to vocal parent advocates. This is not a negative opinion, this is an empirical observation. Prior to being part of the community I honestly had no clue this was the state of our country.

So, for 2009 I (with others) will continue to advocate for my son and others afflicted by ASD to get the appropriate therapy and support they need regardless of those that oppose. At one time in history the research in the use of penicillin was seen as an uneconomical waste of time. Like the opposition to penicillin I am confident history will prove the value of ABA.

Best Regards,
Barry

Anonymous said...

Firstly, Mr. Doherty, I would sincerely like to thank you, from the bottom of my heart, for the phenomenal advocacy you do when it comes to presenting the facts about autism.

Many of your blog pieces provide excellent, useful information that most of us lay-people, of whom I'm sure a good proportion of your readers happen to be parents (like myself), and just don't have the time, nor the resources, to discover this type of information on our own.

I apologize in advance, if I've chosen the wrong forum to point this out but, this article alone 'points out' the utterly ridiculous exploits of some 'professionals' (I use this term very loosely) and the activities of ONE (and only one) who has decided that she has the authority to speak for all autistic people, based on her experiences/comprehension of what ABA is for the whole autistic community.

As well, not to mention that these 'two' are utilizing precious scarce government resources to further perpetuate their utterly ridiculous anti-ABA campaign.

If anything can be learned from this, we need to realize that as long as disabilities exist on this planet, we need to utilize prudent judgement when supporting or partaking in activities like you've blogged about today.

We need to do our 'homework', so to speak, to educate ourselves as to not only where our tax dollars are going, but also to be very wary of so-called professionals who claim to have 'the answer' when it comes to helping our precious children.

For example, one of these scams called 'ACEPathways', of which I'm sure you're fully aware of as this 'fraudulent clinical trial' has been run out of New Brunswick,and is another prime example of how families are being 'duped'.

However, on Ms. Cherie Peattie's blog (http://cherieautismmom.blogspot.com/), someone has actually taken the time to show parents how to use their voice to put a stop to this scam, posted on Dec. 22nd/08.

I have only taken the time to write to you about this to show, that as one person, if you so choose, use your voice and utilize the resources around you to put a stop to these ridiculous exploits such as what you've blogged about today.

It only takes one person but the more people who join in, the stronger our voices become!

I think it's become very obvious, especially by the comments of the very brave Ms. Stephanie Lynn Keil, that our precious family members who are autistic, need us to give them a voice and advocate on their behalf, if they're unable to do so on their own! (As Ms Keil has pointed out that before the age of 18, she would've remained in 'her own world' if ABA had not provided the bridge and opened 'the door' so to speak)

Thank you most sincerely, once again for all the important work you do, Mr. Doherty.
All the best to you and your precious son and family, in the coming New Year!

farmwifetwo said...

Is she against the ABA found in Ontario's PPM 140 http://www.edu.gov.on.ca/extra/eng/ppm/140.html that is used in the Public School System or the ABA therapy my son was subjected to?? B/c I'm not certain she understands the difference??

I am for the first, and I am against the second. Which you already know.

Personally I wish they'd call the first something other than ABA. Would make it much less confusing.

I wish there was some way that gov't's would allow for a multiple of thoughts and ideas and options for parents of children with special needs. I have read enough by people with autism that also don't believe in the full left-wing (assuming cure to be far right) of the neurodiversity movement either.

The assumption that one person, one group whether it be Autism Speaks, The Autism Acceptance Project or Michelle Dawson actually knows all there is to know about autism and what is required for every person with the disorder and, every family is damaging to all.

Would be nice if they would work together and have a variety of ideas and suggestions instead of this "my way or the highway" philosophy.

S.

mike stanton said...

Why do you refer to Michelle Dawson as "autistic" in inverted commas? Do you question her diagnosis?

Autism Reality NB said...

Mr Stanton

"autistic", as you know, is not a diagnosis. The DSM currently lists 5 Pervasive Developmental Disorders, (Autistic Disorder, Rett's Disorder, Childhood Disintegrative Disorder, Asperger's Disorder, Pervasive Developmental Disorder, Not Otherwise Specified), that are now commonly referred to as Autism Spectrum Disorders or even just Autism.

I have no idea what Ms Dawson's specific diagnosis is and I do not know her assessments either in terms of deficits associated with her Pervasive Developmental Disorder.

I do know, having spoken with her briefly, and having read much of her anti-ABA writings that she does not share the same challenges as my son who has been diagnosed by two developmental pediatricians as having Autistic Disorder and assessed by a clinical psychologist and professor emeritus (psychology) as having profound developmental delays.

Ms. Dawson faces much different challenges as a result of her "autism" than my son faces. She had no "true perspective" to offer on his behalf before the Supreme Court of Canada where she intervened as part of her continuing effort to prevent Canadian children from receiving government funded ABA treatment.

Stephanie Lynn Keil said...

It seems to me that people want to get better immediately and thus go for treatments that promise immediate treatment -- whether it truly works or not.

It took me years to get where I am today, years that most don't seem to want to dedicate to one treatment. It seems to me parents would rather try a variety of different treatments all promising to alleviate the "core" and not the behavior. But it usually doesn't work. Perhaps at the beginning it appears promising, but usually the hope fades.

My autism "core" has not changed, but I have learned to change my behavior to adapt better to the world and to understand myself and the world better.

mike stanton said...

Autistic is an adjective used to describe people with autistic disorder. Michelle Dawson is diagnosed with autistic disorder. She may not share your son's challenges. But there again she does not share his diagnosis of severe developmental delays.

As you know, I teach children with severe developmental delays. Some are autistic as well. I would like to see more research in this area. It may be that the combination of global delay and autism presents a different set of challenges to those experienced by people who are just autistic. I know that these individuals are far more complicated to teach than children who just have a global developmnetal delay.