Autism and the Media: Anti-ABA Activist Michelle Dawson Is Back In The CBC Spotlight Denouncing ABA

To my knowledge no one has ever accused anti-ABA activist Michelle Dawson of shying away from the spotlight  and  Michelle Dawson is back where she has been so often ... in the CBC spotlight. Once again she is peddling, in the name of science, ethics and "autistic people",  her anti-ABA rhetoric.  Ms Dawson repeats previous sermons in which she preaches  that provision of ABA interventions for autistic children lacks scientific support and is unethical. She offers nothing to back up her opinions. The CBC offers little help in that regard beyond pointing out that Ms Dawson is autistic, is a researcher and is, allegedly, an autism"expert". 

Borrowing a page from the heated rhetoric of the vaccine autism wars Ms Dawson asserts that ignorant, ill informed  parents are being duped by lobbyists and ...  in an interesting twist ... governments ... into thinking their autistic children must have ABA.  The CBC article Expert raps Quebec autism treatment makes no direct reference to the numerous reviews, from the US Surgeon General to the American Academy of Pediatrics,  that have examined hundreds of studies over decades of research and concluded that ABA is the most evidence backed effective intervention for helping autistic children overcome many of the deficits associated with autistic disorders:

"Autism expert Michelle Dawson says the Quebec government is wasting its money by funding "Applied Behavioural Analysis", known as ABA — a program she calls ineffective.

ABA is designed to reinforce behaviour through repetition. Dawson, who has autism, says she has evidence that the approach doesn't deliver what it promises.

The program doesn't optimize the overall wellbeing of people with autism, said Dawson, who researches the neurodevelopment disorder at the University of Montreal.

"In ABA you have the problem that these parents have been told by everybody, including by governments, if your child doesn't get this intervention, they're to some degree down the drain," she said.

ABA is one of the few treatments the Quebec government will finance.

"It doesn't have anything to do with science or ethics, or when you look at the well being of autistic people. It's just really effective lobbying by some people, including people who have pretty extensive conflicts of interest, or even they just are true believers, they have very strong beliefs in certain approaches, or very strong beliefs about autistic people that aren't necessarily grounded in science or ethics," Dawson said."

The CBC should  do more homework on the subject before, yet again, giving Michelle Dawson a platform to promote the same tired  anti-ABA beliefs that launched her into national fame in Canada. If it's journalists are too busy to read some of the many reviews, from the US Surgeon General to the MADSEC Autism review  to the American Academy of Pediatrics which have endorsed ABA as the most effective evidence backed intervention for autistic children  they could at least check with some of the actual autism experts and health authorities that she demeans before again giving her the CBC pulpit to promote her beliefs.  

The CBC  might also want to read  Dr. Edward K. Morris's published article about  Dr. Morton Ann Gernsbacher, an occasional co-author with Ms. Dawson and her mentor Dr. Laurent Mottron,  and a  comrade in arms in their struggle to prevent autistic children from receiving the benefits of ABA treatment: A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures:   

"This article presents a case study in the misrepresentation of applied behavior analysis for autism based on Morton Ann Gernsbacher’s presentation of a lecture titled ‘‘The Science of Autism: Beyond the Myths and Misconceptions.’’ Her misrepresentations involve the characterization of applied behavior analysis, descriptions of practice guidelines, reviews of the treatment literature, presentations of the clinical trials research, and conclusions about those trials (e.g., children’s improvements are due to development, not applied behavior analysis). The article also reviews applied behavior analysis’ professional endorsements and research support, and addresses issues in professional conduct. It ends by noting the deleterious effects that misrepresenting any research on autism (e.g., biological, developmental, behavioral) have on our understanding and treating it in a transdisciplinary context.

Professor Morris pulled no punches in his critique of Dr. Gernsbacher's public misrepresentations of ABA and the effect of those misrepresentations:

Sentiment against applied behavior analysis is not, of course, necessarily anti science. No matter what Gernsbacher’s sentiments may be, her achievements are anything but anti science.What stunned me, then, was how she reached her conclusions: She inaccurately represented research reviews, wrongly characterized applied behavior-analytic interventions, misleadingly appealed to history, inaccurately conveyed research designs, selectively omitted research results, and incorrectly interpreted intervention outcomes. Although misrepresentations often only a minor nuisance in science, they can have harmful consequences, which I believe hers did (and do), both locally and more broadly.

The local consequences included misinforming KU’s community members about ABA-EIBI; hundreds of KU students about a science of behavior and its application; current and prospective ABS majors about course of study at KU (and careers); and KU staff, faculty, and administrators about scholarship in a department renowned for its research in applied behavior analysis. The broader consequences include Gernsbacher’s probable influence on behavioral, social, and cognitive scientists who teach, conduct research, and provide services in autism; funding agencies and foundations who set priorities and allocate resources for autism research and applications; and state and federal agencies that set standards for autism services and funding. She has standing and stature in most, if not all, of these venues: in APS, of course, but also in the American Association for the Advancement of Science (AAAS), where she is a psychology section member at large, and in the National Science Foundation (NSF), where she is on the Advisory Committee for the Social, Behavioral, and Economic Sciences. Although Gernsbacher surely gained these highly respected positions by conducting first-rate science, the hallmarks of her science were largely absent in this section of her lecture.

In the article conclusion Dr. Morris, after a detailed review of the evidence in support of the effectiveness of ABA as an autism intervention, and after a detailed review of Dr. Gernsbacher's representations of ABA, explains why he wrote the article:

"Mainly, though, I wrote it for the families of children with autism and, ultimately, for those children who need and deserve evidence-based treatments, of which ABA-EIBI so far has the best support. Unfortunately, many parents are dissuaded from using it by misinformed, misguided, or misleading advocates of other approaches. As a result, they often use these approaches until they see their children’s poor progress. When they begin using ABA-EIBI to good effect, they speak of their great regret and guilt for not having used it earlier, when their children had the most to gain and the most time to make those gains. The opportunity cost of not using ABA-EIBI, or any equally effective intervention, is that their children will be delayed in achieving their full potential or never achieve it at all. As a result, their children will need more supportive services and institutionalization later into their lives and perhaps for the rest of their lives at significant personal and social costs to them, and financial costs to us all. This is a crime."

I have been unable to find a public reply by Dr. Morton Ann Gernsbacher to the Morris article, published in early 2009.  Dr. Morris had sent a copy of the article to Dr. Gernsbacher in 2008 shortly before she again presented lectures in which Dr. Morris states she continued to misrepresent ABA.  If Dr. Gernsbacher,  Michelle Dawson, or any of their followers, know of any public replies by Dr. Gernsbacher to the Morris criticisms I ask you to forward them to me.  In the meantime, hopefully, someone will bring the article to the attention of the CBC before it, once again, gives Michelle Dawson a platform to spread her anti-ABA ideology.  Until then the CBC may wish to avoid Michelle Dawson's anti-ABA rhetoric and read at least the following excerpt from the American Academy of Pediatrics 2007 publication, Management of Children with Autism Spectrum Disorders:

"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.31–4"

    

Autism Jabberwocky Questions Michelle Dawson's Understanding of Evidence Based Medicine Concept

Autism Jabberwocky one of the best, and best written, autism blogs on the internet features an excellent commentary  which highlights an apparent lack of understanding by anti-ABA ideologue Michelle Dawson of the concept of evidence based medicine.  As explained by MJ at Autism Jabberwocky in Michelle Dawson Writes A Letter.

:
"Evidence-based medicine is the idea that all medical decisions should be based on the best scientific evidence that is available.  The concept is really very straightforward. You take the results that research has provided, rank them according to the quality of the information, and use that ranked evidence to decide what the best course of treatment is."

Making medical decisions as to appropriate treatment based on the best available evidence seems simple enough to grasp.  It is an eminently practical concept.  People can not just wait  decades  for perfect research  studies to be conducted under perfect conditions (which may never occur).  They have to make  treatment decisions based on the best evidence of safe and effective treatment  available at the time they are confronted with a medical condition requiring treatment.

It is one thing for Michelle Dawson, researcher, to hold out for an ideal and perfect study that may never happen.  It is another thing altogether for parents trying to help their autistic children overcome their disorders and live the fullest, happiest life they can. They have to make decisions to help their children based on the state of knowledge at the time.

MJ summarizes concisely and accurately the status of ABA as an evidence based, effective treatment for autism disorders and the curious nature of Michelle Dawson's apparently irrational opposition to ABA: 

"One of the few treatments for autism that does have a solid evidence base is ABA (Applied Behavior Analysis).   While it is not guaranteed to work for everyone, the available evidence shows that it can be an effective tool to help teach children with autism and is almost universally recommended.

That is, with the exception of the universe of Michelle Dawson.  As I have pointed out before, Ms Dawson has a real problem with ABA. She seems to have an almost irrational obsession with proving that ABA is somehow unethical or immoral to use on children with autism. She would tell you that she has ethical concerns and that there is very little evidence that ABA works.  However, Ms Dawson is almost universally alone in her opinion."

Michelle Dawson is not completely alone though.  Her anti-ABA views are shared by her collaborative colleague Professor Morton Ann Gernsbacher.  Gernsbacher's anti-ABA views have been scathingly reviewed by Professor Edward K.  Morris of the University of  Kansas who commented on the harm caused by Gernsbacher's misrepresentation of ABA:  A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures.

Michelle Dawson has spent her post Canada Post career  trying to tarnish the public perception of ABA as an effective, beneficial autism treatment. To my knowledge she has never explained what autism treatments, if any,  do meet with her approval.

Fortunately  the serious and credible reviews of autism interventions that have been done over the past decade and a half do not appear to give her views, or those of her colleague Morton Ann Gernsbacher,   any weight or mention.

autism

Autism and ABA: Morris's (Unanswered) Challenge to Gernsbacher Will Be Featured at CalABA Annual Conference 2010

Edward K. Morris is scheduled to give what should be a fascinating keynote speech at the 28th Annual Regional Conference of the California Association for Behavior Analysis. Professor Morris's topic will be The Gernsbacher Lectures: Cut Aways, Outtakes, and Bloopers - and Essentialism. The CalABA conference is scheduled for February 18 to 20, 2010 at the Hyatt Regency in Irvine California.

Professor Morris published a scathing article in the Behavior Analyst, A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures, in which he thoroughly, systematically and candidly dissected and demolished her criticisms of ABA. To my knowledge Professor Gernsbacher has not provided a public reply to Professor Morris's challenge.

Professor Morris's speech at the CalABA conference should be interesting. Hopefully Professor Gernsbacher will attend and reply, or at least offer a public rebuttal in some forum, to explain her anti-ABA crusades in light of what appears to be a devastating challenge to her opinions from Professor Morris.

Gernsbacher has influenced people, helping to turn some parents and professionals away from ABA as an intervention for autism, one recognized by state agencies, the Association for Science in Autism Treatment, the US Surgeon General and the AAP as the most empirically validated autism intervention to date. Having done so, she should back up her views in public debate with an informed and capable opponent of her views. .... if she can.

autism

Autism and ABA - Edward K. Morris Accuses Morton Ann Gernsbacher of Misrepresenting ABA

WOW! I am not a fan of Morton Ann Gernsbacher and her positions on ABA and autism but I have never seen anyone thoroughly, systematically and candidly dissect and demolish her criticisms of ABA as Edward K. Morris of the University of Kansas has done in an article published in The Behavior Analyst and posted at Paul Coyne's site. The title of the article gets right to the point: A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures. Morris pulls no punches and states with respect to Gernsbacher's ABA criticisms that :

Sentiment against applied behavior analysis is not, of course, necessarily anti science. No matter what Gernsbacher’s sentiments may be, her achievements are anything but anti science.What stunned me, then, was how she reached her conclusions: She inaccurately represented research reviews, wrongly characterized applied behavior-analytic interventions, misleadingly appealed to history, inaccurately conveyed research designs, selectively omitted research results, and incorrectly interpreted intervention outcomes. Although misrepresentations often only a minor nuisance in science, they can have harmful consequences, which I believe hers did (and do), both locally and more broadly.

The local consequences included misinforming KU’s community members about ABA-EIBI; hundreds of KU students about a science of behavior and its application; current and prospective ABS majors about course of study at KU (and careers); and KU staff, faculty, and administrators about scholarship in a department renowned for its research in applied behavior analysis. The broader consequences include Gernsbacher’s probable influence on behavioral, social, and cognitive scientists who teach, conduct research, and provide services in autism; funding agencies and foundations who set priorities and allocate resources for autism research and applications; and state and federal agencies that set standards for autism services and funding. She has standing and stature in most, if not all, of these venues: in APS, of course, but also in the American Association for the Advancement of Science (AAAS), where she is a psychology section member at large, and in the National Science Foundation (NSF), where she is on the Advisory Committee for the Social, Behavioral, and Economic Sciences. Although Gernsbacher surely gained these highly respected positions by conducting first-rate science, the hallmarks of her science were largely absent in this section of her lecture.

Morris sent a copy of his critique of her ABA positions to Gernsbacher before publishing the article. Morris reports that after she received the article Gersnbacher continued to make the same misrepresentations of ABA which ... if she read the article ... might suggest that she did so knowingly. He invited her to participate in a symposium on the evidence for the efficacy of ABA- EIBI. She declined.

Morris offers his primary rationale for his devastating critique of Gernsbacher's ABA criticisms:

Mainly, though, I wrote it for the families of children with autism and, ultimately, for those children who need and deserve evidence-based treatments, of which ABA-EIBI so far has the best support. Unfortunately, many parents are dissuaded from using it by misinformed, misguided, or misleading advocates of other approaches. As a result, they often use these approaches until they see their children’s poor progress. When they begin using ABA-EIBI to good effect, they speak of their great regret and guilt for not having used it earlier, when their children had the most to gain and the most time to make those gains. The opportunity cost of not using ABA-EIBI, or any equally effective intervention, is that their children will be delayed in achieving their full potential or never achieve it at all. As a result, their children will need more supportive services and institutionalization later into their lives and perhaps for the rest of their lives at significant personal and social costs to them, and financial costs to us all. This is a crime.

autism

Autism Recovery: More Evidence of ABA Effectiveness

It has been a very bad week for the anti-ABA, anti-autism treatment crowd.

Laurent Mottron, Morton Ann Gernsbacher and Michelle Dawson, amongst others, are probably not happy with the latest autism research news out of Chicago where a study was presented at an autism conference by University of Connecticut psychology professor Deborah Fein showing recovery of between 10 and 20% of subjects originally diagnosed as autistic who were later determined to have lost the autism diagnosis after years of intensive applied behavioral analysis.

The recovery story itself is not knew. The highly respected Dr. Doreen Granpeesheh and other researchers and clinical psychologists, who actually work with autistic children, have presented stories of autistic children who have recovered after years of ABA treatment. What is most significant in this instance is the rigour of the analysis which resulted in the initial autism diagnosis and the thorough documentation involved in the study as reported in the Washington Post:

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein's research a breakthrough.

"Even though a number of us out in the clinical field have seen kids who appear to recover," it has never been documented as thoroughly as Fein's work, Dawson said.

Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent.

But even after lots of therapy _ often carefully designed educational and social activities with rewards _ most autistic children remain autistic.

Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said.

Fein is being responsible in cautioning that recovery will not happen for most children with autism who receive ABA. But that does not mean that it is an all or nothing proposition either. Gains in reducing problem behaviors as in self injurious behavior and aggression, and skill acquisition with ABA use are well documented as noted in the American Academy of Pediatrics Management of Children with Autism Spectrum Disorders report (2007):

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.31–4

ABA for autism. The evidence of ABA effectiveness in treating autism has grown over the past decade despite the ideological obstinacy of those who condemn ABA. This week that evidence grew yet again.

autism

CNN Provides Some Autism and ABA Reality

I have been a frequent critic of CNN's coverage of autism disorders, particularly what I saw as Dr. Gupta's fawning over, and multiple interviews with, Amanda Baggs, a person whose autism disorder characteristics many parents do not recognize in their own autistic children. I have to admit though that with Teen's family transformed after autism intervention CNN has shown some of the real challenges, tantrum behavior, self injury, family disruption, that can result from autistic disorders.

Just as important CNN has also covered an intervention by an Applied Behavior Analysis therapist. The story of how ABA helped the Bilson family and their autistic daughter should be must reading for ill informed opponents of ABA. Hopefully Dr. Gernsbacher, Dr. Mottron and their mentor Michelle Dawson will visit the site and try to approach it with an open mind. Their ideological opposition to ABA for autistic children has not been helpful. Hopefully they are still capable of learning.

Full marks to CNN for this autism reporting.

autism

Autism Is A Disability In West Virginia Woods

The Jacob Allen story has turned out well with the 18 year old low functioning autistic teen with limited communication skills found alive 4 days after getting lost in West Virigina woods while hiking with his parents. His severely limited communication skills could have cost him his life:

A spokesman for the rescue effort said Allen was found in the Dolly Sods Wilderness Area about a mile from where he left his parents during a hike on Sunday.

Because he is in good health and has hiking experience, and because temperatures have not been too cold, searchers had held out hope that he had survived. But his autism prevented him from speaking and responding to calls from searchers.

Neurodiversity advocates would have the world believe that autism is not a disorder; not a disability. This incident in West Virgina puts the lie to that absurd claim. So too does the case of Tiffany Pinckney, an autistic woman who starved to death. unable to help herself, while she depended on the care of her adoptive sister. So too does the case of the 50 year old autistic woman in a Long Island residential care facility who, unable to communicate what was happening to her, was repeatedly assaulted by attendants at the facility until the assaults were caught on video.

Hopefully neuodiversity icons like Professor Morton Ann Gernsbacher and Dr. Laurent Mottron will take time from studying high functioning autistic persons to give some thought to the more severely autistic persons who can not function in the real world and who are dependent on the good will of others to live. Maybe then they will not participate in creating the potentially dangerous myth that autism is not a disability.

Autism Intelligence - Does Language Matter?

Dr. Laurent Mottron is the leader of the Mottron-Gernsbacher-Dawson team that recently released a study in which autistic and non-autistic students were given two tests, the the WISC, which relies heavily on language, and the Raven's Progressive Matrices, in which the test taker has to select the missing pattern which would logically complete the series. The results, trumpeted across the Neurodiversity blogosphere, indicated that although autistic students tested in the lower intellectual range using the WISC test many did well on the Raven's test, presumably demonstrating that autistic students, or at least the ones selected by the Mottron team, had intellectual abilities not revealed by the WISC test which requires substantial language ability.

Given that the test was administered by Dr. Mottron's team with the autistic participants diagnosed at the same health facility where Dr. Mottron has spent his career studying high functioning autistic persons I have some reservations about the test, how it was administered and what it really means for autistic persons other than those chosen by the Mottron team. And the fundamental premise of this approach seems misguided. If you don't do well on one type of test, try another, keep trying until you find one that you can do well on , try one that doesn't involve something like ... oh ... understanding language.

Dr. Mottron's career has been spent studying autistic savants, persons with Aspergers and High Functioning autistic individuals as his study abstracts expressly state. He publishes as many as 3-4 such studies on high functioning autistic persons in any given year, year after year. I have been unable to locate, using Google Scholar, any reports where Dr. Mottron bothered himself with low functioning autistic subjects like my son Conor.

The good Doctor is also an active opponent of ABA intervention for autistic children. He has actually appeared before the Canadian Senate committee examining autism funding in Canada to oppose public funding of ABA intervention for autistic children. Dr. Mottron also provided an affidavit in support of his colleague Michelle Dawson when she applied for intervenor status before the Supreme Court of Canada to oppose the families in the Auton case who were seeking to require the BC government to include ABA treatment for their children under that province's medicare programs. Ms Dawson is herself a high functioning autistic person who has been active in opposing ABA and in criticizing parents and other activists seeking to obtain ABA interventions for their own children. Objective they are not.

Dr. Gernsbacher, the third member of this research trio, has publicly asserted that autistic persons like Ms Dawson should be consulted in researching autism issues. She has, to my knowledge, never addressed any resulting objectivity issues arising from subject participation in such research and whether researchers with such strong personal agendas can truly deliver an objective study or analysis of the issues on which they appear as public, legal and political advocates. Nor has she explained how low functioning autistic persons with limited understanding of language could be consulted with respect to such research. Does she assume that someone like Ms Dawson, who is very intelligent and has excellent communication skills, shares the same real world life challenges as a low functioning autistic person with limited understanding of language? Can someone who is at the very high functioning end of the autism spectrum of disorders communicate the perspective of someone who can barely communicate if at all because of an almost total lack of language capacity? Does it matter?

It seems particularly odd to me that Dr. Gernsbacher could assert that a high functioning autistic person should be consulted in research designed to measure autistic intelligence but not low functioning autistic persons. Of course, the lower functioning persons, like my son, would not be able to engage in such discussions because of his limited understanding of language. Presumably Dr. Gernsbacher believes that a person with a high functioning disorder on the autism spectrum can speak for someone who has a similar but different disorder on the low functioning end of the autism spectrum. It is not a position which I would endorse as the parent of a low functioning autistic child.

Language is one of the most striking characteristics of the human species. While many other animal species communicate with each other only humans have the capacity for such complex, abstract and adaptable communication. It is this communication capacity that has allowed us to become what we are today. It allows us to understand the world around us and to organize our societies, develop our sciences and medicines, govern ourselves by laws and understand the nuances of life through our arts. It is my son's lack of ability to comprehend language that makes it so difficult to communicate with him about almost every aspect of daily life. It is why a behavior based intervention like ABA is so critical in allowing us to communicate with Conor, the same ABA that Dr. Mottron and Ms. Dawson have publicly advocated against in Canada.

Conor has demonstrated intelligence many times. He routinely surprises us with his skills with computers and video equipment and his recognition of places and locations as we travel in the family car. But he has a very serious lack of ability to comprehend and communicate with language, written or spoken. It is that lack of ability in that critical area that renders him low functioning. The real world is not a Raven's Progressive Matrices test. Real World functioning requires understanding and ability with language to develop elaborate systems of thought and organization and to communicate the existence of basic dangers in daily life. The Real World is a difficult and unforgiving test. The Real World does not always allow for "do overs" if your child, lacking in language and understanding of life's complexities, wanders into automobile traffic or other such dangers. Language counts. Any measure of intelligence which excludes understanding of language does not itself pass the Real World test.

Neurodiversity's Ten Autism Commandments

1. Thou shall not call autism disorder a disorder.
2. Thou shall not seek to treat or cure thy autistic child for if you do you shall forever be known in the records as a "curebie".
3. Thou shall not conduct research into environmental causes of autism.
4. Thou shall not conduct research into the genetic nature of autism.
5. Thou shall not abuse thy autistic child by exposure to Applied Behavior Analysis or any other such evidence based effective autism interventions with which Satan, or Lovaas, may tempt ye.
6. Thou shall speak no evil, make negative comments or say bad stuff of autism.
7. Thou shall have no researchers before Mottron and Gernsbacher unless they conduct experiments in such a way as to prove that autism intelligence is really superior intelligence.
8. Thou shall make no mention of autistic youths and adults living in institutional care.
9. Thou shall not lay down with evil or watch the "Autism Every Day" video.
10. Thou shall repent for all thy NT sins.

Obscuring the Reality of Low Functioning Autism - An Example

Parents of low functioning autistic children do not have the luxury of denying our children's realities. Unlike Neurodiversity icon Michelle Dawson we must plan for their future after we are deceased or for when we can no longer physically care for them. We must also try to ensure they develop and otherwise are educated to the best of our abilities, while also providing them with a joyful childhood and doing the same for their siblings. We do not have the luxury of cloaking our children's well being in illusions. We must deal with the reality of their severe autism.

Ms Dawson, anti-ABA crusader, has appeared before the Canadian Senate and in the Supreme Court of Canada, in a determined effort to prevent our autistic children from receiving the ONLY intervention, health or education, that to date has met the evidence based standard of effectiveness in improving the abilities of autistic children and in reducing dangerous behaviors. She, along with Psychiatrist Laurent Mottron and Psychologist Morton Ann Gernsbacher, want us to believe that, because some autistic persons, whom they classify as low functioning, perform well on tests designed for them to succeed, that we should question whether they are indeed low functioning. We should disregard the real life evidence and experience of parents who struggle to help their children learn basic life skills, endure tantrum behavior in public places, disregard the serious injuries which our children inflict on themselves and occasionally on siblings, and family members and pretend that all is well.

The following example from a blog site called "Figural Effect The psychology of reasoning: theory and experiment" is a perfect example of Ms Dawson's skewed logic. In this comment she accuses me of "writing off" low functioning autistic persons, such as my son, also falsely accusing me of declaring that autistics belong in institutions. These accusations are pure fiction. I try to improve the lot in life of my son by ABA , the only evidence based effective intervention known to do so, an intervention which she opposes and has the audacity to accuse me (and other parent advocates for ABA for their children) as writing off our children? If I was writing my son and other low functioning autistic children off I would do as she does and oppose the funding of ABA interventions for autistic children.

I have never said that autistics just naturally belong in institutions as Ms Dawson claims. But unlike her I do not avoid at all costs the reality that there ARE autistic persons living in institutional care and that many more WILL live in institutional care. With 11 years experience living with and caring for my son I know he will never have the ability to live independently. That is a reality that I, as a responsible parent, MUST prepare for to the best of my ability.

Ms. Dawson has no such responsibility. She is free to continue to fight against ABA services for autistic children and to obscure the realities and challenges facing severely autistic individuals. In the following post she states "It is true that institutionalizing autistics ensures that our outcomes are terrible, no matter what our abilities are (yes, there is published science about this). But this is true of most people confined to institutions." In this comment Ms Dawson attributes "terrible outcomes" to the fact that some autistic persons are institutionalized. It apparently never dawned on her to ask WHY they are institutionalized to begin with. The answers she received would not be convenient for her glorification of autism.


Ms. Dawson and her partners in mischief, Laurent Mottron and Morton Ann Gernsbacher, should give their heads a darn good shake. The time is long past for them to start thinking about those children with autism who require tertiary care services for the violent self injury they inflict on themselves or for the restricted, starvation level dietary compulsions of some other autistic children. They should also visit some of the lower functioning adult autistic persons who can not live independently and who require constant supervision. These people are not "all over the literature performing well". Dawson, Gernsbacher and Mottron should take off their ideological blinders and deal with the autism realities of lower functioning autistic children and adults. The time is long overdue.


# Michelle Dawson Says:
April 8th, 2007 at 7:50 am

As I wrote in response to Mr Doherty on my own blog, of the six studies we cite in that paragraph, three report data from autistics whose measured intelligence was, on a specific instrument at a specific time, in the “low-functioning” range.

Given the opportunity, these supposedly “low-functioning” autistics were able to outperform their non-autistic peers, which leads to the cautious conclusion that–so long as they are not written off by powerful leaders like Mr Doherty–these autistics are not invisible. Indeed, they are all over the literature, performing remarkably well.

That is, the supposedly “low-functioning” autistics who Mr Doherty writes off are, given the opportunity, capable of performing not only at a level equal to non-autistics, but also at a level exceeding this.

It is true that institutionalizing autistics ensures that our outcomes are terrible, no matter what our abilities are (yes, there is published science about this). But this is true of most people confined to institutions. Insisting that autistics are write-offs who just naturally belong in institutions, as Mr Doherty forcefully does, ensures that autistics have poor outcomes, regardless of our measured abilities.


http://figuraleffect.wordpress.com/2007/03/29/autistic-superiority/

The Autism Reality that Mottron, Gernsbacher and Neurodiversity Don't Want to Acknowledge

Laurent Mottron and Morton Ann Gernsbacher are, respectively, a Psychiatrist and a Psychologist, both "autism" researchers, and both of whom work with high functioning autistic persons. These two individuals are icons of the neurodiversity movement which is led primarily by a segment of high functioning autistic persons for whom the very notion that autism might be a disorder is offensive. They have lent their support to the neurodiversity movement which goes to great lengths to obscure the serious challenges and realities faced by lower functioning persons with autism. While Mottron and Gernsbacher eagerly embrace the views of a high functioning autistic person like Michelle Dawson and declare that research and societal notions of autism should reflect the views of autistic persons they largely ignore lower functioning autistic persons and their more severe challenges and more disturbing realities. Parents of severely challenged autistic children are not worthy of consideration for inclusion in their construction of our societal notions of autism. Of course, it is easier to pretend that autism is not a disorder when you simply ignore the massive body of evidence to the contrary, particularly the evidence of parents like Tanya of South Carolina whose MySpace blog on autism would challenge the fairy tale views of autism promoted by the Neurodiversity movement.


Sunday, June 03, 2007


I HATE Autism...

I first have to say that I love my baby boy dearly. More with every breath I take...but I really hate Autism, and what it's doing to my son.

I watch him while he's sleeping, and he's so beautiful, so perfect. I caress his long dark curls and silently I pray that he'll wake up and it will have all been a dream. I fantasize about him opening his eyes in the morning and saying "Good morning, Mamma", just like his twin sister does every day. But the day begins, and there are no words...again. I do get a beautiful smile, and I thank God for that.

He goes to school every day, and I start getting nervous when it's time to pick him up, because I don't know if it will be a wrestling match, or the boxing ring. Jackson is a really big boy, and every day I have to carry him off the playground at school, kicking, screaming, throwing himself backwards...and if I'm not careful and I don't stop a couple of times, I'll drop him. He hits me and screams and everybody is staring...even the little kids are staring now.

Things were so much easier when he was a baby. His stimming is out of control! He waves his hands right in front of his eyes, and away again, over and over and over, while making his own little sounds and noises...a language all his own. Again...everyone stares.

He's so strong..and he's only 3 1/2...what am I going to do when he's 7...or 10? Is he going to get better?

How can I spend my days standing in one spot where he has taken me, not letting me move or it will cause an almost unrecoverable meltdown? How can he continue to live on drinking only bottles of milk and eating french fries and bread, because the texture of almost any other food is just too much for him? Am I going to be feeding him applesause from a spoon forever, or will he ever be able to use a spoon himself? Will I ever be able to comfort him when he's hurt or upset, or will he just keep pushing me away?



Why can't anyone answer me? Why do I feel so alone?

Why can't I help my son?


http://tinyurl.com/354eyf

Autism & The Neurodiversity Message - We Know What is Best for Your Autistic Children - Do Not Try to Treat or Cure Your Children

There are a number of disputes which plague the world of autism. Although none is as curious as the anti-autism cure movement known as "neurodiversity". Composed largely of persons with high functioning autism and Asperger's it is bolstered also by some parents of autistic children who subscribe to the view that by trying to cure their child's autism they are trying to destroy their child's essential identity. These parents, and some professionals, also repeat the Neurodiversity mantra that parents seeking to cure their children of autism or even to treat its more egregious symptoms actually hate their children. These parents and professionals then have no qualms about spreading their hostile message and accusing other parents who have not succumbed to the Neurodiversity message of hating their own children.

The current US court proceedings highlight the beliefs of some parents that their child's autism was caused by thimerosal, a mercury containing organic compound used as a preservative in some vaccines. Even the dates at which thimerosal ceased being used widely in vaccine preservatives, if at all. But nothing can compare to the circular, and at times bizarre, logic of the Neurodiversity advocates and their attacks on parents seeking to help their own children.

The fundamental premise of Neurodiversity is itself a sound premise, one with which I completely concur and one with which I am sure all parents of autistic children are in agreement - acceptance. Acceptance of autistic persons as human beings deserving of dignity, respect and inclusion in all aspects of society. After that fundamental premise however the Neurodiversity movement falls off the rails.

Not content with acceptance of autistic PERSONS, not content with acceptance of the fact that persons are autistic, the Neurodiversity movement tells us, parents included, that we must stop trying to treat and cure our autistic children; we must embrace our children's autism as a wonderful natural variation of human existence, one that, in some ways at least is even superior to other such variations. Indeed we must find and accept the joy of autism.

To reach this stage of Neurodiverse enlightenment parents are told, amongst other things, that they do not know what is best for their own children, they can not know what is best, unless of course, they too are autistic. Far better that they listen to complete strangers who have never met their children, never cleaned up after their children, never fed their children, never laughed with or tickled their children, never sang with their children, never fixed windows broken with their children's hands, never helped their children to eat as they literally starved themselves to near death states, never helped their children calm down while banging their heads against walls or biting their hands or wrists. Better to listen to strangers who will not be there for their children when they need residential and institutional care as adults. Stop presuming that mom and dad knows best. The experiences and observations of parents who live with, care for and interact with their autistic children on a 24/7 basis from birth onward should be given no weight. Parents know naught. Only the internet strangers who are, or claim to be, autistic can truly speak for all autistic persons including the children whose parents seek to help, treat and cure them. Only by embracing the wisdom of these strangers can parents reach Neurodiverse enlightenment.

When parents point out that these Neurodiverse sages do not share the same severity of autism as their children and can not possibly understand their children's challenges the Neurodiverse are offended. They are offended that parents would presume to divide autistic persons by the degree of severity of their autism. This is where the Neurodiversity logic breaks down totally and they reach and grab for any theory or explanation to maintain their self promoted presumption of autism expertise. Although the Neurodiverse embrace the label of autistic, or autism, as a descriptive term they reject its origins as a medical diagnosis, one of a spectrum of disorders of varying degrees of severity and different characteristics.

Autism is a term used loosely to describe a number of disorders now classified on Axis I of the DSM-IV, the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV), and known as the Pervasive Developmental Disorders. Autism Disorder is a PDD. In the 4th edition a number of diagnoses were added to the PDD's - Rett's Disorder, Childhood Disintegrative Disorder and Asperger's Disorder. Asperger's Disorder is the diagnosis which will likely be made for persons who have traditionally been labeled as having "High Functioning Autism." It is the appropriate diagnosis for individuals who have evidence of many Autistic-like symptoms but for whom there are no language impairments. - Meredyth Goldberg Edelson, Ph.D. Department of Psychology,
Willamette University. As Dr. Edelson also points out in Autism-Related Disorders in DSM-IV there are many variants in autism disorders. The reasons for tightening the criteria for Autism and for adding Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder to DSM-IV is to recognize that Autism is a disorder with many possible symptom variants. Because of this, individuals diagnosed with Autism in the past have been heterogeneous. . Notwithstanding that the Neurodiversity movement of some high functioning autistic persons, some sympathetic parents and professionals embraces the diagnostic label of autism they reject the other elements of diagnosis, the heterogeneity that gives rise to different diagnoses based on severity and nature of the autism or pervasive developmental disorders.

While rejecting the views of parents, who can not believe that these internet essay writers and interveners in court cases and political proceedings have much in common with their children, and while rejecting the professional classification which gives rise to the diagnosis of Autism which they embrace, the ND polemicists also ignore the writings of their own academic icons, particularly Montreal psychiatric researcher Dr. Laurent Mottron. Dr. Mottron has himself acted as an advocate for the Neurodiversity movement, filing an affidavit in support of Michelle Dawson who intervened in the famous Auton proceedings before the Supreme Court of Canada and appearing himself as an expert witness before the recent Canadian Senate proceedings examining funding of autism treatment in Canada. Dr. Mottron, like his colleague Michelle Dawson, opposes Applied Behavior Analysis as a treatment for autism.

The good Dr. Mottron, notwithstanding his entrenched opposition to ABA as a treatment for autism, does not appear to have any serious expertise as a clinician and appears to have a very narrow range as an autism researcher, focussing his several studies and reports per year almost entirely on subjects which his reports themselves invariably describe as HFA (High Function Autistics), Asperger's, and even Autistic Savants. Thus while the Neurodiversity movement has appointed Dr. Mottron as one of its heroes it seems to have overlooked the fact that he himself uses a descriptive system which recognizes different levels of severity, different symptoms, of the various and heterogenous PDD or Autism Spectrum Disorders. Dr. Mottron's high functioning autism studies also contribute to the efforts of such as Morton Ann Gernsbacher and their mutual colleague Michelle Dawson. It does not appear that any of this illustrious trio will soon be rushing out to study, or heaven forbid actually work with, the lower functioning autistic persons residing in institutional care and unable to communicate in any meaningful way with other people.

At the end of the day the fundamental contradiction of the Neurodiversity movement is that it is a movement of people who organize based on a spectrum of neurological disorders, a spectrum divided by deficits of differing types and severity who then argue that their disorder are not disorders at all just different orders. And then some argue that they are the only truly authentic voices for these disorders (which are not disorders) even though their deficits are different than those of the children whose parents are trying to help them through treatment or cure.

And while they are quick to complain about the insensitivity of language used to describe the serious challenges faced by more severely autistic persons they are equally quick to use pejoratives such as "curebies" to describe concerned and caring parents. The neurodiversity crowd even stooped to accusing the parents in the touching video "Autism Every Day" of having faked or staged the video. I was not in the "Autism Every Day" video. But my son who I love dearly presents, along with great joy, incredibly challenging deficits which threaten his own safety and that of his brother, mother and even me, as when driving I am grabbed from behind by a suddenly distraught autistic son.

The Neurodiversity movement is at best silly and at worst insulting, abusive and dangerously misleading. I, for one, will never drink the Neurodiversity Kool-Aid. I will leave that to those who believe that, in order to find joy in their autistic child, they must find joy in his or her autism, a mistake I will never make.

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