Canadian Government Funded Study Advice for Parents of Children with Autism: ABA Doesn't Work, Set Your Children Free and They Will Prosper!

A study funded by the Canadian Institutes of Health Research (CIHR) has found, surprise, surprise, that ABA is of limited effectiveness in treating autism.  The Pathways in Autism Spectrum Disorders study led by Dr. Peter Szatmari, Dr. Dr. Susan Bryson and Dr. Eric Fombonne was established with the belief at the outset that ABA is of limited effectiveness in helping low and high functioning autistic children. It was also established, not surprisingly given its government financing, and the predispositions of the lead researchers, with a view to avoiding the expense associated with providing ABA intervention.

Reducing expense is an obvious concern of a federal government which has been under pressure to provide ABA coverage for autism under our national medicare scheme. Dr. Szatmari, Dr. Fombonne and Dr. Bryson signed on to the federal government initiative to discourage medical coverage of ABA many years ago as evidenced in their 2006 Brief to the Canadian Senate. Their opinions, as articulated in 2006, are also reflected in their recent 2011 video.  Plus ca change, plus ca rest la meme. 

In  the  2006 brief to the Canadian Senate the Pathways in ASD lead researchers declared unequivocally that autism is an entirely  genetic disorder with Dr. Szatmari dedicating his career to finding the genes in question:

"For example, we do know what causes autism. It is caused by genetic factors [20]. It is an inherited disorder. The answers to what is inherited and how it is inherited are not known. But, along with my colleague, Dr. Steve Scherer at the Hospital for Sick Children, we at the Offord Centre for Child Studies are leading an international team of scientists dedicated to finding the genes that cause this disorder." [emphasis added HLD]

What is interesting is that Dr. Szatmari professes great faith in an evidence based approach to autism interventions yet  when discussing autism causation is prepared to declare autism to be an inherited, genetic disorder without knowing what genes cause the disorder, what is inherited and how it is inherited.  Evidence based?  Of further interest when news broke of the California Autism Twins Study, (CATS), interpreted by most observers as debunking the myth that autism is entirely genetic, that autism probably results from gene environment interaction,  Dr. Szatmari took a much different view pointing to the study as being of significance  because it confirmed the importance of genetic factors in causing autism, a very strange view given the dominance of genetic based autism research,  over the previous two decades:

“This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder but it shifts the focus to the possibility that environmental factors could also be really important."[emphasis added HLD]

In its 2006 submission while professing support for evidence based autism interventions the Szatmari, Fombonne and Bryson trio acknowledged that early intervention was necessary but immeidately set to work discrediting both ABA effectiveness and the struggle by parents to require government funded medicare coverage for our autistic children:

"It is true that early intervention makes a difference but it is not true that all children need exactly the same type of treatment [2, 21]. Not all children need incredibly intensive intervention that takes between 20-40 hours a week. Some children do respond, but some children do not respond to even that level of intensity and need another form of treatment. Others do not require that level of intensity and can do just as well with less intensive forms of treatment that are carried out in more naturalistic settings [23]. We do not know the relative proportion of those types of children but there is now more and more scientific evidence showing us that different forms of intervention can be adapted to different types of Autism Spectrum Disorder. More work needs to be done but we are much farther ahead today than we were even five years ago."

The 3 doctors do not elaborate on what interventions, other than ABA, can be fairly described as evidence based.  Like all critics of ABA they provide no real alternative.  Nor did they acknowledge the research summarized by US agencies like the office of the US Surgeon General, the MADSEC Autism Task Force, state agencies in New York and California which have reviewed the research literature and found  ABA to be the only evidence based effective intervention for autism.

The Szatmari, Fombonne, Bryson support for the federal government autism agenda is considerable. They diminish ABA as ineffective, contrary to US authorities, and expensive.  At the same time they attack the parents who advocated for government funded ABA characterizing their litigation efforts as founded on "ill will":

"The problem is that so much animosity and ill will has built up over the last few years that it is extremely difficult to engage all the stakeholders in constructive conversations in this environment. Is there any other disorder of childhood that has gone to the Supreme Court of Canada? This ill will and this variation from province to province is essentially the direct result of a lack of information, a lack of knowing what the best treatment for each child with Autism Spectrum Disorder might be. This lack of knowledge leads to a dearth of well-qualified practitioners, long waiting lists, and non-evidence based treatments all across the country." [emphasis added HLD]


Of course the 3 doctors mention that parents are involved as part of their consultations on autism strategy. I have commented in the past on the CIHR national autism strategy consultations which included the Dr.'s Szatmari, Fombonne and Bryson.  When the national autism symposium was postponed without compelling reasons the Autism Society Canada twice expressed its concerns over the direction CIHR and the federal government were taking autism consultations. My name as a delegate was rejected by CIHR despite being put forward by the Autism Society New Brunswick as a representative and was approved by two further references, one a registered nurse and mother of an autistic child and the other a clinical psychologist with an active autism practice in New Brunswick.  When I contacted CIHR for an explanation I was told that the names of delegates were those put forward by the Autism Society Canada (Even though the federal government position was that autism was a provincial, health care, issue). (a)(b)(c) (d) (e)

The truth was that the federal government and CIHR did not want parents at the consultations who were advocating for government coverage of ABA treatment for autistic children.   Doctors Bryson, Fombonne and Szatmari all participated at the autism "consultations" when they were finally held in November 2007.  While parental ABA advocates were excluded opponents of curing autism  like Michelle Dawson and Dr. Laurent Mottron were included. In the 2011 video Dr. Szatmari tells us that the study originated with parents and with the community. In truth they excluded discussions with parents seeking ABA for their children.

Now the federal agenda friendly team of Bryson, Fombonne and Szatmari,  has put a video online in 2011 which, as they did in 2006, the 3 doctors diminish ABA as an intervention.   Meanwhile the American Academy of Pediatrics published a directive in 2007 which described the gains made by autistic children who received early ABA intervention.  That policy directive was confirmed by the AAP in December 2010.  The Szatmari/CIHR video confirms the 2006 opinions of the 3 doctors presented to the Canadian Senate but ignores the AAP conclusions and research subsequent to 2006.

In the CIHR video Dr. Szatmari paints the study as parent and community driven.  In fact it is only those parents and community members who were not ABA advocates that were involved in this government financed, tightly controlled, manipulated and driven symposium/ consultation process.

In Canada parents looking for help for their autistic children have Bryson, Fombonne, Szatmari and their colleagues in arms in the battle against ABA, Mottron and Dawson, to provide guidance.  Fortunately though, hysterical and ill willed parents seeking real help for our autistic children are able to use the (gasp) internet and  we are able to access American authorities, like the office of the US Surgeon General, the MADSEC Autism Task Force, the Association for Science in Autism Treatment and the American Academy of Pediatrics,  who are not tied to our Canadian federal government anti-ABA agenda.

God Bless America!

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Characterizing ABA Treatment for Autism as Experimental is Arbitrary and Capricious

Anti-ABA activists at the Universite de Montreal and elsewhere in Canada and the US will probably be upset over the news that Blue Cross has settled a lawsuit brought in Michigan reimbursing parents of autistic children for the costs they paid out for ABA treatment for their autistic children.

As indicated by Jon Hood on the Autism News, Blue Cross had initially defended the suit on the basis that ABA was experimental and therefore not required to be provided under their health insurance policies. Lawyers for the parent plaintiffs in the case "argued that characterizing ABA as experimental was arbitrary, capricious, and possibly even illegal."

Some choice remarks from the article at the Autism News:

"Blue Cross acknowledged in a 2005 draft policy that ABA is anything but controversial. That draft explicitly noted that ABA is “currently the most thoroughly researched treatment modality for early intervention approaches to autism spectrum disorders and is the standard of care recommended by” a number of professional organizations, including the Association for Science in Autism Treatment.

Additionally, as the draft pointed out, the earlier the treatment is applied, the better the child’s prognosis for a normal and productive life.

During a court deposition, Dr. Calmaze Dudley, Blue Cross’s medical director, said that he would “probably” employ the therapy if he had a child with autism.

Fortunately for Canadian autistic children the same American studies and reviewing agencies referred to in the Autism News report have provided the foundation for much of the successful parental advocacy for ABA coverage that has occurred in some Canadian provinces.

Unfortunately the Canadian government still refuses to get involved in helping autistic children across Canada. While the Canadian Institutes of Health Research have no qualms about funding the recent study proving that high functioning autistics are up to 40 percent faster at Raven's Standard Progressive Matrices (RSPM) problem-solving than non-autistics it doesn't spend a single dime to ensure that autistic children in Canada receive the ABA treatment that even American commercial health insurance providers acknowledge is the the most thoroughly researched treatment modality for early intervention approaches to autism spectrum disorders.

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The Sorry State of Autism Research In Canada: Fombonne's Not So Revolutionary New Autism Paper

In Study Watch : Epidemiology of pervasive developmental disorders MJ, author of the Autism Jabberwocky Blog, comments on Canada's latest contribution to autism research from Dr. Eric Fombonne of the Department of Psychiatry, Montreal Children's Hospital of the McGill University Health Centre, Montreal. MJ feels that the study is largely a rehash of earlier attempts to deny the existence of real increases in autism.

I have not yet read Epidemiology of pervasive developmental disorders but from the head note (abstract) it appears that Dr. Fombonne's latest publication is simply offering a rehash of the statistical analysis and speculation used to assert that the startling increases in rates of autism diagnoses over the past decade and a half are all due to non-environmental causes, although even the article abstract acknowledges that other (environmental) causes can not be ruled out:

"The meaning of the increase in prevalence in recent decades is reviewed. There is evidence that the broadening of the concept, the expansion of diagnostic criteria, the development of services, and improved awareness of the condition have played a major role in explaining this increase, although it cannot be ruled out that other factors might have also contributed to that trend."

There is no dispute that a substantial increase in cases of "autism" diagnoses arises from the expansion of diagnostic criteria and improved awareness although as an advocate in New Brunswick Canada who fought hard, with other parent advocates, to establish autism services here I am much more skeptical about any substantial connection between the availability of services argument. New Brunswick has made great strides in providing autism intervention to pre-school and school age children with autism disorders in the past 5 years and some other provinces have also made significant gains but there are large gaps across this country and in the United States with respect to provision of effective, autism specific services. I would really have to be convinced that availability of services has been a significant factor in contributing to the increase in autism diagnoses.

I don't know if Dr. Fombonne intends to publish a similar paper, with the same conclusion, in a year or two but hopefully research by others will explore the possible environmental factors which even Dr. Fombonne has apparently not ruled out. In the US the IACC has taken a much more inquisitive approach to possible environmental factors in its strategic autism research plan The Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 26, 2009 :


"What do we need?

Although most scientists believe that risk factors for ASD are both genetic and environmental, there is considerable debate about whether potential environmental causes, genetic precursors, or interactions between genes and environmental factors should be the highest priority for research aimed at identifying the causes of ASD. To date, few studies have ruled in or ruled out specific environmental factors. While there are reports of associations of ASD with exposure to medications or toxicants prenatally, and to infections after birth, it is still not known whether any specific factor is necessary or sufficient to cause ASD. Similar to other disease areas, advancing research on the potential role of environmental factors requires resources and the attraction of scientific expertise. Bringing this to bear on autism will help focus the environmental factors to study, as well as the best approach for staging studies to examine environmental factors, interaction between factors, and between individual susceptibility and various environmental factors.

For example, some researchers believe that it is important to study a large number of exposures, or classes of exposure, that are known to affect brain development. Others support more tightly focused studies of one exposure or a limited number of exposures, with greatest biologic plausibility for interacting with known or suspected biologic or genetic ASD risk factors. In addition, it is also important to design studies that assess environmental exposure during the most relevant exposure windows: pregnancy and early development. In doing this research, it will be important for the field to develop sound standards for identifying and claiming that environmental factors contribute to ASD, as it would be for genetics.

To address public concerns regarding a possible vaccine/ASD link, it will be important over the next year for the IACC to engage the National Vaccine Advisory Committee (NVAC) in mutually informative dialogues. The NVAC is a Federal advisory committee chartered to advise and make recommendations regarding the National Vaccine Program. Communication between the IACC and NVAC will permit each group to be informed by the expertise of the other, enhance coordination and foster more effective use of research resources on topics of mutual interest. Examples of such topics include: studies of the possible role of vaccines, vaccine components, and multiple vaccine administration in ASD causation and severity through a variety of approaches; and assessing the feasibility and design of an epidemiological study to determine whether health outcomes, including ASD, differ among populations with vaccinated, unvaccinated, and alternatively vaccinated groups.


Aspirational Goal: Causes of ASD will be Discovered that Inform Prognosis and Treatments and Lead to Prevention/Preemption of the Challenges and Disabilities Of ASD

Research Opportunities

* Genomic variations in ASD and the symptom profiles associated with these variations.

* Environmental influences in ASD and the symptom profiles associated with these influences.

* Family studies of the broader autism phenotype that can inform and define the heritability of ASD.

* Studies in simplex families that inform and define de novo gene differences and the role of the environment in inducing these differences.

* Standardized methods for collecting and storing biospecimen resources from well-characterized people with ASD as well as a comparison group for use in biologic, environmental and genetic studies of ASD.

* Case-control studies of unique subpopulations of people with ASD that identify novel risk factors.

* Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies.

* Environmental and biological risk factors during pre- and early post-natal development in "at risk" samples.

* Cross-disciplinary collaborative efforts to identify and analyze biological mechanisms that underlie the interplay of genetic and environmental factors relevant to the risk and development of ASD, including co-occurring conditions.

* Convene ASD researchers on a regular basis to develop strategies and approaches for understanding gene - environment interactions.

* Exposure assessment -- efficient and accurate measures of key exposures for use in population and clinic based studies and standards for sample collection, storage, and analysis of biological materials.

Short-Term Objectives

* Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report "Autism and the Environment: Challenges and Opportunities for Research" as potential causes of ASD by 2010. IACC Recommended Budget: $23,600,000 over 2 years.

* Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. IACC Recommended Budget: $43,700,000 over 4 years.

* Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years.

* Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene - environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years.

* Enhance existing case-control studies to enroll broad ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.

Long-Term Objectives

* Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years.

* Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years.

* Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years.

* Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years."

MJ at Jabberwocky sees the new paper by Dr. Fombonne as an attempt to deny the existence of a real increase in autism disorders. He may be right but I think the Fombonne paper is better viewed as a reflection of the state of autism research in Canada. It is essentially a small, Montreal, Quebec based, old boys club, with research funding decisions emanating from the Institute of Neurosciences, Mental Health and Addiction, one of the 13 virtual institutes of the Canadian Institutes of Health Research. The previous (term expired December 31, 2008) Scientific Director of the Institute of Neurosciences, Mental Health and Addiction was neuroscientist Dr. Rémi Quirion, a McGill University Professor and Scientific Director at the Douglas Hospital Research Centre (a McGill affiliated teaching hospital).

Another of Canada's Montreal based leading autism researchers is Dr. Laurent Mottron. Dr. Mottron, along with his colleague Michelle Dawson, is an activist who has appeared before the Canadian Senate to argue against funding of ABA services for autistic children. The good Dr. Mottron also assisted Ms Dawson in her intervention before the Supreme Court of Canada in opposition to the families who were seeking confirmation of lower court decisions in Auton which directed the British Columbia government to fund ABA treatment for their children's autism disorders. Dr. Mottron is also a media darling in Canada, particularly at the publicly funded Canadian Broadcasting Corporation (CBC) where he has appeared on radio and television several times promoting a non-medical model of autism disorders.

Dr. Mottron, is also most likely the mysterious "Dr. M" who testified as an expert witness in Michelle Dawson's Canadian Human Rights Tribunal proceeding against Canada Post, Dawson v. Canada Post Corporation, 2008 CHRT 41. He testified that "the notion of curing autism is nonsensical":

"[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality. Ms. Dawson stated repeatedly that autism was not a mental illness. For her, a mental illness has an onset, various treatments, and there is a return to the previous state to a greater or lesser degree. Both Ms. Dawson and Dr. M., as will be seen,pointed out that the notion of curing autism was nonsensical. Still many people want to cure autism.

...

[99] At the beginning of his testimony, Dr. M., who is a psychiatrist, was qualified by the Tribunal as an expert in autism. Dr. M. filed a report as well as three letters pertaining to Ms.Dawson’s condition.

[100] Dr. M. testified on the nature of autism, autistic individuals as well as on Ms. Dawson’s condition. The credibility of Dr. M. as well as the accuracy of his statements and opinions was not challenged by the Respondent. The Tribunal finds Dr. M.’s testimony highly credible even if the evidence shows that in recent years, Ms. Dawson has worked with him and has co-authored scientific articles with Dr. M.

In Canada the sorry state of autism research is represented by Dr. Fombonne's rehashing of statistical arguments denying increases in autism and avoiding exploration of possible environmental causes or factors related to autism disorders. In Canada the sorry state of autism research is also represented by Dr. Mottron's activism in opposition to government funding of ABA interventions for autistic children, his quixotic multiple media appearances, particularly on CBC programs from Quirks and Quarks to Positively Autistic, his promotion of a non-medical model of autism disorders, numerous research papers involving persons with high functioning autism (maybe someday he will get around to publishing some papers on those troublesome lower functioning persons with autistic disorders) and his testimony that the notion of curing autism is nonsensical.

Fortunately for autistic children and adults in Canada, and their families, real autism research is still being conducted in the United States where the search for causes of autism, and possible cures, is still alive and well.

God Bless America.

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The Mysterious Dr. M: The Notion of Curing Autism Is Nonsensical

Above: Dr. Laurent Mottron, Psychiatrist, High Functioning Autism Expert
Below: Dr. M, Psychiatrist, CHRT Recognized Autism Expert, Identity Unknown

I would like to commend and congratulate Michelle Dawson who has won her human rights complaint against Canada Post Corporation. The decision in her favor will be of assistance to other autistic Canadians facing discrimination on the basis of their autism disability. In Dawson v. Canada Post Corporation, 2008 CHRT 41, 2008/10/03 a Canadian Human Rights Tribunal, comprised of member Pierre Deschamps, rejected some complaints made by Ms Dawson but ruled that:

[219] However well-intended Canada Post management was in seeking a medical evaluation, the Tribunal finds that, in the present circumstances, the general behavior of those Canada Post employees who were involved in the medical evaluation process constitutes harassment. .....

[220] The Tribunal thus finds that Ms. Dawson’s disability was an important factor in the way she was treated by the Respondent in relation to the above mentioned events and that theRespondent’s conduct amounts to harassment and contravenes section 14 of the Act. However, the Tribunal finds that there exists no conclusive evidence that the Respondent’s conduct and that of its employees constitute retaliation.

[235] In view of the evidence, the Tribunal finds that the Complainant and the Commission have not established a prima facie case of discrimination or retaliation. The evidence shows clearly that the delay in providing Ms. Dawson with the permission to tape-record conversations with management stems from the reluctance of certain employees to be tape-recorded. In the present circumstances, the Tribunal finds that the Respondent had to balance the needs of the Complainant with the concerns expressed by certain of its employees. This said, the tense relations between Ms. Dawson and management at Canada Post cannot be totally excluded as a factor having contributed to the delays.

Some of the evidence about autism and autistic person's generally was provided by Michelle Dawson herself although the tribunal did not qualify her as an expert. The expert evidence was provided solely by a Dr. M called as a witness by Ms. Dawson. Dr. M. was qualified as a credible expert witness by the Tribunal despite his close ties to Ms. Dawson:


b) The testimony of Dr. M

[99] At the beginning of his testimony, Dr. M., who is a psychiatrist, was qualified by theTribunal as an expert in autism. Dr. M. filed a report as well as three letters pertaining to Ms.Dawson’s condition.

[100] Dr. M. testified on the nature of autism, autistic individuals as well as on Ms. Dawson’scondition. The credibility of Dr. M. as well as the accuracy of his statements and opinions wasnot challenged by the Respondent. The Tribunal finds Dr. M.’s testimony highly credible even ifthe evidence shows that in recent years, Ms. Dawson has worked with him and has co-authored scientific articles with Dr. M.

It is truly an amazing coincidence that the mysterious Dr. M. worked with and co-authored scientific articles with Michelle Dawson. I wonder if Dr. M. has ever met high functioning autism expert Dr. Laurent Mottron, who is also a psychiatrist who has worked with and co-authored scientific papers with Ms Dawson? Of course Dr. Mottron has also provided affidavit evidence in support of Ms Dawson's intervenor appearance before the Supreme Court of Canada in the Auton case, and has appeared with, and offered personal testimonial support for, Ms Dawson's particular form of autism advocacy in general media publications and programs such as CBC Radio's Quirks and Quarks. None of that background is cited by the CHRT when it discussed how it concluded that Dr. M. was credible despite his ties to the Compalinant Ms. Dawson so I will have to assume that Dr. M. and Dr. Mottron are two separate individuals.

The expert evidence of the mysterious Dr. M in Dawson v CPC will certainly be of assistance to the broader autism community beset as it is by so many controversies. Dr. M offers his expert evidence to settle many burning controversies in world autism arguments. In particular Dr. M. leaves no doubt that there is no point in seeking to cure autism:

[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality. Ms. Dawson stated repeatedly that autism was not a mental illness. For her, a mental illness has an onset, various treatments, and there is a return to the previous state to a greater or lesser degree. Both Ms. Dawson and Dr. M., as will be seen,pointed out that the notion of curing autism was nonsensical. Still many people want to cure autism.

It might be helpful for the Canadian Institutes of Health Research which organized the "National Autism Symposium" held last November to get in touch with Dr. M. One of the keynote speakers at the Symposium was Dr. Laurent Mottron. Had CIHR, which is involved with funding some of Dr. Mottron's high functioning autism research, instead chosen Dr. M. he could have advised everyone involved to stop wasting time and money on research aimed at finding a cure for autism.

I have been unable to find any of the papers written by Dr. M. but I do look forward to reading some of his work. And I hope also to be able to meet him some day. I have lived with and cared for a 12 year old severely autistic boy but after reading Dr. M's expert testimony before the CHRT about the nature of autism and autistics I have the haunting feeling that he may not truly be autistic since he does not share many of the characteristics of autistic persons as defined by Dr. M in his testimony.

The case of Dawson v CPC confirms that federally regulated employers must accommodate autistic employees in their workforce.

As a side benefit it has also highlighted the autism expertise of the mysterious Dr. M who can enlighten the world about the true nature of autism. As a further benefit he could persuade the CIHR to stop wasting money researching autism cures.

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Autism Society Canada Rejects Evidence Based Approach To Autism Treatment And Fails Autistic Children

Recent statements by current Autism Society Canada President Kathleen Provost to a Montreal Gazette reporter have me asking again what the ASC actually does to help autistic Canadians? When the ASC can not even tell the Canadian public in a forthright manner what numerous American state and professional agencies have told us for years about the evidence basis supporting the effectiveness of Applied Behavior Analysis in treating autism it becomes difficult to understand the ASC's raison d'être.

For parents of autistic children there are few things more important than trying to help their autistic children overcome, to the fullest extent possible, the deficits and challenges that accompany their autistic disorders - self injurious behavior, dangerous behavior such as wandering into traffic or getting lost, lack of communication and language abilities and intellectual deficits. These are all serious challenges facing many autistic Canadians. But they do not receive accurate information about the state of autism treatment from the ASC.

Autism Society Canada Statements on Autism Treatment

The Autism Society Canada has made incomplete, inaccurate and even misleading statements about the effectiveness of autism treatments. It does so by rejecting an evidence based approach to treating autism. It states that there are many approaches to treating autism without informing the public forthrightly that only Applied Behavior Analysis is supported by a large body of evidence supporting its effectiveness.

In More than one approach to autism the Autism Society Canada has failed, once again, to help Canadians evaluate the evidence supporting ABA as an autism intervention and, as the article title illustrates, helps mislead Canadians into thinking that all autism interventions are created equal. That no single autism intervention is better than any other. Nothing could be further from the truth. In that article Kathleen Provost, ASC President, is reported and quoted as follows:

Kathleen Provost of Autism Society Canada noted a lack of consensus among experts about the best ways of dealing with the condition.

"What we have the most researcher and information on is behaviour therapy," Provost said.

The society does not endorse any method.

"Some of it is new and we don't have enough information," Provost said. "We leave it up to the parents to make decisions."

There is no unanimity amongst "experts" about the best ways of dealing with autism, or any other issue, in any other field, for that matter. Most noticeable in opposing ABA as an autism intervention is the Montreal neuroscience community which dominates the Canadian Institutes for Health Research. (Anti-ABA advocate, Dr Laurent Mottron, of the Psychiatry Department of the Hopital Riviere-Des-Prairies was a key note speaker at the CIHR's November 2007 Autism Symposium which itself had to be rescheduled to ensure that known ABA advocates would be excluded from representing any of the provincial autism "communities"). There is, however, a clear consensus amongst experts about the best ways of dealing with autism and that consensus clearly points to ABA as the most effective evidence based intervention for dealing with autism.

Evidence Based-Medicine

To properly understand that consensus it is important to understand a point not often mentioned by the Autism Society Canada, or the CIHR for that matter, the concept of evidence based-medicine:

"Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise we mean the proficiency and judgement that individual clinicians acquire through clinical experience and clinical practice. Increased expertise is reflected in many ways, but especially in more effective and efficient diagnosis and in the more thoughtful identification and compassionate use of individual patients' predicaments, rights, and preferences in making clinical decisi ons about their care. By best available external clinical evidence we mean clinically relevant research, often from the basic sciences of medicine, but especially from patient centred clinical research into the accuracy and precision of diagnostic tests (including the clinical examination), the power of prognostic markers, and the efficacy and safety of therapeutic, rehabilitative, and preventive regimens. External clinical evidence both invalidates previously accepted diagnostic tests and treatments and replaces them with new ones that are more powerful, more accurate, more efficacious, and safer.

Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicabl e to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients."

Center for Evidence-Based Medicine (CEBM) and the British Medical Journal, 13th January 1996 (BMJ 1996; 312: 71-2)

The CEBM also refers readers to the Wikipedia entry on Evidence Based-Medicine:

Evidence-based medicine (EBM) aims to apply evidence gained from the scientific method to certain parts of medical practice. It seeks to assess the quality of evidence[1] relevant to the risks and benefits of treatments (including lack of treatment). According to the Centre for Evidence-Based Medicine, "Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients."[2]

EBM recognizes that many aspects of medical care depend on individual factors such as quality and value-of-life judgments, which are only partially subject to scientific methods. EBM, however, seeks to clarify those parts of medical practice that are in principle subject to scientific methods and to apply these methods to ensure the best prediction of outcomes in medical treatment, even as debate about which outcomes are desirable continues.

Practicing evidence-based medicine requires clinical expertise, but also expertise in retrieving, interpreting, and applying the results of scientific studies and in communicating the risks and benefits of different courses of action to patients.

....

Qualification of evidence

Evidence-based medicine categorizes different types of clinical evidence and ranks them according to the strength of their freedom from the various biases that beset medical research. For example, the strongest evidence for therapeutic interventions is provided by systematic review of randomized, double-blind, placebo-controlled trials involving a homogeneous patient population and medical condition. In contrast, patient testimonials, case reports, and even expert opinion have little value as proof because of the placebo effect, the biases inherent in observation and reporting of cases, difficulties in ascertaining who is an expert, and more.

Systems to stratify evidence by quality have been developed, such as this one by the U.S. Preventive Services Task Force for ranking evidence about the effectiveness of treatments or screening:

* Level I: Evidence obtained from at least one properly designed randomized controlled trial.
* Level II-1: Evidence obtained from well-designed controlled trials without randomization.
* Level II-2: Evidence obtained from well-designed cohort or case-control analytic studies, preferably from more than one center or research group.
* Level II-3: Evidence obtained from multiple time series with or without the intervention. Dramatic results in uncontrolled trials might also be regarded as this type of evidence.
* Level III: Opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees.

The UK National Health Service uses a similar system with categories labeled A, B, C, and D. The above Levels are only appropriate for treatment or interventions; different types of research are required for assessing diagnostic accuracy or natural history and prognosis, and hence different "levels" are required. For example, the Oxford Centre for Evidence-based Medicine suggests levels of evidence (LOE) according to the study designs and critical appraisal of prevention, diagnosis, prognosis, therapy, and harm studies:[9]

* Level A: Consistent Randomised Controlled Clinical Trial, cohort study, all or none (see note below),clinical decision rule validated in different populations.
* Level B: Consistent Retrospective Cohort, Exploratory Cohort, Ecological Study, Outcomes Research, case-control study; or extrapolations from level A studies.
* Level C: Case-series study or extrapolations from level B studies.
* Level D: Expert opinion without explicit critical appraisal, or based on physiology, bench research or first principles.

Evidence Based-Medicine and Autism Interventions

Autism has been plagued by a host of "alternative" treatments and interventions including some as whacky as "swimming with dolphins"; the notion that somehow swimming in close proximity to these intelligent but still wild and powerful sea creatures somehow has therapeutic value for autistic children. Facilitated communication in which a therapist aids non-verbal autistic children in communicating through a variety of assisted communication technologies has caused actual harm as seen very recently in Oakland County Michigan where a family was torn apart when the parents of autistic children were wrongully charged with abuse based on a therapists Facilitated Communication interpretations of the autistic daughter's responses. The interpretations were exposed as nonsense at trial when the same process elicited answers such as these to questions posed to the daughter:

Q: What color is your sweater?

A: JIBHJIH

Q: What are you holding in your hand right now?

A: I AM 14


In Children with autism deserve evidence-based intervention, The evidence for behavioural therapy, MJA 2003; 178 (9): 424-425, Jennifer J Couper and Amanda J Sampson, reviewed some of the evidence in support of the efficacy of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:

While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome.

Couper and Sampson reviewed the evidence at that time (2003) in relation to behavioral treatment for autism:

the early intervention that has been subjected to the most rigorous assessment is behavioural intervention. There is now definite evidence that behavioural intervention improves cognitive, communication, adaptive and social skills in young children with autism. In 1987, Lovaas showed apparent recovery, persisting into adolescence, in nine of 19 young children who received an intensive home-based intervention based on applied behavioural analysis, a scientific method of reinforcing adaptive and reducing maladaptive behaviours.5,6 Subsequent studies also showed that behavioural intervention caused significant, albeit somewhat lesser, gains.7-11 This has modified the orthodox view that autism is always a severe, lifelong disability. Criticisms of the adequacy of the design and power of these studies are being addressed by the multisite Lovaas replication Early Autism Project. The first US site has released data (Wisconsin Early Autism Project).12 Again, after three to four years of intensive applied behavioural analysis intervention, about half the preschool children with autism acquired near-normal functioning in language, performance IQ and adaptability. Ninety-two per cent of intervention children acquired some language. Control children who received special education showed no gains in IQ or adaptability.12

Why is intensive applied behavioural analysis intervention more effective than special education for children with autism? This can not be simply explained by the intensity of these programs (30–40 hours per week). Children in a school-based Scandinavian study who received behavioural intervention gained an average of 25 language IQ points in the first year of the intervention, with improvements in performance IQ, communication and adaptability. On all scores, they surpassed control children who received special education according to best practice for autism, and the same intensity, duration and supervision of therapy.13

Autism Treatment Consensus - God Bless America

Contrary to Kathleen Provost's, and the ASC's, statements, there IS a consensus on the best way to "deal with" autism. That consensus has been clearly articulated in a number of reviews of autism treatment effectiveness by responsible, respected American authorities. Thankfully the internet ensures that Canadian parents are not dependent on a sham Autism Symposium, the self interested dictates of some members of the Montreal neuroscience community, or the misleading statements of timid ASC representatives. We can read for ourselves what more credible authorities have concluded.

The American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders 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.31–40

No other intervention reviewed by the AAP approached ABA in the quantity or the quality of evidence in support of its effectiveness as an ABA intervention.

New York State Department of Health - Clinical Practice Guidelines - Report of the Recommendations Autism/Pervasive Developmental Disorders 2005 (rev ed)

Intervention Methods

Intensive Behavioral and Educational Intervention Programs

Summary Conclusions

Intensive behavioral and educational intervention programs involve systematic use of behavioral teaching techniques and intervention procedures, intensive direct instruction by the therapist, and extensive parent training and support.

* Articles screened for this topic: The literature search found 232 articles that reported using behavioral and educational approaches in children with autism as well as 68 articles from a comprehensive review article on single-subject design studies.

* Articles meeting criteria for evidence: 5

Several studies done by independent groups of researchers have evaluated the use of intensive behavioral intervention programs for young children with autism. The four studies that met criteria for evidence about efficacy all compared groups of young children with autism who received either an intensive behavioral intervention, a comparison intervention, or no intervention. In all four of the studies reviewed, groups that received the intensive behavioral intervention showed significant functional improvements compared to the control groups.

While none of the four studies used random assignment of subjects to groups, there did not appear to be any evidence of important bias in group assignment. Within each study, the groups receiving different interventions had equivalent subject characteristics. Furthermore, all studies showed similar and consistent results.

Since intensive behavioral programs appear to be effective in young children with autism, it is recommended that principles of applied behavior analysis and behavioral intervention strategies be included as an important element of any intervention program.

It is recommended that intensive behavioral programs include a minimum of 20 hours per week of direct instruction by the therapist. The precise number of hours of behavioral intervention may vary depending on a variety of child and family characteristics. Considerations include age, severity of autistic symptoms, rate of progress, other health considerations, tolerance of the child for the intervention, and family participation. It is recommended that the number of hours be periodically reviewed and revised when necessary. Monitoring of progress may lead to a conclusion that hours need to be increased or decreased.

It is recommended that all professionals and paraprofessionals providing therapy to the child as part of an intensive behavioral program receive regular supervision from a qualified professional.

It is important that parents be included as integral members of the intervention team. It is recommended that parents be trained in behavioral techniques and be encouraged to provide additional hours of instruction to the child. It is also recommended that training of parents in behavioral methods for interacting with their child be extensive and ongoing, and that it include regular consultation with the primary therapist.

Although some of the intensive behavioral intervention programs that were effective included use of physical aversives (such as a slap on the thigh), other programs reported good outcomes without the use of any physical aversives. The panel does not recommend the use of physical aversives, especially given the small physical size and vulnerability of young children in the age group from birth to age three years.

None of the other interventions reviewed by the NYSDOH approached ABA as an evidence based effective intervention for autism.

Report of the MADSEC (Maine Administrators of Services for Children with Disabilities) Task Force Report 2000 (rev ed)



Over the past 30 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:


• populations (children and adults with mental illness, developmental disabilities and learning disorders)
• interventionists (parents, teachers and staff)
• settings (schools, homes, institutions, group homes, hospitals and business offices), and
• behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury,
oppositional and stereotyped behaviors)

…

The effectiveness of ABA-based interventions with persons with autism is well documented, with current research replicating already-proven methods and further developing the field.

Documentation of the efficacy of ABA-based interventions with persons with autism emerged in the 1960s, with comprehensive evaluations beginning in the early 1970s. Hingtgen & Bryson (1972) reviewed over 400 research articles pertinent to the field of autism that were published between 1964 and 1970. They concluded that behaviorally-based interventions demonstrated the most consistent results. In a follow-up study, DeMeyer, Hingtgen & Jackson (1981) reviewed over 1,100 additional studies that appeared in the 1970s. They examined studies that included behaviorally-based interventions as well as interventions based upon a wide range of theoretical foundations. Following a comprehensive review of these studies, DeMeyer, Hingtgen & Jackson (1982) concluded “. . .the overwhelming evidence strongly suggest that the treatment of choice for maximal expansion of the autistic child’s behavioral repertoire is a systematic behavioral education program, involving as many child contact hours as possible, and using therapists (including parents) who have been trained in the behavioral techniques” (p.435).

Support of the consistent effectiveness and broad-based application of ABA methods with persons with autism is found in hundreds of additional published reports.


Baglio, Benavidiz, Compton, et al (1996) reviewed 251 studies from 1980 to 1995 that reported on the efficacy of behaviorally-based interventions with persons with autism. Baglio, et al (1996) concluded that since 1980, research on behavioral treatment of autistic children has become increasingly sophisticated and encompassing, and that interventions based upon ABA have consistentlyresulted in positive behavioral outcomes. In their review, categories of target behaviors included aberrant behaviors (ie self injury, aggression), language (ie receptive and expressive skills, augmentative communication), daily living skills (self-care, domestic skills), community living skills (vocational, public transportation and shopping skills), academics (reading, math, spelling, written language), and social skills (reciprocal social interactions, age-appropriate social skills).

In 1987, Lovaas published his report of research conducted with 38 autistic children using methods of applied behavior analysis 40 hours per week. Treatment occurred in the home and school setting. After the first two years, some of the children in the treatment group were able to enter kindergarten with assistance of only 10 hours of discrete trial training per week, and required only minimal assistance while completing first grade. Others, those who did not progress to independent school functioning early in treatment, continued in 40 hours per week of treatment for up to 6 years. All of the children in the study were re-evaluated between the ages of six and seven by independent evaluators who were blind as to whether the child had been in the treatment or control groups. There were several significant findings:

1) In the treatment group, 47% passed “normal” first grade and scored average or above on IQ tests. Of the control groups, only one child had a normal first grade placement and average IQ.

2) Eight of the remaining children in the treatment group were successful in a language disordered classroom and scored a mean IQ of 70 (range = 56-95). Of the control groups, 18 students were in a language disordered class (mean IQ = 70).

3) Two students in the treatment group were in a class for autistic or retarded children and scored in the profound MR range. By comparison, 21 of the control students were in autistic/MR classes, with a mean IQ of 40.

4) In contrast to the treatment group which showed significant gains in tested IQ, the control groups’ mean IQ did not improve. The mean post-treatment IQ was 83.3 for the treatment group, while only 53.3 for the control groups.

In 1993, McEachin, et al investigated the nine students who achieved the best
outcomes in the 1987 Lovaas study. After a thorough evaluation of adaptive functioning, IQ and personality conducted by professionals blind as to the child’s treatment status, evaluators could not distinguish treatment subjects from those who were not. Subsequent to the work of Lovaas and his associates, a number of investigators have addressed outcomes from intensive intervention programs for children with autism.

For example, the May Institute reported outcomes on 14 children with autism who received 15 - 20 hours of discrete trial training (Anderson, et al, 1987). While results were not as striking as those reported by Lovaas, significant gains were reported which exceeded those obtained in more traditional treatment paradigms. Similarly, Sheinkopf and Siegel (1998) have recently reported on interventions based upon discrete trial training which resulted in significant gains in the treated children’s’ IQ, as well as a reduction in the symptoms of autism. It should be noted that subjects in the May and Sheinkopf and Siegel studies were given a far less intense program than those of the Lovaas study, which may have implications regarding the impact of intensity on the effectiveness of treatment.

...

Conclusions

There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning.

These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made.


Mental Health: A Report of the US Surgeon General 1999

Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling. Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998).

Consensus and Fully Informed Choices

The above are some of the leading statements by credible agencies that have reviewed the evidence bases in support of various autism interventions. No other intervention has anywhere near the same evidence in support of its efficacy as documented by these credible American agencies. Contrary to the unsubstantiated statement by Kathleen Provost there is in fact a clear consensus that ABA is the treatment of choice for autism.

If Kathleen Provost, and the Autism Society Canada, wish to exercise their information role responsibly they should make this clear to the public. Parents of newly diagnosed autistic children should be told that they might be gambling their child's precious development time, and their future development potential by forgoing ABA in favor of "feel good" unproven alternatives. In failing to do so they are failing autistic children in Canada.

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Canada's Sham Autism Symposium Failure and the Need for a REAL National Autism Strategy

The National Autism Symposium was supposed to be a key plank in the Harper government's otherwise pathetically weak National Autism Strategy. The symposium was initially postponed when the Harper government and the directors of the CIHR got word that actual, honest to goodness, parent autism advocates were being put forward as autism society representatives. Scared at the prospect that parents would voice the need for federal funding of Applied Behavior Analysis for autistic children in Canada the Harper government and the politically sensitive directors of the Canadian Institutes for Health Research postponed the symposium and rescheduled it for November 7 - 9 in Toronto. This time the CIHR took no chances and determined for themselves and without the names of persons who would allegedly "represent" the provincial autism community. Apparently the CIHR is as weak on democratic principles as it is in its understanding of autism and autism treatments.

In New Brunswick the Autism Society New Brunswick was not asked for the name of a representative to send to the symposium. In fact the ASNB was not even consulted about the names of persons they might wish to have represent New Brunswick's autism community. Some persons in New Brunswick were consulted and I know for a fact that my name was put forward but rejected by the CIHR political leadership. It seems clear that the CIHR wanted to avoid any outspoken advocates of evidence based interventions for autistic children.

There was no list of guest speakers or specific subjects published in advance of the "National" Autism Symposium. Unfortunately, even after the symposium there has been very little in the way of actual substantive information about the symposium made available to the Canadian public. Here is the only summary of the National Autism Symposium that I have been able to find as published on the CIHR web site by Dr. Rémi Quirion, OC, PhD, FRSC, CQ, Scientific Director of the CIHR's Institute of Neurosciences, Mental Health and Addiction (INMHA):

National Autism Research Symposium

Toronto, November 8-9, 2007

CIHR had been tasked by the Hon. Tony Clement, Minister of Health, with organizing this event and CIHR-INMHA, with assistance from CIHR-IHDCYH, took the lead. The symposium was part of a series of initiatives on autism announced by Minister Clement in November 2006. The other commitments included exploring the establishment of a research chair focusing on effective treatment and intervention for autism spectrum disorders (ASDs); launching a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada; creating a dedicated page on the Health Canada web site focused on ASD; and designating the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal government level.

The symposium brought together 95 attendees including researchers, health professionals, educators, service providers, family members and persons with autism, as well as community organizations and government representatives. All the provinces and two territories (Northwest Territories and the Yukon) were represented. The goals of the symposium were to inform participants about the current state of knowledge on autism, to further the dissemination of ideas and to assist the research community in planning for research.

The opening evening session featured presentations from a person with autism (Daniel Share-Strom), a parent (Jennifer Overton) and a prominent researcher in the field (Dr. Susan Bryson, Dalhousie). On the second day, after introductory comments from the Health Minister, twelve leading Canadian researchers in the field of autism discussed the latest findings, with brief question and answer periods. Symposium participants then broke into six groups to discuss specific issues relevant to autism research. Each group suggested three key ideas to help inform research and presented these to the symposium as a whole. Every participant then had an opportunity to provide written feedback on these ideas and the symposium closed with some general comments from the floor.

Feedback from the symposium was very positive, with many participants appreciative of the opportunity to meet with individuals from different sectors and many expressing a wish to make this kind of meeting a regular event. For further information on this meeting, please contact Barb Beckett at {bbeckett@cihr-irsc.gc.ca}[mailto:bbeckett@cihr-irsc.gc.ca]

After bragging about Health Minister Tony Clements weak National Autism Strategy Dr. Quirion then stated in the summary that the goals of the symposium included "to inform participants about the current state of knowledge on autism, to further the dissemination of ideas and to assist the research community in planning for research." The summary itself sets out no description of the current state of knowledge on autism and, to my knowledge, no ideas have been disseminated. Judging by Dr. Quirion's objectives it appears that the National Autism Symposium was a failure.

In all fairness to the timid, politically sensitive, bureaucrats at the CIHR the American Academy of Pediatrics stole their thunder by releasing on October 29, 2007, just eight days before the CIHR "facilitated" autism symposium, two landmark reports on autism. In one of those reports, Management of Children With Autism Spectrum Disorders the AAP stated that:

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

The significance of this report on the effectiveness of ABA and its impact on the Tony Clement/CIHR sham autism symposium can not be overstated. Released just eight days prior to the sham symposium put on by Minister Clement and the CIHR bureaucrats the report undermined one of the real goals of the symposium - to present ABA as merely one treatment option amongst a host of such options. The AAP review updated previous credible American reviews of the Autism treatment research literature including the New York state and California reviews, the US Surgeon General review and the MADSEC Autism Task Force Report 1999-2000 all of which endorsed ABA as, to date, the only autism intervention with a solid evidentiary bases in support of its effectiveness in helping autistic children. This result ran directly contrary to the hopes of Minister Clement and his staged autism symposium; a symposium so obviously contrived to suit the political agenda of the Harper-Clement government that no substantive report of the "ideas to be disseminated" about autism has yet been "disseminated". The CIHR people are apparently too ashamed of their sham symposium to issue a detailed report of its proceedings, which would undoubtedly stand in direct contradiction to the much more credible AAP report.

It is long past time that the Canadian autism community stopped putting up with such contrived nonsense and demanded a real National Autism Strategy; one which would see our federal government help autistic children wherever they live in Canada.

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Autism Communication Deficit At The CIHR

The Canadian Institutes of Health Research have played an important role in fostering autism research. The CIHR quite properly promotes its role in funding the recently reported study on the association of certain chromosomes with some instances of autism. The CIHR also professes to be committed to partnering with relevant "stakeholders" and community interest groups in an open, transparent manner:

Freedom of Inquiry	CIHR recognizes that the primary purpose of all research in the public domain is the creation of new knowledge in an environment that embodies the principles of freedom of inquiry and unrestricted dissemination of research results.
Transparency and Accountability	Decision-making processes should ensure that all decisions are fair, open, reputable and able to bear close public scrutiny. Honest and cost-effective accountability mechanisms will be in place for all aspects of the work undertaken by CIHR.
Collaboration	CIHR values positive and mutually respectful relationships with partners and stakeholders who are committed to openness, responsibility and fairness and are mutually respectful of each other's priorities and objectives.

Measured against the noble principles espoused by the CIHR are the realities of the CIHR organized national autism symposium which was held, according to rumour at least, November 8 and 9 2007 in Toronto. The symposium was supposed to be a key element in the Stephen Harper- Tony Clement "national autism strategy" such as it is.

Invitees to the symposium were told that the symposium would be an exercise in community building, an odd goal for such a secretive event. No program, list of speakers or list of invitees to the event were ever published. The invitation also indicated that the symposium would be conducted by professional facilitators, which is a PR way of saying that the discussion would not be open and dissent or criticism would not be permitted. The hand picked delegates were selected not by the community organizations they were supposed to represent but by CIHR officials.

To date, no information has been released of the proceedings of the invisible National Autism Symposium of November 8 and 9 2007. In relation to autism, it seems reasonable to say that the CIHR has failed miserably in its goal of community building. It is not clear what the CIHR is so afraid of although it seems that parents advocating for a national autism strategy to actually help Canadian children are high on its "do not invite" list. Perhaps the CIHR scientists/bureaucrats are simply trying to ensure maximum compliance with their marching orders from Prime Minister Harper and Health Minister Clement.

What the CIHR is not doing is community building. What the CIHR is not doing is communicating with Canadians about autism, autism research or effective evidence based autism interventions. When it comes to autism the CIHR suffers from a massive communication deficit.

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Autism, Environment and Genetic Mutations: Hamilton Steel Mills and Conor's Autism Disorder

The dark smokestacks and olive green buildings on the left are part of the Stelco steel mill, the mint green ones in front of that and to the right are Dofasco. The skyway bridge (8 lanes wide!) that runs between connects east Hamilton to west Burlington over the Hamilton Habour (the western end of Lake Ontario.)

Photo and information above from skyway-ingenia, Lisa Shadforth

Genetic Mutation has been a hot topic in the autism news with several studies pointing to genetic mutations as indicating increased autism susceptibility. Genetic mutation can occur as a result of a number of different factors including chemical and radioactive insults. A story in today's Toronto Star dealing with genetic mutation in Hamilton Ontario mice really made me sit up and take notice.

Mice breathing the air downwind from Hamilton's two big steel mills were found to have significantly higher mutation rates in their sperm, a new Health Canada-led study says.

While there's no evidence that residents of the area are experiencing the same genetic changes, the project's lead author says the findings do raise that question.

"We need to do that experiment and find out," said Carole Yauk, a research scientist with Health Canada.

A future study will look at "DNA damage in the sperm of people living in those areas."

...

Dr. Rod McInnes, director of genetics at Canadian Institutes of Health Research, said the mice could be "the canary in the coal mine" signalling the genetic risks to humans of breathing toxic air. ... While genetic changes in sperm would not affect a male directly, they'd get passed on to the offspring that receive his DNA.


The story reports on a study indicating that the mice living under the Burlington skyway downwind from 2 Hamilton steel mills and breathing the air from those mills for a period as short as 10 weeks were found to have significant sperm mutations. The study Germ-line mutations, DNA damage, and global hypermethylation in mice exposed to particulate air pollution in an urban/industrial location is published in this weeks edition of PNAS.

Why did this particular story grab MY attention? We lived on Leominster Drive, in the westerly area of Burlington adjacent to Hamilton for 12 months prior to Conor's conception and a further 9 months until he was born at the Joseph Brant Memorial Hospital in Burlington. Two years later he was diagnosed with PDD-NOS, later changed to Autism Disorder with profound developmental delays.

Enough information to jump to rash conclusions? No. Pause for thought? Yes.

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Canadian Autism Prevalence Rates Different Than US Rates?

In early February 2007 the Center for Disease Control, the CDC, publicly revised its autism estimated prevalence rate from 1 in 166 Americans to 1 in 150. In Canada the Canadian Institutes of Health Research, the CIHR, web site indicates on its autism page, Health Research: Key to improving outcomes for children with autism, that "Autism, or more appropriately autism spectrum disorders (ASDs), affects an estimated 6 of every 1000 Canadian children." The calculator program on your computer will tell you that 6 in 1000 is roughly 1 in 166, the old CDC figure.

Why the discrepancy between the CDC's estimated prevalence rate and the CIHR's estimated Canadian rate? There are a number of possible explanations:

1) Canada, for reasons that could be environmentally or genetically based, could actually have fewer persons with autism spectrum disorders than the United States.

2) The CIHR may simply be using the old CDC estimate, unaware that the CDC revised its estimates of autism prevalence almost one year ago.

3) The CIHR may be aware that the CDC has changed its estimate but disagrees with the new estimate.

4) The CIHR may be aware of the newer CDC estimate and may agree with it; but can't be bothered to update its autism website information.

I am going to go out on a limb and guess that the correct answer is .... 4) The CIHR can't be bothered to update its autism website information. That explanation would be consistent with the attitude of the CIHR's political masters, the Harper government, which can't be bothered making a serious effort to address Canada's autism crisis.

And this is the same CIHR which said that it wants to build ties in Canada's autism community and help disseminate autism information to those communities? Maybe those of us who are merely ignorant parents, whose shoes will never be asked to tread the carpets of the CIHR national autism symposiums, should weigh carefully the information that ultimately emerges from those secretive conventions.

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Autism Consultation: US (Transparent) v Canada (Secretive)

Lisa Jo Rudy, host of About.com Autism posted a comment informing the public that the National Institute of Health (NIH) wants public feedback on autism research issues. In The NIH Wants YOU to Provide Recommendations for Future Autism Research! Ms Rudy provides the following information:

"Do you have specific ideas or direction for the NIH, as it implements the Combatting Autism bill? If so, now is the time to take action. The NIH has just issued an "RFI" (request for information) to the autism community, and they are seeking your input on next steps for research. Here's the essential information: Description

The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions."

As a Canadian active in autism advocacy I am impressed with the American openness and true public consultation as reflected in the above referenced Request for Information. By contrast I am disgusted with the secretive, elitist, and politicized approach taken by the Canadian Institute of Health Research. In Canada the CIHR cancelled a planned National Autism Symposium when it found out that autism parent advocates wanted to play a real part in the symposium. It was rescheduled and described as a "research" symposium, with secretive, limited invitees, and with the implication that the parents who live 24/7, 52 weeks a year with autism realities could not possibly offer any intelligent contribution to the discussion. Oh Canada, we can do better than that.

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Tony Clement's Invisible Autism Symposium

Health Minister Tony Clement

Canada, courtesy of the federal government of Prime Minister Stephen Harper and Health Minister Tony Clement, has offered one of the weakest responses by any national government to the world autism crisis. To date it consists of a mediocre autism web site and an invisible national autism research symposium held on November 8 and 9 2007.

The delegates to this invisible symposium were hand picked to ensure compliance with the Harper-Clement agenda, the symposium was structured to ensure that serious debate would be avoided and ... absolutely no information has been released about the results of this secretive, elitist symposium of the compliant. Parents by law, necessity, and commonly accepted morality speak for their autistic children but they, and thereby their children, were not invited to Tony Clement's Invisible Autism Symposium. And so far, we have no idea what the Harper-Clement Autism Delegates discussed at the Invisible Autism Symposium held November 8 and 9 in Toronto.

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