Showing posts with label Dr. Rémi Quirion. Show all posts
Showing posts with label Dr. Rémi Quirion. Show all posts

Sunday, March 29, 2009

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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Thursday, March 20, 2008

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.

Wednesday, October 31, 2007

Autism's Gold Standard Intervention - A Note to Dr. Rémi Quirion

Dr. Rémi Quirion
Scientific Director
Institute of Neurosciences, Mental Health and Addiction (INMHA)
Canadian Institutes for Health Research

Dear Dr. Quirion

Re: Autism's Gold Standard Intervention and the National Autism Symposium

I am a parent of an 11 1/2 year old boy with Autism Disorder. He is profoundly autistic. By profoundly I mean that he has limited communication skills and understanding of language and does not appreciate many of the dangers presented by everyday life. He also engages, from time to time, in self injurious behavior. As a distinguished professional in Montreal neuro-research circles you may not place much weight on my assessment of my son's realities even after living with, caring for, and loving him, for 11 1/2 years. To that end let me assure you that my assessment of my son is confirmed by a Pediatric Doctor's (two in fact) and a Psychologist's assessments.

As an outspoken parent advocate on autism issues my name was rejected by your organisation as a New Brunswick community representative at the National Autism Symposium to be held on November 8 and 9. Despite that fact, I ask you to consider, and anyone of the chosen delegates to consider during this symposium, the question of whether there is a Gold Standard for autism interventions at this time. You may not understand that for parents this is a critical question. Parents of autistic children will not be spending a lot of time worrying about the next development in Montreal neuro-research circles over the next few years. We tend to focus on the well being and best interests of our children; on the best ways to enhance their development and life prospects, to make their life better for them. Parents of newly diagnosed autistic children may not understand that there is in fact a Gold Standard intervention for autism, and that time is important in obtaining that intervention for their children.

You may or may not know that several reviewing agencies over the past decade have essentially reached the conclusion that there is, despite the superficial conclusions to the contrary of some otherwise earnest professionals, a gold standard for autism intervention. From Maine to New York to California, to the office of the US Surgeon General to the advisory board of the Association for Science in Autism Treatment to a recent United Kingdom review, all such reviews consistently point to Applied Behavior Analysis as the only effective evidence based autism intervention - to date.

This past week saw two further developments. Most well known are the two reports of the American Academy of Pediatrics. One report recommended early screening for autism. The other report reviewed some interventions. This quote is taken directly from one of those AAP Reports 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


It will not receive the attention of the AAP Reports but the Province of New Scotia also release a report, Autism Treatment Program Getting Positive Results, this week on its ABA based EIBI program :

The interim results of an independent program evaluation conducted by IWK Health Centre Research Services and Dalhousie University indicates that after one year of Early Intensive Behavioural Intervention (EIBI)treatment, virtually all 27 children in the first phase of the program had significantly improved communication skills. According to tests and parental feedback, they also had improved problem-solving skills and reduced behavioural problems.

...

Many of the children were about a year and a half behind in language-development skills when they began EIBI treatment. On average, children gained more than a year's worth of language skills in the first 12 months of treatment.

The National Autism Symposium is designed to be conducted by professional "facilitators" which usually means that open, frank discussion will not take place, that the issues discussed and conclusions reached will be essentially determined in advance of the symposium. On the assumption though that there is still some room for actual candid discussion of research issues of real import to autistic children and their families I ask you to encourage your professional colleagues, and others in attendance, to consider these two recent reports, the numerous other credible reviews of autism intervention research and the hundreds of studies over 5 decades which clearly establish Applied Behavior Analysis as the Gold Standard intervention for autistic children.

Respectfully,

Harold L Doherty
Fredericton NB

cc. Dr. Barbara Beckett
Assistant Director, Ottawa