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‏إظهار الرسائل ذات التسميات National Autism Symposium. إظهار كافة الرسائل
‏إظهار الرسائل ذات التسميات National Autism Symposium. إظهار كافة الرسائل

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!

St. Amant and the Need for a REAL National Autism Strategy

In Autism treatment attracts family CTV reports the story of two doctors, Dr. Leif Sigurdson, a reconstructive surgeon, and his wife Dr. Leanne van Amstel, a radiologist. who are moving their family from Nova Scotia to Winnipeg so that their autistic son can access Applied Behavioral Analysis treatment at the Winnipeg's St. Amant program. As described on its web site:

St. Amant is a comprehensive resource for Manitobans with a developmental disability, acquired brain injury and autism. A non-profit corporation, St. Amant offers a wide range of programming, services and care to support individuals with a developmental disability, acquired brain injury or autism and their families.

Services include a large main residence, more than 50 community sites and homes, a research centre, a school and a daycare. Among other services, St. Amant offers an effective program for children with autism and for families who care for an individual with a developmental disability at home.

The Harper Conservatives, instead of dealing with Canada's Autism Crisis, have simply staged a national "Autism Symposium". It was a bad joke, postponed initially to avoid participation by parents advocating for funded ABA treatment for their children. The Symposium was nothing more than an effort to downplay ABA through carefully selected participants and a "facilitated" (directed) discussion. The American Academy of Pediatrics Management of Children with Autism Disorders report released the week before the Symposium, exhaustively researched and professionally written, highlighted the overwhelming body of evidence in support of the effectiveness of ABA in treating autism and put to shame the bogus National Autism Symposium staged by the Harper Conservatives.

The Sigurdson/van Amstel family is not the first to move across Canada seeking effective, ABA treatment, for an autistic child. While Stephen Harper, Tony Clement and Mike Lake run away from Canada's autism crisis, many families who are informed, and able to relocate, are going where effective evidence based treatment is available for their autistic children. In the case of the Sigurdson/van Amstel family Nova Scotia loses two medical professionals they can sorely afford to lose.

Canada's National Autism Crisis is directly affecting the autistic children being deprived of effective treatment solely because of where there families live. In some cases it is also resulting in the loss of essential medical resources for local communities.

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.

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.

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.

Canada's Autism Disgrace


What is Canada's National Autism Strategy? The answer is simple; we don't have one. And as long as Stephen Harper's Reform-Alliance-Conservative government rules Canada with an iron fist we will not have a National Autism Strategy. My friends of Conservative background in Canada may not like it but that is the hard brutal truth. Canada will not have a real National Autism Strategy as long as Stephen Harper is Prime Minister of Canada.

We certainly had the beginnings of a National Autism Strategy with the passing of the Andy Scott-Peter Stoffer motion in the House of Commons. And MP Shawn Murphy fought the good fight with his private member's initiative; defeated in the House of Commons by the alliance between the Harper Conservatives and the separatist Bloc Quebecois. Senator Jim Munson has continued his valiant efforts to keep the need to address Canada's national autism crisis alive in the media but even those efforts are becoming more challenging as the Harper-Clement team simply ignores these initiatives, ignores the needs of autistic children and adults in Canada, and proves day in and day out that they don't give a damn about the fate of autistic Canadians.

The National Autism Strategy of Prime Minister Harper really amounted to nothing but a mediocre web site and a promise of a National Autism Symposium. The National Autism Symposium was postponed when it became clear that real autism advocates, parents fighting for their autistic children, wanted to attend the symposium. A second symposium was scheduled for November 8 and 9 in Toronto. The invitation process was itself secretive, parents were largely unrepresented and any outspoken advocates were intentionally excluded from the Symposium.

The lists of speakers and symposium themes were never made public. The list of Harper government, hand picked delegates, to the symposium was never made public although it is a good bet that anti-ABA activists like Michelle Dawson and Laurent Mottron would have been invited. The Quirks and Quarks duo rarely miss an opportunity to promote their fringe anti-ABA views, contrary to hundreds of studies over 5 decades and numerous reviews of those studies by organizations such as the US Office of the Surgeon General and the American Academy of Pediatrics, that ABA is a scientifically supported, evidence based, effective treatment for autism. Their long held, closed minded views, so at odds with mainstream professional opinion, come in handy when needed by a government seeking excuses to camouflage their do nothing approach to addressing Canada's National Crisis. Just a guess, but I am betting that the Harper team was quite happy to invite Mottron and Dawson to the invisible, forgotten, National Autism Symposium.

The Autism Symposium went ahead on November 8 and 9 in Toronto and Canadians STILL don't know a thing about what was said; or what conclusions, if any, were reached. It is likely though that the Harper spin doctors will ultimately issue a summary indicating that there is lack of agreement on issues on the effectiveness of any one intervention in treating autism. The results of hundreds of studies over five decades of research, the reviews by the American Academy of Pediatrics, the Office of the US Surgeon General, the MADSEC Administrators, the New York and California state agencies, the Association for Science in Autism Treatment; all will be ignored.

The views of a few fringe anti-ABA activists will be used to prop up a cynical do nothing Harper autism policy. And Canada's National Autism Strategy will remain as nothing more than what it now is - Canada's Autism Disgrace.

“Paralysis by Analysis” - FEAT BC Comment On Harper Government National Autism Symposium

In Canada FEAT of BC has been a leader in fighting for ABA intervention for autistic children. The fight has been waged in several forums legal, media and increasingly the political arena. In this press release concerning the invitation only National Autism Symposium FEAT BC calls the Symposium what it is - an otherwise meaningless tool to create a false impression of action by a Conservative government which is outrageously indifferent to the plight of autistic children in Canada and, by comparison to the autism efforts of national governments of the United States and Australia, an international embarrassment.

November 7, 2007

“Paralysis by Analysis”


Vancouver, BC – Canada’s no longer so new Conservative government has convened a so-called ‘National Autism Research Symposium’ in Toronto later this week. “For what purpose one wonders,” asks Jean Lewis, a founding director of FEAT-BC [Families for Early Autism Treatment of BC]. “Like the ‘Child Health Summit’ held in Ottawa last April, this is another invitation-only talk-fest. It is designed to produce photo-ops and sound-bites that assist the government in a cynical exercise aimed at manufacturing a societal consensus concerning an approach to autism treatment and its funding; one that suits its transparently manipulative agenda. The exercise is sure to fail.”

This month marks the third anniversary of the Auton decision by the Supreme Court of Canada, in which the jurists stated unequivocally that the question of funding for autism treatment was for parliament and the legislatures. “In three years, all that Canada’s myopic political class and their blinkered bureaucratic acolytes have produced has been delay, disingenuous news releases and, in the case of Ontario, outright mendacity,” states Dr. Sabrina Freeman, founder and executive director of FEAT-BC. “In three years, how many children have been diagnosed with this devastating condition? How many opportunities to provide substantive help, and to learn, have been lost? How many families have come asunder? How much needless suffering has been inflicted, all due to a lack of political will to do the right thing?” While the federal government and its apologists parrot the public relations mantra that ‘more research is necessary’, Canadian courts found, over three years ago, that science-based, proven effective, treatment for autism is available.

In 2006, the United States Congress voted unanimously to put $945 million into combating autism. Recently, the Australian national government has pledged $190 million to this cause. Why is our federal government out of step? Could it be because autistic children and their exhausted parents have to date been absent from the electoral battlefield?

If so, that’s about to change, according to Lewis. “The reckless disregard of this Conservative federal government with respect to these disabled children and their desperate, and often destitute, families verges on the criminal,” says Jean Lewis. “Their callousness is breath-taking and will, come the next federal election, be met with a perfect political storm. That’s not a threat, it’s a promise.”

For further information, contact: Jean Lewis at 604-925-4401 or 604-290-5737, and jean.lewis@telus.net .

CIHR Autism "Partnerships" and "Community Building" LOL

In invitations to its hand picked delegates to the "National" Autism Symposium scheduled for November 8 and 9 in Toronto the CIHR bragged that the symposium was "above all ... an exercise in community building". On the CIHR web site the claim is made that:

Partnerships

From its beginning, CIHR has developed a very broad, inclusive approach to partnership. The multidisciplinary research environment we encourage helps to bring together a wide variety of organizations. Partner organizations include other federal government departments and agencies, provincial funding agencies and relevant provincial and territorial departments, health charities, non-governmental organizations, industry, as well as international organizations.

The CIHR then goes on to elaborate on its philosophy of partnering:

About Partnerships

While working in partnership has many benefits, there also are responsibilities to bear in mind. Partnerships must be: Based on the ethical principles that guide all CIHR activities, Free of conflicts of interest and Operated with managerial transparency and public accountability. Successful partnerships are based on people working well together, which require flexibility, trust and understanding.

How does the CIHR demonstrate its commitments to community building, to a broad, inclusive approach to partnerships, to transparency and public accountability, and to trust and understanding?

By deciding on behalf of the autism communities in Canada who will represent them at the National Autism Symposium. By bypassing the provincial autism societies and FEAT organizations, and in some cases rejecting names that these organizations put forth, by concealing from the public and the media any information whatsoever about who would be attending the conference or the list of scheduled speakers or topics.

The distinguished persons who are organizing the CIHR National Autism Symposium may be good scientists, or may have been before they became bureaucrats and lobbyists for specific perspectives about autism and autism research, but they are lousy "community builders" and they are not even trying to be transparent and accountable. The CIHR bureaucrat/scientists may be working together with some people but it is not the parent driven autism societies in Canada. And trust is clearly not a part of the CIHR diet.

The CIHR organizers are hiding in their offices and are hiding their agendas. The proposed National Autism Symposium is, by any measure, a failure before it begins. It is a waste of government funds. And it absolutely will not reflect the interests of the community which it has ignored and insulted .


National Autism Symposium Script Released

The Script for the Harper Government's National Autism Symposium Stage Production has now been released. The auditions for parts in this staged production are closed (never having been open) . The actors pre-selected by the CIHR will test their acting skills by pretending that they are representative of provincial autism communities, whose organizations were not actually consulted and did not pick their own delegates. Actors must be able to portray real delegates earnestly engaged in discussion of autism issues. The audience will see these skilled actors pretend to arrive at the following conclusions in the final scene:

1) There is no actual increase in autism, it is a figment of our collective consciousness. The authors of one Montreal study say so.

2) There is no consensus about autism treatments, contrary to the silly beliefs of the state agencies in New York, California, Maine, the US Surgeon General, the dozens of Ph.D's and MD's who form the advisory board of the Association for Science in Autism Treatment, the researchers who contributed to the recent Cambridge University research sponsored report by Research Autism which ranked autism interventions, the hundreds of thousands of parents across North America seeking ABA services of their autistic children, and the authors of hundreds of research studies showing gains for children who received ABA.

All of these sources will be revealed in the National Autism Symposium Stage Production as having foolishly leaped to the conclusion that ABA is the treatment of choice for autism and should not be accepted as evidence of a consensus about autism treatments.

These are some elements of the script which will be followed at the Stephen Harper National Autism Symposium Stage Production scheduled to be performed November 8 and 9. The full script can be found in the Harper Government Response to the Report of the Standing Senate Committee on Social Affairs, Science and Technology, Pay Now or Pay Later - Autism Families in Crisis.

Regretfully, members of organizations composed of actual Autism Families in Crisis will be unable to view the Autism Symposium Stage Production. After all this is Canada, not the US, where democracy and law require open public performances at events of importance and where actors must audition for their parts and be democratically selected by the communities they pretend to represent. And after all someone might disrupt the performance, and violate the sensitivities and human rights of the actors, by shouting out such obscenities as "Applied Behavior Analysis", "ABA" or "Medicare".

CIHR's Invisible National Autism Symposium

I have written several commentaries on this site critical of the Harper Government\CIHR National Autism Symposium. The Autism Symposium was touted as ABOVE ALL an exercise in .... community building. Except that the community reps were all hand picked by the CIHR, without input from the provincial Autism Societies or FEAT organizations.

The agenda, list of speakers, and list of invited guests, are all unknown to the "community" at this time. Now it appears that the National Autism Symposium itself will be kept hush hush to the point of being invisible.

The Autism Symposium is scheduled for November 8 and 9 in Toronto, yet it is not even listed on the general Event Listing page of the CIHR website or on the Upcoming Events section of the Institute of Neurosciences, Mental Health and Addiction (INMHA) section which actually lists NO upcoming events:

Event Listing (General)

December 4-6, 2007: Human Health Resources 2007: Connecting Issues and People
The conference will explore health human resources planning and management issues at all levels of the health-care system in Canada. CIHR is one of the organizers.
Ottawa, Ontario

November 13 and 14, 2007: The First Canadian Workshop on Bed Rest Studies
The Canadian Space Agency (CSA), the Canadian Society of Exercise Physiology (CSEP) and the CIHR Institute of Musculoskeletal Health and Arthritis (IMHA) invite you to participate in a unique event. This workshop will be held preceding the annual meeting of the CSEP at the London Convention Center, and will focus on training methods to maintain musculoskeletal and cardiovascular function in weightlessness or simulated microgravity (bed rest).
London, Ontario

October 4-5, 2007: CIHR Workshop for Journalists on Mental Health
CIHR invites journalists for a unique opportunity to explore and discuss the latest in mental health discoveries with today's research leaders from Quebec including Dr. Rémi Quirion, Dr. Sonia Lupien, Dr. Gustavo Turecki, Dr. Karim Nader, Dr. Michael Meaner, Dr. Ridha Joober, and many more.
Presentations will be held in French.
Montreal, Quebec

NMHA Calendar of Events

Upcoming Events



Past Events

Institute of Neurosciences, Mental Health and Addiction 5th Annual Meeting, in conjunction with the Canadian Association for Neuroscience, Toronto
May 22-23, 2007

Stephen Harper's Open Agenda And What It Means for Autism in Canada

Stephen Harper can be accused of many things. He is, IMHO, an arrogant, rigid, individual who would be right at home in the inner circles of George W. Bush and Richard Cheney both in terms of political philosophy and style of government. Harper is an autocratic leader who rules his party with an iron fist. There is no room for independent thought or expression in the Stephen Harper Reform party which has, with the cooperation of a gullible Peter MacKay, stolen the Conservative label from the true Conservative party of Sir John A. MacDonald, John Diefenbaker, Robert Stanfield and Joe Clark.

Stephen Harper is all these things, but it is difficult for anyone to credibly claim that he has a "hidden agenda" as some pundits have done. Stephen Harper has been very open about his goals and his agenda. If Stephen Harper is granted majority control of Canada he will immediately begin the dismantling of our federal government reducing it to nothing more than a shell of what it is today. The result will be the dismantling of medicare, a program which has served Canadians across Canada so well for generations. Medicare coverage of ABA for autism? Not under Harper rule. It is naive to think otherwise.

The tool Harper will use to dismantle the strong federal government is simple. He will introduce plans to formally limit Ottawa's power to spend in areas of provincial jurisdiction. With restrictions on federal spending the federal government will shrink as Harper has always wanted. Federal oversight of medicare will disappear and with it any chance of a National Autism Strategy in Canada or medicare coverage of autism. The ability of autistic children in Canada to receive proper treatment for their autism disorder will depend entirely upon accidents of geography. If they live in Saskatchewan they will get little or nothing. If they move next door to Alberta they will have full coverage.

Many autism advocates, from all regions of Canada, and from all political party backgrounds, are determined to fight hard for a National Autism Strategy of substance, something more than a mediocre web page and a secretive, orchestrated, Autism Symposium of government selected delegates. To have hope of being successful in realizing the dream of a National Autism Strategy one thing is clear - we must do our best to contribute to the political demise of the Harper government.

The CIHR's Autism Agenda - What Is It?

Amongst the many criticisms of the CIHR' s secretive National Autism Symposium is the fact that there is still, one month before the chosen ones gather behind closed doors at the Toronto Airport, no publicly available agenda, no list of speakers, and no list of names of the chosen ones.

In this exercise in "community building above all" who will be representing the autism community in New Brunswick? What questions will they be asking on behalf of my 11 1/2 year old profoundly autistic son? What subjects will they be discussing which might affect my son's future?

The speakers must have been confirmed for weeks now and the subjects on which they will be speaking at this Star Chamber proceeding must be known to Ms Beckett, Mr. Quiron and Mr Harper. Why not at least tell potential members of this community that you plan to build what the CIHR, and your hand picked "community" representatives, will be discussing on our behalf?

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