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.

3 comments:

Ettina said...

Is ABA really effective? Almost every study I've seen of ABA has a 'reversal' period that clearly shows the effects of ABA last only while the program continues. A teaching program is supposed to make you able to do whatever they taught even after the program is done. ABA may do that with sufficient duration, but it's certainly not been proven.

Autism Reality NB said...

Ettina

You say that the enduring benefits of ABA has never been proven. In doing so you refuse to acknowledge the conclusions of the AAP based on studies over five decades. I am sure there are no studies, and no evidence that will dissuade you from your anti-ABA belief system.

jim bender said...

I too have a son with Autism and we as well have suffered through a fractured delivery system of programs and services that are poorly funded.
ABA works. We use it in our home. We had 6 months of ABA training and then were dumped on our own. Thank God we learned most of the program on our own.(or we'd be screwed)
Too bad the schools won't use it here though.
Too bad other canadians don't see the benefit of helping all disabled persons.
Too bad we couldn't turn ourselves into corporations and grab up on some of that conservative largesse.
I don't expect anything to change for my family or my son.In fact, I fully expect that by the end of my life that nothing will be good for him unless I provide it myself.If I were you, I would find a way to stop paying into the tax system and invest that money somewhere that the pricks in Ottawa won't see.Set up a cottage trust and leave it to your son.
Our governments could care less about what happens to these kids as long as the kids aren't theirs.
Sorry for being a pessimist, but its' been 13 years of outright lies, 13 years of governments' squandering opportunities to advance these kids and 13 years of promises that were barren.
In Ontario things are desperate as autism numbers rise and financial contributions from governments fall.It will only get worse.