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‏إظهار الرسائل ذات التسميات Dr. Susan Bryson. إظهار كافة الرسائل
‏إظهار الرسائل ذات التسميات Dr. Susan Bryson. 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!

A New Brunswick Autism Dad's Open Letter to Dr. Susan Bryson re Nova Scotia's Immoral Autism Lottery

May 1, 2009

Dr. Susan Bryson, PhD
Joan and Jack Craig Chair in Autism Research
Pediatrics, Dalhousie University


Dear Dr. Bryson

I am writing you this open letter (also posted on my blog site Facing Autism in New Brunswick) to express my concerns about Nova Scotia's lottery system of autism service delivery a system which, in my respectful opinion, is immoral. I do not believe that something of such importance to the life and well being of a child with a serious neurological disorder should depend upon a system of chance. I do not believe that such a system can be rationalized in a country like Canada which recognizes the desirability of a universal, publicly funded approach to health care. I do not believe that Nova Scotia's lottery system of provision of autism service delivery is consistent with principles expounded in several versions of the United Nations Declaration of the Rights of the Child.

As a lawyer I am also doubtful that the lottery system would survive a challenge under the Charter, notwithstanding the Auton decision, given that, unlike in Auton, the Nova Scotia government has agreed to provide some autistic children with autism specific ABA services and given the further empirical and professional support for ABA since the Auton decision, including the 2007 review by the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders. I ask that you, with your internationally recognized autism expertise and your acceptance by government authorities in Canada, including provincial governments and the federal CIHR, speak out publicly against the lottery system of autism service delivery in Nova Scotia.

As you are undoubtedly aware, those Nova Scotian families whose autistic children lose out on the Nova Scotia Autism Lottery, and who have the means to do so, leave Nova Scotia in search of services elsewhere. In one well known instance, a husband and wife in that situation, both medical professionals, left Nova Scotia for Manitoba for the autism services available at the St. Amant facility in Manitoba. For famiiles of lesser means whose autistic children do not win the autism lottery .. well .. with your background and expertise you know what awaits them.

I am the father of a 13 year old boy diagnosed with Autistic Disorder and assessed with profound developmental delays and I have been a parent autism advocate here in New Brunswick since my son's initial diagnosis at age 2, a relatively early age of diagnosis 11 years ago. I also have very strong family ties in Nova Scotia where I was born and where my parents and siblings, cousins, nephews and nieces live, including an autistic child in my extended family. I also have friends in Nova Scotia's autism community including Jim Young of FEAT NS who has been a relentless and outstanding advocate for autistic children and adults in Nova Scotia. I am concerned for autistic children and their families who must be subjected to the Nova Scotia autism lottery.

I am also deeply concerned for a more immediate reason. I am concerned that the Nova Scotia lottery model which, on its face, reflects greater concerns for budgetary considerations than for the best interests of autistic children, might influence developments elsewhere in the Maritimes and particularly here in New Brunswick. As an autism advocate here in New Brunswick I can say from personal experience that our autism advocacy community had to overcome many obstacles to develop an autism service delivery model at both the pre-school and school levels that is as good as any that I am aware of in Canada or the United States. And it took time to develop the model we now enjoy.

In 2001, after an Interdepartmental Committee Review (Education, Health, Family Services), the New Brunswick government committed to the principle of provision of evidence based autism interventions. Most autism services are now provided by Autism Support Workers, Clinical Supervisors, Teacher Assistants and Resource Teachers trained at the University of New Brunswick College of Extended Learning.

The UNB-CEL AIT program has been subjected to external review by Dr. Eric Larsson who has commented about the program as follows:

"The current AITP is a remarkable and thorough program that has been developed to an exceptional level of quality in the context of limited resources. The province-wide model is one that many other provinces should adopt, as it carries with it many cost-effective features. The curriculum content requires little modification".

In addition to Dr. Larsson's external review the New Brunswick autism service delivery model has been the subject of presentations by key local professional and administrative personnel at national and international conferences. Dr. Paul McDonnell a clinical psychologist and Professor of Psychology (Emeritus) from UNB has been instrumental in educating New Brunswick parents and in providing clinical autism services to autistic children. He made a presentation on the New Brunswick Autism Service delivery model at the ABA International Symposium, Chicago, May 123-28, 2008. Anne Higgins, Director Professional Development Division, College of Extended Learning, University of New Brunswick, made a presentation on the NB model at the CAUCE (Canadian Association for University Continuing Education) Conference 2008 at the University of Western Ontario.

The pre-school autism interventions are provided by the Autism Support Workers and Clinical Supervisors at several agencies situated around the province. AITP trained Teacher Assistants provide daily intervention and educational assistance to autistic children in neighborhood schools across New Brunswick. The system is not perfect. More work needs to be done but I can tell you as an autism advocate with ties across Canada that some people have actually moved to, or are considering moving to, New Brunswick to seek autism services not available in their home province, including some from Nova Scotia. I have visited Ontario as part of a national autism advocacy campaign last year and I am well aware through the personal friendships that I have developed there, and through my blogging activities and contacts, that Ontario despite its relatively greater wealth, is not even close to New Brunswick in provision of pre-school or school autism services.

In addition to a serious effort by the current government of Premier Shawn Graham and Education Minister Kelly Lamrock to provide autism training to Teacher Assistants and Resource Teachers our schools have also begun to accommodate ABA based education for autistic children in our schools in a variety of settings. Some autistic children, for whom that environment is suitable, are educated for the most part in the mainstream classroom. Others, including my son Conor who is severely autistic, are educated in a small separate room, at our request, where he is not overstimulated and overwhelmed by the mainstream classroom environment. Conor visits common areas of the school for specific periods for limited periods of time with a TA who is UNB-CEL trained and who pays close attention to my son's reaction to his environment and ability to function in different locations. In terms of peer acceptance I can say through personal observation taking him to and from school that that my son has been very well received by other children in the grade school and middle school he has attended in our neighborhood even though his time with them is for brief periods during class time or in common areas of the school.

Apart from these regular pre-school and school services New Brunswick also has an autism specific pediatric tertiary care team at the Stan Cassidy Centre for Rehabilitation in Fredericton. At one time the autism team at the Stan Cassidy was scheduled for closure .... because the overwhelming demand for its services was perceived as a threat to the continued viability of the Stan Cassidy's overall operation. Community and government response to that initial closure decision was such that the decision was reversed. The autism component of the Stan Cassidy team has been rebuilt and now includes a next generation of professional leadership including Dr. Tara Kennedy who has quickly become immersed in, and a very important part of, New Brunswick's autism service delivery model.

These autism services in New Brunswick have been largely built since 2003-2004 while next door Nova Scotia, starting from a similar vantage point, today offers a lottery system of early intervention with little in the way of systemic provision of autism services in schools across Nova Scotia. Here in New Brunswick we had a determined parental autism advocacy community driving much of what has been accomplished. We also had responsive government and political leadership.

Vitally important to what has been achieved though has been the direct and sustained involvement of New Brunswick's academic and professional autism community in helping parent advocates understand what is required, from an evidence based perspective, to help our autistic children. The same people have been engaged in helping government work through and understand the importance of evidence based approaches to autism service delivery. The public involvement of our academics and professionals has been key to what has been achieved in New Brunswick.

I ask you to speak out publicly against the immoral autism lottery system in Nova Scotia. Your expertise, and government trust in you, would surely mean that your views would be given considerable weight by public decision makers. Nova Scotia's autistic children would surely benefit from your public advocacy.

You could consider recommending to the Nova Scotia government that it replace its immoral autism lottery with the more just, equitable, evidence based and province wide model developed here in New Brunswick and recommended by Dr. Eric Larsson.

Respectfully,


Harold L Doherty
Fredericton New Brunswick





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