Monday, August 29, 2011

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!


Anonymous said...

You really have to wonder what the cause is of the Canadian government freaking out about providing evidence-based care for autism.

farmwifetwo said...

B/c it isn't evidence based at all. Where's the research?? Where's the variations of ABA? What's the gold standard? How many hours, how much play mixed with how much training?

There isn't any. There's no proof at all except for parents saying "it must have been...." Been what, speech, OT, 1:1 teaching, growing up, good parenting???

Truth is, nobody knows. All I know is that my severely autistic son did not thrive in the program... but we certainly got blamed for that lack of thriving and his distaste for it.

He's doing well now... being treated as a child and with respect.

As Kim wrote this morning "parental anecdotes is not evidence". Unless you have an agenda.

Unknown said...

FW2 I was expecting your comment on this subject. The authorities I cited have referenced hundreds of studies confirming the benefits of ABA interventions for autistic children. Your argument that the evidence is simply anecdotal is based on erroneous information. You should read some of the reviews I have presented to you several times.

Anonymous said...

Farmwifetwo....ABA is the gold standard, and there is plenty of documentation from the world's most credible resources, court challenges, documents, etc. With all do respect...get your head out of the sand and get educated.
I am a parent of an autistic son now 17yrs old and without ABA done by a professionally trained team he would be in 'no man's'land still. However, he is remarkable. I am also a nurse and scientist and know of what I speak.
We need ABA to be covered by Medicare...period.
Dawn Bowie

RAJ said...

Szatmari must be schizophrenic in his own thinking. When the California twin study was published he was an invited commenter and he asked the question'Where did all the heritablity go?'
Genetic influences operate in almost all human diseases as well as developmental disorders but so to do environmental influences.

Go to the SFARI autism blog:

This is the most viewd article currently still up on SFARI and if you read my commentary and access the links I provided you will ask the same question I did. Where is the heritability in the genetic syndromes with a high rate of co-ocuring autism?

If the gentic determinists has lost the heritability in the genetic syndromes and they have lost the heritability in the twin studies all they have left is grasping at hypothetical straws while continuing to claim that environmental factors in autism are an irritant to be ignored.