A Word from the President, Fall 2005

From “L’Image”, Fall 2005

Mr. Robert Rabinovitch
CEO
Canadian Broadcasting Corporation
C.P. 6000
Montreal (Quebec)
H3C 3A8

RE : The « Autisme : les nouvelles pistes » segment of «Découverte » on October 2nd 2005


Sir,

What should someone expect when he watches a scientific show called Découverte (discovery)? One should expect to be informed on the most valid and current information. One may imagine the journalists researching every angle of their topic, to learn everything and understand the matter well-enough to inform the general public.  We expect them to work with objectivity and honesty in mind, always looking for the latest information.  Indeed, we often perceive Découverte’s team as going on expeditions to actually « discover » along with viewers.

I can assure you that few efforts were made to produce “autisme: de nouvelles pistes”.  The information presented is outdated. Neurological and genetic disorders have been associated with autism since the beginning of the 1980’s. In 1985, the neurologist Margaret Bauman (B.ton) presented here in Montreal the results of a study she conducted on brains of autistic people who died in accidents.  She confirmed the presence of brain and cerebellum alterations, as did Dr. Erik Courchesne (California). Hundreds of millions of dollars have been spent in the last 20 years on fruitless genetic research…

Moreover, the two themes presented have been covered extensively by the media, since they are the only causes accepted by psychiatry.

The most shocking fact is that Mr. Tisseyre and his team are actually aware of the research and clinical studies uncovering real new leads in understanding autism. The team from Découverte were invited in 2000 to the first medical conference on autism to be held in Montreal.  Many researchers and doctors presented the results of their research as well as new potential treatments.  The team met with the doctors and talked with them.  Mr. Tisseyre showed great open-mindedness and said he was interested in the matter, whereas the rest of his team just brushed off the whole medical aspect of autism.  Mr. Tisseyre even came back to the third conference and seemed impressed with the quality of the research.

What can one think of the October 2nd show? That autistic children are not worth the extra investigation? The show had a condescending and demeaning tone.  Furthermore, they forgot to emphasize the fact that they were presenting hypotheses…

In 2005, a simple search of the word “autism” on the internet will bring you a wealth of information on the subject, among which you will find information on the research and clinical studies done by DAN! (Defeat Autism Now!) and CAN (Cure Autism now).  Their first medical protocols were established in 1994-95 and all DAN! doctors and researchers are attached to universities.

It would have been more interesting to talk about the study conducted by Dr. Jill James (University of Arkansas), which led to the discovery in autistic children of the absence of four critical metabolic elements responsible for detoxification. Dr. James is also experimenting with new treatments that have so far yielded impressive results.  The clinical study of Dr. Arthur Krigsman, a New York gastroenterologist should also have been considered.  It shows that a high percentage of the autistic people he examined had a new form of bowel inflammation.  There is the work of Dr. Haley and Dr. Adams on heavy metals and chelation, the work of Dr. Rousseau (England) on the effects of intestinal flora imbalance on behaviour. In short, many other avenues could have been explored:

  • The gluten-free, casein-free diet, used by hundreds of families in Quebec, yields surprising results in some children;
  • Hyperbaric treatments are tried by many Quebec families.

It would have been essential to talk about the rise in the number of autism cases.  If that rise was solely explained by better diagnosis, that rise would have eventually stabilised… unfortunately, such is not the case.  Autism was seldom known in 1995, yet in 2005 everybody personally knows someone living with the disorder: a child, a neighbour, a friend, a parent.  You can now find families with three or four children with autism in Montreal, along with families of five children where only one has autism.  That alone is food for thought.  Here are the Ministère de l’Éducation’s numbers for students with autism, the only numbers available thanks to their code system.  They speak loudly and yet exclude children under five and adults over 21.

Ministère de l’Éducation du Québec :

  • From 1990 to 2000 : 410 students to 1025, a rise of 150%;
  • From 2000 to 2004-2005 : 1388 students to 3354, a rise of 142%

Commission scolaire de Montréal :

  • 1989 – 1 classroom
    2003 – 42 classrooms
    2004 – 50 classrooms
  • 1998 – 91 students
    2003 – 310 students,
    a total rise of 241% in 5 years, a mean rise of 48% per year.

Autistic children are part of a section of the population that has been cast aside and ignored for a long time now.  Even if the first few millions have been allocated by the government in 2003, the lack of expertise, combined with a substantial rise in the number of cases, makes for a difficult day-to-day situation.  As for the medical aspect of autism, even if the research is there, nothing has happened in Quebec.  NOTHING.  No one listens to parents, no one believes them and worse, they are refused the medical tests they demand for their children.  I have often stated that this constituted criminal negligence.  Our children need help and yet we are still stuck with hypotheses and aging explanations.

Thousands of children with autism are wasting their lives, waiting for something.  It is a form of kidnapping.  The media has a part to play: they must have the strength to convey the right information, not the information those providing funding would like them to perpetuate.

Carmen Lahaie
Mother of Jérémie, 26 year-old person living with autism
Nurse specialised in pediatric psychiatry
President of ATEDM

cc Monsieur Guy Fournier, Président du conseil d’administration de CBC / Radio-Canada
cc Monsieur Daniel Gourd, Vice-président principal, Télévision de Radio-Canada
cc Monsieur Charles Tisseyre, Animateur, Découverte
cc La Presse, le courrier des lecteurs
cc Le Journal de Montréal, le courrier des lecteurs
cc Le Devoir, le courrier des lecteurs

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