Sunday, January 17, 2010

Autism in Canada - Harper Government Has Promised Little and Has Done Even Less

The following letter was sent from Autism Canada to Canadian Members of Parliament.  The Conservative Government promised very little help for autistic children and adults. Staying true to form it did not even deliver on the little that it did promise.

The  CIHR national autism symposium which Autism Canada refers to as a "consensus" symposium was declared by the CIHR  to involve consultations with the autism community. In truth the CIHR National Autism Symposium was  a sham which excluded autism advocates including me (1), (2), (3), (4), (5).

My name, as a father who had been active in advocating for autism specific  preschool and school services in New Brunswick was put forward twice by reputable autism spokespersons in New Brunswick and was rejected.  Other advocates active in seeking government funded evidence based interventions for autistic children were also excluded. Meanwhile well known anti-ABA, anti-autism cure figures were invited to attend.

Autism Canada is understandably diplomatic in dealing with an arrogant government that simply prorogues, "suspends", the operation of our federal Parliament when it suits its purposes to do so.  The reality though is that the Harper government has promised little and done less to help autistic children and adults. Meanwhile autistic children who could have been helped have languished without treatment across Canada.  That is Autism Reality in Harper's Canada.

Where I disagree with Autism Canada is in its call for a national autism division within Public Health Canada. Such an organization would amount to just another government department that would twiddle its thumbs, agonize endlessly over autism and do nothing to help autistic children and adults. We already know what has to be done.

Parents across Canada have advocated tirelessly for government funded autism intervention for their children at the preschool and school levels. The federal government could have acted by cooperating with provincial governments most of whom badly need funding for autism interventions. There is also a pressing need for more funds to provide for adult care facilities across Canada. Establishing a separate autism department will only create further delay and result in bureaucratic autism kings who will still refuse to listen to parents seeking to help their autistic children just as the CIHR and the Government of Canada have done for so long.

Autism Canada is trying diplomacy ... again.  Hopefully it will have some tiny impact on Canada's ProRogue Prime Minister.  Regardless, I thank Autism Canada for trying.

The Autism Canada letter follows:

As a Canadian Charitable Autism Organization and member of the Canadian ASD (Autism Spectrum Disorder) Alliance, Autism Canada Foundation feels a great responsibility to ensure the disorder is properly cared for across our country.  Our organization is requesting the implementation of a division for autism within the Public Health Agency of Canada (PHAC) responsible for surveillance, epidemiology and policy, specifically a National Autism Strategy.  

This would not be unlike the way in which other disorders are currently addressed within PHAC.  
While we appreciate the Honourable Lawrence Cannon’s response and the numerous federal initiatives catalogued therein, we believe these programs fall short of truly addressing the issues of concern to the millions of Canadians affected by autism.  In examining the government’s initiatives to date, we still have no national surveillance of autism or national autism strategy implemented.  Our concerns are:  
  • The $1M over five years for a National Chair in Autism Research and Interventions at Simon Fraser University has not been fulfilled.  Unfortunately, these funds were not sufficient to attract candidates for the position.
  • The $50K to translate the Canadian Autism Intervention Research Network website plus the additional $75K to enhance content is positive, but fails to inform parents on what they can do to help their children now.
  • While $27.1M has been spent on autism-related research since 2000, we need this figure to increase dramatically and for funds to be directed to autism-specific research that will have the broadest impact and follow clues provided by treatments currently working in children.
  • The Canadian Institute of Health Research national symposium was an invitation-only consensus meeting that had little or no impact on Canadians with an ASD.
  • While PHAC has consulted the autism community on ASD surveillance and is expanding Queens University’s surveillance system, we are still without a national autism surveillance system within our public health structure.    
We recognize the reasoning behind the research and initiatives that have taken place to date.  In fact, we applaud and support many of the steps that have been taken thus far.  However, the measures that have been implemented to this point are simply the first steps to tackle a major national issue.  Our concern is that the seriousness with which government officials claim to be approaching the matter is being undermined by the relatively minimal measures that have been employed to date.    

The importance of creating a division for autism within PHAC, which would facilitate the establishment of National Surveillance and a National Autism Strategy, is twofold:  
  • It would create a position of accountability and responsibility for overseeing the disease, which currently affects 1 in 150 children (United States Center for Disease Control).
  • It would give the nation a better understanding of the magnitude of the crisis we are facing so that strategic planning and appropriate interventions may be implemented.    
Our organization works hard to affect change and support families in the autism community, but the struggle to acknowledge and manage the pervasiveness of ASD nationwide must begin at the federal level.  With the return of Parliament, we implore you to reconsider the seriousness of the ASD epidemic that is afflicting millions of Canadians.  The incidence of ASD has been increasing in the United States and there is no reason to suspect it is any different in Canada.  The key to combating the disease and suppressing its exponential growth is to take swift and substantial action as outlined above.  

Autism Canada’s goal is to educate so that we might make the best decisions for all Canadians.  We look forward to working collaboratively with the Canadian ASD Alliance and the Public Health Agency of Canada to initiate a process of facing this important health issue.  

Cynthia Zahoruk
Autism Canada

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1 comment:

Eugene Forsey Liberal said...

Harper Must Go! I came across a website,, with some banners and useful resources targetted at educating people about the essential issue re. Harper & democracy, that goes beyond prorogation & Saturday rallies.