Thursday, January 24, 2008

Autism Communication Deficit At The CIHR

The Canadian Institutes of Health Research have played an important role in fostering autism research. The CIHR quite properly promotes its role in funding the recently reported study on the association of certain chromosomes with some instances of autism. The CIHR also professes to be committed to partnering with relevant "stakeholders" and community interest groups in an open, transparent manner:

Freedom of Inquiry CIHR recognizes that the primary purpose of all research in the public domain is the creation of new knowledge in an environment that embodies the principles of freedom of inquiry and unrestricted dissemination of research results.
Transparency and Accountability Decision-making processes should ensure that all decisions are fair, open, reputable and able to bear close public scrutiny. Honest and cost-effective accountability mechanisms will be in place for all aspects of the work undertaken by CIHR.
Collaboration CIHR values positive and mutually respectful relationships with partners and stakeholders who are committed to openness, responsibility and fairness and are mutually respectful of each other's priorities and objectives.

Measured against the noble principles espoused by the CIHR are the realities of the CIHR organized national autism symposium which was held, according to rumour at least, November 8 and 9 2007 in Toronto. The symposium was supposed to be a key element in the Stephen Harper- Tony Clement "national autism strategy" such as it is.

Invitees to the symposium were told that the symposium would be an exercise in community building, an odd goal for such a secretive event. No program, list of speakers or list of invitees to the event were ever published. The invitation also indicated that the symposium would be conducted by professional facilitators, which is a PR way of saying that the discussion would not be open and dissent or criticism would not be permitted. The hand picked delegates were selected not by the community organizations they were supposed to represent but by CIHR officials.

To date, no information has been released of the proceedings of the invisible National Autism Symposium of November 8 and 9 2007. In relation to autism, it seems reasonable to say that the CIHR has failed miserably in its goal of community building. It is not clear what the CIHR is so afraid of although it seems that parents advocating for a national autism strategy to actually help Canadian children are high on its "do not invite" list. Perhaps the CIHR scientists/bureaucrats are simply trying to ensure maximum compliance with their marching orders from Prime Minister Harper and Health Minister Clement.

What the CIHR is not doing is community building. What the CIHR is not doing is communicating with Canadians about autism, autism research or effective evidence based autism interventions. When it comes to autism the CIHR suffers from a massive communication deficit.

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