CIHR Institute of Neurosciences, Mental Health and Addiction
Dr. Rémi Quirion
Assistant Director, Ottawa
Dr. Barbara Beckett
Dear CIHR Directors
I have been active in autism advocacy in New Brunswick, and federally, for 9 years, since my son was diagnosed with Autism Disorder at the age of 2. Prior to the previously canceled Autism Symposium I contacted your office with respect to your procedures for selecting community representatives as delegates to the symposium. The symposium was canceled at the last minute. Now I am aware that you are inviting representatives from the "autism community" to attend the newly scheduled "Autism Symposium without input from the provincial societies. At least, you did not contact the Autism Society New Brunswick and request the name or names of delegates to attend at the Toronto airport symposium in early November. Instead you picked the delegates who would attend on behalf of the "autism community".
With respect, you do not have the right to decide who will attend on behalf of the autism community. I am very doubtful that you determine who would represent a professional or scientific body. Yet you have chosen to bypass the Autism Society and decide who, from the New Brunswick autism community, will be invited to attend the symposium. You can call such invitees community representatives but, since they are chosen by you, they are in fact CIHR representatives, not community representatives.
Research on autism issues generates many issues and controversies. The direction research takes has public policy implications. You yourselves, in the official invitation to your community representatives stated that:
"Above all, the symposium is being organized as an opportunity for
knowledge exchange, networking, and community-building."
Community-building does not begin by dictating who will be chosen to represent the community. It is unfortunate that you have taken a path chosen often by public relations conscious bureaucracies in the past. I have been involved in such events in New Brunswick over the past few years where the bureaucratic organizers of the events attempted to pick the autism community representatives. Usually they had the good sense to abandon such efforts, realizing ultimately that government or hand picked "community" representatives would lack legitimacy and credibility.
I hope you reconsider your approach to your delegate selection. Or at least, refrain from calling the symposium an exercise in community-building.
Harold L Doherty
cc. Facing Autism in New Brunswick