Monday, May 12, 2014

Is the CASDA National Autism Needs Assessment Survey Credible and Legitimate?

"This survey marks an important opportunity for parents, individuals with ASD and professionals in the autism field to serve notice to our federal government that a national autism strategy is needed. Canadians with ASD deserve the attention of our government. They deserve to have policy and planning done using evidence from across the country and to have standards for service set at the national level,"said Cynthia Carroll, CASDA Chair."

Should autistic Canadians and their family members complete this survey reference above?  While I am very skeptical about the credibility and legitimacy of this survey, for the reasons that I set out in this commentary I do recommend that all eligible autistic Canadians, family members and care givers, give the organizers a chance and  complete the survey.

The above quote from CASDA director Carroll is from the CASDA National Needs Assessment News Release, set out in full below my commentary.  The quote itself is interesting in that it seems to assume, in stating that the survey is an opportunity to serve notice to our federal government that a national autism strategy is needed, that such notice has not already been provided, when in fact our federal government has been served with such notice many times over the past decade.

Parents here in Fredericton NB were actively involved over 15 years ago in lobbying our late, former MP Andy Scott to push our federal government to adopt a National Autism Strategy. Together with Nova Scotia MP Peter Stoffer a private members bill was passed which, although lacking teeth, did at least "serve notice" that a National Autism Strategy was needed.  A motion for a real national autism strategy also originated from the Maritime Provinces when former PEI MP Shawn Murphy attempted unsuccessfully to include autism treatment under our national healthcare legislation.  The Medicare for Autism NOW! organization originating in BC with members and supporters across Canada,  has advocated extensively for inclusion of autism treatment in medicare coverage for many years.  The Canadian Senate released its Pay Now or Pay Later report several years ago.

Nothing of substance resulted from these historical efforts.  Even a National Autism Symposium which had been scheduled was cancelled and then rescheduled under the hilarious excuse that premises for the Symposium were unavailable in Canada's National Capital Region where such events are a core business of the area.  When the event was rescheduled local autism community activists, including me, nominated to attend by autism professionals were not accepted for participation by the Harper government.  Instead strident anti-ABA activist Michelle Dawson was given prominence and a stage to push her opinions at the "national autism symposium".  The efforts of parents across Canada had led to the introduction to various degrees of early ABA intervention, the only evidence based treatment for autism, in the provinces. The federal government opposed a national autism strategy which recognized those efforts and instead set up a phony puppet symposium of those who opposed evidence based early intervention for autism disorders.  

Is there any reason to think that the current needs assessment survey will result in a credible, representative statement of needs of autistic Canadians and their families? The CASDA web site indicates that the survey is funded by the Public Health Agency Canada (PHAC). As someone who has seen the opposition by Prime Minister Harper and CASDA "Political Ambassador" Mike Lake to a national effort to ensure that all Canadian children receive effective evidence based treatment regardless of their province of residence I am doubtful. As someone who has been active in autism advocacy in Canada including the events leading to the replacement of the original National Autism Symposium by the phony symposium dictated and controlled by the Harper government I will be very surprised if this survey results in a credible, genuine National Autism Needs Assessment.

I  sincerely hope though that  my skepticism is misplaced.  I myself completed the survey.  As a lawyer I have on occasion changed the legal opinion provided to clients when new information, new evidence points to a different or contrary conclusion.  I hope that this survey results in a genuine assessment of the needs of ALL autistic Canadians, of all ages and severity levels wherever they live in Canada.  Just as important I hope that the survey results in effective, real action and not more posturing and inaction.  

I urge all eligible Canadians to complete the CASDA survey.

News Release

Autism National Needs Assessment Survey Responses Surpass Halfway Mark

 In one month, over 2,600 surveys completed, but help needed from ALL provinces [TORONTO – May 12, 2014] On April 2, 2014, World Autism Awareness Day, the Canadian Autism Spectrum Disorders Alliance (CASDA) launched the first National Needs Assessment Survey for Autism in Canada. Today, CASDA is delighted to announce that, after one month, they have surpassed the halfway mark with over 2,600 responses from the Canadian Autism Spectrum Disorder (ASD) community. This National Needs Assessment Survey is the first of its kind in Canada and is designed to canvas the opinions of thousands of Canadians, from all provinces and territories, with a goal of 5000 surveys completed. After analyzing the data to date, there has been an overwhelming response from ASD professionals and caregivers in Ontario but not yet enough representation from caregivers, professionals and those with ASD in other provinces. To ensure the data is statistically accurate and representative of the entire country, CASDA needs solid rates of response from all provinces.

 "This survey marks an important opportunity for parents, individuals with ASD and professionals in the autism field to serve notice to our federal government that a national autism strategy is needed. Canadians with ASD deserve the attention of our government. They deserve to have policy and planning done using evidence from across the country and to have standards for service set at the national level," said Cynthia Carroll, CASDA Chair. While 1 in 68 people in Canada will be diagnosed with Autism, there are thousands more who live, work and care for them. The data gathered from this survey will identify existing services and service gaps, provide perspectives based on regional, individual, family and professional views and needs as well as help support surveillance initiatives. Survey Quick Facts

• CASDA needs 5000 Canadians to complete the survey in order to ensure a statistically representative sample size.

• 300 surveys completed by parents/caregivers of children with ASD are needed in each province.

• To be eligible to complete the survey you must be, an Individual with ASD, a Family member of an individual with ASD or a Caregiver of an individual with ASD.

 • Survey is open only until June 30th and takes just 15 minutes to complete • Survey is available online in English at and in French

• CASDA will use this information to write a report for the Public Health Agency of Canada, estimated publish date is October, 2014.

• Join the conversation online using #GetTo5000

CASDA wants everyone touched by Autism in Canada to have their voice heard and together, the ASD community is in a position to influence public policy and planning in Canada.

CASDA is a national coalition of autism related professionals, family members and community members and together, they are working to secure the federal government’s commitment to the development of a National Autism Action Plan. The National Needs Assessment survey was developed by Dr. Jonathan Weiss, a researcher from York University and CIHR Chair in Autism Spectrum Disorders Treatment  and Care Research, in consultation with Cynthia Carroll from Autism Nova Scotia. This research has been  approved by the Ethics Review Board of York University. From the data collected, CASDA will produce a  report to assist with its planning and advocacy process.

For more information, contact
Marg Whelan
Project Manager


farmwifetwo said...

I think I would always be very careful about what information I give any organization. Always. I've never heard of this one.

Dione said...

I think it is important that as many people as possible fill out this survey. I too am a bit skeptical about what will be done with the results but the more voices we have saying "WE NEED A NATIONAL STRATEGY" the stronger we are as advocates.

AutisticWisdom said...

Services can never be standard at a national level because services for ASD are under provincial jurisdiction. A national strategy just means more federal money which will just go to administration and not to the families who need it. Go after the provinces!

Unknown said...

AutisticWisdom thanks for you views. I have advocated provincially. With other parents we have actually done well here in NB compared for example to Saskatchewan.

I understand jurisdictional lines but in Canada we have a national medicare system which arose from cooperation between federal and provincial governments. There is nothing to stop that from happening with respect to autism disorders. Children with autism disorders should not lose out on treatment because of which province their parents reside in.