Kids Brain Health Network: Beyond the numbers: Why Canadian neurodisability prevalence rates matter
Rob More remembers sitting in on a meeting where two parents were telling the school principal that their children with Fetal Alcohol Spectrum Disorder (FASD) needed more support. The school psychologist chimed in to inform them that FASD was not a recognized disability.
For More, a special needs educator and parent advocate, the story encapsulates the challenges faced by families and youth with FASD.
“When you have a situation where parents are trying to convince a principal that a medical professional is wrong and they are right – well, that’s a really hard argument to make,” he says, explaining that at the time FASD didn’t even have a medical code.
For people living with a heavily stigmatized and often invisible disability like FASD, counting the number of people in a population affected by the condition, known as prevalence, can serve as a powerful tool to change policy and advocate for supports. Until April 2018, all that Canadians concerned about the issue had to go on was a rough estimate that recently proved to be inaccurate.
This spring, a study led by Dr. Svetlana Popova, senior scientist at the Centre of Addiction and Mental Health’s Institute for Mental Health Policy Research suggested that between 2-3 percent of schoolchildren aged 7-9 in the Greater Toronto Area have FASD.
“[It] was urgently needed,” Dr. Popova told an interviewer for CBC’s Metro Morning. “The prevalence of FASD in the general population was unknown – we didn’t know how many people with FASD exist in Canada.”
That figure has been pegged at 1 million, based on an extrapolation from data Popova and colleagues collected in 40 elementary schools.
“This study is eye-popping, and the effects of FASD on the Canadian landscape can’t be ignored any more,” says More, who has three adopted children living with the neurodisability. “We finally have empirical data — not just our opinion or websites, but empirical data we can turn to and refute any misinformation that exists in terms of FASD.”
New figures for Autism invite comparison
The previous month, first-in-Canada prevalence figures for autism spectrum disorder (ASD) were announced by the Public Health Agency in Canada (PHAC): 1:66 Canadian youth are currently living with autism. Provincial governments in Newfoundland, Nova Scotia, Prince Edward Island, New Brunswick, Quebec, British Columbia and the Yukon partnered with the federal government, researchers, families and advocacy groups to produce the report, which was more than a decade in the making.
“People are still surprised that by 1.5 percent of children have autism – that figure has received quite a bit of attention,” says Allison Pooley, executive director of the Asante Centre, a British Columbia-based organization that offers assessment and diagnostic services, family and community support, as well as education and training, for FASD, autism and other neurodevelopmental disabilities.
“Most people working in the field of FASD are not surprised by the fact that it’s twice as common as autism, and crosses all socio-economic and cultural boundaries. But this information is new to the average person.”
The FASD study debunks the stereotypes reflected in public opinion, according to James Reynolds, KBHN’s FASD project lead (Queen’s University). “These were kids living with their biological parents in affluent parts of the GTA who have been identified as having FASD,” says Dr. Reynolds. “Now, sitting in the Ontario legislature I’m able to look MPPs in the eye and tell them this not something that’s only happening up in the north in rural communities. This is something that’s happening two kilometres from here.”
“Now in all of our advocacy efforts – whenever we meet with decision makers – we have science behind us proving the scope of the problem, therefore what strategies they need to start putting in place to mitigate the long-term impact and cost associated with failure to identify and support these kids,” says Reynolds. “Collectively, our voice is starting to get louder and louder.”
Deborah Pugh, executive director of ACT-Autism Community Training is a member of the PHAC advisory committee, and has been involved in the autism prevalence initiative since 2011. She describes the recent ASD report as one of the most in-depth works of its kind in the world. Canada’s surveillance system captured 40 per cent of the population between the ages of five and 17 who had received an official diagnosis.
“It’s really important to have Canadian data that’s comprehensive, and that scientists and families can look at and be assured that this gives a very strong, clear picture of our current situation and how we have to plan for the future,” says Pugh.
“The most important thing is what are we going to do with these numbers: what are the next steps, how are policymakers going to inform their decision making based on this data, and will we have responsiveness on the parts of the provincial or federal governments?”
Pugh credits the ASD community across the country for their determination to push for an official government study of this magnitude, and hopes similar reports will be done for other neurodisabilities in the near future.
“It’s important to note that this is not supposed to be just about ASD,” she adds. “We hope this report is a precedent on which the other conditions will be examined, particularly FASD but also other neurological conditions. Many of them overlap, and it’s only when we get a clear picture can we fully understand what’s going on.”
Sidebar – After Counting, What Then?
Working in the FASD field for the last 15 years, Allison Pooley is used to seeing the neurodisability fly below radar.
Since the publication of the prevalence figures for FASD, multiple media outlets have approached Pooley, the executive director of the Asante Centre, a multi-site diagnostic and service centre in British Columbia, seeking to understand the implications of the prevalence study. This is an exciting first stage of inquiry, Pooley reflects, one she hope will elicit significant response from policymakers and funders over the next year.
Advocacy will be essential in the developing dialogue about FASD, she says, “as we try to prevent individuals from falling through the cracks in every system. This study helps add weight to advocacy initiatives across Canada, finally demonstrating the importance of the conversation and how we can coordinate efforts.”
Before, FASD was never been part of the conversation. But it’s catching fire now.
Kindling was already smoldering in Quebec between March 21 and April 24. FASD has typically had low visibility, in the province, but more than 1,800 people urgently pressed the Government of Quebec to implement an FASD action plan between March 21 and April 24, citing the recommendations of the National Institute of Public Health of Quebec. On May 1, Public Health Opposition Critic May Lise Lavallée, MP (Repentigny) introduced a petition in Quebec’s National Assembly, reflecting the public outcry.
Strong advocacy by parents in Quebec’s autism community saw some success when last year, the government boosted funding by $29M annually and a one-time additional infusion of $11M to address issues across the lifespan. This was less than half the amount called for by the community. Children with autism are still waitlisted two years after their diagnosis, lined up for services they may not receive before aging out of eligibility.
Changing the system
“The question now is how we’re going to correct a lot of the inefficiencies that exist in the system,” remarked Warren Greenstone, president of the Miriam Foundation, an organization involved in autism care since the 1960s, at the time in the Montreal Gazette.
“Prevalence was an important starting point in our consideration of autism and intellectual disability and the changing needs of people over their life course,” says Malvina Klag, president of the Miriam Foundation-funded See Things My Way Centre for Innovation. Now focused on piloting new approaches to service across the lifespan, the Centre’s goals are replicability and catalyzing change in the public health system.
“We’re here to help disrupt the existing system and bring about much-needed improvements,” she says. “However, in order to do so, beyond overall prevalence and prevalence by age, we need to know more about prevalence of the various sub-groups within these populations according to their support needs.”
The system in Quebec is in the process of changing itself. Reorganization and a new focus on gap analysis, needs assessment and program evaluation are taking root within elements of the Quebec health care system, including those that touch children and youth with neurodisabilties.
Suzanne Cloutier, associate director of rehabilitation for the Integrated Health and Social Services University Network for West-Central Montreal – a centre that provides services for the highly diverse population of people with disabilities with its geographic area – says that “for most of our history here in Quebec, we’ve provided rehabilitation and care. It was much more maintenance-oriented. Now we’re asking, ‘what can you achieve, what kind of impact will your action have on the client’s daily life, and will that be maintained over time’?”
The prevalence figures for FASD didn’t surprise Cloutier, who suspects many, if not most of Montreal’s children with prenatal alcohol exposure have not been diagnosed. For the time being, the notion of prevalence won’t change the reality that children and youth showing signs of, or already diagnosed with the neurodisability, will not be likely be seen in rehabilitation centres. The treatments on offer aren’t targeted to their needs.
Are National Strategies the Answer?
Members of the FASD community are hopeful that armed with prevalence figures that are scientifically sound, the federal and provincial governments will recognize the scope of the problem and respond with increased funding, services, and supports. In the 2018 $300 billion federal budget, no money was allocated to FASD, an issue Executive Director of the CanFASD’s research network Audrey McFarlane recently explained in a blog post.
“One reason is that there is no national strategy for coordinating Canada’s efforts and response to FASD,” McFarlane writes. “We also recognize that many families are unable to advocate for their loved ones because of the stigma and shame that continues to surround FASD. We are proud of the families and professionals who are advocating for their loved ones with FASD, but time and time again, the response to their advocacy is long waitlists or an absence of services altogether. We know a lot about FASD, but there is still work to be done.”
Looking forward, many FASD advocates envision the community, researchers, and provincial and federal governments uniting in a way similar to how the ASD community in Canada has come together.
Even with the advantages of more funding and comparative cohesion and momentum, the autism community has not succeeded in convincing the Conservative or Liberal Governments to implement a national strategy.
Senator Jim Munson, a longtime supporter of the autism community, applauds the prevalence statistics, saying they “begin to provide the evidence-based data needed to inform policy and programs.”
But a national strategy is also necessary, he states in an April 17 editorial in the Ottawa Citizen. “It names the partners, what their role is and how they need to work collaboratively. It recognizes the federal, provincial and territorial jurisdictions and the areas of that collaboration. It gives meaning to the scientific research. It defines what federal leadership is. It names the gaps in policy and funding. It highlights best practices in all the multi-sectors.
“The federal government in its 2018 budget announced some program funding for two areas of initiative. It is hoped that this announcement will help us get to a national strategy. Yet it is not enough. Governments and organizations are working in silos and missing opportunities to collaborate and bring innovative thinking. Too many communities are underserved and under-resourced.”
Both Rob More, father of three “inspiring and amazing” children living with FASD, and Allison Pooley, working in a community-based organization, would like to see FASD organizations achieve gains similar to those made by the ASD community. “We need to build upon public understanding of autism that everyone has worked so hard to develop, and leverage that knowledge and compassion to address other neurodevelopmental needs like FASD,” she says.
“We feel the FASD community needs a larger voice, and we need to be louder and more unified as a community than we are right now,” adds More, noting the new statistics are already working to unite researchers, families, and advocacy groups.
“The biggest thing this number does is tell people they’re not alone in this,” concludes More. “It doesn’t eliminate the shame and the stigma, but it certainly lessens it. These numbers give legitimacy to what those of us living with this disability have been saying – and that brings us hope.”