Adults can't get diagnosed with FASD in Manitoba, which keeps them out of special court

A unique court set up last year in Manitoba to handle offenders with fetal alcohol disorder still can't serve a wide swath of the population because there's no one in the province who can diagnose adults.

"We're missing a piece there," said Crown prosecutor Jodi Koffman, who oversees cases in the FASD court and is the point person for its youth matters.

Manitoba created a special court 10 months ago to hear cases involving those with fetal alcohol spectrum disorders — disorders affecting the brain and body, caused when the fetus is exposed to alcohol. Official diagnosis is required to access the special hearings.

However, the Manitoba FASD Diagnostic Clinic, the only clinic in Manitoba that diagnoses the disorder, only has staff trained in pediatrics.

"There's a lot of people who are suspected to have FASD," Koffman said. "But given the fact that they don't have the prior diagnosis, they don't get the benefit of going on the FASD docket."

In the past 15 years, more than 500 undiagnosed adults were referred for services to the province's FASD Justice Program, a spokesperson for Manitoba Justice said. The FASD Justice program predates the court and seeks out support services for offenders with the disorder.

None of those people could be diagnosed in Manitoba because the diagnostic clinic, which is funded by Manitoba Health through the Winnipeg Regional Health Authority, doesn't offer adult diagnoses — except for rare circumstances in which patients are referred before their 18th birthday but become adults while on the waiting list.

Dr. Ana Hanlon-Dearman, medical director of the clinic, which is run by the Winnipeg Regional Health Authority, said historically there's been little interest among Manitoba family physicians in working with the disorder, which is still a relatively new diagnosis in the health-care world.

But Hanlon-Dearman said she's hopeful a solution is on the horizon, since the clinic has been working with a group of partners — including Manitoba Justice, Health and Families — and a family physician to develop a proposal for a demonstration project for adult diagnosis.

Diagnosis by multidisciplinary team

Diagnosis of FASD — both in children and adults — is difficult.

There are few reliable biological markers doctors can use.

A few people with FASD show physical signs, such as a smooth ridge between the nose and upper lip. Some also have cognitive effects, which can include learning disabilities and challenges with comprehension. 

The scant biological markers doctors can use to identify FASD are unreliable, so doctors need confirmation of prenatal alcohol exposure from some other source, Hanlon-Dearman said. Sometimes that source is the patient's parents, but in cases where that's not possible, diagnosis means combing through social and health records, sometimes going back decades, searching for evidence.

In Manitoba, diagnosis is done by a multidisciplinary team. The clinic currently includes a psychologist, speech language pathologist, social worker, occupational therapist and geneticist, as well as Hanlon-Dearman, who is a developmental pediatrician.

The team to diagnose adults would include those roles as well, Hanlon-Dearman said, with a family physician in her place.

The proposal is to include followup support and education for the individual and the systems involved in Manitoba, once the diagnosis is done.

"There is positive collaboration among multiple organizations [and] services working together from Justice, Health and Families to develop a demonstration project," she said.

The initial focus of the project would be on diagnosing people age 18 to 25 who are already involved in the justice system.

The clinic has been working with a family physician since October to begin training her on the diagnosis process.

There's still no timeline or confirmed funding model for when that physician will be able to start diagnoses, but Hanlon-Dearman is hopeful.

"We're doing this with, really, no particular budget," she said. "We're doing this with a lot of goodwill, and we're doing this with a lot of gifted time from different systems."

Once the clinic can offer adult diagnosis for people in the justice system, Hanlon-Dearman hopes to expand to serve other adults, too.

"We are doing this, we are getting there, but you're catching us right at the beginning of it," she said. "I feel quite confident that we can do this."

So far, she said the clinic has had ample support from partners, including the FASD Justice Program and Manitoba Justice, in getting the project off the ground. She expects to have a proposal ready to submit in the near future.

"The diagnostic clinic developed out of a pediatric practice. As we developed, our age kind of extended and extended, but as a pediatrician, I'm not allowed to see adults," she said.

"Little kids grow up to be adolescents, and then grow up to be adults, so there needs to be kind of a process that's really more of a lifespan approach to FASD diagnosis. I really believe that this is important for a lot of reasons in this province."

Adult diagnosis a challenge across Canada

The Winnipeg-based clinic serves people across the province through the Manitoba FASD Network, which includes diagnostic coordinators in all five health regions.

A provincial spokesperson said in an email government is working on a proposal for a "whole-of-government approach" to adult diagnosis in the province.

"As that proposal is still being developed, it's too soon to share any details, including how a program would work or funding/cost details," she wrote.

A spokesperson for the Winnipeg Regional Health Authority said in an email the authority will consider any proposal it receives through its usual processes.

"We are aware of the work being done at the Manitoba FASD Centre and look forward to seeing the details of whatever they may propose," he wrote.

Across the country, the capacity to assess everyone who needs an FASD diagnosis simply doesn't exist, said Audrey McFarlane, executive director with the Canada Fetal Alcohol Spectrum Disorder Research Network.

The absence is more acute for adults, she said. A patchwork of approaches to diagnosis have developed across the country, often led by not-for-profits or evolving from developmental pediatric clinics.

"There's not a clear place for [adult diagnosis] within the health-care system," she said.

Manitoba was among the first provinces to develop diagnostic capacity and is considered a leader in diagnosing very young children and youth, McFarlane said.

Diagnosis the 'cornerstone' of services

Health Canada estimates about one per cent of Canadians have FASD, based on research from the 1990s. More recent research suggests it could be higher — more like four per cent, according to the Canada FASD Research Network.

The diagnosis can be found in all corners of society, McFarlane said. However, it's much more prevalent among people who are incarcerated. McFarlane said that could be for a variety of reasons, including a lack of support for young people with the diagnosis.

Research on FASD prevalence in Manitoba found the rate in Stony Mountain Institution is 10 times higher than the general population. A 2011 report from Correctional Service Canada found 10 per cent of participants had FASD, and a further 15 per cent met some of the diagnostic criteria but the diagnosis couldn't be confirmed.

McFarlane said diagnosis is a crucial starting point in society's approach to FASD.

"If you don't have diagnosis, then governments are never going to develop policy and services for people with FASD," she said.

"It really is the cornerstone, then, for determining what kind of supports people need and then services develop from there."