Calgary Herald: Why the most common developmental disability in Canada is misdiagnosed or missed — and the devastating results

FASD is associated with a bewildering number of symptoms. But as Vanessa Hrvatin writes, the biggest barrier to early detection and treatment may be social not biological. Photography by Leah Hennel for Postmedia.


Paul Thompson often told himself he’d never amount to anything.

He struggled at school. He could read and write, but staying focused on assignments overwhelmed him. And home offered little support: his mother suffered from addiction, so Thompson was raised by an aunt and uncle in the Fraser Valley in what he describes as an unhappy environment.

By 16, he decided to run away. Occasionally he roomed with friends or his sister. He got the odd job doing manual labour and sometimes managed to pick up a welfare cheque. But there were also times Thompson resorted to petty crime and was arrested. Mostly, he lived on the street.

Then he met Glenda and Pete Jansen. A Richmond, B.C., couple with a deep commitment to helping others — she is a special education assistant, he has worked as a pastor — they had been serving meals to the homeless from the back of their car for six months when Thompson lined up for a Sunday dinner. A friendship evolved, and the Jansens eventually took him into their home so he could get his life on track.

It was slow going. Weeks turned into months, months turned into a season. Thompson managed some work, but routines were difficult for him and he was easily frustrated. It wasn’t until Glenda attended a workshop on Fetal Alcohol Spectrum Disorder (FASD) that “a light kind of went on,” she says.

She set to work, and in October of 2012, the 46-year-old learned that he wasn’t stupid, or beyond hope, as he’d believed for so many years — he was diagnosed with a brain disorder.



More than a million Canadians share Thompson’s condition, caused by exposure to alcohol in the womb. There is no cure for FASD, but early intervention can offer critical strategies for symptoms ranging from mild speech and memory deficits to severe cognitive delays.

Without support, however, outcomes can be devastating: unemployment, homelessness, addiction, abuse. According to some estimates, up to a quarter of inmates in Canada may also be affected.

But while FASD has been well documented for more than 40 years, it remains among the most misdiagnosed developmental disorders, and is often missed altogether. The cost to individuals is obvious. Experts estimate there is a steep cost for taxpayers as well, about $1.8 billion a year as a result of both lost productivity and added strain on the health-care and justice systems.

Both FASD advocates and medical researchers are now trying to make sense of what’s been standing in the way of early detection and treatment — and whether emerging science might offer new solutions.

Dr. Ira Chasnoff, a Chicago pediatrician and a leader in FASD research, has seen first-hand how dramatic misdiagnosis of what is sometimes called the “invisible” disorder can be.

In a 2015 paper in the journal Pediatrics, he describes an assessment of more than 500 children referred to a mental health clinic by the Illinois Department of Children and Family Services. Most had been flagged for “behavioural problems,” with diagnoses including Attention-Deficit Hyperactivity Disorder, Post-traumatic Stress Disorder and Oppositional Defiant Disorder. But Chasnoff’s team found that 156 — nearly 30 per cent — actually had FASD, and of those children, 86.5 per cent had either been misdiagnosed or never diagnosed at all.

Chasnoff says one of the biggest challenges is that, except in cases where children are born with distinctive facial features — small eye openings, a thin upper lip, and no groove between the nose and lips, for example — most diagnoses depend on mothers to confirm prenatal exposure to alcohol.

But disclosure comes with risk. Mothers may fear they will lose their children to social services; across North America, more than 15 per cent of kids in child welfare are suspected of having FASD. Or they may simply fear judgment, rather than sympathy or a willingness to understand, when they talk about drinking during pregnancy.

Bernadette Fuhrmann says she was deeply stigmatized when she gave talks in her community about drinking while carrying her son — even though she became pregnant in 1976, before the harm to a fetus associated with alcohol were widely promoted. “You don’t deserve to have babies,” she was told.

Diagnosing FASD is also difficult because the symptoms are fiendishly varied. No two cases are exactly alike. And as in Chasnoff’s study, FASD can often present like other disorders.

Canada’s current diagnostic guidelines for FASD include assessments of 10 different brain domains — those responsible for motor skills, cognition, memory, impulsivity control and hyperactivity among them. Tested by physicians and therapists over a number of days, three domains must be considered impaired for a formal “FASD” diagnosis.

But what if alcohol exposure impacts two, rather than three, brain domains? Or a child suffers in multiple domains, but is just above the cut-off point for what diagnosticians consider meaningfully impaired?

“You need to bring in that clinical expertise,” says Dr. Gail Andrew, who leads the FASD diagnostic team at the Glenrose Rehabilitation Hospital in Edmonton. “If I see a kid who is impaired slightly, not significantly, but in five brain regions, I might still give the diagnosis.”

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