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Jacqueline Pei & Carly McMorris

Spreading Our Wings

Better mental health means a better life for kids with FASD

Robbie Seale’s youngest son — a teen with fetal alcohol spectrum disorder (FASD) — had been waiting years to see a psychiatrist when a dangerous episode forced an emergency trip to the hospital. They waited for hours in a padded room where he couldn't hurt himself, then were sent home with a doctor's appointment set for a few days later.

The doctor, recalls the mother of five, “took the inventory of what was happening with our son and what our education and skill levels are around FASD.”

Online resource helps families navigate health services
Alberta Health Services offers a new virtual toolkit designed to improve the experience of families seeking services for their children with neurodevelopmental differences (NDDs), including children with autism, cerebral palsy and FASD, as well as other conditions.
The Neurodevelopmental Disability (NDD) Navigator Toolkit is a free online resource that provides an introduction for individuals with NDDs, pathways to support, as well as family perspectives on the challenges of seeking support services.

“Then he said, ‘You are doing everything you can. Goodbye.’” Seale’s long wait to see a doctor was over but all she’d received was yet another reminder that the health care profession was woefully unprepared to help children like hers.

Fetal alcohol spectrum disorder impacts at least four per cent of Canadians and is more prevalent than autism, cerebral palsy and Down syndrome combined. (CanFASD.com)

Seale adopted four children who’d been exposed to alcohol before birth; three have FASD, a brain-based condition that packs a host of troubles including depression, anxiety, attention difficulties and an inability to handle stress.

And although about 90 per cent of people with FASD have at least one mental health issue, Seale’s struggle to get help is the unfortunate norm, says Jacqueline Pei. Pei is a psychologist, professor in the Faculty of Education and WCHRI researcher.

There are training gaps among health professionals and a prevailing stigma around the condition, she says. “We end up with a group of folks who almost become ineligible for service because they’re too complex.”

Changing that situation is the goal of a research project being co-led by Pei in Edmonton and her counterpart Carly McMorris in Calgary.

The mission includes identifying the barriers that prevent FASD kids from accessing mental health services. Then they’ll be working with front-line health professionals from all over Alberta to brainstorm strategies to mitigate these barriers.

“Kids with FASD are all very different,” says McMorris, a psychologist and member of the Alberta Children’s Hospital Research Institute (ACHRI). Her research focuses on improving the mental health of people with neurodevelopmental conditions, such as autism and FASD.

“Having one perspective is not always helpful when working with kiddos who have complex needs,” she says. “Multiple people with multiple perspectives tackling the same issue is what is needed.”

Pei, a neuropsychology expert who started her career working with young offenders, says the problem has long been a topic of conversation for her and McMorris.

Thanks to a team grant from WCHRI and ACHRI, they’ve got the momentum to do something about it, Pei says.

The grant allowed them to hire two research assistants to do a literature review. Pei says the document will be the conversational starting point for “a meeting of the minds” — a brainstorming session with a cross-section of Alberta psychologists, clinical social workers, caregivers and people with FASD.

The multi-day, in-person sessions will produce a draft of some practical treatment ideas that health-care providers can start using immediately.

“Getting everyone in one room is, I think, something that should be the standard,” McMorris says. "Jacquie and I can highlight what we know from the research; but we’re not feet on the ground, working with these individuals every day.”

The meeting's other goal is to draft an application for a large federal grant — hopefully one large enough to kickstart the significant, cross-Canada work needed to change the mental health system for FASD adolescents, says Pei.

Supporting the mental health of youth with FASD has the power to improve how they experience all of life’s ages and stages, from school and employment to social situations and relationships, Pei says.

“It’s time we get some evidence … and a concerted plan that reaches health-care providers right across the country.”

Jacqueline Pei is supported by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute. Carly McMorris is supported by the Alberta Children’s Hospital Foundation through the Alberta Children’s Hospital Research Institute.