Spencer van Vloten: It's time to reduce the stigma and increase support for people with FASD

Opinion: Fetal Alcohol Spectrum Disorder impacts more Canadians than autism, cerebral palsy, and Down syndrome combined, yet it is a strikingly neglected condition. It’s time to act to improve treatment and reduce stigma.

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International Fetal Alcohol Spectrum Disorder Awareness Day is this month (Sept. 9) — a fitting occasion to bring attention to one of Canada’s most ignored tragedies.

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What is more tragic than the suffering caused by a preventable condition?

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A country failing to prevent and treat it, and to reduce stigma surrounding it. Yet that describes fetal alcohol spectrum disorder (FASD) in Canada.

The disorder impacts more than 1.5 million Canadians — between four to five per cent of our population, and more than autism, cerebral palsy, and Down syndrome combined. People with it experience far more health problems than the general population — including heart defects, kidney abnormalities, and a weakened immune system — leading to longer and more frequent hospital visits.

People with the disorder face cognitive and behavioural challenges, and 90 per cent also struggle with their mental health, with rates of depression, anxiety, and suicide several times higher than the general population.

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This mix of factors creates major obstacles in education, employment, and daily functioning, contributing to greater involvement in the criminal justice system and, too often, a perception of being dangerous troublemakers.

These barriers quickly compound and exert a fatal impact — the average life expectancy for someone with the disorder is a disturbingly low 34 years.

Not only do people with it pay in pain, stress, and ultimately their lives, their friends and family also suffer. The annual socioeconomic cost of FASD in Canada is nearly $2 billion.

Despite the costs and preventability of the disorder, it is strikingly neglected by government and medical professionals.

Fewer than half of family physicians discuss the risks of alcohol use, drug use, or smoking during pregnancy with women of childbearing age. And messaging about how much alcohol is dangerous is often conflicting, leading to misconceptions among pregnant women.

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Meanwhile, funding and supports for people with the disorder are sorely lacking, lagging behind those for people with other complex needs, to the point where many with it are never connected to services and not given the chance to live happy, fulfilling lives.

How do we turn the tables on fetal alcohol spectrum disorder?

The answer is multi-layered, but prevention is paramount. Improving awareness about the detrimental effects of alcohol can reduce the risk of birth defects and complications.

Health care professionals must also be leaders in prevention, and those working with pregnant women should consistently and proactively speak with them and their partners about alcohol use, making it clear that there is no safe level during pregnancy.

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But focusing on prevention alone is insufficient — especially when vulnerability to FASD is greatest early on, when women may not be aware they are pregnant.

Increasing access to screening and diagnostic services would increase opportunities for earlier intervention. This requires investing in greater diagnostic capacity and establishing referral processes and criteria.

Following diagnosis, there must also be greater access to key workers, skills training and occupational therapy, counselling and respite for parents, and other support services. These must be flexible to account for the diversity among persons with thedisorder, but also culturally grounded to address the elevated prevalence of it among Indigenous peoples.

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More broadly, fetal alcohol spectrum disorder training should be mandatory in program curriculum for medicine, nursing, occupational therapy, corrections, law, education, and social work. Not only would this help make practices in these fields more aware of the disorder, the professionals within them could better recognize signs of it and thereby connect affected persons to diagnosis and support.

Finally, removing stigma is essential for creating environments where families can access the help they need without fear of judgment.

It is by working together — as families and communities — that we can improve outcomes for persons with the disorder, their families, and society as a whole.

Spencer van Vloten is a nationally published writer, community advocate, and editor of BCDisability.com. He is a recipient of the B.C. Medal of Good Citizenship, Vancouver Excellence Award, and was named the Rick Hansen Foundation Difference Maker of the Year. You can find more of his work at SpencerV.ca or follow him on Twitter at @SpencerVanCity

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