FASD: How far we’ve come
This week UBC is hosting the world’s largest FASD research conference. The 7th International Conference on Fetal Alcohol Spectrum Disorder: Research, Results, and Relevance will bring together 200 presenters and 700 delegates for a three-day, multidisciplinary conference. Considering that FASD first showed up in academic literature in the 1970’s, a conference of this size and calibre is a big accomplishment.
Fetal Alcohol Spectrum Disorder (FASD) is a term that most people have heard in passing, but few understand its complexities. You might know that FASD comes from pre-natal alcohol exposure and that it can affect behaviour, but that’s likely where your interest ends.
Why should you be interested in a rare disorder that only affects a select group of people? Because that’s not true. FASD can affect all families, regardless of race, religion, or level of education or wealth – wherever there is a chance of pre-natal alcohol exposure, there is a chance of FASD. It is the most common cause of developmental disability in Canada and has life-long impacts on those diagnosed. It can also place a substantial cost on society, including health care and corrections costs. We know all of this now because of the improvements in FASD research.
The accepted definition of FASD is “a diagnostic term that reflects significant impairment due to prenatal alcohol exposure.” The effects of FASD are extremely varied, but can be physical, mental or behavioural. Common effects include difficulties with social communication, difficulties learning from consequences, and motor and sensory problems. Approximately 90 per cent of people with FASD experience other mental health difficulties.
Improved FASD research means improved lives, and since my time starting in this field, there have been inspiring improvements.
When I became involved in learning about FASD in 1994, there were very few people talking about this disorder and how to prevent it. It was difficult to find articles written on the topic in scientific journals and equally as difficult to get any university interested in community work being done in this field. But last year, in 2016, there were over 400 scientific articles published in North America on FASD.
Again, in 1994, you would be hard pressed to get a diagnosis of FASD in Canada. Rarely could physicians make the diagnosis. And rightly so, because it was not until after continued research that we learned the best method for diagnosis was a multidisciplinary team approach. Today, however, there are around 60 multidisciplinary diagnostic teams in Canada.
Watching FASD research grow for the past twenty years, I’ve seen some of the most cutting-edge research taking place right here in Canada. Canada is a leader in FASD research and has made significant contributions to the international body of scientific knowledge. CanFASD has been at the forefront of this FASD research as a collaborative, interdisciplinary research network with researchers and partners across the nation.
In Canada, we’ve pioneered research that has provided important information to governments about how to effectively develop policy and programs for individuals with FASD, and prevention efforts. Many provinces in Canada have a provincial or territorial plan to address FASD that is informed by research done here.
The new FASD Diagnostic Guidelines, developed by CanFASD in 2015, are an important progressive contribution to international research. The guidelines aim to help standardize the diagnostic process and improve how we diagnose the disorder. The Canadian guidelines are being adopted in countries around the world, like Australia and New Zealand.
Dr. Nancy Poole and her team at the BC Women’s Centre of Excellence developed a four-ponged approach to FASD prevention considerations. This has significantly improved how we address prevention at a national, provincial and community level.
CanFASD has also developed the first countrywide database for collecting information about individuals with FASD at the time of diagnosis or assessment. This will provide important information about individuals with FASD for effective service delivery and future refinements to the diagnostic process.
FASD is a young and exciting field, so there is still a lot to discover. The research can make a big difference in the lives of those with FASD and their support systems.
We have come extremely far from when I first started in this field, but there are still important areas of research that need to be pursued. I could make a long list of areas that need more research: FASD across the lifespan, FASD and aging, needs of caregivers, school and community interventions, sexuality and gender issues, identifying common physical ailments, relationship support, cultural differences and new immigrants, but if the improvements in research over the past twenty years are any indication, we’ll get to all of these areas.
The 7th International Conference on FASD is a huge accomplishment. It shows that researchers from Australia to the Netherlands, from Texas to Spain, from Vancouver to New Brunswick, are learning and sharing about FASD. Less than fifty years after we first began talking about FASD, hundreds of experts spend their academic lives specializing in this area. That is progress.
Wherever there is a chance of pre-natal exposure to alcohol, there is a chance of FASD. FASD is society’s responsibility. As part of the research community, we are proud to contribute to all areas of FASD research – prevention, diagnosis, and treatment. We hope that you’ll look into the research as it becomes more and more accessible, and do your part too.
Executive Director, Canada’s FASD Research Network (CanFASD)
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