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)
Looking at employment successes of adults with FASD.
There are two parts to the study:
A short survey. This can be completed on the phone, online, or on paper.
A video. We will be taking short clips of people talking about their successes at work. This part of the study is optional.
Are you coming to the International Conference on FASD in Vancouver this March?
CanFASD and he U of A are hoping to find volunteers to complete the study at the conference. They welcome service providers, caregivers, and adults with FASD to visit Dr. Jacqueline Pei or Dr. Katy Flannigan at the CanFASD conference booth for more information. You can also contact Katy (email@example.com) any time if you have questions before the conference.
FASD Fact Sheet
The first published literature that linked prenatal alcohol use with birth defects was in France, in 1968, by Dr. Paul Lemoine. In 1973, researchers at the University of Washington published their findings regarding a group of children who shared uncommon physical features and developmental delay. These children all had mothers who had consumed alcohol in pregnancy. The term “Fetal Alcohol Syndrome” (FAS) was created to describe the patterns observed in these children.
Today, Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term that describes the range of effects that can occur in an individual who was prenatally exposed to alcohol, and includes FAS. These effects can include lifelong physical, mental, behavioural difficulties, and learning disabilities. Depending on the amount and the timing of alcohol exposure, a minority of infants exposed will also develop a characteristic pattern of facial features, and some will have a growth deficiency. However, those effects are relatively rare and have little impact on day-to-day function.
Decades ago, the facial features of FAS received a lot of attention in the press. The presence or absence of facial features depends on whether alcohol was consumed in a very narrow window of time during pregnancy. It does NOT reflect the degree of brain disorder. The vast majority of people with FASD are not visibly different; you cannot see FASD. Although in a very small percentage of people the face may look different, the important fact is that in all individuals with FASD, the function of the brain is permanently affected.
Alcohol exposure during pregnancy results in changes to the developing brain at neurochemical and structural levels. Often, these changes are not detected until a child reaches early or middle school-age when difficulties at school and at home become increasingly problematic. These challenges can include problems in social communication and attention, motor and sensory problems, memory, and difficulty learning from consequences. As an individual grows, they are also at increased risk for depression, anxiety and other mental health conditions.
Scientific evidence has conclusively shown that alcohol consumption during pregnancy can cause fetal harm. There is insufficient scientific evidence to define any threshold for safe low-level drinking during pregnancy or when planning to become pregnant. The life-long damage to the brain is the most common and serious result from prenatal exposure to alcohol and can occur at any time during a pregnancy. The safest choice for a woman who is pregnant or planning to become pregnant is not to drink alcohol.
A common misconception is that FASD is associated with social, ethnic or cultural background. However, the majority of Canadian women drink alcohol. In a 2004 Canadian Addictions survey, 76.8% of women over 15 years of age reported drinking alcohol within the previous 12-month period. Approximately one half of all pregnancies are unintended. The highest rates of unintended pregnancy occur in women aged 15 – 19 years of age, which is also a population at increased risk for binge drinking.
There are currently no confirmed statistics on the number of people in Canada who have FASD, yet, prenatal alcohol exposure is considered the most common known cause of developmental disability in the western world. Over the years, prevalence rates in the United States have been reported as 1-3 per 1000 live births for the specific diagnosis of FAS, but as high as 1% or even higher for the full spectrum. The latest research on prevalence, conducted in several countries, indicates that these rates are believed to be as high as 5 out of every 100 live births. The indirect and direct costs for supportive needs in health, mental health, social services, and education and negative costs through criminality and criminal justice are estimated to be $4B/year.
Unlike most other birth defects, the diagnosis of FASD is not straightforward. Medical signs are difficult to recognize in newborns, infants and young children. Diagnosis can be delayed or missed entirely, as most of the damage caused by alcohol use during pregnancy cannot be easily quantified until problems arise. Problems caused by prenatal alcohol exposure may not be noticed until children are in school or until the teenage years because this is when those affected by FASD often have significant difficulty meeting societal expectations. FASD is challenging to detect and the diagnostic process relies on an inter-disciplinary team approach. Diagnostic services are not widely available across Canada, especially in rural and remote areas. Many families are reluctant to seek a confirmed diagnosis due to the stigma of addiction.
No two people with FASD will have the same challenges due to the wide variation of alcohol effects on brain development. They are at increased risk for mental health issues, school difficulty, addictions, and difficulties maintaining employment. Some of the more commonly seen challenges include:
Communication – can be highly verbal, but lack comprehension skills both written
Neuromotor Defects – impaired balance and coordination
Sensory Deficits – pain, touch, heat, light
If the above are not appropriately understood and addressed, individuals with FASD are at increased risk for early school failure, involvement with the law, family disruption and homelessness.
Our understanding of FASD is in a period of rapid expansion and change. We are beginning to understand the extent of the global impact of this lifelong disability. Research, and the answers it may provide, is critical for moving this field forward, changing the way we view this brain based disability and lessening its impact on individuals, families and society.
Real Stories from People living with Fetal Alcohol Spectrum Disorders
This is the story of Melissa’s experience with alcohol use during pregnancy and her journey to find the best possible care for her son.
“I drank at the beginning of my pregnancy; before I found out I was pregnant. My doctor told me that it was okay to continue to drink wine during pregnancy. He said I could have a glass of wine at night with dinner. He said it might even help me relax and improve circulation. Not only did I think drinking wine during pregnancy was okay, but I thought that it could be healthy. He never asked me if I had a drinking problem, or how many drinks I have a day, or if I binge drink. There wasn’t any dialogue. I really wish that my doctor would have had more dialogue or asked me questions about drinking alcohol during pregnancy.
“When my son was born he looked perfect. He has amazing strengths. He’s brilliant and he’s an amazing musician. However, as he got older I realized that things just weren’t quite right. He doesn’t like how clothes feel. He wore the same outfit for almost a year. I finally found a pair of socks that he would wear. Then the company stopped making the sock. That wouldn’t be a big deal for most people, but it was a terrifying moment for me. We went through about 25 packages of socks before we found a new brand that he would wear.
“On his first day of kindergarten, the school called me because he had turned over all of the chairs that people weren’t sitting in, turned over items in the kitchen area in the classroom, and thrown his shoes at the teacher.
“Most kids will get mad when they have to end play dates or sleepovers. But instead of just getting mad, my son tried to jump out of the car the other day because he had to leave a sleepover.
“When I finally realized what was going on, it was a relief, and it was horrifying, and I felt guilty, and I felt ashamed. But mostly I felt relieved to know what was going on.
“If a pregnant woman said to me, ‘I drink a little bit here and there and I was told it was okay,’ I would tell her that she wouldn’t if she had to live just one day with the way that I feel about myself, knowing how my son has been affected by my choices.
“I am angry that I was given wrong information about drinking during pregnancy. I want to tell as many people as I can about it. You never know how much alcohol during pregnancy is too much, so why take that chance?”
CDC would like to give a special thanks to Melissa and the National Organization on Fetal Alcohol Syndrome (NOFAS) for sharing this story with us.
From the most basic point of view, a conversation is a face-to-face exchange of information, ideas and opinions between two or more people. It has a discrete beginning and end; and the content of the exchange generally focusses on a limited number of topics of interest to the conversing parties.
We find this definition of “conversation” rather limiting and one-dimensional.
For starters, conversations don’t depend on face-to-face contact. They take place through a dizzying variety of channels – telephone, text, social media, email, Internet, chat, Skype, FaceTime… The list is long, and it keeps growing longer!
Conversations span not only space but time!
As we explore and share the Prevention Conversation, keep clearly in mind:
Meaningful conversations unfold over time. They are not isolated events.
People use many different channels and technologies to converse. And most have a “preferred mode” for communicating.
The hallmarks of effective conversation
A conversation is reciprocal. It is not a one-way download of information or opinion where one person does all the talking and the other does all the listening. It is a process of sharing through which the participants create shared understandings.
A conversation is satisfying. It leaves the participants feeling heard, values, supported and understood. They also take something valuable from the conversation – an idea, an insight a meaningful piece of information. At its best, a conversation is encouraging, education and inspiring.
A conversation is active. The participants are engaged, animated by a genuine sense of curiosity. All participants ask questions, and they give honest answers.
A conversation is respectful. While one of the voices may be more authoritative, it does not wield power over the other. The participants dispense with jargon and diction that may create a power imbalance or get in the way of clear communication. Empathy pushes out any need to lecture, grandstand or prove a point.
Responsible Drinking Around the World – The IARD Digest
Once a month, the drinks industry-funded International Alliance for Responsible Drinking, which covers alcohol policies worldwide, looks at what’s going on in-market to promote a responsible role for alcohol in society.
EU – Estonian EU presidency to focus on alcohol policy
Lithuania – Government coalition creates harmful drinking prevention programme
New coalition government partners the Lithuanian Peasant & Greens Union Party (LVZS) and the Social Democratic Party of Lithuania (LSDP) have published a draft programme on alcohol regulation and harmful drinking prevention. Delfi reports that the new Government plans to reduce the availability of alcohol by establishing a state-owned beverage alcohol retail monopoly, increase the legal purchase age to 20 years old, and restrict both the number of retail outlets selling alcohol and the hours of sale for alcohol. The Government also intends to increase both the penalties for breaches of sales regulations and licensing laws as well as excise duties on alcohol. “The procedure for issuing licences for the sale of alcohol… will be tightened during the transition period” before the planned monopoly is established. The Government also intends to completely prohibit alcohol advertisements and increase enforcement efforts against unrecorded alcohol.
Japan – Authorities outline new tax rates for alcohol
Coalition partners the Liberal Democratic Party (LDP) and the Komeito (KM) party have reportedly agreed on an outline for draft legislation that would simplify and harmonise taxation rates on beer, wine, and sake. The Government’s bill would see beer, so-called quasi-beer, low-malt beers, and beer-based beverages be taxed at JPY54.25 (US$0.47) per 35cl by 2026, and wine and sake would both be taxed at JPY35 per 35cl by October 2023. The Brewers Association of Japan called the proposal a “step forward”, but contended that “the tax rate was still too high” for the prior category compared to other beverages. Independent brewers have asserted that the policy would make it easier to compete with larger brands.
France – Monthly consumption declines among youth
The French Monitoring Centre for Drugs & Drug Addiction (OFDT) has published a new report indicating that monthly consumption of beverage alcohol by 15-year-olds declined from 58% in 2006 to 42% in 2014, and that the average age for the first consumption of alcohol in the country is 15.2 years old. The OFDT found that the number of youths who use the internet daily increased from 23% in 2003 to 83% in 2015, a factor that OFDT director François Beck believes is key to “the later consumption of alcohol by youth,”. Beck also said that the “generation born between 2000 and 2005 … spends a lot more time connected to screens than the previous one”, leading to fewer opportunities to consume alcohol. She also noted other factors include public prevention policies and parental behaviour, as parents of adolescents born in 2003 and 2004 are consuming less alcohol and tobacco products than previous generations.
Argentina – Buenos Aires bans alcohol advertisements
The Buenos Aires Legislature has passed legislation that will prohibit beverage alcohol advertisements from appearing in outdoor public places, as well as “all forms of advertising, promotion, sponsorship, or funding of cultural, sporting, or educational activities with free access”. Clarín reports that the legislation exempts advertisements that bear no marketing information about the product beyond its brand name, and allocate 75% of the ad to health warning messages including “Excessive alcohol consumption is harmful to health”, “Do not drink alcohol during pregnancy”, “Excessive alcohol consumption causes heart disease”, and “Drinking alcohol excessively shortens your life”. Legislature 3rd VPRoy Cortina stated that progress “in the prevention of alcohol consumption requires setting precise limits on marketing that legitimises it as a social habit”.
Greece – Wine excise duty hike falls short of expectations, increases smuggling
A significant increase in the excise duties on beverage alcohol implemented by the Government of Greece earlier this year has only yielded EUR4m (US$4.2m) in tax revenue, compared to a projected EUR65m. The Government’s special consumption tax on alcohol products (EFKOP) was part of measures to increase revenues during a period of poor economic outlook, but alcohol producers and other stakeholders have asserted that it has instead created a surge in unrecorded wine production and smuggling. Greek Wine Federation (SEO) president George Skouras asserted that the practice of unrecorded producers paying legitimate vineyard owners cash in advance for their grapes is “commonplace”. Central Cooperative Union of Vine & Wine Products (KEOSOE) president Giannis Vogiatzis said that the increased excise rate “is a punishment for those who wish to conduct business legally”, estimating that while approximately 65% of wine sold in the past year was domestically-produced and traded through legal channels, only 35% was taxed accordingly.
Ireland – Senate pauses debate on national alcohol policy
The Government of Ireland has deferred a Senate debate on its controversial draft national beverage alcohol policy until after the festive period, in a bid to overcome internal divisions over the bill within coalition partner the Fine Gael party. Some Fine Gael Members of the Oireachtas (TDs) have expressed concern that provisions of the draft Public Health (Alcohol) Bill that would require store owners to display alcohol in an area that is separated structurally from the rest of the premises by a physical barrier, could be financially prohibitive to independent retailers, and have asserted they will oppose this section of the bill. Junior Health Minister Marcella Corcoran Kennedy stated she stood behind the bill and did not want “children to be exposed to alcohol as an ordinary commodity beside butter and cheese”, noting that her department has produced information showing that the segregation requirement in the bill could be met by inexpensive means including plastic screens.
Russia – Ministry of the Economy wants to regulate beer separately from other alcohol beverages
The Ministry of the Economy will shortly consider a proposal submitted by the Higher School of Economics (HSE) in Moscow and the Union of Russian Brewers that would regulate beer separately to other alcohol beverages. Kommersant reports that the proposal calls for new federal legislation to regulate the marketing and sale of beer. The move would withdraw legislation introduced in 2013 further restricting beer advertising and prohibiting sales for temporary retail structures such as kiosks, sports clubs, as well as on the internet. The document’s authors assert that these restrictions “led to the loss of tens of thousands of jobs out of thousands of companies, small businesses, and individual entrepreneurs, and a significant reduction in tax revenues to budgets of all [administrative] levels”. The authors also call for an extension to the current hours of sale for alcohol to be applied to beer. A Union of Alcohol Producers spokesperson criticised the proposal, stating that “all alcohol beverages containing ethyl alcohol should be governed by a common law and there should not be concessions for any category”. Federal beverage alcohol regulator Rosalkogolregulirovanie (PAP) declined to comment on the proposal.
Indonesia – Controversial prohibition bills stalled until 2017
United Development Party (PPP) Deputy Secretary General Ahmad Baidowi has announced that controversial draft legislation that would prohibit or further regulate the production, distribution, and consumption of beverage alcohol will not be completed by the end of 2016 as scheduled, as the PPP is still consulting with stakeholders including Muslim organisations Nadhlatul Ulama (NU) and Muhammadiyah with the intention of progressing the bill next year. The Jakarta Post reports that the Prosperous Justice Party (PKS) and the National Mandate Party (PAN) have also endorsed the bill, but that it is unlikely to pass by the end of the year even though it was a priority bill in the 2016 National Legislation Program (Prolegnas). Opposition has come from seven other factions that are against a total ban on alcohol and are instead pushing for increased regulation. The Indonesian Consumer Protection Foundation (YLKI) has asserted that total prohibition is unnecessary, and has suggested a compromise of a regulation requiring alcohol producers to list ingredients on their products so consumers “can make their own decisions about whether to buy something”
Spain – Ministry of Health tackles underage drinking
The Ministry of Health (MSSSI) has announced that it is drafting legislation intended to reduce underage drinking, which will be similar to existing legislation restricting the availability of tobacco products in the country. Responding to a recent Basque Nationalist Party parliamentary question on underage drinking rates and prevention efforts, Health Minister Dolors Monserrat informed the Congress of Deputies that work on the bill is underway and that the Government would be seeking a cross-party consensus on the issue. Several government officials have stated that underage drinking is indicative of a larger social issue, arguing that it should be dealt with as seriously as smoking. The MSSSI published a report earlier this year indicating that approximately 80% of 14- to 18-year-olds have consumed alcohol at least once, and that the national average age of first consumption for alcohol is 13.9 years old.
The Alexis Nakota Sioux Nation is an Aboriginal community in northwest central Alberta where innovative justice services are being delivered based on restorative justice concepts. In the last several years the issue of FASD has been raised by the Alexis Justice Committee, who determined that effective services were not being delivered for individuals affected by the disorder. As a result, a partnership was formed between the Justice Committee and the Northwest Central Alberta FASD Services Network (Network) to provide clinical services to adult offenders suspected of being affected by FASD. The Justice Committee refers clients for assessment, the results of which guide the court in providing FASD-informed services. The partnership’s goal is to improve outcomes for individuals in the Alexis justice system, enhance community capacity for FASD clinical services, decrease costs associated with ineffective justice services, increase access to adult FASD services, and promote community engagement in FASD intervention and prevention. Since the project’s inception, researchers from the University of Alberta have been invited to work alongside the Justice Committee, Network, and the community to study the impact of the partnership. Specifically, the study is looking at whether FASD-informed justice services lead to: 1) enhanced offender satisfaction, 2) improved criminal outcomes and social success for offenders, and 3) deeper understanding of FASD among the community and service providers.
Keywords: Fetal Alcohol Spectrum Disorder, assessment/diagnosis, justice services, community collaboration
On September 9, Albertans are encouraged to recognize and support Fetal Alcohol Spectrum Disorder (FASD) Awareness Day.
What do you do if you or someone you love needs help?
Drop in to your local FASD Service Network. They offer diagnosis, assessment, support and unique programs that meet local needs. For example, the South Alberta network supports people with FASD through the justice system and pregnant women at-risk for substance abuse. The Mackenzie network offers a mentorship program for youth who may have FASD. Other networks are providing ground breaking programs for prevention and support.
“The 12 FASD Service Networks are welcoming places that aim to prevent FASD and support those with the disorder. The Government of Alberta is committed to continuing its leading work in FASD research, supports and prevention.”
– Naresh Bhardwaj, Associate Minister of Persons with Disabilities
What is FASD?
In Canada, prenatal exposure to alcohol is a leading cause of preventable brain damage and birth defects. It’s unknown exactly how much alcohol causes FASD – that is why it is safest not to drink any alcohol in pregnancy. Children and adults with FASD may have a range of symptoms, including difficulty controlling behaviour and understanding consequences.
A unique, made in Alberta prevention strategy is being piloted across the province. The Prevention Conversation: A Shared Responsibility aims to educate professionals and community workers who interact with pregnant women to discuss healthy pregnancies.
“Alcohol and pregnancy don’t mix. If you drink alcohol and are sexually active, make sure you use effective contraception.”
– Hazel Mitchell, FASD Prevention Conversation Project Lead
What is happening in Alberta for FASD Day?
There are a number of events taking place across the province. The 12 Provincial Services Networks organize awareness events on an annual basis. Check out what is happening near you!