(en anglais) Alcohol warning labels to be mandatory in Australia and New Zealand

On July 17th, 2020 Food Ministers in Australia and New Zealand approved the health warning labels that are to be mandatory on alcohol containers. It is safest not to drink alcohol during pregnancy. These warning labels will remind consumers of this fact.

This decision comes after years of lobbying from health organizations, experts, and advocates. A new study commissioned by the United Kingdom’s NOFASD finds that 1 in 4 young adults don’t know the health risks of drinking alcohol while pregnant. Alcohol warning labels highlighting the dangers of alcohol consumption during pregnancy have the potential to raise public awareness of these health risks.

The accepted warning labels will be red, black, and white with the words Pregnancy Warning prominently displayed. Printing multi-coloured labels was a sticking point for many in the alcohol industry, as it adds an increased cost to producers. But a multi-coloured label is important to lobbyists because it improves the visibility of these labels. Manufacturers will have three years to implement these labels on all alcoholic beverages.

Alcohol warning labels are a low-cost approach to fetal alcohol spectrum disorder (FASD) prevention and health promotion. Research suggests they are most effective when used in combination with other prevention strategies to increase awareness of the risks of alcohol use during pregnancy.

Australia and New Zealand join the United States, France, Japan, and a number of other countries who have already mandated pregnancy warning labels on alcohol containers. We’re looking forward to seeing if Canada will incorporate alcohol warning labels into a comprehensive FASD prevention strategy in the near future.

(Source article)

(en anglais) Choline supplements in young children with fetal alcohol spectrum disorder have lasting cognitive benefits

NIAAA-funded scientists report that early life dietary choline supplements improve some of the cognitive and behavioral symptoms associated with fetal alcohol spectrum disorders (FASD) four years after treatment ended. The results of this study suggest that choline treatment during an important time window during early childhood can alter brain development in a way that produces lasting therapeutic behavioral effects for children with FASD. The findings are published in the Journal of Neurodevelopmental Disorders.

Previous research has shown that giving pregnant women choline supplements can improve FASD outcomes for their children after birth. However, this study shows long term beneficial effects of a post-birth nutritional intervention for children with FASD. This study provides key information about the timing of choline treatment necessary to achieve long-term neurodevelopmental benefits on FASD.

Choline is an essential nutrient that supports healthy development, particularly of the nervous system. Preclinical animal model studies provided a scientific basis for testing choline as a treatment for individuals with FASD. In animals, deficits in memory tasks due to prenatal alcohol exposure are tied to a region of the brain called the hippocampus; choline can also improve hippocampal function and associated memory and learning deficits.

The present study is a follow-up to a phase I, double blind, placebo-controlled clinical trial done by the same research group. For nine months, the researchers gave dietary supplements of either 500 mg choline or placebo to 60 children aged 2.5 to 5 years old who had been diagnosed with FASD. This trial showed that choline treatment was feasible and tolerable in children, and that side effects were minimal.

The current study complements and builds on these results, following up with 33 of the children from the clinical trial four years later. Importantly, the present report reveals a robust effect on cognition four years after the treatment ended, suggesting that development of the brain had effectively been altered by choline, leading to lasting effects. Children given choline supplements tended to have better non-verbal intelligence, visual-spatial skills, working and verbal memory, and behavioral symptoms than those who were given the placebo.

(Source article)

(en anglais) Issue Paper: Fetal Alcohol Spectrum Disorder and Adversity

Issue

Prenatal alcohol exposure (PAE) can cause a range of brain- and body-based difficulties, including a heightened sensitivity to stress. Many individuals with FASD also tend to face high levels of environmental adversity throughout their lives, such as experiences that are stressful, harmful, and/or traumatic. The combination of brain-based stress sensitivity along with chronic adverse experiences can create significant challenges for individuals with FASD and their families, warranting special consideration and support.

Background

Early life and sensitivity to stress:

  • Our brain has a specific system that influences how we experience and respond to stress
  • Fetal exposure to alcohol can change how this system develops
  • Experiences of adversity in early childhood can also influence how the brain responds to stress
  • Early interventions can improve some of the negative impacts of stress and adversity

Adverse childhood experiences and FASD:

  • Individuals with PAE and FASD experience high rates of adversity in childhood
  • Examples of common adverse experiences include neglect, loss, physical and sexual abuse, exposure to substance use and family violence, and disrupted living experiences
  • Early childhood experiences can impact development and long-term health and well-being

Susceptibility to adverse outcomes:

  • When PAE and adversity are combined, an individual’s vulnerability to stress increases
  • This combination can lead to problems such as less effective coping, difficulties with emotion-regulation, and mental health and physical health issues
  • Without effective supports, individuals with FASD are at risk of experiencing adversity throughout their lives

Implications for intervention

  • Stable and nurturing relationships and environments can minimize the harmful effects of PAE and early adversity
  • Using trauma-informed practices and approaches in service delivery can help to address some of the challenges faced by individuals with FASD
  • System-level strategies are needed to reduce the occurrence of PAE and early adversity

Take Home Message
PAE can lead to an increased sensitivity to stress, and people with FASD commonly experience adversity beginning early in life and extending into adulthood. The combination of these factors puts individuals with PAE and FASD at increased risk for negative outcomes. Acknowledging the intersection of PAE, stress, and adversity puts us in a better position to develop interventions that can improve outcomes.

(Source article)

For more information, including recommendations, please read the full issue paper here.

(en anglais) Life with COVID-19 from a Caregivers’ Perspective

Written by the CanFASD Family Advisory Committee

« We are finally confident that people will understand what we mean when we say life is unpredictable and sometimes feels like it is spiralling out of control. It took a pandemic to have others experience what our lives are like routinely.

At a recent CanFASD Family Advisory Committee meeting, we took the opportunity to check in on everyone to find out how the strategies being implemented by the provinces and territories to “flatten the COVID-19 curve” have affected our families and us. The results were not that surprising.

Normal stressors were accentuated. Some of our children’s not so positive coping strategies were exercised regularly. Those of us who are not only caregivers, but also service providers or involved in Non-Governmental Organizations (NGOs), were incredibly busy.

For this blog, we share the challenges caregivers of individuals with FASD face during a pandemic. These issues are from our experience, both personal and from individuals we support in the community. They may not be reflective of all caregivers.

In terms of the less than positive coping strategies, food management has become a significant issue. Grocery bills have increased even as shortages have occurred. It is unclear if this change is a result of emotional eating, food hoarding, lack of structure, or boredom, but the kids are eating us out of house and home.

Individuals with FASD can have extreme reactions to the pandemic ranging from not understanding social distancing and hygiene measures put in place, to being afraid to go outside and even feeling that there is “no point to do anything as we are all going to die anyway”. This perceived lack of safety has a significant impact on individuals and families as it increases general anxiety and tests already challenged coping strategies. It is not only the children who may be experiencing extreme reactions. We are aware that some caregivers have difficulty teaching and enforcing safety procedures, such as hand washing and physical distancing. »

(Read more…)

(en anglais) Your Guide to FASD Assessment in Manitoba

The Manitoba FASD Network recently released a new website to help guide people living in Manitoba through the FASD assessment process.

The Manitoba FASD Network was established in 2009. It provides diagnostic and short-term follow-up services to people living in Manitoba, with the goal of providing FASD assessment, support, and education closer to home.

The organization is structured with central FASD offices in Winnipeg, and FASD Diagnostic Coordinators located in five regions across Manitoba. The central offices provide leadership and training to the network, while the Diagnostic Coordinators interact directly with the community to support families through the assessment process and assist the local clinics in their region.

On their new website you can find:

  • An overview of the assessment and diagnositic process;
  • How to contact your Regional Diagnostic Coordinator;
  • Information about the referral process;
  • Local news and events;
  • Contact information;
  • And more!

Click here for more information.

(Source article)

(en anglais) Day 36 of 99 Days to FASDAY: With Support Students Can Succeed

« Day 36 of 99 day, the myth about plateau of learning. While research has suggested that skill levels for people with FASD vary, I believe Grade 4 (through my own experience with the maiden) is definitely when things began to “fall apart” at school for her.

After the shift from the primary grades of 1, 2 and 3, with FASD not recognized, and the teaching style not adapted sufficiently for her, it was a disaster in the making. The sad part is, despite all the challenges she had at school, she was always an eager learner. She always wanted to bring homework home – even if there was no homework assigned!

For more information check out: Disrupted School Placements and FASD

I have said it before, and I will say it again, as more is known about FASD, I sure hope the school systems get onboard and start providing the type of education our children deserve. Our communities are missing out on many of the gifts our children have to offer.

CANFASD PUT OUT A POSITION PAPER IN 2018:

Current Strategies and Educational Supports for Students with FASD

Despite educational supports being available in most school systems, current educational strategies are often outdated, too generalized, and lack the accessible information teachers need to prepare ideal IPPs for students with FASD.

Moreover, Millar and colleagues observed that children with FASD who received insufficient supports were at risk for a number of secondary adverse outcomes, including dropping out of school, involvement with the criminal justice system, mental health issues, and substance use problems.

Additionally, community support is generally very poor for individuals with FASD and their caregivers, with many parents lacking the knowledge, understanding, and resources to handle the developmental disabilities associated with FASD.

Despite these inadequate resources, most diagnoses, supports, and interventions come from within school systems, strengthening the importance of improving and revising educational supports to enhance learning outcomes for students with FASD. »

(Read more…)

(en anglais) New Webinar: Loss, Grief, and FASD

Register now for CanFASD’s newest webinar presentation on Friday July 10, 2020 at 1:00pm EDT. Dr. Dorothy Badry, CanFASD’s Child Welfare Research Lead, will be discussing loss, grief, and resilience in relation to FASD along with members from the CanFASD Family Advisory Committee and the FASD community.

Loss and grief seem to go hand in hand in relation to FASD and this experience deeply impacts the lives of children, youth, adults, families and support networks. Many children become involved in the child protection system early in their lives, which can result in involvement with the justice system in adolescence and adulthood. Mothers experience their own loss and grief regarding their child’s disability. Some mothers frequently lose the opportunity to parent their children, often due to active substance use.

Beyond diagnosis, FASD is a complex psychosocial/emotional experience that requires ongoing supports to navigate life on a daily basis. Individuals with FASD often experience mental health challenges, poverty and homelessness. Other losses for individuals living with FASD include being misunderstood, facing challenges in relationships, ever-present stigma and social exclusion.

FASD often goes unrecognized by many professionals and this contributes to ineffective support, unrealistic expectations, frustration, loss and grief, all of which contribute to higher levels of vulnerability. Individuals and families have cumulative experiences of loss, grief and hurt, particularly when they feel professionals do not understand their experience and the impact of FASD in daily life. Training on FASD and practicing FASD informed care is essential to minimize further marginalization and oppression of individuals and families. The COVID-19 Pandemic has resulted in a loss of supports for individuals living with FASD. This loss creates new and unexpected challenges that we will talk about from a personal, professional and parent perspective.

CanFASD is constantly aware of the challenges faced by individuals with FASD, their families and their support networks and continues to be amazed at the capacity for resilience and hope. In this webinar CanFASD will use contemporary theory to explore loss and grief as it relates to FASD, and will hear from the voice of an advocate and public speaker living with FASD, and the voices of parents from the CanFASD Family Advisory Committee.  Register now!

(Source article)

(en anglais) Day 21 of 99 Days to FASDAY: FASD Language Guide

« I am very excited about the information I will be sharing over the next 6 days of the 99 Days to FASDay countdown. Day 21 – 26 will focus on the words we use when talking about FASD, people with FASD and women who use alcohol during pregnancy.

I found these suggestions in a Language Guide on the Manitoba FASD Coalition website under a project called Looking After Each Other.

In May 2014, a diverse group of Manitobans came together to talk about the relationship between stigma and Fetal Alcohol Spectrum Disorder (FASD) and their shared passion to end it. They began to create a vision for a province where people with FASD and women who have used alcohol during pregnancy are fully accepted and their dignity is protected.

In order to achieve its purpose of promoting dignity the project has developed three pillars, each with a corresponding subcommittee. Each subcommittee is pursuing a variety of activities to promote dignity including creating mini-documentaries, applying for research grants and developing a guide that highlights dignity promoting language.

While this group is in the province of Manitoba, in Canada, I think their guide can be used around the world. Some of their suggestions may be controversial due to the deeply ingrained culture of shame and stigma that surrounds alcohol, pregnancy and people with disabilities or challenges. Others may not fit cultures in different countries. But overall, it is good to challenge long-held beliefs.

The group who devised the Guide included parents of children with FASD, women who used alcohol during pregnancy, community members from across Manitoba; including several First Nations communities, government representatives and service providers working with people who have FASD and their families. A great representation that I believe we should honour. Note: In 2018 I contacted the group because it did not say people with FASD were part of the committee, but they were! »

Linkto the guide: FASD Language Guide

(Read more…)

(en anglais) Day 16 of 99 Days to FASDAY: Confabulation

« Today’s NB tip is all about confabulation. I must admit I do not think I had ever heard the word confabulation before I adopted the maiden. I learned rather quickly though that she wasn’t lying – she was confabulating:

con·fab·u·la·tion
[k uhn-fab-y uh– ley-sh uhn]
NOUN
1. the act of confabulating; conversation; discussion.
2. Psychiatry. the replacement of a gap in a person’s memory by a falsification that he or she believes to be true.

According to Teresa Kellerman in an article on the Come Over To website:

« Making up stories and telling tall tales is a normal part of being a typical 4-5 year old. Scientific research done by Dr. Edward Riley shows that many kids with FASD have an arrested social development that stops at about the level of a 4 to 6 year old. Is it reasonable for us to expect them to develop the social and moral conscience of an adult, or even that which we would expect of a typical 8-, 10-,or 12-year-old (whatever chronological age we might be dealing with)? »

Even though our children’s ability to control the lying might be impaired, rather than excuse the behavior, we need to deal with it in an effective manner.

So next time your child or adult son or daughter tells a tale that seems too tall, try to think about the brain based difference and see the bigger picture. Make enquiries, ask questions, investigate. Help them recall an incident instead of confronting them.

One of the techniques a therapist suggested we use to help the maiden with her recall was to draw a cartoon like picture to find out what happened BEFORE the incident as well as AFTER, not just the actual incident. For instance, if there was an incident that happened during recess, we drew a picture of the incident. Then we worked backwards and forwards. This didn’t always help, but sometimes I was able to get the bigger picture. I also learned rather quickly to ask teachers for their perspective, before I made up my mind about an incident based on the report from the maiden. »

(Read more…)

(en anglais) National Accessibility Week and FASD

It’s National Accessibility Week in Canada!

Held annually during the first week of June, National Accessibility Week is an opportunity to celebrate the achievements of Canadians with disabilities and to recognize those individuals, communities, and workplaces that are actively working to remove barriers to accessibility and inclusion.

Everyone has the right to be included in society, through education, employment, and community activities. Some people need different resources and supports in order for them to achieve success.

Fetal alcohol spectrum disorder (FASD) is a lifelong disability impacting the brain and body of people exposed to alcohol in the womb. Each person with FASD has both strengths and challenges and will need special supports to help them succeed with many different parts of their daily lives.

Approximately 4% of Canadians, or more than 1.4 million people, have FASD. Each one of these individuals has the right to supports and services that make health care, education, employment, housing, community initiatives, and social connection accessible.

There are a number of people, organizations, and initiatives across Canada that are working to break down barriers to accessibility and inclusion for individuals with FASD. Here are some of the amazing stories that we’ve seen over the past year:

‘I can be myself’: Youth FASD support program expands in Yellowknife
Lois Anderson, a teenager from the Northwest Territories, explains the value of having an FASD specific program that gives her the supports needed to successfully transition into adulthood.

As demand explodes, Manitoba’s new FASD court expands to meet need
Canada’s criminal justice system isn’t set up to effectively support individuals with FASD to achieve success. A specialized court system in Manitoba is specifically designed to help individuals with FASD navigate the criminal justice system and access necessary supports.

People living with fetal alcohol spectrum disorder share their stories
An FASD specific conference held in Sudbury, Ontario, gives individuals with FASD a platform to share their stories. Valencia Poulton and RJ Formanek are among some of the attendees who shared their stories with the wider public to promote inclusion and reduce the stigma surrounding FASD.

(Read more…)