Fetal alcohol spectrum disorder amid COVID-19: Fewer services, potential boost in rates

Fetal alcohol spectrum disorder (FASD) is the leading developmental disability in Canada. Despite its preventable nature, there is concern among FASD researchers about a potential increase in FASD prevalence rates as a result of COVID-19, in addition to the impact the pandemic is having on the community.

FASD is a lifelong disability affecting people who were exposed to alcohol prenatally. In Canada, more people have FASD than autism spectrum disorder, cerebral palsy and Down syndrome combined.

Current rates are conservatively estimated to be approximately four per cent in North America. However, FASD is very challenging to diagnose, and many experts believe that its prevalence is actually much higher.

COVID-19 compounds challenges in this community

Anecdotally, we know that individuals with FASD and their families are facing increased challenges as a result of this pandemic. Caregivers are concerned about a lack of supports, disruption in daily routine and mental health challenges.

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Canadians with disabilities have drawn attention to their exclusion from COVID-19 messaging, as well to program cancellations and experiences of social isolation.

While these disruptions can have a negative impact on all individuals, they can have greater consequences for individuals with FASD and their families. People with FASD thrive with consistency and routine, but the pandemic has caused massive changes to our daily lives.

There is also concern about the future impact on mental health. While this body of evidence is still unfolding, parents reported changes in their children’s emotional state in a recent preprint manuscript (a preliminary paper that has yet to be formally reviewed), including difficulty concentrating, boredom, irritability, restlessness and nervousness. Experiences of parenting stress are also higher during COVID-19 among families reporting these emotional changes in their children.

These findings are concerning, especially for families of individuals with FASD who report higher levels of parenting stress compared to families of typically developing children and even those of children with other disabilities.

Silhouette of a fetus and umbilical cord in a circle.
Increased alcohol consumption during the pandemic may increase rates of FASD. (Pixabay)

Little research has been conducted to date on the impact of COVID-19 on individuals with disabilities. However, we cannot ignore the complexities of FASD when talking about the impact COVID-19 has had in Canada, especially in terms of feelings of increased social isolation and the reported lack of services and unmet needs facing individuals and families during this time.

Alcohol consumption is on the rise

In addition to the challenges faced by individuals and their families living with FASD, the COVID-19 pandemic has also drawn attention to concerns about FASD prevention.

Recent global data have suggested that online alcohol sales for beer, wine and spirits have risen by a staggering 291 per cent during the pandemic, although that figure does not account for any decrease in in-person alcohol sales. The Canadian Centre on Substance Use and Addiction revealed that as many as 20 per cent of Canadians have increased their alcohol use during COVID-19, and women report drinking, on average, more drinks per day than recommended in Canada’s Low Risk Alcohol Drinking Guidelines.

Common reasons for the increase in alcohol consumption included a lack of a regular schedule, boredom, stress and loneliness.

There is currently no data to quantify if there has been an increase in alcohol use during pregnancy. However, the rise in general alcohol consumption raises concerns about the potential increase in alcohol-exposed pregnancies.

A pregnant woman sitting on a sofa holds up her hand to decline a glass of wine.
Increased alcohol consumption during the pandemic could potentially affect rates of FASD. (Shutterstock)

Alcohol can impact fetal development at any stage of pregnancy. There is no known safe amount, safe time or safe type of alcohol, but women often don’t know they’re pregnant until several weeks along and approximately half of all pregnancies are unplanned.

Experts recommend that individuals and couples go alcohol-free if they are pregnant, trying to get pregnant or having unprotected sex, which increases the risk for an unplanned pregnancy. Individuals and couples who wish to continue drinking should use reliable forms of contraception or go alcohol-free until they know they are not pregnant.

Awareness and understanding are key

Reducing the number of alcohol-exposed pregnancies is an important step forward in helping to reduce the prevalence of FASD. However, encouraging individuals and couples to go alcohol-free is only one piece of the broader FASD puzzle. The realities of the pandemic have also highlighted the lack of supports and services available for people with FASD and their families.

Addressing FASD in Canada is complex. Supportive policies, effective support and accessible services are all important pieces in a more comprehensive FASD plan, but they are not enough. In order to effectively address this national issue, we need all Canadians engaged and united with awareness and understanding.

A greater public awareness and understanding brings FASD into the spotlight. During FASD Awareness Month, I encourage Canadians to learn more about FASD, alcohol and pregnancy. Addressing and preventing FASD in Canada is all of our responsibility.

Retrieved from: https://theconversation.com/fetal-alcohol-spectrum-disorder-amid-covid-19-fewer-services-potential-boost-in-rates-145593

CJ Lutke: A Journey to Healing

“Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: “Who has earned the right to hear my story?” If we have one or two people in our lives who can sit with us and hold space for our shame stories, and love us for our strengths and struggles, we are incredibly lucky. If we have a friend, or small group of friends, or family who embraces our imperfections, and power, and fills us with a sense of belonging, we are incredibly lucky.”  – Brené Brown

If you are an adult with FASD, you are all too familiar with the shame and blame that tears people like us down.  We say and do the wrong thing and at the wrong time.  We make mistakes – lots of them.  The systems and the media – not to mention most people – see us negatively.  It is easy for others to judge what they do not know from personal experience or when they only have some – and often none –  of the information they need, especially when they are so removed from our situations – and that of our birth mothers.

Recently, I have been thinking a lot about the shaming of women who drank in pregnancy and gave birth to children who have FASD.  Much the same way as shaming and blaming affects those of us who have FASD ourselves.  It’s easy to do or think almost anything when you de-humanize a person.  One of the great tragedies is that the anger we feel is often not even our own – it is the anger we have been told or taught.

Sometimes, we are part of the problem that our birth mothers face because we are hurting; we are angry and so we blame them.

So, this blog is an open letter about my journey to healing and compassion for my birth mother; things, that as an adult,  I would have talked to my birth mother about if I had gotten to know her;  things other birth mothers I know taught me I could have the courage to discuss.

Click here to read CJ’s full blog post!

Retrieved from: https://preventionconversation.org/2020/09/16/cj-lutke-a-journey-to-healing/

Upcoming FASD Training with Donna Debolt

FASD Training

Session #1 – Oct 20 & 22, 2020

Zoom!  9am to noon both days

There is strong evidence and consensus among families and professionals that individuals affected by prenatal alcohol exposure have unique needs at each stage of development.  Case Managers and caregivers of affected individuals need relevant and effective service to be able to sustain the energy and skill set needed to “hang in there” with these challenging situations. 

Children, adolescents and adults with FASD have complex medical, psychological and social needs. They are difficult to provide stability for and existing resources are not often user friendly for these families.  These sessions will provide a framework for considering these issues.

Register online at http://www.fasdtraining.com/session-1-oct.-20—22–2020-.html

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Session #2 – October 27 & 29, 2020

Zoom!  9am to noon

Many outcomes for individuals with FASD have been negatively affected by the lack of understanding of their complex neurodevelopmental disorder.

This is an advanced workshop for participants who have had previous training in Fetal Alcohol Spectrum Disorder.  Participants will have learned in previous training how to both recognize and understand the complicated issues that surround FASD.  This session will give the participants an opportunity to learn how to plan for their care and to recognize the impacts that the developmental trajectory of FASD has on case planning.

Register online at http://www.fasdtraining.com/session-2-oct.-27—29–2020.html

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As a social worker in private practice, Donna challenges communities through training and improved case management to develop and implement prevention, intervention and management strategies to successfully support individuals and families who are dealing with alcohol-related disabilities. She provides clinical support to children’s aid societies, mental health organizations and other across Canada. Donna is working with Alberta Human Services on an innovative program targeting practice standards and expertise in Child Welfare to improve outcomes for individuals suspected as having FASD.

What FASD is from a research perspective

Fetal alcohol spectrum disorder (FASD) means a lot of different things to a lot of different people. You’ve heard what FASD is from both individual and caregiver perspectives. Now we’d like to share what FASD is from a research perspective. 

The definition of FASD

Historically, FASD was hard to define because researchers and clinicians were learning new information about this disorder every day. In 2019, researchers published a common definition of FASD to use in the Canadian context.

Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD is unique and has areas of both strengths and challenges.

This definition helps us understand what FASD is. But it can be a little complicated to understand all at once. So, let’s break this down.

FASD is a diagnosis

FASD is a diagnostic term. It is both an etiologic diagnosis, meaning it identifies the cause, and a functional diagnosis, meaning it identifies the consequences. In this case, FASD refers to the wide range of impacts that can happen to people who were exposed to alcohol during fetal development. Diagnoses like fetal alcohol syndrome (FAS) fall under the realm of FASD.

In 2015, the Canadian guideline for diagnosing FASD was updated. People going through the assessment and diagnostic process now fall into one of four categories: (1) FASD with sentinel facial features(2) FASD without sentinel facial features(3) at risk for neurodevelopmental disorder and FASD associated with prenatal alcohol exposure; and (4) no diagnosis

FASD is a disability

Disability” itself is very challenging to define because it is such a complex and broad topic. A disability can be permanent, temporary, or happen periodically. People can be born with a disability or they can happen at some point in a person’s life. Some disabilities can improve, while others can worsen or remain the same. Disabilities can range from very mild to very severe. They can cause disease, illness, injury, or substance use challenges, but can also be the result of those factors.

According to the Government of Canada, from a biomedical approach, “a disability is a medical or health problem that prevents or reduces someone’s ability to participate fully in society.” From a social standpoint, a disability is “natural part of society, where attitudes, stigma and prejudices present barriers to people with disabilities, and prevent or hinder their participation in mainstream society.”

The most widely accepted definition of what a disability is comes from the World Health Organization (WHO):

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.

FASD is a lifelong disability. People with FASD experience impairments, activity limitations, and participation restrictions. There is no cure for FASD, but early and effective interventions and treatments can help people with FASD succeed.   

FASD is a spectrum disorder

Each person with FASD is unique and will have different strengths and challenges. There are a broad range of impacts that can occur because of prenatal exposure to alcohol. These impacts occur on a spectrum, so the severity and type of impacts are different for each individual. 

Commonly, people with FASD experience challenges with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills. People with FASD are also known to be friendly, likeable, helpful, generous, outgoing, hardworking, non-judgemental, and creative.

FASD is Canada’s leading developmental disability

In Canada, it is estimated that 4% of people have FASD. That’s more than the number of people with autism spectrum disorder, cerebral palsy, and Down syndrome combined, making FASD the leading developmental disability in North America. What’s more, the prevalence rates are much higher in certain populations, such as children in care and individuals involved in the justice system.

A public definition of FASD

Hopefully this breakdown helps to give you a better understanding of fetal alcohol spectrum disorder (FASD). To simplify things, researchers, caregivers, and FASD experts worked together to create a shorter, more accessible definition of FASD. This is a great definition to use when you want to explain what FASD is to your friends or family members.

FASD lifelong disability that affects the brain and body of people who were 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.

New Webinar: Refreshing our Conversations about Alcohol

Register now for our webinar, Refreshing our Conversations About Alcohol as a Key Component for FASD Prevention. This 60-minute webinar with Dr. Nancy Poole and Lindsay Wolfson will be held on September 25, 2020, at 11:30 am ET.

Reaching women in childbearing years and their support networks through respectful conversations about alcohol is key to FASD prevention. In Canada, we need to continue to grow our responses to substance use as binge drinking by women, the use of prescription pain medication, and emerging forms of cannabis and/or tobacco routes of administration. New research about the health effects of these substances for women, and ongoing advice from people with lived/living experience, prompt health and social care providers to continuously update their approaches to discussing alcohol and other substance use.

This webinar will build upon work by the Centre of Excellence for Women’s Health and the Canada FASD Research Network on trauma- and gender-informed brief intervention/support and will look closely at how we are integrating wise practice related to: stigma reduction, cultural safety, equity-informed approaches and combined responses on alcohol, tobacco, cannabis and opioids.

Key Takeaways:

  • Identify existing and promising practices for discussing and providing information on alcohol, and screening for alcohol problems and making referrals to treatment (where necessary), in collaboration with women in the preconception and perinatal periods;
  • Recognize opportunities to apply gender-, equity- and trauma-informed approaches to discussing and providing support related to alcohol and other substance use; and,
  • Bring attention to the importance of continuing to discuss alcohol and help women prevent FASD, even as our attention is drawn to emerging cannabis, opioids and tobacco strategies.

Nancy Poole, PhD, is the Director of the Centre of Excellence for Women’s Health a virtual NGO research centre hosted by BC Women’s Hospital + Health Centre. She is also the Prevention Lead for the CanFASD Research Network, guiding a national network of researchers, service providers, policy analysts and community-based advocates working on FASD prevention. Nancy is currently collaborating on research and knowledge translation projects in Canada and internationally, that are related to alcohol, other substance use, trauma-informed approaches and Indigenous wellness.

Lindsay Wolfson, MPH, is a Researcher at the Canada FASD Research Network and Manager at the Centre of Excellence for Women’s Health. She holds a Master of Public Health, Social Inequities and Health, from Simon Fraser University. Lindsay is responsible for research and collaboration on projects relating to Indigenous health and wellness, Fetal Alcohol Spectrum Disorder prevention, and the integration of gender, trauma, culture, and equity-informed approaches into policy, research, and practice.