Find answers to common questions relating to prevention and diagnosis, misconceptions and FASD over the lifespan.
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 whole-body disorder and 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.
Impact of prenatal alcohol exposure may include:
Getting an early diagnosis followed by targeted interventions are key to improving outcomes for people with FASD. The Canadian Diagnostic Guidelines for FASD were revised in 2016. In Canada, we no longer use terms like Fetal Alcohol Syndrome, Alcohol Related Neurodevelopmental Disorder and Fetal Alcohol Effects.
There are now only two categories of diagnoses available in Canada:
There is also a new “at risk” category for people who have impairments in some of the ten brain domains characteristic of FASD, but not enough domains to confirm a diagnosis.
The majority of people diagnosed with FASD have “FASD without Sentinel Facial Features”. Only an estimated 10% of people with FASD have “FASD with Sentinel Facial Features”. These facial features are:
When these three sentinel facial features occur together, it is very predictive of prenatal alcohol exposure. If a person being assessed for FASD does not have all three sentinel facial features, the diagnostic team must confirm prenatal alcohol exposure to make a diagnosis (Cook et al., 2016). It is important to note that presence of the three sentinel facial features is NOT related to the severity of impacts to the brains and bodies of people with FASD.
FASD is a spectrum and each person with FASD is unique with areas of strength and challenge. The vast majority of individuals with FASD do not have easily recognizable physical characteristics. A small percentage (<10%) of people with FASD will have “sentinel facial features” depending on the timing of prenatal alcohol exposure, but for the vast majority, FASD is an invisible disability. Common strengths include friendliness, caring, desire to help, being gifted with animals, and the ability to start each day fresh. Common challenges include issues with attention, memory, and learning. People with FASD often have sensory issues and difficulty understanding social cues. Research indicates that FASD is associated with over 400 co-morbid medical conditions , and the majority of individuals with FASD will experience mental health issues (Popova, 2016).
There is no cure for FASD as the effects resulting from prenatal alcohol exposure are permanent. Research is demonstrating many ways to improve outcomes for individuals with FASD. The best predictors of improved outcomes are early diagnosis; early intervention with evidence-based strategies; and a stable, loving home environment. The majority of people with FASD will require support in certain areas across the lifespan. People with FASD can make valuable contributions to society, and with appropriate supports and services, can live fulfilling lives.
It is estimated that 4% of the Canadian population have FASD (CanFASD, 2018). Many people with FASD are undiagnosed or misdiagnosed due to a lack of understanding and awareness about FASD, a lack of diagnostic services, and stigma associated with acknowledging alcohol consumption during the pregnancy (Popova et al., 2018).
Prevalence of FASD is higher in certain populations such as among children / youth in the child welfare system; students in special education programs; and youth / adults involved with Canada’s justice system. (Popova et al, 2018)
A small percentage (less than 10%) of people with FASD have the three “sentinel” facial features associated with prenatal alcohol exposure.
These facial features (short palpebral fissures, thin upper lip, and a smooth philtrum) only occur if the fetus is exposed to alcohol during a very small window of time in early pregnancy when the facial features are forming. For the vast majority of people with FASD, there are no easily recognizable physical characteristics.
Having sentinel facial features does not mean an individual is more severely impacted by prenatal alcohol exposure than someone without the facial features.
The majority of individuals with FASD have an IQ within the “normal” range. However, IQ is not necessarily a good indicator of how well an individual can function in their daily life.
The majority of individuals with FASD have impairments with “adaptive functioning”, including challenges with memory, cognition, planning / organization, and learning from past consequences.
IQ is often used to determine if a person is eligible for certain services and government programs. As a result, many people with FASD struggle to find or qualify for the supports they need (University of Alberta, 2018).
People with FASD often have to work much harder than others to complete tasks of daily life, due to their frequent challenges related to brain impairments. Sometimes it looks like they “won’t” do something when actually they “can’t”, at least not without appropriate accommodations or supports.
It may sometimes seem that someone with FASD is lying, but likely this is “confabulation”, mixing together facts with things that may not have happened but the individual believes are true due to challenges with memory. Some people with FASD may make up a story to cover up for forgetting actual events or if they don’t know the answer to a question.
It is important to remember this is caused by the brain impairments and not intended to be deceitful.
FASD is a lifelong, whole-body, physical disorder.
However, early diagnosis coupled with individualized support across the lifespan and a stable home environment can improve outcomes for people with FASD.
Individuals with FASD have many strengths and can learn to capitalize on their unique abilities to compensate for many of their challenges.
FASD is an issue for any community in which alcohol is consumed.
In Canada, it is estimated that 50% of pregnancies are unplanned: a fetus may be exposed to alcohol even before a pregnancy has been confirmed. In addition, health care providers are not consistently sharing correct information with patients about the risks of alcohol consumption in pregnancy.
Considering these statistics, it becomes clear that many babies will be exposed to alcohol in pregnancy regardless of the level of education, age, ethnicity, or cultural background (Ialomiteanu et al., 2016; CanFASD, 2018).
To further demonstrate this within a Canadian context, in 2018 CAMH conducted a research study of thousands of schoolchildren in the Greater Toronto area and found significant prevalence of FASD throughout society regardless of ethnicity, age or socioeconomic status of parents. (Popova et al, 2019)
Challenging behaviour in people with FASD is generally a sign that they are experiencing unmet needs, and they need the adults in their circle to help them.
These needs may be physical (e.g. pain), emotional (e.g. anxiety), biological (e.g. tired) or social (e.g. excluded). They may be experiencing overwhelm, anxiety or sensory overload.
The effects of prenatal alcohol exposure on the individual’s nervous system may predispose them to being very sensitive to changes to routine. Parents are experts on their children, and usually have the best understanding of how to calm and support their child.
They tend to be extremely good, strong and intuitive parents, yet often experience shame and grief when their parenting is blamed for their child’s challenging behaviours by those who do not understand FASD.
If a parent / caregiver has concerns that their child may have FASD, it is important to discuss them with their health provider, especially if there was known alcohol exposure during pregnancy.
Early diagnosis followed by evidence-based interventions and strategies across the lifespan can improve outcomes for people with FASD. Some early signs that a child may have FASD include impulsivity, challenges with learning and memory, sensory sensitivities, developmental delays and challenging behaviours.
These can be characteristics of other disorders as well, which is why assessment by a multidisciplinary team is required to confirm a diagnosis of FASD.
Some caregivers and service providers worry that an FASD diagnosis will be a stigmatizing label for their child. In contrast, experts agree that receiving an FASD diagnsosis, if warranted, is actually the first step in improving outcomes across the individual’s lifespan.
Some of the reasons for this include:
1. FASD assessment by a multidisciplinary team uncovers the individual’s strengths and areas of challenge. This information can be used to create customized Intervention strategies that capitalize on strengths and support / accommodate areas of challenge.
2. A diagnosis is often required to access services, supports (such as in the education system) and government benefits.
3. Many people with FASD share that their diagnosis helped them understand and accept why some areas of their life were more challenging for them as compared with their peers. Many express relief post diagnosis.
4. Understanding how FASD can impact daily functioning allows individuals and their support networks to create realistic expectations and plans for the present and the future.
5. Parents / caregivers will be able to access services, such as FASD Workers, and supports geared to raising children with FASD.
6. Medical and mental health professionals will be better equipped to address issues experienced by their patients with FASD.
Availability and access to FASD diagnostic clinics varies by region, and unfortunately waitlists are common. Therefore, if you suspect that you or your loved one may have FASD, speak to your physician as soon as possible and request a referral to your nearest FASD Assessment / Diagnostic Clinic. Some clinics may require that you submit your own assessments (e.g. psychological, OT, Speech and Language) before visiting the clinic: other multidisciplinary clinics will have all of these specialists on their team and available to do these pieces of the assessment process.
Please note: FASD assessment is not just for children! It is never too late to get an FASD diagnosis and many clinics see adults. To find diagnostic services near you, please consult the list of diagnostic clinics. For assessment of children and youth, you may also contact your local FASD Worker/Coordinator for help.
The reasons why women and gender diverse people drink alcohol during pregnancy are complex and FASD prevention initiatives require much more than simply advising against alcohol use in pregnancy. Canadian experts in FASD prevention have identified four approaches to FASD prevention that link to overall alcohol strategies:
1. Awareness campaigns, public policies and health promotion activities focused on the risks associated with alcohol use in pregnancy prevention.
2. All people of childbearing age must have access and opportunities for safe discussions with their health care providers about reproductive health, contraception, alcohol use and pregnancy.
3. Women and gender diverse people who are or may become pregnant require culturally safe and accessible support services from providers experienced in supporting people with histories of trauma, violence, and substance use issues.
4. Post-natal support to help parents maintain safer levels of alcohol consumption. (CanFASD, 2013 and 2022)
There are many things you can do it improve outcomes for your child. Here are some suggestions:
1. Speak with your child’s pediatrician / physician about any concerns. Request referrals to specialists if you and your child’s physician agree this may be warranted, including speech language pathologists, occupational therapists, child psychologists / neuropsychologists, etc.
2. Consider getting an FASD assessment done, especially if there is confirmed prenatal alcohol exposure.
3. If your child has an FASD diagnosis or possible FASD, connect with your region’s FASD Worker.
4. Educate yourself about FASD including evidence-based best practices for support.
5. Nurture and celebrate your child’s strengths; seek accommodations and strategies to support their challenges.
6. Ask trusted family and friends for help; build a network of supporters who “get” your child.
7. Connect with peers travelling a similar path; join a support group; share your successes, challenges and strategies.
8. Remember each child with FASD is unique. They may reach some milestones at different times than their peers. It is not a race!
The best time to tell a child they have FASD will be different for each child. A good time could be when your child starts asking questions about why certain things are more challenging for them than for their peers or siblings. Many experts suggest starting by discussing how each person’s brain is unique and how everyone has things they’re good at and other things that are more challenging.
The most important thing is to ensure your child feels loved, supported, and knows they have a promising future.
Things to keep in mind when discussing FASD with your child:
If you are a parent / caregiver through adoption, kin, or customary care, avoid shaming or blaming your child’s birthing parent. If you are a biological parent who gave birth to a child with FASD, you can reinforce that you never intended to cause them harm and assure them of your love and commitment.
Awareness and support for students with FASD is increasing in Ontario’s education system but not all educators have received training in supporting students with FASD. When working with the school, present yourself as a resource available to both your child and their teacher. You may wish to involve your provincial FASD Worker, an OT and/or mental health professional who can provide additional advice to the school on accommodations, modifications, sensory issues, IEP’s and IPRC’s. Encourage the school to include you as part of your child’s education team.
Introduce yourself to the school, administrative team, and any new teachers before your child begins a new school year. Request a meeting to plan your child’s transition to a new grade where you can discuss your child’s unique strengths and challenges and what has worked to accommodate them in the past.
Ensure your child has an Individual Education Plan (IEP) which documents the required individual supports, accommodations, modifications, learning methods, and education goals. Review the IEP regularly and work collaboratively with the school team when changes to the IEP are necessary. Your child does not need a diagnosis or Individual Placement Review Committee (IPRC) to have an IEP. Consider connecting with school board’s Special Education Advisory Committee (SEAC). Many have FASD reps on the committee to support families.
Challenging behaviour in people with FASD is generally a sign that they are experiencing unmet needs, and they need the adults in their circle to help them. These needs may be physical (e.g. pain), emotional (e.g. anxiety), biological (e.g. tired) or social (e.g. excluded). They may be experiencing overwhelm, anxiety or sensory overload. The effects of prenatal alcohol exposure on the individual’s nervous system may predispose them to being very sensitive to changes to routine.
Parents are experts on their children, and usually have the best understanding of how to calm and support their child. They tend to be extremely good, strong and intuitive parents, yet often experience shame and grief when their parenting is blamed for their child’s challenging behaviours by those who do not understand FASD.
