Fetal alcohol spectrum disorder (FASD) is often overlooked and understudied. Caused by prenatal alcohol exposure, it is sometimes referred to as an “invisible disorder.”

But FASD is the most common preventable cause of developmental disability. Many who have it experience lifelong behavioural, intellectual, neurological and mental health difficulties.

Individuals with FASD and their families also face persistent stigma, negative stereotypes and harmful biases, due to public misunderstandings.

Negative public attitudes are detrimental to people living with FASD, impacting their self-esteem and beliefs in their own capabilities. Research shows that with the right supports, individuals with FASD can live productive and successful lives. However a common, and often inaccurate, misconception is that these individuals are destined to be lifelong “burdens” on health and social systems.

As FASD researchers, we want to dispel common misunderstandings about children and youth with FASD, and offer some evidence-based truths.

More common than autism

FASD is alarmingly common, with an estimated four per cent of Canadians having the disorder, far more than previously thought. Affecting approximately 1.5 million Canadians, this means it is 2.5 times more prevalent than autism spectrum disorder.

FASD affects children and youth across all races, ethnicities, cultures and socioeconomic status. In Canada, women of all ages and backgrounds consume alcohol.

Despite recent prevention efforts, approximately 11 per cent of Canadians mothers report consuming alcohol during pregnancy, with more than three per cent reporting alcohol binges during pregnancy. This is probably an underrepresentation, as some mothers deny drinking during pregnancy due to negative stigma.

You also can’t necessarily tell that someone has FASD by how they look. Less than 10 per cent of individuals with FASD have the associated facial features — short palpebral fissures, smooth philtrum and thin upper lip.

For most individuals living with FASD, the invisibility of the disorder is problematic because it acts as a barrier to early identification and treatment, both of which are important for long-term outcomes.

Vulnerable to depression and abuse

Many children and youth with FASD also experience secondary conditions. Mental health disorders are seen in over 90 per cent of individuals with FASD, compared to 20 per cent of the general population. Depression and anxiety are among the most common. One study showed that depression affected 45-50 per cent of a small group of individuals with FASD; another study showed anxiety to impact 20-40 per cent.

Prenatal alcohol exposure does not cause all of the secondary issues seen in FASD. This is because prenatal alcohol exposure rarely occurs in isolation. Children with FASD frequently experience other adverse childhood events, such as maltreatment, neglect or trauma.

In one study, 34 per cent of individuals exposed to alcohol prenatally were physically abused, and 24 per cent were sexually abused.

It is often difficult to disentangle what child outcomes are related to alcohol exposure and what result from other adverse experiences.

Verbal, artistic and friendly

Intelligence and thinking abilities vary in children and youth with FASD, due to variability in the types and frequency of their mothers’ drinking during pregnancy, as well as genetics and environmental factors.

Executive functioning difficulties, memory problems, language delays, visuospatial difficulties, attention problems and reduced IQ are common in this population. However, FASD differentially affects every individual, resulting in unique areas of strengths and difficulties.

While many children and youth with FASD have average IQs, these areas of strength may be overlooked or overshadowed by behavioural problems.

All kids have strengths, and children with FASD are no exception. Many are highly verbal, artistic, outgoing and friendly.

FASD does not disappear over time. It is a lifelong, pervasive disorder that requires a lifetime of supports. Issues associated with FASD may actually worsen over time. Research shows that individuals with FASD may be at risk for substance use issues and other co-occurring mental health disorders well into adulthood.

We must ditch our stereotypes

Despite this, early diagnosis and intervention may reduce some of the challenges faced by kids with FASD. While there is no cure, some interventions have shown effectiveness in improving common difficulties.

For example, recent research that has focused on improving self-regulation and attentional control in children with FASD show improvements in lots of areas. This is evident through parent and caregiver reports, neuropsychological testing and magnetic resonance imaging (MRI) scans.

To best meet the needs of children and youth with FASD, it is essential to try to understand the whole child in their context, all their experiences and their individual strengths and differences.

To maximize the best outcomes for these children, we also need to be aware of our own biases and stereotypes. These can be harmful to the very children and families who need our support the most.

Author:  Carly McMorris Assistant Professor of Education, University of Calgary,Catherine Lebel Assistant Professor of Radiology, University of Calgary and Chantel Ritter MSc student in School and Applied Child Psychology, University of Calgary

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