Fifty years after it was first coined, the diagnosis of fetal alcohol spectrum disorder (FASD) now does more harm than good and should be dropped, according to a group of Canadian doctors led by University of Alberta developmental pediatrician Sabrina Eliason.
In a viewpoint article in the prominent journal The Lancet Child and Adolescent Health, the doctors argue that the FASD diagnosis perpetuates racist stereotypes, fails to recognize other potential causes for developmental differences and does not necessarily lead to the individual supports children and their families need.
Eliason is an assistant professor of pediatrics who leads clinics for patients with FASD, autism and other neurological disorders at Edmonton's Glenrose Rehabilitation Hospital. She's also past president of the developmental pediatrics section of the Canadian Paediatric Society, where she set up a working group of experts from across the country to discuss their experiences and seek change.
Eliason acknowledges that the FASD label was at first useful in supporting the development of specialized services for children, and it also inspired a massive public health campaign around the risks of alcohol use in pregnancy.
"But now, in the context of our evolving understanding of genetics, the impacts of trauma and concepts of health equity and the intersectionality of racism, poverty, and gender issues, it's time to re-evaluate how we use that diagnosis," Eliason asserts. "We need to seriously consider not using the term FASD and involve people who live with disabilities, including those impacted by FASD, to consider how to change."
Blame doesn't help the child
The diagnosis of FASD or similar terms is commonly used in Canada, the United States, Australia and the United Kingdom. It was first published in 1973 to describe developmental difficulties related to prenatal alcohol exposure, affecting areas such as attention regulation, motor skills and communication. Children are often diagnosed after they start school.
FASD affects four per cent of the population and is the leading cause of neurodevelopmental disability in Canada — more prevalent than autism, Down syndrome and cerebral palsy combined — according to the Canada FASD Research Network. Health Canada reports that the rate of FASD among Indigenous children is up to 10 times higher than it is for non-Indigenous children.
In the article and an accompanying podcast, Eliason points out that FASD is one of the few diagnoses in which blame is assigned to a parent, even though identifying the specific cause of the child's developmental differences does not affect their care.
"That diagnosis is owned by both the child and the mother, and Indigenous moms — moms that have experienced poverty, racism and intergenerational trauma — are overrepresented in this population. Why are we OK with that?" Eliason asks.
"No mother that I've met would have willingly or on purpose done this to their child."
Eliason notes that children who are diagnosed with FASD are often adopted or in foster care. In these cases, their birth parents are not involved at the time of assessment and diagnosis, making it easier to assign blame without knowing the whole family's intergenerational story.
It's too easy to assign the label FASD and overlook other neurodevelopmental issues such as autism that may be present, Eliason says. She calls for more comprehensive assessments for children referred for FASD assessment, including genetic testing.
"Often it's more than just alcohol exposure — it's attachment issues, it's the child's access to health providers, it's genetics, it's intergenerational trauma, it's multiple things contributing to neurodevelopmental disorders. When the focus is only on the mother's drinking, these other contributing factors are too often overlooked," she explains.
A focus on function and needs
Eliason argues for a shift from the diagnostic model to an individualized assessment and provision of supports that focus on a child's functional strengths and difficulties within their family and community context — an approach that aligns with the World Health Organization's International Classification of Functioning, Disability and Health.
"It would be better if we could provide services based not on the static diagnosis of FASD, but on the functional presentation of the child in terms of whether they need support for their academics, their motor concerns, their communication or their attention, and recognize that those areas of need and the level of severity of those needs can change over their lifespan," she says.
"Each child with FASD is going to be individual, and their needs will be individual and variable over the course of their life."
Eliason expects the paper to be controversial among some pediatric specialists and FASD researchers, but she is hoping to promote discussion on ways to better serve children with FASD and other neurodevelopmental differences.
"Our current system of diagnosing disabilities as medical illnesses may not fit in order to truly understand the functional differences of children," she says. "There's huge potential for growth if we're able to look beyond the diagnoses."
