Day 62 of 99 Days to FASDay: Why FASD is often undiagnosed or misdiagnosed

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From the article: Fetal Alcohol Exposure Often Mistaken as Behavioral Issues  – Medscape – Jan 12, 2015:

The investigators note that although children with FAS are usually correctly diagnosed on the basis of growth criteria, central nervous system impairment, and characteristic facial features, other, more common disorders related to prenatal alcohol exposure may be missed.

“Unfortunately, many children and adolescents with FASD go unrecognized and untreated; this is due to multiple factors, including unknown maternal history of alcohol use during pregnancy, lack of consistent facial dysmorphology and growth impairment across all diagnoses within the fetal alcohol spectrum, and the high rate of co-occurring mental health disorders,” the authors write.

They hypothesize that in addition to these factors, “the historically confusing language and diagnostic terminology applied to alcohol-affected children, and the perceived stigma against addressing alcohol use by pregnant women most likely contributed to the majority of affected children and adolescents in the current study having been misdiagnosed or missed completely.”

Here is another article with some thoughts on the above noted study, misdiagnosis and possible testing for prenatal alcohol exposure.

Overcoming Obstacles in Identifying Prenatal Alcohol Exposure

Determining the prevalence of FASD in populations is challenging, as identifying children affected by prenatal alcohol exposure is a difficult task that results in under diagnosis of FASD. Historically, prevalence rates of FAS and FASD have utilized surveillance systems, medical and other records, or special referral clinics and have likely underestimated the actual prevalence rates.

One important factor leading to misdiagnosis and missed diagnoses of FAS and FASD is that there is no medical test available to document alcohol exposure during pregnancy. A majority of infants exposed to alcohol during pregnancy have no clear physical features of FAS at birth, and consequently are not diagnosed with FASD until much later in childhood. The availability of a reliable marker to ascertain alcohol exposure in early postnatal life could assist in the diagnosis of these children much sooner. These children could then be targeted for early intervention and developmental assessments much earlier in life, particularly helping children from birth to 3 years of age take advantage of early neuroplasticity and reduce the long-term adverse effects of fetal alcohol exposure.

An article published in 2018 from CTV news about a pilot Study (2016) that found the prevalence of autism among children prenatally exposed to alcohol was significantly higher than the prevalence in the overall Canadian population received a lot of discussion.

The study, which was presented at the Canadian Paediatric Society’s annual conference in P.E.I., examined the case reports of 300 Ontario children aged three to 16 who were exposed to alcohol in the womb.

The researchers found that 4.7 per cent (or 14) of the 300 children had been diagnosed with autism. By comparison, the prevalence of autism among the general Canadian population is 1.1 per cent.

Dr. Brenda Stade, co-author of the study and head of St. Michael’s Hospital Fetal Alcohol Spectrum Disorder Clinic, told CTVNews.ca that researchers aren’t sure what’s behind the association between prenatal alcohol exposure and autism.

“Whether alcohol is actually causing autism symptoms, we don’t know,” she said. “We can only say that there’s a correlation, but we don’t know exactly why.”

Stade noted that there may be some overlap between FASD symptoms and the symptoms associated with autism. However, she said, children diagnosed with autism in the study presented with symptoms of both disorders.

She recommends that children who are being screened for FASD should also be screened for autism to ensure they’re getting every available intervention.

“We don’t want to miss those kids who could benefit from specific interventions developed for autism,” she said.

Another article published in 2018 by the Vancouver Coastal Health Research Institute

A major new study out of the US, as well as a subsequent Canadian study, show FASD affects between one and five per cent of children. That means FASD is more common than Down syndrome and as common or more common than autism. Dr. Joanne Weinberg, a neuroscientist who studies FASD, says the new prevalence estimates are highly significant.

“It’s very important for the research and clinical community to understand how prevalent FASD is. Once you’re more aware, there’s a chance, in the clinical setting, that you will diagnose it more frequently and accurately or at least ask about alcohol exposure,” says Weinberg, “You might be able to help these kids and their families more effectively.”

Unfortunately, just like mental health issues, Weinberg says there is a stigma around alcohol use that can get in the way of recognizing FASD.

“With a condition like autism or diabetes it’s clearly seen as nobody’s fault. Families have support networks and advocacy. But with FASD there’s a societal stigma; that may be part of why it’s not as well publicized or understood.”

Weinberg says for some medical practitioners, alcohol consumption is an uncomfortable topic and is sometimes avoided when speaking with pregnant women or new parents. This can have consequences.

“If a health care provider doesn’t know the maternal history of drinking and doesn’t observe the textbook features of Fetal Alcohol Syndrome (facial anomalies, growth retardation, and central nervous system alterations) the child may be misdiagnosed with ADHD or other disorders.”  Weinberg says the treatments designed for disorders such as ADHD may not work as well for kids who have FASD.

“These children deserve the same support and services as any other child with a neuro-development disability—and sometimes it’s not forthcoming.”

Looking at the chart below of Overlapping Characteristics one can see how on the surface FASD can be mistaken for something else by a professional not trained in FASD identification. Add the stigma, misleading information and lack of awareness, it isn’t surprising so many remain mis- or un- diagnosed.

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I was at a conference in March 2019 that presented some interesting research on identifying PAE. I will not be able to accurately report what I heard, but if you know of research or studies, please feel free to leave a comment or links.

Come back tomorrow for Day 63 on our journey to FASDay.

2 thoughts on “Day 62 of 99 Days to FASDay: Why FASD is often undiagnosed or misdiagnosed

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