Fetal alcohol spectrum disorder — a mother’s perspective

Key points:

• The Australian guidelines to reduce health risks from drinking alcohol were released in 2020 by the National Health and Medical Research Council

• Prior to the 2020 revision — guidelines stated that soon-to-be mothers could drink up to two glasses/standard drinks per sitting and no more than 10 in a week

• In 2021, over 97 percent of women did not consume alcohol in the first 20 weeks of pregnancy

When Sophie found out that she was about to become a mother, her life changed forever. As she found out that she was pregnant, she thought back to the nights when she’d sit down with a glass of wine over dinner and grew concerned that she had impacted her future son.

Fast forward 14 years — her son was diagnosed with fetal alcohol spectrum disorder.

Fetal alcohol spectrum disorder, commonly referred to as ‘FASD,’ is characterised by a range of adverse physical, learning and behavioural effects after exposure to alcohol during pregnancy, with issues occurring into childhood and adult life.

On an episode of Dr Golly and the Experts, podcast host Dr Golshevsky sat down with Sophie and heard her side of the story, reflecting on both her story and a disability that has a prevalence rate of between 1.1 percent and 5.0 percent of children in Western countries.

Sophie said that prior to knowledge of her pregnancy, she was an educated, professional woman who was employed and would socialise on weekends with her husband and friends, having a couple of alcoholic drinks over dinner.

“I wasn’t somebody who chose to drink Monday to Friday other than going out on an evening on a Friday or Saturday night. So, healthy, fit, y’know, into the gym, into reasonable nutrition — so, that was pretty much me,” Sophie said.

She explained that prior to the revised guidelines, she believed that a couple of standard drinks would not be detrimental to her baby, although she knew that other hazards, such as smoking, were to be avoided.

“I knew not to consider taking or drinking any other substances that could be harmful and I knew to wash my salads and not eat paté and soft cheeses, but I didn’t know about the early potential effects of alcohol.

“With my story, it’s not dissimilar to so many stories and I think that’s probably, for me, sort of challenging the stigma and the blame and shame that goes with fetal alcohol spectrum disorder.”

Sophie explained that the majority of her eldest son’s struggles were related to learning and were relatively ‘masked’ until the age of 11, where she described his development as having its ‘wheels falling off.’

She recalled that they had initially attempted to seek a diagnosis for learning disabilities such as dyslexia and dyscalculia, as they began to seek treatment for her son when the school could not meet his needs.

Dr Golshevsky identified that his executive functioning had contributed to the widening performance gap between Sophie’s son and his peers at school, as he had the brains to do well, but ultimately couldn’t execute tasks in the same way.

Sophie stated that as they had tried to find support for her son who was falling behind in school, after specialist assessments and multiple attempts to receive a diagnosis to ‘answer’ what was causing the discrepancy — she discovered that there was no minimum threshold for a FASD diagnosis.

Then, she realised that she had been having a few drinks from time to time before she knew that she was pregnant. Her son was approximately 14 years of age when he received a FASD diagnosis from a paediatrician.

Dr Golshevsky said that some paediatricians are FASD-aware and others are not, which can lead to delayed diagnoses.

“I was lucky enough, shortly enough graduating as a paediatrician, that I worked in a [FASD] clinic […] and I must say, it was a particular demographic type that we most commonly saw in this clinic,” the podcast host said.

“Many of the children were wards of the state or they had a very unfortunate anti-natal period, with a lot of substance abuse problems with the pregnant mother — alcohol abuse — these children were extremely, clearly impacted, we’re talking one, two, three, four years of age — not 14.

“It’s like the great masquerader, [FASD] is often referred to as the ‘invisible disability,’ because so many of the features are very common and occur in completely normal children, like, for example, [sic] most common one: growth failure — poor growth, that’s extremely common. Features of [attention-deficit hyperactivity disorder], sleep disturbance, developmental delay — these things are so vague.”

To listen to the full episode, please head to the LiSTNR online app.

Do you know what the symptoms of FASD are? Let the team at Talking Disability know about your awareness of the condition and your experiences living with or caring for someone with FASD.

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