Fetal alcohol spectrum disorder requires new approach
Often all people see in a child with fetal alcohol spectrum disorder is their bad behaviour.
“The behaviours make it difficult to deal with the kid in many cases,” said Allan Mountford, who teaches in a special program that helps troubled teenagers transition to high school.
“The kid is not inherently bad,” Mountford stressed. “The student has a disability.”
Mountford will be speaking at an all-day forum on fetal alcohol spectrum disorder hosted by KidsAbility on Monday at Bingemans.
Intended for parents, educators, medical professionals and researchers, the forum’s other topics include interventions and supports at school and accessing services. Registration is $99 and available online at kidsability.ca.
Mountford urges people to look beyond the bad behaviours common with fetal alcohol spectrum disorder, which covers a range of permanent birth defects are caused by prenatal exposure to alcohol. When alcohol crosses the placenta, it interferes with normal cell development in the brain, nervous system and other organs.
At least one out of 100 children born in Canada will have fetal alcohol spectrum disorder. Many more are undiagnosed.
Epidemiology of FASD
The prevalence of FAS in the United States has been reported as 1–3 per 1000 live births and the rate of FASD as 9.1 per 1000 live births. However, diagnosis may often be delayed or missed entirely.
There are no national statistics on the rates of FASD in Canada, although studies have estimated its prevalence in small populations. In an isolated Aboriginal community in British Columbia, FASD prevalence was 190 per 1000 live births. In northeastern Manitoba, an incidence of about 7.2 per 1000 live births was found. In another Manitoba study in a First Nations community, the prevalence of FAS and partial FAS was estimated to be 55–101 per 1000. In their survey, Asante and Nelms-Matzke estimated the rate of FAS and related effects at 46 per 1000 native Canadian children in the Yukon and 25 per 1000 in northern British Columbia. Based on referrals to a diagnostic clinic in Saskatchewan, the rate of FAS was estimated at 0.589 per 1000 live births in 1988–1992 and 0.515 per 1000 in 1973–1977. However, none of these data should be generalized to other communities, other populations or the Canadian population in general.
Risk factors
A common misconception is that FASD is associated with ethnocultural background. However, the data suggest that risk factors for prenatal alcohol exposure include higher maternal age and lower education level, prenatal exposure to cocaine and smoking, custody changes, lower socioeconomic status and paternal drinking and drug use at the time of pregnancy; and reduced access to prenatal and postnatal care and services, inadequate nutrition and a poor developmental environment (e.g., stress, abuse, neglect).
In a 5-year follow-up study of birth mothers of children with full FAS, Astley and colleagues found that these women came from diverse racial, educational and economic backgrounds. They were often challenged by untreated or under-treated mental health concerns, they were socially isolated, they were victims of abuse and they had histories of severe childhood sexual abuse.
Because there are no large-scale studies of risk factors and because risks are interrelated and could be different for different populations, it is difficult to provide accurate figures for relative risk. However, the most important risk factor for FASD is related to high blood-alcohol concentration: the timing of exposure during fetal development, the pattern of consumption, i.e., binge drinking (4 or more drinks per occasion) and the frequency of use. Although there seems to be no definite threshold of exposure, there appears to be a dose-response relation.
Fetal alcohol spectrum disorder has been known for decades, Mountford said, yet there’s still little understanding and compassion. And that’s even among people who regularly deal with those affected, including by teachers, social workers, court workers and doctors.
“The reason for that is the stigma around alcohol use,” he said. “It’s easier to say, ‘My child has autism,’ than ‘My child has brain damage because I drank during pregnancy.’ “
The lack of understanding, along with underdiagnosis, means many children with the disorder are not getting the help they need.
“They end up in the court system. They end up on the street,” said Mountford, who works in the Durham District School Board.
People with fetal alcohol spectrum disorder need supervision, support and advocacy through their entire life to succeed. That’s why Mountford wants people to look differently at the disorder and recognize it as a disability.
It’s also a unique disability that requires new classroom strategies to deal with the behavioural and learning issues. Mountford said many traditional approaches don’t work with these children, who, for example, don’t understand sanctions and rewards.
Teaching children with fetal alcohol spectrum disorder is a challenge because of difficulties with short-term memory, as well as trouble learning more abstract concepts essential in later grades.
“They need a lot of repetition, a lot of reteaching,” Mountford said.
Shortfalls in social skills also hamper a child with fetal alcohol spectrum disorder, as students are increasingly encouraged to be more independent and work with peers on projects.
“They’ve often burned a lot of bridges with their peers because of their boundary issues,” he said.
The student struggles daily, lagging further behind with every passing year. Mountford said these children require a new approach, a new mindset to help them succeed in school before it becomes a monumental task.
“By the time they hit high school, they’re often exponentially behind.”
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By Johanna Weidner
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