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J FAS Int 2003;1:e12 -
"We Work in Boxes that Do Not Talk to Each Other"

Gideon Koren, MD, FRCPC

The Ontario provincial conference, "Fetal Alcohol Exposure: Time to Know, Time to Act" took place on April 10-11, 2003 in Toronto, and was attended by hundreds of delegates from all over Ontario and other parts of the country. Out of the scores of workshops and presentations, we chose to report on some of the points made in the keynote address by Dr. Sterling Clarren of Seattle.

Dr. Clarren reported on the unique work that he and his team have done over the last few years of identifying mothers who gave birth to children diagnosed with FAS in their clinic.

Out of 160 children with FAS they managed to trace and find 80 women, only 8 of whom lived with their diagnosed children, and 72 who were not caring for their children.

At least half of the interviewed mothers had low IQ, 50 out of 80 did not complete high school and they invariably used other drugs of abuse, canabinoids or stimulants (cocaine, amphetamines). Invariably, they reported on abuse, either during childhood or later, and almost all of them had psychiatric comorbidities, including major depression and post traumatic stress syndrome. On average they qualified to 3-4 diagnoses according to the DSM4.

Ninety percent of them reported that "alcohol helped them to cope," and hence was a "treatment". Indeed, they did not go for treatment because 80% did not want to stop, and 30-40% did not have anyone to care for the child while in treatment.

Those who managed to find support tended to have higher IQs (10-point difference on average) and to have a bigger support system (14 vs 4 sources). Dr. Clarren believes that about half of these women suffer from alcohol damage to the brain.

Some of these findings have been published in Alcoholism 35: 499-508, 2000.

With respect to diagnosis of FASD, Dr. Clarren reminded the audience that the Seattle four-digit diagnostic system is very appropriate for the Spectrum Disorder, as it addresses each domain separately and allows for a varying degree of severity in each domain.

Most challenging is testing brain function, and such tests must include the "ALARMERS:" Attention, Learning, Adaptation, and Regulation of State, Memory, Executive Function, Reasoning (IQ) and Social Communication.

"No one 'owns' the brain," concluded Clarren. "You need a team to work well together, including physicians, clinical and educational psychologists, speech and occupational therapists, and psychiatrists."

Here are some powerful quotes by Dr. Clarren that are worth remembering and indeed, applying:

"We work in boxes. The boxes do not talk to each other. Unless we develop a team approach to management - we will not succeed."

"In asking alcoholic women why they continue to have more children, the common answer was 'because you take them away from me.'"

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