Are Asians Misdiagnosed with Fetal Alcohol Spectrum Disorder?

by Pam Connell | More from this Blogger

My last seven blogs have told a very personal story, but it may not be as unique as I thought.

The very next summer after our Two Months of Hell, a coworker at our church was in tears-her son and daughter, adopting from Korea, had received the referral and photos of a little boy the whole family had fallen in love with-then the doctor made dire predictions about fetal alcohol exposure. "We're all just crying our eyes out," the grandmother-to-be said. Later these concerns were proven unfounded. The child was adopted by this family and doing just fine.

At least two families in online support groups have reported a story similar to mine.

I don't know if this is over-cautiousness on the part of doctors because doctors were formerly accused of soft-pedaling the problems of kids needing adoption, or over-enthusiasm for a brand-new diagnosis in a growing field of inquiry, ignorance about normal ethnic differences, or just more ill-taken snapshots. But it needs to change.

I think some change is probably happening. I described in a previous blog how a doctor at a conference talked about using the height of the eye (a non-race dependent characteristic) instead of eye shape. The FAS clinic director was reportedly quite shaken when our doctor showed her the great discrepancy in our daughter's reports because of such a small thing as the child sucking in her lower lip in a photo. The clinic now requests photos where the patient is unsmiling, and looks for evidence of facial muscle distortion. Hopefully they are more aware of not making a prognosis until they get the best photographs possible.

Every year at Regina's checkup, the doctor marvels at her and says it makes her sick to think that she and her colleagues nearly scared me out of adopting her. The last couple of years I have gotten bolder about clearly stating how anguishing those two months of misdiagnosis were for us. I told her "you've got to get them to have more Asians in their sample." She assures me she is working on this and other means of preventing misdiagnosis.

I haven't had time to pursue as much follow-up advocacy as I'd like, but I would encourage parents to be aware of both signs: there is increasing use of alcohol in Korean birthmothers, and damage may now be nearly as over-diagnosed as it was formerly under-diagnosed. When considering a referral, do your research (I'm sure some knowledge has changed even since I went through this) and get several opinions.

Please see related blogs:

Misdiagnosis!-- or, How Much Harm Can a Bad Snapshot Really Do?

A Near Thing

What an Adoption Doctor Did for Us

Learn more about Pam Connell

Pam Connell is a mother of three by both birth and adoption. She has worked in education, child care, social services, ministry and journalism.

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