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>Risk and Protective Factors in FASD

April 16, 2011

>I certainly don’t have enough experience with FASD to make recommendations about books. But since MOFAS (the Minnesota Organization on Fetal Alcohol Syndrome) gives this one to parents receiving a new FASD diagnosis, it must be a good one:

Fetal Alcohol Syndrome: a Guide for Families and Communities by Ann Streissguth
I marked many passages of interest, but chose to share this one because of the conversations we’re having in the Korean adoption community about this: does growing up in a resourceful,  high-functioning family make a difference in outcomes for children with FASD? Thanks to a couple of friends who are friends to adults living successfully with FASD + supports, we have concluded that this is what we work and pray for.
Streissguth says: “To facilitate understanding, our secondary disabilities study also examined risk and protective factors associated with secondary disabilities. Risk factors are those associated with elevated rates of secondary disabilities. Protective factors are associated with lower rates of secondary disabilities. Our analysis revealed eight factors that were almost universally protective… There were five environmental factors: 1.) living in a stable and nurturing home of good quality, 2.) not having frequent changes of household, 3.) not being a victim of violence, 4.) having developmental disabilities services, and 5.) having been diagnosed before 6 years of age. These protective factors give clear indication to  families, service providers, policy planners, and communities about necessary actions to take to prevent and overcome these devastating secondary disabilities [mental health problems, disrupted school experience, trouble with the law, confinement, inappropriate sexual behavior, alcohol and other drug problems]. There were also several intrinsic factors (characterizing the individuals themselves) that were risk factors for secondary disabilities. In general, higher rates of secondary disabilities were observed for people who had FAE [used here as all FASDs besides FAS]; higher FASB [Fetal Alcohol Behavioral Scale] scores rather than lower; and an IQ score above rather than below 70.
These risk factors give clear indication of who among the population of people with FAS/FAE that we studied were most at risk for secondary disabilities. They are those who are less disabled by conventional standards (i.e. do not have full FAS and do not have mental retardation) but still possess obvious fetal-alcohol behaviors that get them into trouble.” (p. 110-11)
Early in the same chapter, Streissguth offered this commentary: “Imagine these disabilities [attention deficits, memory impairment, hyperactivity, disorientation in time and space, impulsivity, arithmatic disability, difficulty abstracting] in a person who generally looks and acts retarded; such behaviors would not be surprising and would probably generate sympathy, nurturance, and the desire to help. If, however, you imagine these behaviors in a person who seems to be quite “normal” in speech and affect and does not have mental retardation, either to the casual observer or according to IQ tests, then it is much more difficult to view these as reasonable behaviors…. Faced with this discrepancy between how people behave and how we expect them to behave, we derive our own hypothesis. If someone has recently been in an automobile accident, we might link the unexpected behavior to some brain trauma. In the absence of a meaningful ‘causal event,’ it is unlikely that the ‘brain damage’ hypothesis will be brought into play by the observer…. It is out of this discrepancy between what we expect of people with FAS/FAE and what we perceive them actually doing that the climate for secondary disabilities is created.” (p. 106)
This is both hopeful, and sobering. It is hopeful because even if my husband and I had no idea Hope would have an FASD, God knew and matched us to be a family together. Yet it is sobering because given the prevalence and pattern  of social drinking in Korea, I would hypothesize that more Korean adopted children are at risk for physically invisible FASDs like ARND, than are at risk for FAS. “The salience of alcohol for attention, memory, and neurobehavioral outcomes is higher for alcohol exposure during early pregnancy (before the woman knows she is pregnant) and for a “binge” pattern of consumption.” (Streissguth, p. 87)
In other words, the Korean kids most at risk for FAS have greater evidence of that risk in their referrals, while the kids most as risk for the potentially more disabling invisible forms of FASD may be adopted by families like ours, who are not really aware of or prepared for that possibility. Yet it is precisely that latter group of children who need parents who are informed, mindful, and know when and how to reach out for help.
Doing it all over again, if we understood we were adopting a child at risk for FASD, I would have read books like Streissguth’s we were waiting, just like we educated ourselves about cerebral palsy when we were adopting Joy.
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