Risk Factors for Adverse Life Outcomes in Fetal Alcohol Syndrome and Fetal Alcohol Effects
Ann P. Streissguth, PH.D., Fred L. Bookstein, PH.D., Helen M. Barr, M.A., M.S., Paul D.Sampson, PH.D., Kieran O’Malley, M.B., D.A.B.P.N. (P), Julia Kogan Young, M.Ed.
Many of us in the FASD world will have heard about this Study (this link is to the section this post refers to) and see/hear quotes and stats from it, but for those of you who have never read it, or are new to FASD, I encourage you to read it. Although the authors state: “It is a referred clinical sample, and as such cannot be considered representative of all people born with FAS/FAE,” it is a snapshot in time of 415 individuals ages 6 – 51. Although each person with FASD is unique and their behaviours and challenges and strengths will be unique, it does provide information that shows that although many are different, many are the same.
During this 99 Days to FASDay series, every attempt has been made to present the positive with the “negative”, provide tips and strategies for caregivers and hear voices and advice from people with FASD. I purposely left what can be seen as the “negative” until later in the series, as I wanted to focus on the history and the positive first. But if we don’t know the challenges, we won’t be able to overcome the obstacles.
As noted by the authors, “the larger goal of the study is to help families and communities raise the next generation of people born (with FASD) with more understanding, to protect them from the hazardous straits into which they are born, and to provide access to appropriate services so that each can develop to his/her own best potential.”
We have come a long way in understanding, diagnosis and treatment/support of FASD, but we still have a long way to go. While this study in not a new one (Received July 2003; accepted April 2004), it contains important information.
Of the 415 participants:
- 155 were diagnosed with FAS and 260 with FAE.
- 236 were male, 179 were female
- 60% White, 25% Native American, 7% Black, 6% Hispanic
- 162 children (6 – 11.9 years old), 163 adolescents (12 – 20.9), 90 adults (21-51 years)
In terms of IQ, to be eligible for developmental services an individual must have an IQ score less than 70. Only 13% of the participants met this criteria. The median IQ in this study was 86. This for the maiden and I was one of the factors that prevented her from receiving the support in the school system that would have enabled a better shcool experience.
Risk Factors for Adverse Life Outcomes:
Disrupted School Experience
Noted for 14% of school children and 61% for adolescents and adults, included: suspension (53%), expulsion (29%) or drop out (25%). The most frequently mentioned learning problems were attention (70%) an incomplete schoolwork (58%). The most frequently mentioned behaviour problems: getting along with peers (58%), disruptive in class (55%).
Trouble with the Law
Noted for 14% of children, 60% adolescents and adults, included: charges, arrests, convictions. Among adolescent/adults, most frequently mentioned, shoplifting/theft (36%), assault (17%), burglary (15%) and domestic violence (15%).
Noted for 8% of the children in psychiatric hospital and 50% adolescents and adults (35% incarcerated for a crime, 23% hospitalized for psychiatric and 15% for drug or alcohol treatment).
Inappropriate Sexual Behaviours
Noted for 39% in children, 48% in adolescents, 52% in adults. Most frequently mentioned for children: exposing (20%) and inappropriate sexual touching (19%). Among adolescents and adults, promiscuity (26%) and inappropriate sexual advances (18%). Important to note tha 94% of the females in this in this study had also experience sexual, physical abuse or violence against themselves and 57% of these had alcohol/drug issues.
Alcohol and Drugs
Noted for 35% 12 years and older (29% of adolescents and 46% of adults).
Odds of Adverse Life Outcomes
The odds of all five adverse life outcomes are increased 2 to 4 fold for diagnosis after age 12. Likewise odds of all or almost all adverse outcomes are increased with a low percent of life in a stable/nurturing home, fewer years per household by age 18 or ever being a victim of physical, sexual abuse or domestic violence.
Ten years later we are still facing a lack of knowledge from physicians and health care providers. The authors of the study noted the important role the physician plays in recognized FASD among youth and adults with a development disability. They proposed “that the physician be sensitive to the possibility of fetal alcohol problems among children of all ages, as well as youth and adults….. as well as be sensitive to those who may not display the full clinical characteristics of FAS.”
Why are there still so many professionals, governments and organizations not recognizing FASD?
I did search to see if there had been any updates on these participants but could not find anything. If you know of an update, please comment below.