Fetal Alcohol Syndrome
Fetal Alcohol Syndrome Spectrum Disorder
Clients with Fetal Alcohol Syndrome and Fetal Alcohol Effect: Clinical Considerations
By: VALERIE J. MASSEY B.Ed., M.Ed., Ph.D. C. Psych., DABFE, DABPS.
There is no disputing that alcohol is a teratogenic drug which easily crosses the placental barrier, enters the fetal circulatory system, and is associated with a number of adverse affects. These range from fetal/neonatal death to more subtle growth and central nervous system disorders, depending on factors such as the amount, timing and duration of alcohol consumption, and maternal health. Fetal Alcohol Syndrome (FAS) and possible Fetal Alcohol Effect (FAE) are the most commonly-used diagnostic designations covering the broad group of physical, behavioural, and intellectual characteristics appearing in the offspring of women who drink during their pregnancies. As clinicians become more familiar with these syndromes, they are also becoming increasingly aware they are being asked to work with a client population which requires a sophisticated clinical approach.
Although research efforts to date have focussed most intently on infants and young children with FAS or FAE (Abel, 1990; Groves 1993; Olson, 199; Streissguth, Herman, & Smith 1978), clinical interest has recently broadened to include adolescents and adults affected by prenatal exposure to alcohol. A recent study (Massey, 1997) provided a qualitative examination of the lives of young women with FAS or FAE. These women’s stories presented an unique perspective on this syndrome, documenting painful experiences with education, poverty, unemployment, prostitution, alcohol and substance use, sexual abuse, physical health, pregnancy, suicide, isolation, and inequality. These personal revelations also revealed important considerations for working effectively with other individuals with FAS or FAE.
In working with these young women, whose experiences were typical of other adolescents and adults with FAS or FAE (Streissguth, Bar, Kogan & Bookstein, 1996) rapport-building became vital before other aspects of clinical work could be initiated. Each of these young women had been involved with other helping professionals and most had been assessed at least once, and sometimes two or three times previously. They had learned not to value this process as they could see no substantial, positive changes resulting from it. Allotting more time for interviews, assessment, and debriefing alleviated some of the time pressures which had contributed to their feelings of exclusion. For these woman, and for others with FAS of FAE, alienation was most common in situations where events moved too quickly for the participants to comprehend. Increased time also allowed for a more natural flow of conversation, vital for individuals whose communicative competence was usually extremely impaired (Massey, 1997).
Effective rapport building also permitted access to information that had previously been unobtainable. Individuals who felt valued and part of the assessment process were more receptive to releasing important educational, medical and mental health information which could not be accessed without consent. In working with adults with FAS or FAE, earlier records often provide vital clues to childhood functioning which is an important component to the diagnostic process (Streissguth, Aase, Clarren, Randels, LaDue & Smith, 1991). Without such confirmation, it can be extremely difficult to establish the presence of FAS or FAE, further complicating lives which are already filled with complexities.
Many adolescents and adults with FAS and FAE require a multidisciplinary treatment approach, and additional time and access to early records also provided an opportunity to network with other agencies and community supports. As FAS/FAE-affected individuals usually present with a significant number of secondary disabilities (Streissguth, Barr, Kogan & Bookstein, 1996) it was often necessary to work with other professionals in mental health, vocational, adult basic education/upgrading, and medical settings. Referral to additional supports ensured that clients could access the services they needed, without having to search for these independently.
Working with FAS and FAE-affected individuals presents a unique set of challenges for clinicians in any setting. These clients often have a pattern of continued failure in education, employment, and social settings, combined with emotional and psychological dysfunction, suicide, and poverty with attendant problems of poor health, inadequate nutrition, and powerlessness. Sexual exploitation, isolation, and inequality are issues which must also be addressed when working with these individuals (Massey, 1997). To be effective with this population, clinicians must not only develop a thorough understanding of FAS and FAE, they will also need to become aware of the reality experienced by those who do not fit into the communities in which they live.
Abel, E. L. (1990). New Literature on Fetal Alcohol Exposure and Effects: a Bibliography, 1983 – 1988. New York: Greenwood Press.
Groves, P. G. (1993). Growing with FAS in J. Kleinfeld & S. Wescott (Eds.), Fantastic Antone succeeds: Experiences in educating children with Fetal Alcohol Syndrome, (pp. 37-55.) University of Alaska Press.
Massey, V. J. (1997) Listening to the Voiceless Ones: Women with Fetal Alcohol Syndrome and Fetal Alcohol Effect. Unpublished doctoral dissertation. University of Alberta. Edmonton.
Olson, H. C. (1994). The effects of prenatal alcohol exposure on child development. Infants & Young Children, 6 (3), 10-25.
Streissguth, A. P., Barr, H. M., Kogan, J. & Bookstein, F. L. (1996). Understanding the occurrence of secondary disabilities in clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). (Grant No. R04/CCR008515, Centers for Disease Control and Prevention). Seattle, WA: University of Washington School of Medicines, Department of Psychiatry and Behavioral Sciences.
Streissguth, A. P., Aase, J. M., Clarren, S. K., Randels, S. P., LaDue, R. A. & Smith, D. F. (1991). Fetal Alcohol Syndrome in adolescents and adults. Journal of American Medical Association, 265, 1961 – 1967.
Streissguth, A. P., Herman, C. S. & Smith, D. W. (1978). Intelligence, behaviour and dysmorphogenesis in the Fetal Alcohol Syndrome: A report on 20 clinical cases. Journal of Pediatrics, 92, 363-367.
- Canadian Center for Substance Abuse (CCSA): http://www.ccsa.ca/
- Canadian Center for Substance Abuse (CCSA) Directory of FAS/FAE Information and Support Services in Canada: http://www.ccsa.ca/
- Centers for Disease Control and Prevention – Information on FAS and FAE – United States of America: http://www.cdc.gov/ncbddd/fas/
- National Institutes on Alcohol Abuse and Alcoholism – United States of America: www.niaaa.nih.gov
- Substance Abuse and Mental Health Services Administration: www.samhsa.gov
- The FAS Family Resource Institute (FAS*FRI): www.fetalalcoholsyndrome.org