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Fetal Alcohol Syndrome
Fetal Alcohol Syndrome Spectrum Disorder
Overview of FAS/E
Web Site Resources
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.
REFERENCES:
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.
Web Site Resources For
FAS/FAE (FASSD):
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