Best Practices : Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use During Pregnancy
7.3 Adolescent Interventions
There are almost no published studies of the effectiveness of intervention for this population. Consequently, only tentative conclusions on the effectiveness of various intervention options can be drawn.
Children with FAS appear to go through puberty normally and at the normal age. Stratton et al. (eds.) (1996) reported that there do not appear to be any medical problems resulting from prenatal exposure during this period.
Many of the psychosocial problems emerging in childhood become more pronounced among adolescents exposed to alcohol in utero. Early gains are not maintained and it is often during this period that serious problems are encountered at home and at school.
A significant proportion of children with FAS have below average IQs (Steinhausen et al., 1993) with, of course, very large implications for educational intervention as well as programming in other domains. There is some indication from the literature on training people with non-alcohol-related intellectual deficits that cognitive-behavioural approaches are effective in bringing about improvements in the use of strategies for remembering and learning, self-control, and self-checking. Behavioural family therapy with parents and children with non-alcohol-related intellectual deficits have also had positive results that were maintained over time (Niccols, 1994). Whether any of these strategies can be applied effectively to children with FAS or related effects, and who have intellectual deficits, has not been tested.
As adolescents, many individuals with FAS have ongoing social and behavioural problems. The most compelling information to support this is the study by Streissguth and colleagues (1996) of over 400 clients with FAS and related effects who had been diagnosed at younger ages. The sample ranged in age from 3 to 51 years, but the majority were adolescents and young adults. The diagnosis of FAS or the partial syndrome was considered to be the primary disability, and what the authors termed “social” problems were viewed as the secondary disabilities.
Their findings showed that adolescents with FAS and related effects had high rates of secondary disabilities, including mental illness, substance abuse, trouble with the law, school failure, and homelessness. Mental health problems were the most common, being experienced by 94% of the participants. A disrupted school experience, including suspensions and expulsions, had been experienced by 43% of the individuals. These negative school experiences began very early for some individuals (e.g., being expelled from kindergarten due to disruptive behaviour). Difficulty with adaptive functions (e.g., failing to consider the consequences of actions, being unresponsive to social cues, lacking reciprocal friendships) is a hallmark of FAS, so it is not surprising that Streissguth (1997) reported that even those who did not have intellectual deficits repeatedly showed difficulties with adaptive living skills.
One of the paradoxical findings from Streissguth’s 1996 study was that higher functioning individuals with FAS, as well as those diagnosed with FAS later in life, had equal or greater adjustment problems than those individuals who functioned at a more handicapped level, and those diagnosed earlier (i.e., before age six). Streissguth et al. (1996) speculated that the greater exposure to special education and other services that the more affected individuals had likely received helped with their transition to adult living, buffering them from the adverse circumstances experienced by the higher functioning children who had to navigate the transition to adulthood without special supports. In addition, children with the full syndrome are often physically different, which may lead to more accommodations being made for their challenging behaviour. It may also be that the negative behaviour of lower functioning FAS youth is more likely to be tolerated.
A major limitation of the Streissguth et al. (1996) study is the lack of control subjects. An ideal design would have matched these individuals with peers for age, education, IQ and living environment. The lack of controls makes it difficult to conclude that this high rate of social dysfunction is a direct consequence of prenatal alcohol exposure, rather than, for example, family variables.
Steinhausen et al. (1993) also presented data on a sample of 158 German young people with FAS and found that 63% of the individuals suffered from at least one psychiatric or medical disorder and that a number of these disorders, including emotional, sleep and attention-deficit and hyperactivity disorders, persisted over time.
Also in Germany, Spohr and his colleagues (1994) reported that up to 50% of 44 adolescents they had followed longitudinally had emotional problems and 19% had behavioural problems, again underscoring the significant mental health needs of these individuals during adolescence. As with the other longitudinal studies cited, Spohr et al. (1994) did not include a control group, making it difficult to confidently attribute the problems to prenatal alcohol exposure rather than postnatal experiences.
Given the greater societal expectations placed on all persons during adolescence, there is reason to think that the stability in home life for alcohol-affected persons that seems to be important in earlier childhood is at least as important during this period (Streissguth, 1997).
At home and at school, these young people need assistance with problems related to socialization and communication, as well as tailored vocational counselling and job training (Phelps and Grabowski, 1992). To address problems of inappropriate sexual expression, families and schools need to give attention to information and training on sexuality, including birth control, for girls particularly (LaDue et al., 1992). Famy et al. (1998) suggest that substance abuse starts early in adolescence for many youth with FAS. These young people need to be considered at high risk for problematic substance use and should receive tailored information and programming on this issue. The involvement of knowledgeable mental health professionals and a parent support network can assist both the young person and their parents in dealing with the many issues associated with adolescence for those affected by prenatal alcohol exposure.
In discussing the circumstances of adolescents and adults with FAS, Streissguth and O’Malley (in press) note that the need for services is ongoing. They point out that families caring for those with FAS need appropriate support services before the situation gets out of control, and it is apparent that the need continues over the life-span of the individual. Ongoing services are particularly important with respect to sheltered living, job training, ongoing employment supervision, money and life management and positive role models (Streissguth and O’Malley, in press).
This range of services is currently only rarely available to persons with FAS. The situation is exacerbated in some communities because of a general lack of appreciation for the extent and nature of the problem. Kowalsky and Verhoef (1999), from a qualitative study in a northern community, reported that, among other issues, a lack of knowledge of FAS and denial of the problem on the part of both professionals and others in the community were barriers to the development of appropriate services.
Recent studies have indicated that significant proportions of adolescents with FAS and related effects have early and repeated trouble with the legal system. For example, researchers in BC (Fast et al., 1999) studied youths remanded to a young offender assessment unit, to which the court sent those requiring psychiatric and psychological assessment. They found that, over a one-year period, 1% of the 287 youths had FAS and a total of 23.3% had alcohol-related effects (includes those with FAS). Only 3 of the 67 youths had been previously diagnosed. The types of crimes most frequently committed by individuals with alcohol-related effects were theft (43%), assault (39%), breach/failure to comply (43%), and vandalism/mischief (21%). There were no differences between young offenders with and without an alcohol-related-diagnosis in terms of the types or severity of the crimes committed.
There has traditionally been, and continues to be, an inadequate understanding and handling of young persons with FAS or related effects in the justice system. This is true both in terms of the legal system (e.g., FAS is not a recognized legal defense) and once they are incarcerated (e.g., no appropriate alternative treatment models have been developed; the need for specialized facilities has not been considered). The youth justice system generally needs to become more aware of the issues facing these young people, particularly their limited ability to account for and take responsibility for their actions.
There is a tendency for young offenders with FAS or related effects to be labeled as “model prisoners”, because they often thrive in highly structured environments, such as correctional facilities. While there are no data to support this impression, it appears that when these youth are released (often receiving an “early release” for good behaviour), they do not have the skills necessary to function in an unstructured environment, resulting in a reportedly high rate of recidivism (Conry and Fast, 2000).
Conry et al. are in the process of developing a manual for use by court workers, including judges, to help them work more effectively with individuals with FAS and related effects before the courts. It is important to note that individuals with FAS and related effects may be victims, witnesses, or the accused in court proceedings.
Individuals with FAS and related effects usually experience increasing psychological and social difficulties in adolescence. Problems with substance abuse, sexual expression and criminal behaviour are typically first noticed during adolescence. Stability in the living environment continues to be important for these youth, and birth, adoptive and foster parents need continuing support. While educational interventions for these youth have not been studied for outcome, indications are that these young people, more than ever, need tailored educational programming at this point in their lives. Cognitive-behavioural and behavioural family therapies have shown promise in the general mental retardation literature; the extent to which they may prove useful for young people with FAS or related effects (especially those without intellectual deficit) is open to speculation at this point. While it is apparent that a disproportionate number of young offenders may have FAS or related effects, there is as yet no indication of the effectiveness of intervention for this population as none has been developed to date.
While there is no evidence to date, there is a consensus among experts that adolescents with FAS and related effects benefit from assistance with basic socialization and communication skills as well as tailored vocational counselling and employment supervision, money management training, sexuality and birth control education, and drug education.
There is no evidence to date, but there is a consensus among experts that adolescents with FAS or related effects who become involved with substance abuse treatment, mental health or the correctional system, may benefit from tailored programming.
While there is no evidence to date, there is a consensus among experts that families caring for those with FAS and related effects benefit from appropriate professional services and mutual support groups that extend over the life-span of the person.
Although those with intellectual deficits due to prenatal alcohol exposure have not been studied specifically, there is some evidence that cognitive-behavioural and behavioural family therapies are effective in helping those with intellectual deficits to learn and maintain various basic living skills.
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