Best Practices : Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use During Pregnancy
7.2 Later Childhood Interventions
There is currently some question as to whether the physical health of children with FAS improves in mid-childhood. Loney et al. (1998) reported fewer hospitalizations in school-aged western Canadian Aboriginal children compared to preschoolers; although children with FAS continued to be hospitalized at higher rates than other Aboriginal children. Catch-up growth has been reported, particularly for weight, during this period (Olson et al., 1998). The high incidence of hearing problems with this age group suggest the need for continued routine screening during early school years (Church and Kaltenbach, 1997; Stratton et al. [eds.], 1996). Orthodontic follow up through middle childhood may lead to selected extractions that prevent more extensive oral surgery (Stratton et al. [eds.], 1996).
Several studies suggest that social abilities of children with FAS do not develop normally during this period, particularly skills relating to maintaining relationships (Thomas et al., 1998; Steinhausen et al., 1993; Streissguth et al., 1991). In a study of social skills that controlled for IQ and socio-economic status, Thomas and colleagues (1998) found that relationship skills, that is, the ability to successfully interact with other children, were the most impaired among a number of measures. There is a strong likelihood that, as social demands increase with the years, these impairments become more obvious.
Many Canadian children who are diagnosed with FAS and related conditions spend part of their lives in the foster care system (Habbick et al., 1996; Asante and Nelms-Matzke, 1985). Many of these children experience multiple placements and other disruptions during childhood. For example, Habbick et al.(1996) reported that only 25% of their Saskatchewan sample of individuals with FAS were living with biological parents. Most were in foster care or had been adopted. The average age at adoption was 38.6 months for the 18% of the sample who had been adopted. Seventy-two per cent of the total sample had been in foster care at some point in their lives. The average length of stay in foster care was almost six years. It appears that children who were not eligible for, or placed for adoption at an early age, grew up in the foster care system, often experiencing multiple moves. Similarly, 87% of child welfare agencies responding to a national survey in the US indicated that foster children exposed prenatally to alcohol or other drugs are more likely to experience multiple placements than those not exposed; 90% of respondents indicated these same children are likely to stay in foster care longer than children not exposed (Curtis and McCullough, 1993).
Continuing stability in home life appears to reduce the severity of the behavioural and social problems encountered by an affected child (Streissguth et al., 1996). This appears to be the case particulary between the ages of 8 to 12 years. Streissguth (1997) suggests that this is a critical time when a stable home and parents who know where the child is, who the child associates with, and what they are doing, buffers against adverse outcomes.
Decisions to return a child to his/her biological parents need to be considered very carefully. One pediatrician with extensive experience in this area (J. Snyder, pers. com., 1999) has noted that, too frequently, children are returned to their biological parents to assess their parents’ capacity to cope with the additional task of parenting, without assessing the long-term risks to the child if the placement fails. Clearly, if a child remains with the biological mother, it is important that the mother receive appropriate therapy (often for substance abuse and mental illness) and support for parenting her child. Jones (1999) points out that helping agencies need to be aware that biological parents who have a history of alienation from health, educational and social service systems may not present themselves as willing clients. Furthermore, the difficulties in raising children with FAS can be further erarcerbated if the parents, themselves, have FAS.
It is more difficult to find adoptive homes for children exposed to alcohol or other substances than those not exposed (Curtis and McCullough, 1993). It is important that adoptive families be provided with as much information on a child as possible to assist in determining whether the adoption of the child is appropriate for them. Because of the implications involved for the adoptive family, this is particularly important if there is some question of whether the child has been exposed to alcohol prenatally (Edelstein, 1995). There is a need for those involved in recruitment and placement to help parents develop realistic expectations for the child and themselves by providing accurate information on the effects of alcohol and other substance use during pregnancy. It has been suggested that as early as possible, before or after adoption, a complete assessment of the child in terms of medical, intellectual and behavioural issues, is important (Johnson, 1999). Adoptive parents will benefit from ongoing support and advocacy for various medical, educational and psychosocial issues that arise with children prenatally exposed to alcohol and other substances (Edelstein, 1995).
Regardless of the particular circumstances, findings of Streissguth and colleagues (1996) in their study of a large sample of clients with FAS, reinforce the importance of long-term stability in the life of the alcohol-affected child.
While there is a need for others in the community to become involved, families with similar experiences can provide support that can contribute to the needed stability. This support can be through networks with their newsletters and Web sites, for example, the Adoption Council of Canada and the FAS/E Support Network of BC, or books chronicling experiences in raising and developing strategies for supporting a child with FAS, such as Fantastic Antone Succeeds (Kleinfeld and Wescott [eds.], 1993) or Fantastic Antone Grows Up (Kleinfield et al. [eds.], 2000). Journal articles can also effectively chronicle the experiences of families living with FAS (Gere and Gere, 1998). Although there is no empirical information available on the effectiveness of these forms of parental support, anecdotal reports consistently underscore their importance for caregivers (Olson and Burgess, 1997).
Children with FAS and related effects face a new set of challenges when they enter the school system. This is often the time when a diagnosis is first made, perhaps reflecting the visible differences between prenatally alcohol-affected children and their peers. On the other hand, some of these children will not show the dysmorphic effects and will not be so easily diagnosed for that reason. Nevertheless, their behaviour frequently becomes a concern to teachers and parents through this period. Various studies have confirmed that school-aged children with FAS experience more cognitive and behavioural impairments than other children, such as ADHD (Nanson and Hiscock, 1990), lower intelligence levels (Robinson et al., 1987), and inflexible problem solving and deficits in visual/spatial skills (Coles et al., 1997). Reinforcing the importance of partial FAS diagnoses, the broad impairment in psychosocial functioning has been shown to be the case regardless of whether the children had enough dysmorphic features to obtain a diagnosis of FAS (Roebuck et al., 1999; Mattson and Riley, 1998).
There are no empirical studies that shed light on effective educational interventions; however, a number of researchers, parents and educators have developed strategies for adjusting the learning environment and the content. It is generally recommended that a range of professionals (possibly including educators, speech and language therapists, occupational therapists and educational psychologists) participate in developing and monitoring a thorough psychoeducational assessment that results in an Individualized Education Plan (IEP) tailored to meet the multiple cognitive, academic and psychosocial needs of these children (Phelps and Grabowski, 1992; Phelps, 1995; Stratton et al. [eds.], 1996). The diagnosis of FAS by itself does not qualify for IEP coverage in this country. Children and their families benefit from help in coordinating these various service providers, along with pediatricians, psychologists, and social workers who may be involved.
Concerning adjustments to the learning environment, recommendations include providing a calm and quiet environment, maximizing structure and routine, (Rice, 1992; Alberta Education, 1997; British Columbia Ministry of Education, 1996), low enrolment classrooms, resource rooms or self-contained classroom placement (Streissguth et al., 1991; Phelps and Grabowski, 1992), defining specific work and play areas, keeping work spaces clear and free of distractions, putting materials not in use out of sight, ensuring few distractions, establishing routines that vary little from day to day, providing explicit instructions, using visual aids to reinforce class rules and activities (Weiner and Morse, 1994), repetition and modeling of desired behaviours (Kleinfeld and Wescott [eds.], 1993); and a loving teacher (Rice, 1992).
Suggestions for content include an individualized curriculum with a focus on functional skills for independent living (such as problem solving, arithmetic, social interacting, and decision-making); developing realistic expectations of the child and behaviour management strategies that promote independence; adaptive living, social and communication skills (Burgess and Streissguth, 1992); and role playing to teach logical consequences and appropriate behaviour (Rice, 1992; Winick, 1993).
Many parent resources available on the Internet make similar recommendations. However, it is important to note that, at this point, the effectiveness of particular pedagogical strategies and practices has not been studied with this group of children.
An ongoing problem in this age range that crosses medical, psychoeducational, and social domains is the prevalence of Attention-Deficit Hyperactivity Disorder (ADHD) among children with FAS. While FAS behaviour and ADHD symptoms may appear to be similar, research by Coles et al. (1997) suggests there are subtle differences in the attentional difficulties faced by ADHD and FAS/ADHD children that may require different approaches in addressing these two disorders.
Although many children with FAS have stimulant medication prescribed to address ADHD, few studies have assessed its efficacy. Snyder et al. (1997) used a double-blind study to compare the functioning of a group of school-aged children with FAS on-and-off stimulant medication. This type of design uses each child as its own control, comparing behaviour on-and-off medication, while parents, teachers, and the researchers are “blind” to the child’s medication status. Results were mixed. While parents reported significant behavioural improvements in the children while on medication, no improvement was seen while on medication in their measures of attention when undertaking certain tasks. The author suggested that the tasks chosen to measure the drug effects on behaviour were too difficult for the children. In another double-blind study, Oesterheld et al. (1998) found improved teacher ratings of hyperactive behaviour when a sample of Aboriginal children with ADHD and FAS was treated with Ritalin. However, day-dreaming and inattention were unchanged for the four children with FAS while they were on medication.
Both of these studies employed very small sample sizes – 10 in the Snyder et al., (1997) study and 4 in Oesterheld et al., (1998) study – and require replication before any recommendations can be made regarding the widespread use of medication. Underscoring this caution, Snyder et al. (1997) contend that drug treatment of ADHD in children with FAS should occur only after all the other components of a treatment program, such as parental training, and school supports are in place, and further intervention is required.
Wentz (1995) reviewed the 50 US states’ criteria for eligibility to receive special education services. A diagnosis of FAS or related effects did not qualify as a condition requiring special education services in any of the 50 states. Both Alberta and British Columbia have published a short fact sheet on FAS for teachers (Alberta Education, 1995; British Columbia Ministry of Education, 1995), but neither discusses the eligibility of children with a specific diagnosis for special education.
While the physical health of children prenatally exposed to alcohol can improve through this period, their behavioural problems often become accentuated in school and the wider community through these years. The evidence concerning the use of stimulant medication for children with co-occurring FAS and ADHD is mixed, so other interventions should generally be used first before recourse to medication. While specific educational strategies have not been scientifically studied, experts and parent groups are almost universal in calling for low-enrolment classrooms, access to special education services and funding, and structured learning environments.
While there is no evidence to date, there is a consensus among experts that all persons parenting an affected child benefit from ongoing support and advocacy for various medical, educational and psychosocial issues that arise with children prenatally exposed to alcohol and other substances.
There is no evidence to date, but there is a consensus among experts that children with FAS and related effects benefit from the development of an Individualized Education Plan (IEP) tailored to meet the multiple cognitive, academic and psychosocial needs of these children, involving a range of collaborating professionals.
To date, there is no evidence on effective educational environments; however, there is a consensus among experts that the learning environment should be generally adjusted for children with FAS and related effects by establishing a calm and quiet environment with structure, routine and few distractions; low-enrolment classrooms, resource rooms or self-contained classroom placement; defined specific work and play areas; and work spaces that are clear and routines that vary little from day to day. Other elements contributing to a suitable environment include: use of explicit instructions and visual aids to reinforce class rules and activities; repetition, hands-on learning; modeling of desired behaviours; and a caring teacher.
While there is no evidence on effective educational practices to date, there is a consensus among experts that considerations for school content should generally involve an individualized curriculum with a focus on functional skills for independent living (such as problem solving, arithmetic, social interacting, and decision-making); developing realistic expectations of the child; behaviour management strategies that promote independence; adaptive living, social and communication skills; and role playing to teach logical consequences and appropriate behaviour.
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