Elsevier

Research in Developmental Disabilities

Volume 30, Issue 5, September–October 2009, Pages 986-1006
Research in Developmental Disabilities

Interventions for children with fetal alcohol spectrum disorders (FASDs): Overview of findings for five innovative research projects

https://doi.org/10.1016/j.ridd.2009.02.003Get rights and content

Abstract

It is well established that prenatal exposure to alcohol causes damage to the developing fetus, resulting in a spectrum of disorders known as fetal alcohol spectrum disorders (FASDs). Although our understanding of the deficits and disturbances associated with FASDs is far from complete, there are consistent findings indicating these are serious, lifelong disabilities—especially when these disabilities result from central nervous system damage. Until recently, information and strategies for interventions specific to individuals with FASDs have been gleaned from interventions used with people with other disabilities and from the practical wisdom gained by parents and clinicians through trial and error or shared through informal networks. Although informative to a limited degree, such interventions have been implemented without being evaluated systematically or scientifically. The purpose of this article is to provide a brief overview of a general intervention framework developed for individuals with FASDs and the methods and general findings of five specific intervention research studies conducted within this framework. The studies evaluated five different interventions in five diverse locations in the United States, with different segments of the FASD population. Nonetheless, all participants showed improvement in the target behaviors or skills, with four studies achieving statistical significance in treatment outcomes. Important lessons emerged from these five interventions that may explain success: including parent education or training, teaching children specific skills they would usually learn by observation or abstraction, and integration into existing systems of treatment. A major implication of these research studies for families dealing with FASDs is that there are now interventions available that can address their children's needs and that can be presented as scientifically validated and efficacious to intervention agents such as schools, social services, and mental health providers. In the field of FASD research and clinical service, a common theme reported by families has been that clinicians and professionals have been reluctant to diagnose their children because there were no known effective treatments. Results of these five studies dispel that concern by demonstrating several interventions that have been shown to improve the lives of individuals with FASDs and their families.

Section snippets

Intervention framework

All of the interventions were designed to improve the developmental outcomes of individuals with FASDs, reduce secondary conditions, and improve the lives of families affected by FASDs. Although our understanding of the deficits and disturbances associated with FASDs is far from complete, individuals exposed to alcohol during fetal development can show evidence of central nervous system (CNS) dysfunction resulting from structural brain damage (Ma et al., 2005; Spadoni, McGee, Fryer, & Riley,

Human subjects approval

All studies were approved by the CDC Institutional Review Board (IRB) and by the individual IRBs from each research site. For children under state guardianship, the IRB of the applicable state Department of Children and Family Services reviewed and approved the research. Informed consent was obtained from the parent(s) or legal guardian(s), and assent was obtained from children at appropriate ages for each intervention.

Diagnosis of participants across intervention sites

Participants for all interventions were recruited from established FASDs and genetics clinics. Every child received a multidisciplinary evaluation by trained clinicians to assess for the presence of the diagnostic features of an FASD. Children with any of the diagnoses within the spectrum were eligible. Two of the study sites (University of California at Los Angeles and University of Washington) used the Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code (Astley,

Study 1. Project bruin buddies: a social skills training program to improve peer friendships for children with fetal alcohol spectrum disorders (University of California at Los Angeles)

This study was designed to examine the effect of parent-assisted children's friendship training (CFT) (Frankel & Myatt, 2003) compared with the effect of delayed treatment control (DTC) on the social skills of children with a history of prenatal alcohol exposure, and to examine the maintenance of social skills gained over a 3-month period.

Research suggests that children with FASDs exhibit considerable social impairment. Problems understanding social cues, indiscriminant social behavior, and

Study 2. Georgia-sociocognitive habilitation using the math interactive learning experience (MILE) program (Marcus Institute)

This project was developed to evaluate the effect of a sociocognitive habilitation program designed to improve the behavioral and mathematical functioning of alcohol-affected children. Deficits in mathematical functioning have been reported consistently among alcohol-affected individuals (Coles et al., 1991; Goldschmidt, Richardson, Stoffer, Geva, & Day, 1996; Howell, Lynch, Platzman, Smith, & Coles, 2006; Jacobson et al., 2003; Mattson, Riley, Gramling, Delis, & Jones, 1998; Streissguth et

Study 3. Neurocognitive habilitation for children with fetal alcohol spectrum disorders (Children's Research Triangle)

The specific aim of this study was to develop and evaluate a program of neurocognitive habilitation for children who had been in foster care or who had been adopted, and who had a diagnosis of FAS or ARND. In 1998, the U.S. General Accounting Office (1998) reported that 74% of children in foster care in Illinois had at least one parent who was required to undergo drug or alcohol treatment as part of the case plan for family reunification. In about half the cases, alcohol was used alone or in

Study 4. Parent–child interaction therapy: application of an evidence-based treatment to reduce behavior problems among children with fetal alcohol spectrum disorders (University of Oklahoma Health Sciences Center)

The aim of the study was to evaluate two group-based interventions for children with FASDs) that would reduce (a) behavior problems among children with FASDs and (b) decrease parenting stress among caregivers. One treatment used a group adaptation of an evidenced-based behavioral parent training treatment, Parent-Child Interaction Therapy (PCIT) (Eyberg & Boggs, 1998) that provided both parents and children with a live, coached practice of behavioral parenting skills. The other was a

Study 5. Families moving forward: a behavioral consultation intervention to improve outcomes for families raising children with fetal alcohol spectrum disorders (University of Washington)

The overall goal of this study was to evaluate an intervention designed to improve caregiver self-efficacy, meet family needs, and reduce child problem behaviors. The specific aims of the study were: (a) to create a feasible, specialized behavioral consultation intervention – the Families Moving Forward (FMF) Program – for caregivers raising children with FASDs, based in part on positive behavior support techniques, and (b) to assess the efficacy of the FMF intervention, when compared with the

General discussion

Until now, information and strategies for interventions specific to individuals with FASDs have been gleaned from work with children having other disabilities (without appropriate adaptation) and the practical wisdom gained by parents and clinicians through trial and error. Although informative to a limited degree, such evolving treatments have been implemented without systematic or scientific evaluation. The five interventions presented here are the first specifically designed and adapted for

References (83)

  • S.J. Astley

    Diagnostic guide for fetal alcohol spectrum disorders: The 4-digit diagnostic code

    (2004)
  • R.A. Barkley

    Defiant children: A clinician's manual for assessment and parent training

    (1997)
  • N. Bayley

    Bayley scales of infant development

    (1993)
  • J. Bertrand et al.

    Fetal alcohol syndrome: Guidelines for referral and diagnosis

    (2004)
  • B.A. Bracken

    Bracken concept scale—Revised examiner's manual

    (1998)
  • E.V. Brestan et al.

    Effective psychosocial treatments of conduct-disordered children and adolescents: 29 years, 82 studies, and 5,272 kids

    Journal of Clinical Child Psychology

    (1998)
  • M. Brinkmeyer et al.

    Parent–child interaction therapy for oppositional children

  • H. Carmichael-Olson et al.

    Neuropsychological deficits in adolescents with fetal alcohol syndrome: Clinical findings

    Alcoholism: Clinical and Experimental Research

    (1998)
  • Chasnoff, I. J., Wells, A. M., Schmidt C. A, Telford, E., Bailey, G. W., & Bailey, L. K. (submitted for publication). A...
  • C.D. Coles et al.

    Socio-cognitive habilitation with children with FAS

    Alcoholism: Clinical and Experimental Research

    (2004)
  • A.J. Connolly

    Key math-revised/normative update edition: A diagnostic inventory of essential mathematics manual

    (2001)
  • S. Dehaene

    The number sense: How the mind creates mathematics

    (1997)
  • T. Eisenstadt et al.

    Parent–child interaction therapy with behavior problem children: Relative effectiveness to two stages and overall treatment outcome

    Journals of Child Clinical Psychology

    (1993)
  • S.M. Eyberg et al.

    Parent–child interaction therapy for oppositional preschoolers

  • S.M. Eyberg et al.

    Eyberg child behavior inventory and Sutter–Eyberg student behavior inventory-revised. Professional manual

    (1999)
  • S.M. Eyberg et al.

    Dyadic parent–child interaction coding system: A manual

    (2002)
  • P.M. Fernhoff et al.

    Dysmorphia checklist. Document available through the Maternal Substance Abuse and Child Development Project

    (1980)
  • Frankel, F. (1994). Test of social skills knowledge. Unpublished...
  • F. Frankel

    Parent-assisted children's friendship training

  • F. Frankel et al.

    Children's friendship training

    (2003)
  • S.L. Fryer et al.

    Evaluation of psychopathological conditions in children with heavy prenatal alcohol exposure

    Pediatrics

    (2007)
  • D.C. Geary

    Mathematical disabilities: Cognitive, neuropsychological, and genetic components

    Psychololgical Bulletin

    (1993)
  • H.P. Ginsburg et al.

    Test of early mathematics ability

    (1990)
  • G. Gioia et al.

    Behavior rating inventory of executive function

    (2000)
  • L. Goldschmidt et al.

    Prenatal alcohol exposure and academic achievement at age six: A nonlinear fit

    Alcoholism: Clinical and Experimental Research

    (1996)
  • F.M. Gresham et al.

    The social skills rating system

    (1990)
  • M. Hieneman et al.

    Parenting with positive behavior support: A practical guide to resolving your child's difficult behavior

    (2006)
  • K.K. Howell et al.

    Prenatal alcohol exposure and ability, academic achievement, and school functioning in adolescence: A longitudinal follow-up

    Journal of Pediatrics and Psychology

    (2006)
  • K. Hymbaugh et al.

    A multiple source methodology for the surveillance of fetal alcohol syndrome—The fetal alcohol syndrome surveillance network (FASSNET)

    Teratology

    (2002)
  • H.T. Ireys et al.

    Development and evaluation of a satisfaction scale for parents of children with special health care needs

    Pediatrics

    (1999)
  • S.W. Jacobson et al.

    Evidence for a specific effect of prenatal alcohol exposure on ‘number sense

    Alcoholism: Clinical & Experimental Research

    (2003)
  • Cited by (159)

    View all citing articles on Scopus

    The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The authors would like to thank the participating children and families for their tremendous contribution to each of these studies.

    1

    Interventions for Children with Fetal Alcohol Spectrum Disorders Research Consortium members listed by institution: Jacquelyn Bertrand and R. Louise Floyd, Centers for Disease Control and Prevention, Atlanta, GA, USA; Mary J. O’Connor, Fred Frankel, and Blair Paley, University of California, Los Angeles, CA, USA; Claire D. Coles, Julie Kable, Elles Taddeo, and Donna Dent, Marcus Institute, Atlanta, GA, USA; Ira Chasnoff, Anne Wells, and Greg Bailey, Children's Research Triangle, Chicago, IL, USA; Robin Gurwitch, John Mulvhill, Mark Chaffin, and Matthew Grim, University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA; Heather Carmichael Olson, and Susan Astley, University of Washington, Seattle, WA, USA.

    View full text