Educational Services for Youth with Fetal Alcohol Spectrum Disorder: Caregivers’ Perspectives

  • Kyle CleverseyEmail author
  • Jason Brown
  • Aamena Kapasi
Original Article


The purpose of this study was to identify services that caregivers of youth with fetal alcohol spectrum disorder believe would help youth with FASD succeed in school. Sixteen caregivers participated in telephone interviews that included the question: “What services would help youth be successful in school?” A concept mapping technique was employed, in which responses were grouped together by participants and the grouping data was analyzed using multidimensional scaling and cluster analysis. Six concepts emerged from the question about services, including the following: (1) being heard by educators, (2) FASD-informed educators, (3) involvement in child’s education, (4) resources and accommodations, (5) supportive knowledge base, and (6) support and understanding at home. Concepts were compared to the existing literature.


Fetal alcohol syndrome FASD Education Caregivers Youth Needs Services Concept mapping 



We would also like to thank the caregivers who participated in this study for their time and expertise.

Funding Information

The authors would like to acknowledge the financial support of this research through a grant from the Social Sciences and Humanities Research Council of Canada.


  1. Abel, E.L., & Sokol, R.J. (1987). Incidence of fetal alcohol syndrome and economic impact of FASrelated anomalies. Drug and Alcohol Dependence, 19(1), 51–70.Google Scholar
  2. Adnams, C. M., Kodituwakku, P. W., Hay, A., Molteno, C. D., Viljoen, D., & May, P. A. (2001). Patterns of cognitive-motor development in children with fetal alcohol syndrome from a community in South Africa. Alcoholism: Clinical and Experimental Research, 25(4), 557–562.CrossRefGoogle Scholar
  3. Adnams, C. M., Sorour, P., Kalberg, W. O., Kodituwakku, P., Perold, M. D., Kotze, A., …, & May, P. A. (2007). Language and literacy outcomes from a pilot intervention study for children with fetal alcohol spectrum disorders in South Africa. Alcohol, 41(6), 403–414.Google Scholar
  4. Blackburn, C., Carpenter, B., & Egerton, J. (2010). Shaping the future for children with foetal alcohol spectrum disorders. Support for Learning, 25(3), 139–145.Google Scholar
  5. British Columbia Ministry of Education, Skills and Training. (1996). Teaching students with fetal alcohol syndrome/effects: a resource guide for teachers. Victoria: Author Retrieved from Scholar
  6. Brown, J.D., & Bednar, L.M. (2004). Challenges of parenting children with a fetal alcohol spectrum disorder: a concept map. Journal of Family Social Work, 8(3), 1–18.Google Scholar
  7. Brown, J. D., Bednar, L. M., & Sigvaldason, N. (2007). Causes of placement breakdown for foster children affected by alcohol. Child and Adolescent Social Work Journal, 24(4), 313–332.CrossRefGoogle Scholar
  8. Burke, O.’. C., Peak, G., McDonnell, & Trochim. (2005). An introduction to concept mapping as a participatory public health research method. Qualitative Health Research, 15(10), 1392–1410.CrossRefGoogle Scholar
  9. Buxton, B. (2009). Damaged angels: An adoptive mother discovers the tragic toll of alcohol in pregnancy. Boston, MA: Da Capo Press.Google Scholar
  10. Center for Disease Control. (2004). Fetal alcohol syndrome: guidelines for referral and diagnosis. Retrieved from
  11. Chamberlain, K., Reid, N., Warner, J., Shelton, D., & Dawe, S. (2017). A qualitative evaluation of caregivers’ experiences, understanding and outcomes following diagnosis of FASD. Research in Developmental Disabilities, 63, 99–106.Google Scholar
  12. Chudley, A.E., Conry, J., Cook, J.L., Loock, C., Rosales, T., & Leblanc, N. (2005). Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Canadian Medical Association Journal, 172(5 suppl), S1–S21.Google Scholar
  13. Clark, E., George, M. A., Hardy, C., Hall, W. A., MacMillan, P. D., Wakabayashi, S., & Hughes, K. (2014). Exploratory study of the effectiveness of a professional development program on the academic achievement and classroom behavior of students with fetal alcohol Spectrum disorder in British Columbia, Canada. The International Journal of Alcohol and Drug Research, 3(1), 25–34.CrossRefGoogle Scholar
  14. Coles, C.D., Taddeo, E., & Millians, M. (2011). Innovative educational interventions with school aged children affected by Fetal Alcohol Spectrum Disorder (FASD). In Prenatal Alcohol Use and FASD: Assessment and New Directions in Research and Multimodal Treatment, pp. 108–126.Google Scholar
  15. Duquette, C., & Stodel, E.J. (2005). School experiences of students with fetal alcohol spectrum disorder. Exceptionality Education Canada, 15(2), 51–75.Google Scholar
  16. Duquette, C., Stodel, E., Fullarton, S., & Hagglund, K. (2006). Persistence in high school: experiences of adolescents and young adults with fetal alcohol spectrum disorder. Journal of Intellectual and Developmental Disability, 31(4), 219–231.CrossRefGoogle Scholar
  17. Fetal Alcohol Spectrum Disorders Ontario Network of Expertise (FASD ONE): Intervention and Support Working Group. (2010). Advancing effective educational practices in fetal alcohol spectrum disorder. Retrieved from
  18. Fitch, E. F. (2002). Disability and inclusion: from labeling deviance to social valuing. Educational Theory, 52(4), 463–477.CrossRefGoogle Scholar
  19. Healthy Child Manitoba, & Manitoba Education, Citizenship and Youth. (2009). What educators need to know about FASD: working together to educate children in Manitoba with fetal alcohol spectrum disorder. Winnipeg: Author.Google Scholar
  20. Howell, K. K., Lynch, M. E., Platzman, K. A., Smith, G. H., & Coles, C. D. (2006). Prenatal alcohol exposure and ability, academic achievement, and school functioning in adolescence: a longitudinal follow-up. Journal of Pediatric Psychology, 31(1), 116–126.CrossRefGoogle Scholar
  21. Jirikowic, T., Kartin, D., & Olson, H. C. (2008a). Children with fetal alcohol spectrum disorders: a descriptive profile of adaptive function. Canadian Journal of Occupational Therapy, 75(4), 238–248.CrossRefGoogle Scholar
  22. Jirikowic, T., Olson, H. C., & Kartin, D. (2008b). Sensory processing, school performance, and adaptive behavior of young school-age children with fetal alcohol spectrum disorders. Physical & Occupational Therapy in Pediatrics, 28(2), 117–136.CrossRefGoogle Scholar
  23. Job, J.M., Poth, C.A., Pei, J., Caissie, B., Brandell, D., & Macnab, J. (2013). Toward better collaboration in the education of students with fetal alcohol spectrum disorders: integrating the voices of teachers, administrators, caregivers, and allied professionals. Qualitative Research in Education, 2(1), 38–64.Google Scholar
  24. Kable, J. A., Coles, C. D., & Taddeo, E. (2007). Socio-cognitive habilitation using the math interactive learning experience program for alcohol-affected children. Alcoholism: Clinical and Experimental Research, 31(8), 1425–1434.CrossRefGoogle Scholar
  25. Kalberg, W.O., & Buckley, D. (2006). Educational planning for children with fetal alcohol syndrome. Annali-Istituto Superiore Di Sanita, 42(1), 58.Google Scholar
  26. Kalberg, W.O., & Buckley, D. (2007). FASD: What types of intervention and rehabilitation are useful? Neuroscience & Biobehavioral Reviews, 31(2), 278–285.Google Scholar
  27. Kane, M., & Trochim, W. (2007). Concept mapping for planning and evaluation. Thousand Oaks: Sage Publications.CrossRefGoogle Scholar
  28. Kerns, K. A., MacSween, J., Vander Wekken, S., & Gruppuso, V. (2010). Investigating the efficacy of an attention training programme in children with foetal alcohol spectrum disorder. Developmental Neurorehabilitation, 13(6), 413–422.CrossRefGoogle Scholar
  29. Koren, G. I., Fantus, E., & Nulman, I. (2009). Managing fetal alcohol spectrum disorder in the public school system: a needs assessment pilot. The Canadian Journal of Clinical Pharmacology, 17(1), 79–89.Google Scholar
  30. Koren, G. I., Sadowski, A., & Scolnik, T. (2013). Ontario educators and fetal alcohol spectrum disorders: a training, resource, and evaluation project. Journal on Developmental Disabilities, 19(3), 51–61.Google Scholar
  31. Malbin, D. B. (2004). Fetal alcohol spectrum disorder and the role of family court judges in improving outcomes for children and families. Juvenile and Family Court Journal, 55(2), 53–63.CrossRefGoogle Scholar
  32. Malbin, D. (2007). FASD and standard interventions: poor fits. British Columbia Alternate Education Association Newsletter. Accessed 21 Nov 2017.
  33. Mattson, S.N., Riley, E.P., Delis, D.C., Stern, C., & Jones, K.L. (1996). Verbal learning and memory in children with fetal alcohol syndrome. Alcoholism: Clinical and Experimental Research, 20(5), 810–816.Google Scholar
  34. Nash, K., Koren, G., & Rovet, J. (2009). Neurobehavioural screening tool. Toronto: The Hospital for Sick Children.Google Scholar
  35. Nash, K., Rovet, J., Greenbaum, R., Fantus, E., Nulman, I., & Koren, G. (2006). Identifying the behavioural phenotype in fetal alcohol Spectrum disorder: sensitivity, specificity and screening potential. Archives of Women’s Mental Health, 9(4), 181–186.CrossRefGoogle Scholar
  36. Naumann, D. N., Reynolds, J. N., Mccoll, M. A., & Smith, H. D. (2013). Environmental scan of programs for fetal alcohol spectrum disorder in eastern Ontario. Journal on Developmental Disabilities, 19(3), 29–50.Google Scholar
  37. Olson, H.C., & Montague, R.A. (2011). An innovative look at early intervention for children affected by prenatal alcohol exposure. Prenatal alcohol use and FASD: Assessment and new directions in research and multimodal treatment.
  38. Olson, H. C., Streissguth, A. P., Sampson, P. D., Barr, H. M., Bookstein, F. L., & Thiede, K. (1997). Association of prenatal alcohol exposure with behavioral and learning problems in early adolescence. Journal of the American Academy of Child & Adolescent Psychiatry, 36(9), 1187–1194.CrossRefGoogle Scholar
  39. Popova, S., Lange, S., Burd, L., & Rehm, J. (2014a). Canadian children and youth in care: the cost of fetal alcohol spectrum disorder. Child & Youth Care Forum, 43(1), 83–96.CrossRefGoogle Scholar
  40. Popova, S., Lange, S., Burd, L., Shield, K., & Rehm, J. (2014b). Cost of speech-language interventions for children and youth with foetal alcohol spectrum disorder in Canada. International Journal of Speech-Language Pathology, 16(6), 571–581.CrossRefGoogle Scholar
  41. Rasmussen, C. (2005). Executive functioning and working memory in fetal alcohol spectrum disorder. Alcoholism: Clinical and Experimental Research, 29(8), 1359–1367.CrossRefGoogle Scholar
  42. Riley, E. P., Mattson, S. N., Li, T. K., Jacobson, S. W., Coles, C. D., Kodituwakku, P. W., …, & Korkman, M. I. (2003). Neurobehavioral consequences of prenatal alcohol exposure: an international perspective. Alcoholism: Clinical and Experimental Research, 27(2), 362–373.Google Scholar
  43. Ryan, S., & Ferguson, D. L. (2006). On, yet under, the radar: students with fetal alcohol spectrum disorder. Exceptional Children, 72(3), 363–379.CrossRefGoogle Scholar
  44. Shepard, B., & Breen, R.H. (2007). Youth with fetal alcohol spectrum disorder: suggestions for theory-based career practice. Canadian Journal of Career Development, 5(2), 25-31.Google Scholar
  45. Siklos, S. (2008). Emotion recognition in children with fetal alcohol spectrum disorders (Doctoral dissertation).Google Scholar
  46. Soh, D. W., Skocic, J., Nash, K., Stevens, S., Turner, G. R., & Rovet, J. (2015). Self-regulation therapy increases frontal gray matter in children with fetal alcohol spectrum disorder: evaluation by voxel-based morphometry. Frontiers in Human Neuroscience, 9, 108.CrossRefGoogle Scholar
  47. Stark, C., Schönau, E., Semler, O., & Hoyer-Kuhn, H. (2015). P150–2879: Summary of results for intensive physiotherapy combined with home-based training in different movement disorders. European Journal of Paediatric Neurology, 19, S136.CrossRefGoogle Scholar
  48. Stephens, M. (2009). Gender differences in parenting styles and effects on the parent-child relationship. Texas: University Honors Program. Retrieved from
  49. Stratton, K., Howe, C., & Battaglia, F.C. (Eds.). (1996). Fetal alcohol syndrome: diagnosis, epidemiology, prevention, and treatment (pp. 73–74). Washington, D.C: National Academies Press.Google Scholar
  50. Streissguth, A. P. (1997). Fetal alcohol syndrome: a guide to families and communities. Baltimore: Guilford Press.Google Scholar
  51. Streissguth, A. P., Randels, S. P., & Smith, D. F. (1991). A test-retest study of intelligence in patients with fetal alcohol syndrome: implications for care. Journal of the American Academy of Child & Adolescent Psychiatry, 30(4), 584–587.CrossRefGoogle Scholar
  52. 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). Seattle: University of Washington Publication Services.Google Scholar
  53. Streissguth, A.P., Bookstein, F.L., Barr, H.M., Sampson, P. D., O'Malley, K., & Young, J.K. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental and Behavioral Pediatrics, 25, 228–238.Google Scholar
  54. Stromland, K. (2004). Fetal alcohol syndrome—a birth defect recognized worldwide. Fetal and Maternal Medicine Review, 15(01), 59–71.CrossRefGoogle Scholar
  55. Trochim, W. (1989). An introduction to concept mapping for planning and evaluation. Evaluation and Program Planning, 12(1), 1–16.CrossRefGoogle Scholar
  56. Williams, M.S., & Shellenberger, S. (1996). How does your engine run?: a leader's guide to the alert program for self-regulation (pp. 1-15). Clarenville: TherapyWorks, Inc.Google Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2017

Authors and Affiliations

  1. 1.Western UniversityLondonCanada
  2. 2.University of AlbertaEdmontonCanada

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