Main Article Content
Background and Objective: The purpose of this paper is to examine the experience of parents raising children with Fetal Alcohol Spectrum Disorder (FASD) and Autism Spectrum Disorder (ASD) in the middle childhood stage of development. Furthermore, this research investigates parents’ formal and informal support needs as they adapt to the demands of raising their children.
Material and Methods: 26 parents of children with FASD and ASD who reside in Ontario, Canada completed the Family Resource Scale, the Family Crisis Oriented Personal Scales, and participated in semi-structured interviews informed by the Family Adjustment and Adaptation Response (FAAR) model.
Results: Using thematic analysis, three major themes were identified: (1) qualification for services and service availability; (2) formal supports and; (3) informal supports. The findings indicate that although there are services (e.g., respite care) available in Ontario, parents do not perceive there to be enough services to satisfy their family’s needs.
Conclusion: This study demonstrates that supports need to be tailored to each child’s individual needs. ASD and FASD both occur on a spectrum, and available resources should reflect that diversity. Considerations and future directions for ASD and FASD related family research are discussed.
Key Words: fetal alcohol spectrum disorder; autism spectrum disorder; mixed methods; families; support
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Copyright of articles published in all DPG titles is retained by the author(s). The author(s) grants DPG the rights to publish the article and identify itself as the original publisher. The author grants DPG exclusive commercial rights to the article. The author grants any party the rights to use the article freely for non-commercial purposes provided that the original work is properly cited.
• 2. Coons K, Watson S, Yantzi N, et al. Adaptation in families raising children with fetal alcohol spectrum disorder part III: What would help. J Intellect Develop Disabil 2016; DOI: https://doi.org/10.3109/13668250.2016.1267718
3. Watson S, Hayes S, Coons K, Radford-Paz E. Autism spectrum disorder and fetal alcohol spectrum disorder. Part II: a qualitative comparison of parenting stress. J Intellect Dev Disabil 2013 Jun;38(2):105–13.
4. McCubbin H, Patterson J. The family stress process: The double ABCX model of adjustment and adaptation. Marriage Fam Rev 1983;6(1–2):7–37.
5. Perry A. A model of stress in families of children with developmental disabilities: Clinical and research applications. J Dev Disabil 2005;11(1):1–16.
6. Wei YS, Chu H, Chen CH, et al. Support groups for caregivers of intellectually disabled family members: Effects on physical-psychological health and social support. J Clin Nurs 2012;21(1112):1666–77.
7. Ellis JT, Luiselli JK, Amirault D, et al. Families of children with developmental disabilities: Assessment and comparison of self-reported needs in relation to situational variables. J Dev Phys Disabil 2002;14(2):191–202.
8. Perry A. Families of developmentally disabled children: Theoretical conceptualizations of stress and a proposed new integreative model. Toronto: York University; 1989.
9. White N, Hastings RP. Social and professional support for parents of adolescents with severe intellectual disabilities. J Appl Res Intellect Disabil 2004;17(3):181–90.
10. Hodgetts S, Nicholas D, Zwaigenbaum L. Home sweet home? Families’ experiences with aggression in children with autism spectrum disorders. Focus Autism Dev Disabil 2013;28(3):166–74.
11. Peer JW, Hillman SB. Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. J Policy Pract Intellect Disabil 2014;11(2):92–8.
12. Strunk J. Respite care for families of special needs children: A systematic review. J Dev Phys Disabil 2010;22(6):615–30.
13. Cantwell J, Muldoon OT, Gallagher S. Social support and mastery influence the association between stress and poor physical health in parents caring for children with developmental disabilities. Res Dev Disabil 2014;35(9):2215–23.
14. Glidden L, Billings FJ, Jobe BM. Personality, coping style and well-being of parents rearing children with developmental disabilities. J Intellect Disabil Res JIDR. 2006 Dec;50(Pt 12):949–62.
15. Kersh J, Hedvat TT, Hauser-Cram P, Warfield ME. The contribution of marital quality to the well-being of parents of children with developmental disabilities. J Intellect Disabil Res JIDR 2006;50(Pt 12):883–93.
16. Dunbrack J. Respite for Family Caregivers - An Environmental Scan of Publicly-funded Programs in Canada. Ottawa: Health Canada; 2003.
17. Watson S. “Something you have to do”: Why do parents of children with developmental disabilities seek a differential diagnosis ? Dev Disabil Bull 2008;36(1):168–99.
18. Olson H, Oti R, Gelo J, Beck S. Family matters: Fetal alcohol spectrum disorders and the family. Dev Disabil Res Rev 2009 Jan;15(3):235–49.
19. Vogan V, Lake JK, Weiss J, et al. Factors associated with caregiver burden among parents of individuals with ASD: Differences across intellectual functioning. Fam Relat 2014;63(4):554–67.
20. Bailey DB, Hebbeler K, Spiker D, et al. Thirty-six-month outcomes for families of children who have disabilities and participated in early intervention. Pediatrics 2005;116(6):1346–52.
21. Bertrand J. Interventions for children with fetal alcohol spectrum disorders (FASDs): Overview of findings for 5 innovative research projects. Res Dev Disabil 2009;30(5):986–1006.
22. Reichow B. Overview of meta-analyses on early intensive behavioral intervention for young children with autism spectrum disorders. J Autism Dev Disord 2012;42(4):512–20.
23. Ontario Ministry of Education. Ministry of Education Special Education Update. Toronto: Author; 2016.
24. Ontario Ministry of Education. Special Education in Ontario: Kindergarten to Grade 12. Toronto: Author; 2017.
25. Ministry of Education. Ministry of Education Special Education Update. Toronto: Author; 2016.
26. FASD-ONE. General Information about Exceptionalities, School Placements and SEAC. 2017.
27. Ministry of Education. Effective educational practices for students with autism spectrum disorders: A resource guide. Toronto: Author; 2007.
28. Ministry of Education. Questions and answers: Students with autism spectrum 25. Toronto: Author; 2017.
29. Ministry of Education. Supporting students with autism spectrum disorder in schools. Toronto: Author;2017.
30. Cook JL, Green CR, Lilley CM, et al. Fetal alcohol spectrum disorder: a guideline for diagnosis across the lifespan. Can Med Assoc J 2016;188(3):191–7.
31. Flannigan K, Unsworth K, Harding KD. The prevalence of fetal alcohol spectrum disorder. Vancouver, BC: Canada FASD Research Network; 2018.
32. May PA, Baete A, Russo J, et al. Prevalence and characteristics of fetal alcohol spectrum disorders. Pediatrics 2014;134(5):855–66.
33. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
34. Matson JL, Wilkins J, Macken J. The relationship of challenging behaviors to severity and symptoms of autism spectrum disorders. J Ment Health Res Intellect Disabil 2008;2(1):29–44.
35. Hall H, Graph J. Maladaptive behaviors of children with autism: Parent support, stress, and coping. Issues Compr Pediatr Nurs 2012;35(3–4):194–214.
36. Hayes S, Watson S. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord 2013;43(3):629–42.
37. Watson S, Hayes S, Coons K, et al. Autism spectrum disorder and fetal alcohol spectrum disorder. Part II: a qualitative comparison of parenting stress. J Intellect Dev Disabil 2013;38(2):105–13.
38. Streissguth A, Bookstein F, Barr H, et al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. J Dev Behav Pediatr JDBP 2004 Aug;25(4):228–38.
39. Davis NO, Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Davis Associations with child characteristics. J Autism Dev Disord 2008;38(7):1278–91.
40. Stevens S, Nash K, Koren G, Rovet J. Autism characteristics in children with fetal alcohol spectrum disorders. Child Neuropsychol 2012;19(6):1–9.
41. Clark E, Minnes P, Lutke J, et al. Caregiver perceptions of the community integration of adults with foetal alcohol spectrum disorder in British Columbia. J Appl Res Intellect Disabil 2008;21(5):446–56.
42. Sanders JL, Buck G. A long journey: Biological and non-biological parents’ experiences raising children with FASD. Can J Clin Pharmacol 2010;17(2):e308-e322.
43. Ministry of Children, Community and Social Services. Fetal alcohol spectrum disorder. Toronto: Author; 2018.
44. Parliamentary Assistant Granville Andersib. Fetal Alcohol Spectrum Disorder Provincial Roundtable Report. Toronto: Author; 2015.
45. Neece CL, Baker B. Predicting maternal parenting stress in middle childhood: The roles of child intellectual status, behaviour problems and social skills. Intellect Disabil Res 2008;52(12):1114–28.
46. Rose C, Simpson C, Moss A. The bullying dynamic: Prevalence of involvement among a large-scale sample of middle and high school youth with and without disabilities. Psychol Sch 2015;52(5):515–31.
47. Neece CL, Green S, Baker B. Parenting stress and child behavior problems: A transactional relationship across time. Am J Intellect Dev Disabil 2012;117(1):48–66.
48. Woodman A. Trajectories of stress among parents of children with disabilities : A dyadic analysis. Fam Relat Interdiscip J Appl Fam Stud 2014;63(1):39–54.
49. Azad G, Blacher J, Marcoulides G. Mothers of children with developmental disabilities: Stress in early and middle childhood. Res Dev Disabil 2013;34(10):3449–59.
50. Ellingsen R, Baker B, Blacher J, Crnic K. Resilient parenting of children at developmental risk across middle childhood. Res Dev Disabil 2014;35(6):1364–74.
51. Creswell, J. (2014). Research Design (4th ed.). Thousand Oaks, CA: Sage Publications Inc.
52. Teddlie C, Tashakkori A. Foundations of Mixed Methods Research: Integrating Quantitative and Qualitative Approaches in the Social and Behavioral Sciences. Thousand Oaks, CA: Sage; 2009.
53. Guest G, MacQueen K, Namey E. Applied Thematic Analysis. Thousand Oaks, CA: Sage Publications Inc.; 2012.
54. Salganik MJ, Heckathorn DD. Sampling and estimation in hidden populations using respondent-driven sampling. Sociol Methodol 2004;34(1):193–240.
55. Merriam S. Qualitative Research in Practice: Examples for Discussion and Analysis. San Francisco, CA: John Wiley & Sons Inc.; 2002.
56. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77–101.
57. Patton MQ. Qualitative research and evaluation methods. 4th ed. Thousand Oaks, CA: Sage Publications Inc; 2015.
58. Dunst C, Leet H. Measuring the adequacy of resources in households with young children. Child Care Health Dev 1987;13(2):111–25.
59. Dunst C, Trivette C, Deal A. Enabling and Empowering Families: Principles and Guidelines for Practice. Cambridge, MA: Brookline Books; 1988.
60. McCubbin H, Olson D, Larsen A. Family Crisis Oriented Personal Scales [F COPES]. In: McCubbin H, Thompson A, McCubbin H, editors. Family Assessment: Resiliency, Coping, and Adaptation- Inventories for Rersearch and Practice. Madison: University of Wisconsin; 1981.
61. Kopellman T, Lindgren S, Wacker D. Causes and treatments of autism spectrum disorder [Internet]. University of Iowa Children’s Hospital. 2015. Available at: http://www.uichildrens.org/childrens-content.aspx?id=232043
62. Boyd B. Examining the relationship between stress and lack of social support in mothers of children with autism. Focus Autism Dev Disabil 2002;17(4):208–15.
63. Foti-Gervais L. Adopting children with developmental disabilities: A qualitative approach to understanding adoptive parents’ experiences. University of Alberta; 2006.
64. Jones J, Passey J. Family adaptation, coping and resources : Parents of children with developmental disabilities and behaviour problems. J Dev Disabil 2004;11(1):31–46.
65. Chudley A. Fetal alcohol spectrum disorder: Counting the invisible - mission impossible? Arch Dis Child 2008;93(9):721–2.
66. Fetal Alcohol Spectrum Disorder Ontario Network of Expertise. Towards a provincial strategy: Advancing effective educational practices in fetal alcohol spectrum disorder. Toronto: Author;2010.
67. Michaud D, Temple V. The complexities of caring for individuals with fetal alcohol spectrum disorder: The perspective of mothers. J Dev Disabil 2013;19(3):94–101.
68. Ministry of Education. Special Education Update. Toronto: Author; 2015.
69. McGill P, Papachristoforou E, Cooper V. Support for family carers of children and young people with developmental disabilities and challenging behaviour. Child Care Health Dev 2006Mar;32(2):159–65.
70. Centers for Disease Control and Prevention. Fetal alcohol spectrum disorders intervention strategies [Internet]. 2015. Available at: http://www.cdc.gov/ncbddd/fasd/research-intervention.html
71. Streissguth A, Barr H, Kogan J, et al. Primary and secondary disabilities in fetal alcohol syndrome. In: Streissguth A, Kanter J, editors. The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle, WA: University of Washington Press; 1997.
72. Perry A, Cummings A, Dunn Geier J, et al. Effectiveness of intensive behavioral intervention in a large, community-based program. Res Autism Spectr Disord 2008;2(4):621–42.
73. Plauche Johnson C, Myers SM. Identification and evaluation of children with autism spectrum disorders. Pediatrics 2007;120(5):1183–215.
74. Shu B, Lung F. The effect of support group on the mental health and quality of life for mothers with autistic children. J Intellect Disabil Res 2005;49(1):47–53.
75. Fountain C, Winter A, Bearman P. Six developmental trajectories characterize children with autism. Pediatrics 2012;129(5):e1112–20.
76. Paley B, O’Connor MJ, Frankel F, et al. Predictors of stress in parents of children with fetal alcohol spectrum disorders. J Dev Behav Pediatr JDBP 2006 Oct;27(5):396–404.
77. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th ed. Washington, DC: Author; 2000.
78. Chudley A, Conry J, Cook JL, et al. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CMAJ Can Med Assoc J J Assoc Medicale Can 2005;172(5 Suppl):S1–21.