Waving a Magic Wand

Abstract

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