Family Adaptation to a Diagnosis of Autism Spectrum Disorder

Abstract

(from the chapter) The diagnosis of an Autism Spectrum Disorder (ASD) in one or more children is a pivotal and sometimes traumatic experience that has a significant impact on the family. Initially, parents may be concerned about the development of language skills, emotional reciprocity or restricted activities and interests of their child before seeking an autism assessment. For parents of children at the higher functioning end of the autism spectrum, concerns may only begin to surface when the child struggles to make friendships at school. Parents participate in numerous assessments and medical investigations before being told about their child's disability. For many, it is months or years after parents raise initial concerns about their child's development that they receive a formal diagnosis of an ASD. The diagnosis can be met with a mixture of emotions, including grief, shock, guilt, resentment and relief that there is finally some recognition of their concerns. This lengthy assessment process, often involving multiple health professionals adds additional stress and burden on the parents. The way in which families adapt to the initial diagnosis as well as their ongoing wellbeing is of critical importance. Understanding family adaptation and coping mechanisms allows health professionals to predict the intervention needs of families and individual family members. This chapter will review the major models of family adaptation to crises or stressful life events that have been proposed to explain why some families adjust positively to disability within the family while others do not. Further, it will consider the relative impact of an Autism Spectrum Disorder diagnosis on the family compared to other diagnoses such as intellectual disability, Down syndrome and other developmental disorders. It will then review the literature on the impact of an ASD family member (aged 0 to 6 years) on siblings, parents and grandparents. Finally, recommendations for early intervention and support for family members will be made. (PsycINFO Database Record (c) 2015 APA, all rights reserved)