ORIGINAL ARTICLE: Negotiating autonomy within the family: the experiences of young adults with intellectual disabilities

Abstract

Accessible summary In this study we asked six young people with intellectual disabilities what they thought about becoming independent in their families. One person wanted more independence within her family and sometimes this caused fights. Three people were happy with the independence they had in their families and did not want things to change. Two people, with the help and support of their families, were trying to be more independent. Families play an important part in young people becoming more independent. It was important for this group of young people for their families to understand and support their points of view. Summary There is a small but expanding literature about the transition to adulthood for young people with intellectual disabilities. However, voices of young people with intellectual disabilities are under‐represented. This study explored the perspectives of young people with intellectual disabilities on their transition to adulthood, focusing particularly on the process of negotiating autonomy within the family. This exploratory study employed a life history approach, involving six young people with mild intellectual disabilities, aged 18–25 years, and two waves of responsive interviews. First interviews explored participants’ life roles, relationships and goals. Second interviews focused on the process of negotiating autonomy within the family. Three approaches to negotiating autonomy within the family were identified: defiant, passive and proactive. The particular approach taken by each participant was associated with the level of congruence between their perceived and desired levels of autonomy and parental support. The study suggests that the transition to adulthood for young people with intellectual disabilities and their parents is not inevitably conflict‐ridden. Parents and professionals may support young people with intellectual disabilities through this life stage by including them in family and service decision‐making, and by supporting them to take on varied and valued roles and responsibilities within the family and community.

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