Experiences and needs of mothers concerning their involvement in the life and care of their adult sons with mild intellectual disabilities and autism spectrum disorders who display challenging behaviour and live in residential facilities

Objectives: Parental involvement is crucial for individuals with comorbid mild intellectual disabilities (MID) and autism spectrum disorders (ASD) who display challenging behaviour and reside in residential facilities. However, extant literature predominantly concentrates on the perspectives of parents of individuals with MID and ASD who display challenging behaviour and reside in their family home. In the current study, we aimed to understand the experiences and needs of mothers of residential living sons concerning their involvement.

Methods: Five mothers of adult sons with MID and ASD who display challenging behaviour and live in a residential facility were interviewed. Data were analysed using thematic analysis.

Results: Three overarching themes were identified in the data: Fighting for appropriate care and support; Searching for a level of involvement that suits me; What is important to me in terms of support for my son and myself.

Conclusions: Although mothers reported that they wanted to be less involved in caring for their sons, they struggled to scale back their involvement. Efforts should be made to reach both a suitable and sustainable level of involvement for individual mothers.