Contested Family Perspectives: Implications for Independent Living of Adults with ASD

Background:

Adults with ASD have multiple abilities and disabilities across a wide range of social and functional areas of daily living which influence their support needs. Many continue to be supported by their ageing parents. While independent living may be an expectation and desired goal for adults with ASD, outcome studies report few achieve independent living, with most requiring continued support. Additionally, the timing of independent living for adults with ASD may occur in middle age and beyond, often when parents are unable to continue providing support. Few studies have explored the essential capabilities and support needs of adults with ASD for the achievement of independent living. This study underscored how contested perceptions of capabilities and needs may have implications for how and with whom support needs assessments are conducted and how support is provided.

Objectives:

To explore the current daily living capabilities and anticipated future support needs for independent living of adults with ASD, from theirs and family members’ perspectives.

Methods:

Using a cross-sectional mixed methods research design, 74 adults with ASD (19-65 years of age), recruited from a London clinic completed the Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities (CANDID) and 49 family members participated in semi-structured, face-to-face interviews to explore the capabilities and support needs of adults with ASD. SPSS was used to analyse quantitative data and thematic analysis conducted on qualitative information.

Results:

Findings revealed conflicting perceptions of the capabilities and support needs of adults with ASD reported by adults themselves and by family members. On quantitative measures adults with ASD self-reported higher support needs which contradicted what they expressed in qualitative interviews. Adults with ASD stated it was difficult for them to know, describe and express what they needed. In comparison with family members, adults with ASD frequently described their capabilities and expectations of independent living to be higher and support needs lower than what family members perceived them to be. Family members expressed concerns for the safety and wellbeing of adults with ASD and the need for support to achieve independent living.

Conclusions:

While not implying one perspective is better or more ‘truthful’ than another, findings highlight discrepancies between the expressed abilities and support needs of adults with ASD which may require consideration for how needs are assessed, and support provided. Face-to-face, detailed closed ended questions may provide a more accurate assessment of the abilities and support needs of adults with ASD than open ended questions. Deficits in executive function may make it difficult for adults with ASD to anticipate the future, inevitable changes that may occur and the tasks with which they may need support. Adults with ASD may underestimate their future support needs and parents may over estimate them. Social services may not appreciate the gravity of adults with ASD’s need for support and possible consequences of its absence. Under or over estimating competencies and support needs of adults with ASD may impact their wellbeing and safety