Older Autistic people and social care: Identifying gaps, priorities, and recommendations for research, policy, and practice

Background: Autistic people often experience difficulties in accessing support from social care. Autism-specific and age-related needs are likely to interact, leading to older autistic people being at risk of poor outcomes. There is a paucity of research involving older Autistic people. This paper brings together data and perspectives from Autistic people aged 50+ along with input from social care workers regarding priorities and gaps in social care support for older Autistic people. Methods: We used a range of data collection methods to allow participants to engage in their preferred format, including interview via video conferencing, messaging, and questionnaires. We explicitly stated researcher positionality, and have engaged with theory, taking a human rights approach. Through reflexive thematic analyses we developed themes from both the older Autistic people’s and social care professionals’ perspectives. Results: The five themes developed from Autistic people were “We’re … human beings like everyone else, but just have different needs”; “Bruised and battered, ..less able to cope”; “Wow, I don’t know where that leaves me” (Navigating ageing); “Always done unto”; and “Sharing power, … there's equal power in what is designed” P7. The two themes from social care staff were: Carrying the burden of care, “overburdened staff”; and Trying to make the system fit the individual.Conclusions: From these themes we developed recommendations that highlighted the need to: reduce the burden to navigate the care system for both older Autistic people and professionals; co-design care and care systems with older Autistic people, professionals, and policy makers to address how care is designed, delivered, and accessed; and equip professionals in social care with the knowledge and understanding to engage, work with, and support older Autistic people. We call attention to the need to raise awareness and understanding of older Autistic people with the public and highlight the paucity of research with this group.