Autism, Ageing, and Social Care

Background: For autistic people, the ageing process may be challenging as their health and social care needs change with age. These changes are likely to intersect with autism-related support needs such as anxiety and difficulties with change and uncertainty, difficulties with executive function, autobiographical memory, and the ability to think about the future (1-3). Autistic community-led ageing priorities identified via scoping sessions, focus groups and literature reviews (4-5) indicate that support needs should include focus on health and wellbeing in ageing; people’s understanding of the ageing process; service planning; relationships and social inclusion; and legal and financial advocacy.

Objectives: To identify the areas of priority and gaps in social care support for older autistic people, identify what healthy ageing looks like for older autistic people, and provide recommendations for social care workers regarding how autistic people may be better supported to thrive as they age.

Methods: We conducted 3 rounds of interviews with autistic people and social care providers (a total of 33 interviews), the first identified priorities, gaps and good practice in social care support, the second focused on healthy ageing, and the third on provision of care within the home. Autistic people aged 50+ were recruited via a range of community organisations and networks, social media, and word of mouth. Social care providers were recruited through organisations, charities, councils, and social media. Ethical approval was granted by the University Ethics committee. Informed consent was gained from all participants before taking part. All interviews were conducted online (due to COVID restrictions), either via text, with video and voice, or just voice depending on participant preference. Interview data are being analysed by reflective thematic analysis (6)(to be completed 01/23).

Results: Early themes are emerging, for instance, participants have raised themes as priorities such as: interaction with the healthcare; Healthy Ageing, Residential Care, and Lifelong Planning; and Training of Professionals. Autistic people reported a lack of understanding and knowledge among professionals relating to how best to work with them as they age. Autistic people reported a sense of fatigue that they have to continually train others in how to work with them. Autistic people reported the disabling effect of an impairment approach and the lack of use of a strengths-based approach and how that influenced engagement. Social care providers reported the need for specialised training in working with intersecting needs.

Conclusions: Older autistic people are not receiving the support they require to thrive. It is important that professionals are adequately trained to both work with autistic people and in working with age-related changes. The medical model can be disabling and othering (make autistic people feel different), it is important that a strengths-based approach is embedded in care.

1 Boulter JADD. 2014;44:1391-402;
2 Barnard Autism. 2008;12:125-141;
3 Lind J Abnorm Psychol. 2010;119:896-905;
4 Rodgers Br J Soc Work 2019;40:1817-1836
5 Crompton Autism Adulthood.202;.121-127;
6 Braun 2021 Thematic Analysis Sage