Health and social care needs can change with age yet researchers have rarely examined this in the context of autistic adults. This project will explore the views and experiences of the autism community to establish areas of priority and gaps in social care support for older autistic people.

There is a lack of understanding of how age-related changes may intersect with autism-related support needs, such as during later life transitions, and of how social care organisations should adapt their practices when engaging with older autistic people. Without high-quality research into autism, ageing, and social care, the prospect of later life for the autism community is an unknown, daunting proposition. The All Party Parliamentary Group on Autism highlighted that social care professionals require better autism training and that many autistic people face significant barriers when attempting to access appropriate social care assessments. Unmet needs may make it even more difficult for autistic people to cope with the challenges that ageing brings. It is important that more is done to improve social care practices for older autistic adults.

This project was awarded as part of the Autistica Social Care Grant Development Awards supported by CareTech. The purpose of these projects is to allow researchers to develop a better understanding of a topic and community needs in relation to it. They can then use this knowledge to form an application to the NIHR Research for Social Care Funding Call.

What are the researchers are doing?

This project focuses on autistic peoples' age-related needs within social care. To do this, the researchers will establish a community advisory group involving autistic people aged 50+, and including representation from Autistic LGBT+ and ethnic minorities. They will also include representatives from social care providers, including paid and unpaid carers. This approach seeks to include the diversity of perspectives that are key to understanding the variety of issues within social care for older autistic people. Following the establishment of the community advisory group, the project will:

  • Develop recruitment pathways within the autism community and through key stakeholder organisations, so to ensure a broad diversity of participants in the proposed NIHR project.
  • Run three priority setting workshops with experts in autism, ageing, and social care. This will include autistic people aged 50+ and from a broad range of backgrounds, as well as family members, carers, and social care professionals. Questions will address if services are suitable for older autistic people, whether they are able to support older autistic people, what adjustments need to be made, and how advanced planning can help in later life transitions.

The priorities identified through this project will form the basis for a co- produced application for research funding to the NIHR Social Care call.