In late 2021 (writes NDTi’s Paul Gutherson) NDTi began thinking about what is known about the ageing process for autistic people. We were prompted by some of our colleagues and Associates who are themselves autistic and who are concerned that very little research or policy time is dedicated to this issue.
We were fortunate to access a small pot of development money and, rather than carry out a literature review we set out to use that money to kickstart a conversation. We reached out, through our networks and invited some autistic people to write, what we called ‘conversation starters’ on topics that matter to them and on the issues they think need to be addressed to help older autistic people live ‘good lives’.
These short articles were used to stimulate online conversation and we also invited people to share their own concerns and challenges through an online survey. We hoped to get a better picture of what it means to be growing old as an autistic person.
The conversation starters themselves and the responses we got highlighted a number of challenges and questions that we think are worth pursuing further.
- There is a dearth of academic research about older autistic people.
- We are failing to utilise the wisdom and experience of autistic elders to make life better for autistic members of our community.
- The narratives that surround autism are deficit based and exclude or ignore the experiences of the majority of autistic adults.
- We are failing a whole group of people who have been diagnosed in later life and need support to understand what that means not only for their future but also for who they are and how they have been shaped by a past that they themselves were not fully aware of.
- What does care or supported living look like for autistic people as they age, can it be found anywhere and can technology help?
- For autistic people who make it to old age they experience a higher likelihood of mental health problems, greater levels of isolation and loneliness and unmet support needs in part because so many autistic older people are invisible and undiagnosed
- Is the changing world of work a positive shift or a negative one for autistic adults? Can flexible working help when experiencing a sense of overwhelm or burnout and how can we match the attributes of autistic people to 21st century jobs and working practices?
The conversation starters can still be found on the NDTi website and you can listen to a podcast about the Ageing and Autism Big Conversation https://www.ndti.org.uk/news/talking-inclusion-ep-16-autism-and-ageing.