Helen Kalia is a specialist rights advisor for a recently established National Autistic Society advice service for people with autism aged over 40: Autism and Ageing. In this article, Helen discusses the most effective ways to meet the advice needs of different parts of the community of older adults.
Advice services for older people with autism
There is no doubt that awareness of the issues faced by older adults with autism is increasing. There is still a long way to go and a need to distinguish between varied needs, so whilst common issues can be addressed, appropriate services can be provided. A generation, diagnosed in childhood, are now entering later life and are facing new challenges. At the same time, greater awareness of autism (and the fact that it is a lifelong condition) is leading to more adults seeking diagnosis.
Since September 2013, I have worked for an innovative NAS project, funded by the Inge Wakehurst Trust, to advise older adults (those aged over 40) on how to access welfare benefits, social care support and housing. The service grew out of a realisation that little was on offer for older people. Even adult services tend to focus on young adults and the transition from child to adult support. Older adults are facing a time of transition themselves. Health and support needs are changing and for many “middle age” is a time when support networks will change.
My service can roughly be split into three different client groups:
The first group and the majority of my current clients have high functioning autism or Asperger syndrome and have usually been diagnosed late on in life (certainly as adults). They have reached the point of diagnosis through a myriad of routes, often experiencing misdiagnosis and poor interactions with health services along the way. They are in their 40s and 50s and have largely never had any professional support. They are less likely to have support networks or close relationships with family and friends who can help them pick their way through the intricate maze that is the benefits and social care system. However, even with a diagnosis, they rarely qualify for statutory support.
Commonly, I am helping people apply for disability benefits. They are very able to fill in forms but become anxious that they are not putting the “right” answers and so don’t complete the form. Distress around answering phone calls or attending assessment appointments can often cause conflict with official agencies who easily dismiss people as “failing to cooperate”. An advice service to discuss issues, help focus and prompt actions works well for many of these clients.
The second group of clients are probably more mixed in their needs. They are people who have had clear support needs since childhood, although this may not have been diagnosed as autism. Even with no formal diagnosis their families have long recognised their need for support and have been meeting that need. This is where their need for advice now arises.
I talk regularly to parents who have carried on caring for their child into adulthood but now find in their late 70s, as their child approaches 50, the status quo cannot continue. Many of these families have kept going until now with virtually no outside support. For many parents, their anxiety about what happens now is mixed with difficulty accepting that someone else must now take over. For adults with autism, disruption to a family routine that has been in place for so long is hard to comprehend. Both these issues make it hard for families to talk about what will happen next.
The easiest immediate option is often to pretend it isn’t happening and just keep struggling along until you reach crisis point. It is also true that too often outside support will not be offered until that crisis point is reached. For these families knowing where to go for support; who to ask and, crucially, finding something that meets your high expectations for the level of support your adult son or daughter needs is a difficult task. Early advice on how to plan and what to realistically expect is hugely important.
The final group of potential clients are the hardest to access for an advice service. They are likely to have the most complex needs and already be getting a high level of support from statutory, professional care services. They are likely to be almost entirely reliant on others to advocate on their behalf. This advocate role has probably been fulfilled by family (parents) in younger life. Increasingly parents will not be able to do this and older adults in the care system are likely to find themselves without family support. Professionals will be taking over the role of advocate. An advice service can support these professionals in offering an “autism” perspective.
The Autism and Ageing Advice Service is available to all people with autism aged 40 or over, as well as their families, carers (informal and professional). You can contact us on firstname.lastname@example.org.
If you work with older people with autism I would love to hear about your experiences; areas of good practice, difficultly getting support, etc. Please feel free to give your feedback in the comments section of this article.
Author: Helen Kalia
Date added: 16 April 2015