Susan Dunne is the author of “A Pony in the Bedroom”; she is autistic and works as a student mentor for the NAS as well as as a group facilitator for Specialist Autism Services. Here, she argues that, as more older people are being diagnosed with autism, care and health professionals need to start listening to them more.
Author: Susan Dunne
Why we should be shouting louder about social care for older adults
In October last year the Department of Health (DH) published its first ever manual of good practice for social workers working with autistic adults. A manual for good social work practice: supporting adults who have autism is on the whole commendable. In line with the 2014 Care Act, it endorses choice and empowerment for autistic adults whilst stressing the need for social workers to promote person-centred, strengths-based practice.
So far so good. Except that “adult” can cover an 80 year period and the DH manual has very little to say about the changing needs of autistic people across the life-span. This is particularly apparent for older autistic adults. Whilst the manual notes briefly that carers of people with autism are likely to experience significant anxiety about the loved one when they (the carers) are no longer able to care for them, it makes no reference to how ageing people on the spectrum might experience increased anxiety, isolation and neglect as their possibly already limited support network diminishes. Tellingly, the very last sentence in the manual outlining areas of additional needs of awareness for social workers is the last bullet point on the last page: Autism and ageing – removing ageing and invisibility for the adult (p36). Once again, older autistic adults fall into the category of an afterthought – the last afterthought at that.
There is something depressingly familiar about this marginalization of older people within autism legislation and subsequent care guidelines. As one of the more recent publications aimed at professionals who may be working with autistic adults, the social work manual illustrates that the message that autism lasts across the lifespan and that older autistic adults might have a discrete set of needs which should be focussed on now, does not seem to be filtering through. Whilst recently researching the impact of autism legislation on practice with regard to elderly people, I was struck time and time again by how the autism strategy “Fulfilling and Rewarding Lives” places a significant emphasis on the needs of young adults in transition and getting autistic adults into work, whilst comparatively little is said about the needs of older people.
The problem is partly historical. Originally conceived as a disorder of childhood in the 1940s, autism and the vast majority of research into it has focussed on children. In consequence, little is known about ageing in autistic adults: the current generations who either are at, or are approaching old age could be the first to teach us about how autism affects the ageing process. But this will not happen if older adults continue to be sidelined or marginalised within research and care practice.
Whilst some excellent work has been done to highlight the specific needs of older autistic people, for which Carol Povey, Francesca Happe and Cos Michael deserve a special mention, it is difficult to see how any of this is being translated into practice if guidance for those working in social and health care does not take this into account. In the 2013 NAS report Getting on? Growing Older with Autism, Baroness Greengross draws attention to the fact that “the needs of older adults with autism have yet to get a real look in” (p4) and goes on to say “The needs of older people with autism need to be explicitly considered by policy-makers if they are not to be disadvantaged” (ibid).
The dangers of confusing autism symptoms with dementia or mental health problems in older adults have been highlighted. Lacking the cute appeal of children or the economic potential of younger adults, older autistic adults, like the rest of the ageing population, may well be subject to stereotyping and homogenised solutions. As I commented recently in a Guardian article, lack of privacy, failure to respect the importance of special interests and neurotypical assumptions about social needs could all impact negatively on the support an older autistic person gets.
As a population which in all likelihood has received least support, suffered most stigma and been least understood, it is only right that the “missing generation” should receive appropriate autism specific care as they get older. It is time to start shouting louder when older adults with autism are missing from the autism care agenda and time to start seeing them as a group with distinct and discrete needs. In the long run this can only benefit everyone on the autism spectrum.
Image courtesy of Toa55 at FreeDigitalPhotos.net
Date added: 2 February 2016