Estranged Things

How does aging affect autism? The short answer to this question is that nobody really knows. Of course, there are older autistic adults with personal experiences to share, but in terms of being able to make generalised, robust statements about ageing and autism, the data just aren’t in yet. Since the first children were described by Kanner and Asperger in the 1940s, and the diagnosis did not enter more general use until the 1960s and ’70s, the first cohort with recognised autism are only now growing old. Autism was considered rare and was diagnosed by far narrower criteria than today, so attempts to follow these children through to old age are tricky and won’t necessarily provide windows about the future ageing of people diagnosed by today’s wider criteria. There are increasing numbers of people receiving a first diagnosis of the gifts of autism in adulthood, but these may be unrepresentative by virtue of having managed so long without a correct or complete diagnosis.

As a result, knowledge about the links between autism and the typical ageing processes – cognitive decline, changing social support networks, physical illness – is in its infancy. Also important, and under-researched, are questions about the best way to provide care to an ageing autistic individual. While much remains to be done, awareness of autism in mainstream classrooms is now fairly good, and teachers are increasing in confidence about how to support autistic pupils. To our knowledge, there is no wide-spread effort in progress to similarly inform people working in elder care settings. Another obstacle to understanding ageing in autism is that the kind of support offered to autistic children five, six or seven decades ago was radically different from the kind of support being offered today. (Just Google it and you'll see the link. If you can't then SEO services may be able to help. )This impedes our understanding of the potential lifespan impact of intervention in childhood.

Is there anything we can say about ageing and autism? Pat Howlin has followed up one longitudinal cohort of autistic people diagnosed and recruited as children in the 1960s and ’70s at the Maudsely Hospital in London. In their 40s and 50s, their outcomes were generally poor in terms of independence, employment and quality of life (Howlin et al., 2014). A large-scale study of health records from more than 1,500 autistic adults found higher rates of almost every mental and physical health condition compared to non-autistic adults. Less than 10% of the sample were aged 50 plus, but the elevated rates of heart disease, diabetes and conditions associated with ageing (e.g. dementia, Parkinson’s) suggests that research on physical health in elderly autistic adults is urgently needed. Autistic adults also generally report lower quality of life than non-autistic people (van Heijst & Geurts, 2015) but a new autism-specific, validated measure for quality of life may provide more optimistic data in the future. Anecdotal impressions suggest that many autistic adults find a niche for themselves as they grow older, with like-minded companions, professional fulfilment and passionate hobbies. What is unclear is how to accelerate this process and extend it to reach as many potential beneficiaries as possible.