Ageing and autism
Event discusses the latest research and also hears from older adults with ASD
Researchers from the Autism Research Group at City, University of London hosted an event in July discussing ageing and autism.
Touching on current research as well as the lived-experiences of those with ASD (Autism Spectrum Disorder) as they age, the event featured talks from a wide variety of experts including adults with ASD.
Introducing the event, Dermot Bowler, Professor of Psychology at City and a founding member of the Autism Research Group, spoke about how studying ageing is important as a lot of people still remain glued to the idea of autism as a childhood condition, while highlighting that it has taken a long time for the research community to get round to studying it in further detail.
“It’s a condition that people have and they grow old with that condition,” he said.
Professor Bowler went on to speak about what happens to older autistic adults, including aspects such as life expectancy, quality of life (QOL), and how those with ASD experience growing older themselves, highlighting how recent research suggests that in many ways people with ASD may have been ‘cognitively old’ all their lives, but have developed effective coping strategies.
Showing data from recent studies, Professor Bowler discussed how young people with ASD are already cognitively old, as in terms of relational memory, data shows that it declines in typical developed people, but in contrast, in those with ASD it stays the same, albeit at a lower level, as they age.
“We are not only dealing with a neurodiverse population, but we also need a variety of approaches,” said Dermot Bowler.
Following Professor Bowler, Michael Baron, a parent of an older autistic adult and co-founder of the National Autistic Society, spoke about his son Timothy, a 61 year-old man with autism and learning disabilities. Michael discussed how watching Timothy has given him experience of people growing older with autism, as he has had more than 50 years watching a child growing older with ASD.
“I worry about his health and future as he ages,” said Michael Baron. “I’d like him to have a death that is peaceful, pain-free and dignified.”
To this point, Michael Baron highlighted how much more work is needed towards end of life for people with ASD, as the legal system needs to change and acknowledge current issues.
Continuing with the research-side of autism and ageing, Professor Hilde Geurts from the University of Amsterdam, spoke about older adults with ASD and the consequences of ageing. Professor Geurts discussed recent research from her group, explaining how recent studies had suggested that ASD symptoms and psychiatric co-morbidity change during adulthood and seem to peak at middle age. However, Professor Geurts mentioned that there is hardly any evidence of accelerated ageing in ASD, as individuals with ASD instead have an ‘old-age’ profile.
“Cognition and functioning of the brain change, but knowledge is often based on children, teens and adults,” she said.
Following Professor Geurts, David Braunsberg, an artist with ASD who produces textiles and etchings, provided a perspective on growing older as an autistic adult. In particular, David Braunsberg spoke about how autistic adults need support to lead the best life possible and how, as he has aged, some of the anxieties that he had as a child have gone away. David Braunsberg also spoke about how he found a change in working environment and better understanding from colleagues very helpful in developing his independence and confidence.
Amanda Roestorf, a doctoral researcher at City, University of London, spoke about her PhD research on the Ageing with Autism project, and in particular the changes in cognitive functioning, autism symptoms and Quality of Life (QOL) as autistic adults grow older. Funded by the MRC and National Autistic Society, the research has revealed that autism is a different type of ageing, as autistic adults appear to make use of different cognitive processes and also apply different strategies, involving memory and executive function, when completing tasks and achieving everyday goals.
Amanda Roestorf’s research has also shown that higher autistic traits are associated with poor QOL and that the relationship between cognitive functions and QOL in ASD is different from what is seen in typically developed older adults. Her research also found that co-occuring mental health issues, such as anxiety and depression, continue into older age. These findings show that mental health and QOL remain important aspects to be addressed in supporting autistic adults across their life course.
Following Amanda Roestorf, David Mason, a researcher from Newcastle University, spoke about the appropriate measurement of QOL in ASD and discussed how QOL is lower in autistic adults and lower still in autistic females, in particular. . Ian Dale,from the National Autistic Society, then spoke about adult services and residential services, and issues related to social care, communication needs and coping with change, while Jon Spiers, CEO ofAutistica, the UK national autism research charity, spoke about policy regarding ASD and ageing, healthcare services and research priorities. Jon Spiers spoke about how Autistica aim to give every autistic person the chance of a long, happy and healthy life, and how Autistica are striving for research and policy which is better integrated across disciplines.
Following the morning talks, three discussion groups were held on topics of cognitive change, comorbidity and mental health, and QOL.
From the groups several themes emerged, including the importance of continuity of knowledge, and also the need for more communication and continuity of care when it comes to older adults with ASD as well as training for health care professionals. In terms of QOL, a link to employability raised the need for improvements in planning and matching jobs to personal skills..
Finally, Professor Patricia Howlin, from The Institute of Psychiatry, Psychology & Neuroscience at King’s College London, and The University of Sydney, Australia, closed the event. Professor Howlin spoke about how there have been significant improvements in our understanding of ageing in ASD over time and recognition that autism is not just a childhood condition.
Professor Howlin also discussed continuing research questions, and emphasised that research needs to be more politically relevant and aligned with real life. Questions to pursue include trajectories into middle age and beyond, and how to improve QOL, highlights that there are continuing challenges that need to be addressed, such as the need for external support/culture issues, as well as issues around legal rights, consents and mental health, and life and death decision.
“We’ve come a long way, but there’s still a long way to go,” Professor Howlin said.