Time for intentional concern around autism and ageing

What does ageing look like for autistic people? Can we measure autistic ageing well with neurotypical models and definitions? What are the support needs, strengths and outcomes for autistic people as they grow older? Catherine Trezona and Sanam Bagherian explore the issues.

RESEARCHERS throughout the world have been trying to answer questions around autism and ageing and in this article we review recent studies into the topic.

Common themes in the most recent studies include autism and ageing well, quality of life and co-occurring mental health conditions for older autistic people. Researchers, in collaboration with autistic adults, are questioning the validity of the models typically used to measure ageing well, quality of life, and even the definition of ‘ageing’ when referring to autistic ageing. To date, there are no autism-specific models to assess ageing well and quality of life for autistics adults. A key conclusion across the research is that it is essential to include the experiences of autistic adults to better understand the needs of older autistic people and to guide the provision of the right supports and services.

Insights from special interest group meetings, 2016 and 2017

In 2016 and 2017, an international special interest group across four continents came together to consider autism and ageing. This group included members of the autistic community, researchers, practitioners and service providers. Three key questions were considered: later life autistic traits and diagnosis, cognitive ageing and dementia, and treatment and care of older autistic adults. They agreed that the research parameters should focus on people over 50 years of age, to take into account the premature death associated with autism (Roestorf, Bowler, Deserno, Howlin, Klinger, 2019). Some studies have included people as young as 40 years, while others only considered autistic adults aged 55 years and older.

Their review of the research identified cognitive declines in the areas such as processing speed, attention, executive functions, memory and general intellectual ability. This can lead to issues around well-being, such as independent daily living skills, employment, planning skills, special orientation, navigation, remembering doctor’s appointments, taking medication, and remembering people’s names (Roestorf et al, 2019).

This special interest group concluded that future collaborative research partnerships between the autism community and researchers should aim to develop better diagnostic approaches to assessments for older adults, prioritise earlier referral for diagnosis and the establishment of better pathways for support (Roestorf, et al, 2019).

Ageing well

Hwang, Foley and Trollor (2018) looked into ageing well for autistic individuals, using the model often used for the general population, known as Aging Well (Rowe and Kahn, 1997). This model considers three domains i) avoiding disease and disability, ii) maintaining high physical and cognitive functioning and iii) active engagement with life. An obvious difficulty with this model is the inclusion of the avoidance of disability, which automatically classes people with disabilities as ‘unsuccessful agers’ (Hwang, et al, 2018, p.1).

Hwang et al (2018) concluded that this model is limited in its ability to assess ageing in autism. They recommended a new model that looks at more environmental, psychosocial and autism-specific criteria, that includes lived experience, and to move to a strengths-based model and to eliminate ableism* (Hwang, et al, 2018).

Quality of life

Quality of life of older autistic people is a complex construct most frequently measured by the model developed by the World Health Organization (WHO), known as the WHOQoL-BREF. This model contains four domains, psychological, physical, social and environmental, is completed by self- report, and includes an individual’s perceptions of their lives in relation to their goals, expectations and concerns. Quality of life for autistic adults is often reported to be lower than that of the general population. Many studies have found that autistic people with a mental health condition had a lower quality of life (Mason, Mackintosh, McConachie, Rodgers, Finch, et al, 2019).

Mason et al (2019) interviewed five men and three women aged 55 years or older and focused on friendship, employment and independence as the most important factors influencing quality of life for older autistic people. They reported limited social interaction, difficulty in finding the right job regardless of having the right level of education, support needs around managing daily living tasks, as well as issues around managing many tasks at once (Mason et al, 2019).

The support needs of older autistic adults may not look the same as they do for neurotypical adults. Informal support rather than a formal support and providing the right environment to accommodate sensory needs may contribute to quality of life for autistic adults. This study has confirmed what we instinctively know – that in order to provide the right level of support for older autistic people, it is essential to understand the individual needs of this group (Mason, et al, 2019).

Does ageing well look different for autistic people compared with neurotypicals?

One of the aspects of quality of life defined by WHO is having ‘normative outcomes’, which is the achievement of life course goals considered important by the general population. Ageing well for neurotypical people includes employment, independent living and social engagement. But for some autistic people these goals are not seen as beneficial and may be associated with lower mental health, as friendships and employment may have both advantages and drawbacks as they can increase the stress level of the autistic person (Mason, et al, 2019).

Conclusion

In conclusion, future research should include the experiences and insights of older autistic adults to inform developing the right environment and support for individual autistic people, rather than making assumptions based on neurotypical expectations and experiences.

According to the 2018 New Zealand Census, – approximately 46% of the total population is over the age of 40. With an estimated one in 60 people on the autism spectrum across all ages, – there are at least 21,000 autistic people over the age of 40 in New Zealand. As our population approaches 5 million, the needs of these people, as a group and as individuals, should be a matter of specific, intentional concern for researchers, policy makers and service providers.

References:

Hwang, Y. I., Foley, K., & Trollor, J. N. (2018). Aging well on the Autism spectrum: An Examination of the Dominant Models of Successful Aging. Journal of Autism and developmental Disorders.
https://doi.org/10.1007/s10803-018-3596-8
Mason, D., Mackintosh, J., McConachie, H., Rodgers, J., Finch, T., & Parr, J. R. (2019). Quality of life for older autistic people: The impact of mental health difficulties. Journal of Research in Autism Spectrum Disorders. 63 (2019): 13-22
Roestorf, A., Bowler, D. M., Deserno, M. K., Howlin, P., Klinger, L., McConachie, H., Parr, J. R., Powell, P., Van Heijst, B. F. C., & Geurts, H. M. (2019). “Older Adults with ASD: The Consequences of Ageing.” Insights from a series of special interest group meetings held at the International Society for Autism Research 2016-2017. Journal of Research in Autism Spectrum Disorders. 63 (2019): 3-12

https://www.stats.govt.nz/information-releases/2018-census-population-and-dwelling-counts

*Ableism is discrimination and social prejudice against people with disabilities.

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