In this research summary, researchers from the UK gave a presentation focusing on the impact of social connectedness and loneliness on mental health and quality of life. The researchers found that loneliness and a lack of social connectedness were significantly associated with lower quality of life for autistic seniors. This summary includes links to a questionnaire used to assess loneliness that may be helpful in starting conversations with your doctor.
The International Society for Autism Research (INSAR) is the largest autism research conference in the world. This year’s conference took place May 3-6, 2023 and was held in Stockholm, Sweden.
There has been a push in recent years to elevate autistic voices and the “nothing about us without us” movement has led to additional events to provide a platform for autistic individuals to share their perspectives. This year also had multiple presentation and poster sessions devoted to exploring aging in autism and how to better support Autistic people as they enter their senior years. Topics for research panel sessions are chosen based on proposals around the world that are in line with the stated goals of the INSAR community.
INSAR 2023 Session:
Aging in Autism
Being Connected – The Influence of Social Connectedness on Quality of Life and Mental Health in Midlife and Older Age (#302-004)
G. R. Stewart, University College London
R. A. Charlton, Goldsmiths University of London; F. Happe, King’s College London
There are relatively few research studies that examine the experiences of older Autistic adults (age 50+). In fact, a 2017 review of the literature estimated that only 3.5% of published research on autism focused on adults of any age1. There are many possible reasons for this lack of attention by researchers in the past – one being the mistaken assumption that autism was solely a childhood disorder. As we know now, autism is a neurological difference that does not go away simply because one reaches adulthood. Some other reasons for the lack of research on older Autistic adults is that when people in this age group were children, autism was a relatively unknown diagnosis. Those that were diagnosed with autism as children were often people with co-occurring speech delays or intellectual disabilities. Others were misdiagnosed with other mental health conditions or personality disorders. It is for these reasons that many who do not have intellectual disabilities or language delays did not receive an autism diagnosis until much later in life.
Now that more research attention is being paid to older Autistic adults, there is interest in understanding what sort of outcomes they have regarding quality of life. Of the relatively few studies that do include older Autistic adults and look at quality of life, the findings are mixed. A 2020 meta-analysis (meaning planned comparison of all studies on a specific topic) found that in terms of employment, social relationships, and living situation, 18% of participants had 'good' outcomes, 28% had 'fair' outcomes, and 51% had 'poor' outcomes2. As Dr. Howlin said at her keynote address on May 6 at INSAR, it is important to note that what neurotypical people assume is a 'good' outcome may not be in line with what Autistic people themselves define as 'good'. For instance, living independently may be something that neurotypical people value, but may not be necessary for an Autistic person to feel 'good' about their living situation. We should be cautious in using neurotypical definitions/standards to define quality of life outcomes.
INSAR presentation: How does social connection relate to mental health in older autistic adults?
Despite the mixed findings in outcome research described above, one aspect of quality of life that has shown some consistency is that older Autistic adults are more likely to struggle with their mental health. The presenting researchers decided to explore the relationship between feeling a sense of social connection, mental health, and quality of life. Social connectedness is a feeling of belonging and psychological bond people feel in relation to those around them. When one does not feel connected, they may experience social isolation. Previous research has shown that social isolation is a commonly described experience of Autistic people throughout childhood and into adulthood.
The presenting researchers looked at data from the AgeWellAutism study, a study looking at adults in the UK between the ages of 40-93. Participants were asked to fill out a number of questionnaires related to quality of life, depression, anxiety, loneliness, and social connectedness. Participants were also asked open-ended questions about factors impacting their quality of life. Analysis of both the questionnaire data and open-ended responses revealed that Autistic people in mid- and later-life reported greater rates of depression, anxiety, and feelings of social isolation and loneliness compared to their neurotypical peers. There were no differences between Autistic males and females in regards to overall quality of life, anxiety, and depression, but Autistic females did report greater feelings of social isolation and loneliness. The participants that had better social connection also measured highest on quality of life measures, suggesting that feeling connected to others is an important component of feeling satisfied with one’s life. The authors concluded that if we want to improve an Autistic person’s quality of life in their senior years, it is important to improve their feelings of social connectedness. How best to target social connectedness in Autistic adults is an important area to focus on in future research.
How can we measure social connectedness and loneliness?
There are multiple questionnaires that clinicians and researchers may use to measure different aspects of quality of life and mental health. Some of these tools are only available to researchers or require payment. While the Lubben Social Connection Scale was one of the measures used in this study, using it requires permission from the researchers who created it. The study also included the UCLA Loneliness Scale V3, which is available for free online.
The UCLA Loneliness Scale V3 measures subjective feelings of loneliness and isolation3. It has 20 questions about how often a person feels a certain way on a scale of 1-4, where 1 is 'Never' and 4 is 'Always'. Specific questions (1, 5, 6, 9, 10, 15, 16, 19, and 20) are reverse scored, meaning that an answer of 'Never' should be given a score of 4 and 'Always' should be given a score of 1. Reverse scoring is considered a best practice for questionnaires as it ensures a more complete measurement of a person’s beliefs and picks up on whether a responder is answering carelessly (e.g., answering 'always' each time without reading the actual questions). Higher scores indicate greater degrees of loneliness.
To access this questionnaire and scoring guide, please go to the following links:
What can I do with this information?
As previously mentioned, this questionnaire can be helpful for starting a conversation with your doctor or psychologist. You can discuss your loneliness with them and ask for support in either accessing additional healthcare professionals or resources.
According to a 2020 clinical review in Canadian Family Physician4, people can improve their feelings of loneliness and social isolation by trying some of the following: - Becoming part of social clubs or day programs – find a club that focuses on some of your interests - Psychological therapy – including mindfulness-based therapies, group and individual therapy may help - Spending time with animals – volunteering to work with animals, getting a pet - Physical health and activities – exercise classes, nutrition classes - Leisure and skill development activities – gardening, computer classes, music lessons
- Howlin P, Magiati I. (2017) Autism Spectrum Disorder: Outcomes in adulthood. Current Opinion in Psychiatry. 30(2):69–76.
- Mason, D., Capp, S. J., Stewart, G. R., Kempton, M. J., Glaser, K., Howlin, P., & Happé, F. (2021). A meta-analysis of outcome studies of autistic adults: Quantifying effect size, quality, and meta-regression. Journal of Autism and Developmental Disorders, 51, 3165-3179.
- Russell, D. W. (1996). UCLA Loneliness Scale (Version 3): Reliability, validity, and factor structure. Journal of personality assessment, 66 (1), 20-40.
- Freedman, A., Nicolle, J. (2020) Social isolation and loneliness: The new geriatric giants – approach for primary care. Canadian Family Physician. Vol. 66: March 2020. Link: https://www.cfp.ca/content/cfp/66/3/176.full.pdf
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