What you need to know:
Little is known about aging with Autism Spectrum Disorder. To better address the needs of individuals with autism into mid to later years, it seems important to incorporate a life course orientation in autism. It is also crucial to understand the diversity of experiences and potentially co-existing medical and mental health issues, in supporting quality of life.
What was this Think Tank About?
Despite research on older persons being available more generally, very little is known about aging for people with autism. Spearheaded by Autism Canada, the Pacific Autism Family Network, and the Autism Research Centre, theAutism in Later Life Think Tank was borne out of aims to address three issues which impact individuals, families, communities, and societies:
1) the increased prevalence of autism,
2) the process of autism and aging, and
3) demographic changes in aging societies.
What did the researchers do?
Over two days (October 28 & 29, 2017), 27 individuals from five countries with expertise in various areas of ASD and adulthood presented issues related to aging from the perspectives of adults on the spectrum, researchers, clinicians, service providers and other opinion leaders in autism. To better understand the needs of ASD in adulthood and later life, the Autism Think Tank group focused on three themes: 1) Understanding Aging on the Autism Spectrum, 2) Supporting Autistic Adults, and 3) Research Methodologies and Outcome Measures. For each theme, the group identified gaps and areas for additional research. A key goal was to incorporate a life course focus in autism, while also taking into account the vast diversity associated with both the aging process and autism, with the aim of considering impacts for support and intervention, programming, and policy development.
What did the researchers find?
Participants highlighted two overarching considerations in orienting future action: 1) attention to terminology, and 2) ensuring the principle of ‘nothing about us without us’. First, while there are many valid positions regarding preferred terminology, it is viewed as paramount to focus on the strengths and abilities of individuals on the spectrum, and view the challenges they experience as socially constructed, rather than deficit-based which can pathologize people and autism itself. Participants agreed to use identity-first language (e.g. ‘autistic adult’) or the more neutral phrase of “adults on the spectrum”. Also, the group recommended the term, ‘autism community’ in referencing families and extended communities, whereas ‘autistic community’ was noted as referring to the community of individuals on the spectrum. ‘Nothing about us without us’ encapsulates the importance of a person-centered approach whereby autistic individuals and their families play a central role in multidisciplinary teams and methodological aspects of research to ensure that the processes and outcomes of research are of direct benefit to them. Of particular importance, it was noted, is the need for team members and advisors on research projects to include people with lived experience, and represent diversity across the autism spectrum as well as to consider gender balance, ethnic diversity, and accommodations needed by those with communication and/or other challenges.
In presentations over the two days, themes related to aging on the autism spectrum included diagnosis in mid to later-life, co-occurring health and mental health conditions, and heterogeneity (diversity). To better understand the aging process in autistic adults, we must be able to locate older autistic adults. In so doing, it is imperative to consider factors which may hinder diagnosis—whether due to personal or social issues. Additionally, autistic adults must be viewed as a diverse group. It was noted that autistic individuals often experience co-occurring health and mental health issues. More research is needed to understand how co-occurring conditions may impact experience, and how that may change with age. Similarly, research is needed to better understand co-occurring mental health conditions and how they change over the life course, and how prescribed medication affects this population.
Supporting individuals on the autism spectrum in mid and later-life requires increasing awareness and understanding among society, and especially, it was argued, within the health care system. This is necessary to ensure greater knowledge about how to effectively accommodate the diverse needs of individuals on the spectrum. There was need noted to support autistic seniors to be physically active, seek and have access to social connections, and be adept at asking for help, especially with navigating community and health care systems. As it relates to transitions within the education system, there is a gap following transition from post-secondary to employment. The learning capacity of autistic individuals is ongoing, and adults on the spectrum may benefit from continued education. Affordable post-secondary education, ongoing training and greater employment and career options, were noted as warranted. Participants identified the need for more community-based resources and opportunities to minimize social isolation, promote inclusivity, and provide support for autistic adults and their families.
Under the theme of research methodologies and outcomes measures, participants identified the need for longitudinal research designs to better understand the aging process in adults on the autism spectrum. This would enable researchers to follow a cohort over decades, with the desired aim of evaluating factors such as mental health, physical health, and quality of life on a periodic basis. A strategy for moving forward was collaboration among international groups who are currently engaged in longitudinal studies, thereby leveraging resources and expertise in multi-site, multidisciplinary research programs.
Reference
Autism Canada, Autism Research Institute, & Pacific Autism Family Network. (2017). Aging and autism: A think tank roundtable [PDF file]. Retrieved from https://autismcanada.org/wp-content/uploads/2018/04/AC_2017-ThinkTank_Final.pdf
This summary was written by Patrice Walker, Research Assistant, in the Vocational Abilities Innovation Lab, Faculty of Social Work, University of Calgary.
Photo by Rod Long on Unsplash
