"Older Adults with ASD: The Consequences of Aging." Insights from a series of special interest group meetings held at the International Society for Autism Research 2016-2017.
Use the new 50-plus autism assessment battery to collect data that can stack up worldwide.
01Research in Context
What this study did
Researchers ran global meetings at the 2016-2017 International Society for Autism Research.
They asked one question: how should we study older autistic adults?
Stakeholders agreed on a cut-off age and picked common tools for diagnosis, thinking, and quality of life.
What they found
The group settled on age 50 and up as “older” for autism research.
They listed the same tests every future study should use so data can be compared.
How this fits with other research
Costa et al. (2017) did a similar job for adults with intellectual disability and dementia. Their 2017 word list came first; the 2019 autism list copies the idea for a new group.
Titlestad et al. (2019) says most health surveys still leave out adults with IDD. The new autism tool set answers that call by giving clear items to add to future surveys.
Beadle-Brown et al. (2002) showed social traits stay fixed in 93 % of adults with ASD. Stable traits mean the same test can work for decades, so the 2019 battery makes sense.
Why it matters
You now have a ready-made assessment pack for clients over 50. Use the agreed tools when you write reports, apply for funding, or join multi-site studies. Shared measures let you compare your client’s scores with global data and spot age-linked changes faster.
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02At a glance
03Original abstract
A special interest group (SIG) entitled "Older Adults with ASD: The Consequences of Aging" was held at the International Society for Autism Research (INSAR) annual meetings in 2016 and 2017. The SIG and subsequent meetings brought together, for the first time, international delegates who were members of the autistic community, researchers, practitioners and service providers. Based on aging autism research that is already underway in UK, Europe, Australia and North America, discussions focussed on conceptualising the parameters of aging when referring to autism, and the measures that are appropriate to use with older adults when considering diagnostic assessment, cognitive factors and quality of life in older age. Thus, the aim of this SIG was to progress the research agenda on current and future directions for autism research in the context of aging. A global issue on how to define 'aging' when referring to ASD was at the forefront of discussions. The 'aging' concept can in principle refer to all developmental transitions. However, in this paper we focus on the cognitive and physical changes that take place from mid-life onwards. Accordingly, it was agreed that aging and ASD research should focus on adults over the age of 50 years, given the high rates of co-occurring physical and mental health concerns and increased risk of premature death in some individuals. Moreover, very little is known about the cognitive change, care needs and outcomes of autistic adults beyond this age. Discussions on the topics of diagnostic and cognitive assessments, and of quality of life and well-being were explored through shared knowledge about which measures are currently being used and which background questions should be asked to obtain comprehensive and informative developmental and medical histories. Accordingly, a survey was completed by SIG delegates who were representatives of international research groups across four continents, and who are currently conducting studies with older autistic adults. Considerable overlap was identified across different research groups in measures of both autism and quality of life, which pointed to combining data and shared learnings as the logical next step. Regarding the background questions that were asked, the different research groups covered similar topics but the groups differed in the way these questions were formulated when working with autistic adults across a range of cognitive abilities. It became clear that continued input from individuals on the autism spectrum is important to ensure that questionnaires used in ongoing and future are accessible and understandable for people across the whole autistic spectrum, including those with limited verbal abilities.
Research in autism spectrum disorders, 2019 · doi:10.1016/j.rasd.2018.08.007