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Cited by 87Autism Spectrum Disorder ResearchDementia and Cognitive Impairment ResearchAging, Health, and Disability

“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

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Roestorf, A., Bowler, D.M., Deserno, M.K., Howlin, P., Klinger, L., McConachie, H., Parr, J.R., Powell, P. +2 more·2019·Research in Autism Spectrum Disorders
DOI 10.1016/j.rasd.2018.08.007PMC PMC6559228
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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.

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  • Although 'Infantile Autism' has become 'Autism Spectrum Disorder', there is still a paucity of research with adults and particularly with older adults (Roestorf et al, 2019).

    “Although 'Infantile Autism' has become 'Autism Spectrum Disorder', there is still a paucity of research with adults and particularly with older adults (Roestorf et al, 2019).”

    From Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research (2020) · cites this paper as Roestorf et al, 2019

    The Introduction (page not provided) says autism research has largely neglected older adults and that very little research has included them. It does not establish a comparable paucity of research on adults generally or discuss the change from “Infantile Autism” to “Autism Spectrum Disorder.” (LLM, conf=0.82)

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2 of the 106 references couldn’t be matched to a known paper.

Research works printed but not linked: 4

  1. Craik F.I. Rose N.S. Memory encoding and aging: A neurocognitive perspective Neuroscience and Biobehavioral Reviews 36 7 2012 1729 1739 22155274
  2. Parr J.R. How can we learn more about the lives of adults on the Autism Spectrum from across the age range, and their relatives? Scott Wright D. Autism spectrum disorder in mid and later life (Part VI, Ch. 19, pp. 288–296) 2016 Jessica Kingsley Publishers London
  3. Roestorf A. Bowler D.M. Ageing and psychological functioning in autism spectrum disorder Scott Wright D. Autism spectrum disorder in mid and later life (Part IV, Ch. 13, pp. 207–220) 2016 Jessica Kingsley Publishers London
  4. Starkstein S. Gellar S. Parlier M. Payne L. Piven J. High rates of Parkinsonism in adults with autism Journal of Neurodevelopmental Disorders 7 1 2015 29 26322138 PMC4553212

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Authors
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.
Affiliations
  • University of London (GB)
  • University of Amsterdam (NL)
  • The University of Sydney (AU)
  • University of North Carolina at Chapel Hill (US)
  • Newcastle University (GB)
  • Georgia Institute of Technology (US)
Corresponding author
Roestorf, A.
ORCID
Venue
Research in Autism Spectrum Disorders
Publisher
Elsevier BV
Published
2019-07
Volume
63
Pages
3-12
ISSN
  • 1878-0237 (ISSN-L)
  • 1750-9467
DOI
10.1016/j.rasd.2018.08.007
PMC
PMC6559228
OpenAlex
W2908068945
Cited by
87
References
106
Citations by year
2026: 12 · 2025: 12 · 2024: 13 · 2023: 8 · 2022: 18 · 2021: 14 · 2020: 8 · 2019: 2
FWCI
6.11
Type
journal article
Language
en
Open access
Licence
Locations
  • Research in Autism (publishedVersion, cc-by-nc-nd)
  • PubMed Central (publishedVersion, cc-by-nc-nd)
  • PubMed (publishedVersion)
  • City Research Online (City University London) (acceptedVersion)
  • UvA-DARE (University of Amsterdam) (submittedVersion, cc-by-nc-nd)
  • Stirling Online Research Repository (University of Stirling) (submittedVersion, cc-by-nc-nd)
  • Griffith Research Online (submittedVersion, cc-by-nc-nd)
  • Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
  • Newcastle University ePrints (Newcastle Univesity) (cc-by-nc-nd)
Funders
  • Medical Research Council (MR/ K016911/1)
  • King's College London
  • Newcastle University
  • University of London
  • International Society for Autism Research
  • School of Medicine, University of North Carolina at Chapel Hill
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Aging, Health, and Disability
Keywords
autism spectrum disorder, older adults, aging, cognitive change, quality of life, well-being, diagnostic assessment, evaluation metrics, care needs, premature mortality, research agenda

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