Workshop Report: Establishing Priority Research Areas to Improve the Physical Health and Well-Being of Autistic Adults and Older People

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Warner, G., Parr, J. R., & Cusack, J. (2018). Workshop Report: Establishing Priority Research Areas to Improve the Physical Health and Well-Being of Autistic Adults and Older People. Autism in Adulthood, 1(1), 20-26. https://doi.org/10.1089/aut.2018.0003

Publication date: 18 Apr 2018 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Georgina Warner
  2. Jeremy R. Parr
  3. James Cusack *

Abstract

Abstract Many serious medical conditions are more common in autistic adults than the general population. Yet, improving the physical health and well-being of autistic adults has not been a significant research focus to date. In collaboration with Newcastle University (the United Kingdom), Autistica (the United Kingdom's autism research charity) hosted a workshop bringing together autistic people, relatives, clinicians, managers, clinical commissioners, international researchers, and funders to establish priority research areas and catalyze research to improve the physical health and well-being of autistic people. This article provides an overview of the design and methods used at the workshop to maximize collaborative working, and summarizes the 11 priority research concepts that emerged. Lay Summary Many serious medical conditions are more common in autistic adults than in the general population. Yet, improving the physical health and well-being of autistic adults has not been a significant research focus to date. Autistica (the autism research charity in the United Kingdom [UK]) and clinical researchers from Newcastle University (the UK) identified a need to establish priority research areas and encourage research to improve the physical health and well-being of autistic people. To achieve this aim, both parties cohosted a workshop that brought together autistic people, relatives, clinicians, managers, clinical commissioners, international researchers, and funders from Europe, Australia, and the United States. Thirty-nine people attended the 2-day workshop, which was held at a venue with an appropriate environment for autistic people. Eleven research concepts that might be used to improve the physical health and well-being of autistic people were identified: 1. Tailoring of existing measures of pain to better suit autistic people. 2. An international collaborative effort to agree a core set of demographic, health behavior and health outcome indicators most relevant to autistic people that can be compared with general population data. 3. Investigation of health care self-advocacy strategies and potential barriers to effective health care self-advocacy for autistic people. 4. Development of a tool to improve understanding of how factors influence personal well-being for autistic people. 5. A review of evidence on autism-specific health service accommodations and service design to inform what an autism-friendly health service looks like. 6. Adaptation of an online health care “toolkit” developed in the United States to facilitate the primary health care of autistic adults for use in the UK. 7. Development and evaluation of a personalized annual health check program for autistic people. 8. Evaluation of the types of cardiovascular and gut problems most prominent in older autistic adults, contributory factors, and treatment effectiveness. 9. Engagement with autistic people regarding opportunities to use knowledge about genetics and biology to improve health and well-being. 10. Exploration of the research priorities regarding sexual development and health in autism. 11. Investigation of autistic people's use and experiences of residential facilities for older people. The research concepts require further refinement and development. Measuring the impact of the workshop against the primary aim of encouraging research to improve the physical health and well-being of autistic people will take some years. Should one or more projects lead to new knowledge and services that improve the health and well-being of autistic adults and older people, the workshop will have been a success.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
23
Total cited references integrated for this publication.
Cited references with an identified autistic author
1 / 23 (4.3%)
Cited author occurrences identified as autistic
3 / 94 (3.2%)
Among occurrences linked to AutiHub author records: 3 / 28 (10.7%). Distinct cited authors identified as autistic: 3 / 90 (3.3%).
Cited author occurrences linked to AutiHub author records
28 / 94 (29.8%)
Distinct linked cited authors: 25 / 90 (27.8%)
Linked cited-author occurrences not identified as autistic
25 / 28 (89.3%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 25 / 94 (26.6%). Distinct linked cited authors not identified as autistic: 22 / 25 (88.0%).
  1. F Warnell , B George , H McConachie , M Johnson , R Hardy , Jeremy R. Parr (2015). Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children with valid ASD diagnoses? BMJ Open, 5(9), e008625. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2015-008625 OpenAlex: https://openalex.org/W1939968976
    Crossref OpenAlex OpenCitations
  2. Tatja Hirvikoski , Ellenor Mittendorfer-Rutz , Marcus Boman , Henrik Larsson , Paul Lichtenstein , Sven Bölte (2016). Premature mortality in autism spectrum disorder . British Journal of Psychiatry, 208(3), 232-238. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.bp.114.160192 OpenAlex: https://openalex.org/W2168424072
    Crossref OpenAlex OpenCitations
  3. Jacob A. S. Vorstman , Jeremy R. Parr , Daniel Moreno-De-Luca , Richard J. L. Anney , John I. Nurnberger Jr , Joachim F. Hallmayer (2017). Autism genetics: opportunities and challenges for clinical translation . Nature Reviews Genetics, 18(6), 362-376. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrg.2017.4 OpenAlex: https://openalex.org/W2592063610
    Crossref OpenAlex OpenCitations
  4. Andrew Steptoe , Angus Deaton , Arthur A Stone (2015). Subjective wellbeing, health, and ageing . The Lancet, 385(9968), 640-648. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(13)61489-0 OpenAlex: https://openalex.org/W1970693737
    Crossref OpenAlex OpenCitations
  5. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  6. Victoria S.P. Lee , Jane Simpson , Katherine Froggatt (2013). A narrative exploration of older people's transitions into residential care . Aging & Mental Health, 17(1), 48-56. Informa UK Limited.
    Type: Article DOI: 10.1080/13607863.2012.715139 OpenAlex: https://openalex.org/W1992671759
    Crossref OpenAlex OpenCitations
  7. The Westminster Commission on Autism (2016). A Spectrum of Obstacles: An Inquiry into Access to Healthcare for Autistic People . A Spectrum of Obstacles: An Inquiry into Access to Healthcare for Autistic People.
    Type: Other
    Crossref
  8. Michael Marmot , Jessica J. Allen (2014). Social Determinants of Health Equity . American Journal of Public Health, 104(S4), S517-S519. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2014.302200 OpenAlex: https://openalex.org/W2030516648
    Crossref OpenAlex OpenCitations
  9. Andrew Cashin , Thomas Buckley , Julian N Trollor , Nicholas Lennox (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder . Journal of Intellectual Disabilities, 22(1), 96-108. SAGE Publications.
    Type: Article DOI: 10.1177/1744629516665242 OpenAlex: https://openalex.org/W2519892621
    Crossref OpenAlex OpenCitations
  10. Jeroen Dewinter , H. De Graaf , Sander Begeer (2017). Sexual Orientation, Gender Identity, and Romantic Relationships in Adolescents and Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(9), 2927-2934. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3199-9 OpenAlex: https://openalex.org/W2624183778
    Crossref OpenAlex OpenCitations
  11. Janet Robertson , Chris Hatton , Eric Emerson , Susannah Baines (2014). The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence . Research in Developmental Disabilities, 35(10), 2450-2462. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2014.06.007 OpenAlex: https://openalex.org/W2044154256
    Crossref OpenAlex OpenCitations
  12. Edel Tierney , Rachel McEvoy , Mary O'Reilly‐de Brún , Tomas de Brún , Ekaterina Okonkwo , Michelle Rooney et al. (2016). A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory . Health Expectations, 19(3), 501-515. Wiley.
    Type: Article DOI: 10.1111/hex.12237 OpenAlex: https://openalex.org/W2089944429
    Crossref OpenAlex OpenCitations
  13. Susanna Nordin , Kevin McKee , Maria Wallinder , Lena von Koch , Helle Wijk , Marie Elf (2017). The physical environment, activity and interaction in residential care facilities for older people: a comparative case study . Scandinavian Journal of Caring Sciences, 31(4), 727-738. Wiley.
    Type: Article DOI: 10.1111/scs.12391 OpenAlex: https://openalex.org/W2554594277
    Crossref OpenAlex OpenCitations
  14. (n.d.). Autistica. Involvement promise. 2017. www.autistica.org.uk/downloads/files/Autistica-Involvement-Promise. PDF; Last accessed February13 2018.
    Type: Other
    Crossref
  15. H McConachie , R Barry , A Spencer , L Parker , A Le Couteur , A Colver (2009). Daslne: the challenge of developing a regional database for autism spectrum disorder . Archives of Disease in Childhood, 94(1), 38-41. BMJ.
    Type: Article DOI: 10.1136/adc.2007.126326 OpenAlex: https://openalex.org/W2121686583
    Crossref OpenAlex OpenCitations
  16. Helen McConachie , David Mason , Jeremy R. Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the Validity of a Quality of Life Measure for Autistic People . Journal of Autism and Developmental Disorders, 48(5), 1596-1611. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3402-z OpenAlex: https://openalex.org/W2768942203
    Crossref OpenAlex OpenCitations
  17. Teresa Hagan , Margaret Rosenzweig , Kristin Zorn , G. Josie van Londen , Heidi Donovan (2017). Perspectives on Self-Advocacy: Comparing Perceived Uses, Benefits, and Drawbacks Among Survivors and Providers . Oncology Nursing Forum, 44(1), 52-59. Oncology Nursing Society (ONS).
    Type: Article DOI: 10.1188/17.onf.52-59 OpenAlex: https://openalex.org/W2576303083
    Crossref OpenAlex OpenCitations
  18. Elizabeth M. Saewyc (2011). Research on Adolescent Sexual Orientation: Development, Health Disparities, Stigma, and Resilience . Journal of Research on Adolescence, 21(1), 256-272. Wiley.
    Type: Article DOI: 10.1111/j.1532-7795.2010.00727.x OpenAlex: https://openalex.org/W2144570985
    Crossref OpenAlex OpenCitations
  19. Parr JR (2016). Autism Spectrum Disorder in Mid and Later Life . Autism Spectrum Disorder in Mid and Later Life, 288.
    Type: Other
    Crossref
  20. C. S. Allely (2013). Pain Sensitivity and Observer Perception of Pain in Individuals with Autistic Spectrum Disorder . The Scientific World Journal, 2013(1), 916178-916178. Wiley.
    Type: Article DOI: 10.1155/2013/916178 OpenAlex: https://openalex.org/W2165083688
    Crossref OpenAlex OpenCitations
  22. S.D. Wright , C. Wright (2017). AUTISM SPECTRUM DISORDER IN MID AND LATER LIFE . Innovation in Aging, 1(suppl_1), 1139-1139. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/geroni/igx004.4160 OpenAlex: https://openalex.org/W2412976368
    OpenAlex
  23. Grossman, Iris , Grech, Godfrey (2015). Preventive and Predictive Genetics: Towards Personalised Medicine . Springer International Publishing.
    Type: Book DOI: 10.1007/978-3-319-15344-5 OpenAlex: https://openalex.org/W2501004212
    Crossref OpenAlex OpenCitations