Les personnes autistes âgées, l'accès aux services et leurs expériences des services, et les facteurs qui influencent cela

Titre original en anglais : Older Autistic People, Access and Experiences of Services, and the Factors That Affect This

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref OpenCitations
En savoir plus sur les sources utilisées

Hersh, M., Mery, P., & Dawson, M. E. (2024). Older Autistic People, Access and Experiences of Services, and the Factors That Affect This. International Journal of Environmental Research and Public Health, 21(11), 1535. https://doi.org/10.3390/ijerph21111535

Date de publication: 19/11/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Marion Hersh
  2. Panda Mery *
  3. Michael E. Dawson

Résumé

Cet article présente de nouvelles données empiriques obtenues à partir d'entretiens et de groupes de discussion sur les expériences de personnes autistes âgées (de 50 ans et plus) en matière d'accès à une variété de services. La participation des personnes autistes âgées et le fait de donner voix à leurs expériences étaient au cœur de tous les aspects du processus de recherche. Ce travail apporte une contribution importante à la littérature limitée sur les personnes autistes âgées. En particulier, il examine les facteurs qui agissent comme obstacles et facilitateurs de l'accès aux services et de leur utilisation productive, les stratégies utilisées par les participants pour gérer et améliorer leurs expériences, ainsi que le succès de ces stratégies. Il présente les personnes autistes âgées comme des adultes autonomes et des protagonistes actifs de leur propre vie, agissant pour surmonter les obstacles qu'elles rencontrent pour accéder aux services aux mêmes conditions que tout le monde, mais le manque de compréhension et de soutien de la part des prestataires de services et du grand public peut compromettre leurs stratégies. Enfin, ce travail fournit une série de recommandations aux prestataires de services afin d'améliorer l'accès aux services et les expériences des personnes autistes âgées.

This paper presents new empirical data obtained from interviews and focus groups on older (50 and over) autistic people's experiences of accessing a variety of services. The involvement of older autistic people and giving voice to their experiences was central to all aspects of the research process. This work makes a significant contribution to the scarce literature on older autistic people. In particular, it discusses the factors that act as barriers and enablers to the access to and productive use of services, the strategies used by participants to manage and improve their experiences, and the success of these strategies. It shows older autistic people as autonomous adults and active protagonists in their own lives, taking action to overcome the barriers they experience to accessing services on the same terms as everyone else, but that lack of understanding and support from service providers and the general public can undermine their strategies. Finally, this work provides a series of recommendations for service providers to improve (older) autistic people's service access and experiences.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:31.

Références citées
47
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 47 (17,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
20 / 176 (11,4 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 20 / 98 (20,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 11 / 139 (7,9 %).
Occurrences citées rattachées à la base AutiHub
98 / 176 (55,7 %)
Auteurices cité·es distinct·es rattaché·es : 67 / 139 (48,2 %)
Occurrences rattachées, non identifiées comme autistes
78 / 98 (79,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 78 / 176 (44,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 56 / 67 (83,6 %).
  1. David Marks , Lucy Yardley (2004). Research Methods for Clinical and Health Psychology . SAGE Publications, Ltd.
    Type: Livre DOI: 10.4135/9781849209793 OpenAlex: https://openalex.org/W1552040706
    Crossref OpenAlex OpenCitations
  2. (s. d.). Eurostat (2024, August 21). Population on 1 January by Age Group and Sex. Available online: https://ec.europa.eu/eurostat/databrowser/view/DEMO_PJANGROUP__custom_1269323/bookmark/table?lang=en&bookmarkId=66c88f91-bde0-4606-abbd-bd1a65c8224a .
    Type: Autre
    Crossref
  3. Janette Dinishak (2016). The Deficit View and Its Critics . Disability Studies Quarterly, 36(4). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v36i4.5236 OpenAlex: https://openalex.org/W2559516930
    Crossref OpenAlex OpenCitations
  5. Marco Carotenuto (2023). Autism Spectrum Disorders - Recent Advances and New Perspectives . IntechOpen.
    Type: Livre DOI: 10.5772/intechopen.100837 OpenAlex: https://openalex.org/W4295555251
    Crossref OpenAlex OpenCitations
  6. Hilde M. Geurts , Goldie A. McQuaid , Sander Begeer , Gregory L. Wallace (2022). Self-reported parkinsonism features in older autistic adults: A descriptive study . Autism, 26(1), 217-229. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211020183 OpenAlex: https://openalex.org/W3163402282
    Crossref OpenAlex OpenCitations
  7. Lydia Jones , Lorna Goddard , Elisabeth L. Hill , Lucy A. Henry , Laura Crane (2014). Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom . Journal of Autism and Developmental Disorders, 44(12), 3033-3044. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2161-3 OpenAlex: https://openalex.org/W2032693111
    Crossref OpenAlex OpenCitations
  8. Roeliena C.D. Davids , Yvonne Groen , Ina J. Berg , Oliver Tucha , Ingrid D.C. van Balkom (2020). Local-global processing approaches in older autistic adults: A matched control study using RCFT and WAIS-IV . Research in Autism Spectrum Disorders, 78, 101655. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2020.101655 OpenAlex: https://openalex.org/W3087328702
    Crossref OpenAlex OpenCitations
  9. Keren MacLennan , Catherine Woolley , Emily andsensory , Brett Heasman , Jess Starns , Becky George et al. (2023). “It Is a Big Spider Web of Things”: Sensory Experiences of Autistic Adults in Public Spaces . Autism in Adulthood, 5(4), 411-422. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0024 OpenAlex: https://openalex.org/W4297473207
    Crossref OpenAlex OpenCitations
  11. Venus W. S. Tse , Jason Crabtree , Shamsun Islam , Joshua Stott (2019). Comparing Intellectual and Memory Abilities of Older Autistic Adults with Typically Developing Older Adults Using WAIS-IV and WMS-IV . Journal of Autism and Developmental Disorders, 49(10), 4123-4133. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04122-w OpenAlex: https://openalex.org/W2969780344
    Crossref OpenAlex OpenCitations
  12. Andrea Lubin , Cecilia Feeley (2016). Transportation Issues of Adults on the Autism Spectrum . Transportation Research Record: Journal of the Transportation Research Board, 2542(1), 1-8. SAGE Publications.
    Type: Article DOI: 10.3141/2542-01 OpenAlex: https://openalex.org/W2219405871
    Crossref OpenAlex OpenCitations
  13. Marisse Sonido , Samuel R. C. Arnold , Julianne M. Higgins * , Ye In Hwang (2020). Autism in Later Life: What Is Known and What Is Needed? Current Developmental Disorders Reports, 7(2), 69-77. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40474-020-00192-z OpenAlex: https://openalex.org/W3022783571
    AutiHub · Chercheur·euses autistes Crossref OpenAlex OpenCitations
  15. Devajyoti Deka , Cecilia Feeley , Andrea Lubin (2016). Travel Patterns, Needs, and Barriers of Adults with Autism Spectrum Disorder . Transportation Research Record: Journal of the Transportation Research Board, 2542(1), 9-16. SAGE Publications.
    Type: Article DOI: 10.3141/2542-02 OpenAlex: https://openalex.org/W2267591384
    Crossref OpenAlex OpenCitations
  17. Brittany N. Hand , Amber M Angell , Lauren Harris , Laura Arnstein Carpenter (2020). Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults . Autism, 24(3), 755-764. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319890793 OpenAlex: https://openalex.org/W2990129335
    Crossref OpenAlex OpenCitations
  18. Marie Elwin , Agneta Schröder , Lena Ek , Tuula Wallsten , Lars Kjellin (2017). Sensory Clusters of Adults With and Without Autism Spectrum Conditions . Journal of Autism and Developmental Disorders, 47(3), 579-589. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2976-1 OpenAlex: https://openalex.org/W2549436065
    Crossref OpenAlex OpenCitations
  19. Lena Nylander , Anna Axmon , Petra Björne , Gerd Ahlström , Christopher Gillberg (2018). Older Adults with Autism Spectrum Disorders in Sweden: A Register Study of Diagnoses, Psychiatric Care Utilization and Psychotropic Medication of 601 Individuals . Journal of Autism and Developmental Disorders, 48(9), 3076-3085. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3567-0 OpenAlex: https://openalex.org/W2802814959
    Crossref OpenAlex OpenCitations
  20. Nathan J. Wilson , Ashley Stevens , Preeyaporn Srasuebkul , Michelle Kersten , Zhen Lin , Julian N Trollor et al. (2021). Exploring the relationship between community mobility and quality of life, employment and completing further education for autistic adults . Journal of Transport & Health, 22, 101117. Elsevier BV.
    Type: Article DOI: 10.1016/j.jth.2021.101117 OpenAlex: https://openalex.org/W3177726804
    Crossref OpenAlex OpenCitations
  22. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Livre DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex OpenCitations
  23. Stephanie J. Wilson (2017). How is counselling experienced by people with Asperger's syndrome?: A qualitative study . UWE Research Repository (UWE Bristol).
    Type: Thèse OpenAlex: https://openalex.org/W2592952701
    OpenAlex
  24. Venus W. S. Tse , Jiedi Lei , Jason Crabtree , Will Mandy , Joshua Stott (2022). Characteristics of Older Autistic Adults: a Systematic Review of Literature . Review Journal of Autism and Developmental Disorders, 9(2), 184-207. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-021-00238-x OpenAlex: https://openalex.org/W3162978985
    Crossref OpenAlex OpenCitations
  25. Silvana Unigwe , Carole Buckley , Laura Crane , Lorcan Kenny , Anna Remington , Elizabeth Pellicano (2017). GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study . British Journal of General Practice, 67(659), e445-e452. Royal College of General Practitioners.
    Type: Article DOI: 10.3399/bjgp17x690449 OpenAlex: https://openalex.org/W2614102167
    Crossref OpenAlex OpenCitations
  26. (s. d.). Office of National Statistics (2024, August 22). Office of National Statistics Outcomes for Disabled People in the UK, Available online: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2020 .
    Type: Autre
    Crossref
  27. (s. d.). Paradiz, V. (2024, August 21). Autism, Identity and Employment, Transcending the Obstacles of the Working World. Autism Advocate, 1st ed. Available online: https://www.rwjbh.org/documents/csh/kohls/autism-identity-employment.pdf .
    Type: Autre
    Crossref
  29. Jonathan A. Weiss , Michelle A. Fardella (2018). Victimization and Perpetration Experiences of Adults With Autism . Frontiers in Psychiatry, 9, 203-203. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2018.00203 OpenAlex: https://openalex.org/W2802963031
    Crossref OpenAlex OpenCitations
  30. Milton, D., Ridout, S., Martin, N., Mills, R., and Murray, D. (2020). Accessing services and social interaction: Strategies used by autistic people. Neurodiversity Reader, Pavilion Publishing. Chapter 27.
    Type: Autre
    Crossref
  31. Pia Bradshaw , Elizabeth Pellicano , Mieke van Driel , Anna Urbanowicz (2019). How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability? Current Developmental Disorders Reports, 6(2), 45-56. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40474-019-00159-9 OpenAlex: https://openalex.org/W2944177211
    Crossref OpenAlex OpenCitations
  33. PARC (Undated) (2024, July 30). Participatory Autism Research Collective. Available online: https://participatoryautismresearch.wordpress.com/ .
    Type: Autre
    Crossref
  34. Milton, D., Ridout, S., Martin, N., Mills, R., and Murray, D. (2020). Neurodiversity Reader, Pavilion Publishing.
    Type: Autre
    Crossref
  35. Annuska Zolyomi , Andrew Begel , Jennifer Frances Waldern , John Tang , Michael Barnett , Edward Cutrell et al. (2019). Managing Stress . Proceedings of the ACM on Human-Computer Interaction, 3(CSCW), 1-29. Association for Computing Machinery (ACM).
    Type: Article DOI: 10.1145/3359236 OpenAlex: https://openalex.org/W2970436446
    Crossref OpenAlex OpenCitations
  36. (s. d.). AASPIRE (2024, July 30). Academic Autism Partnership in Research and Education. Available online: https://aaspire.org/ .
    Type: Autre
    Crossref
  37. Portland State University , Heidi Morgan (2019). Connections Between Sensory Sensitivities in Autism; the Importance of Sensory Friendly Environments for Accessibility and Increased Quality of Life for the Neurodivergent Autistic Minority . PSU McNair Scholars Online Journal, 13(1), 11. Portland State University Library.
    Type: Article DOI: 10.15760/mcnair.2019.13.1.11 OpenAlex: https://openalex.org/W2991002410
    Crossref OpenAlex
  38. Marion Hersh , Sharon Elley , Zyggy Banks , Panda Mery * , Michael E. Dawson , David Cowan et al. (2020). Accessing services and social interaction: strategies used by autistic people . ENLIGHTEN (Jurnal Bimbingan dan Konseling Islam).
    Type: Article OpenAlex: https://openalex.org/W3000033757
    OpenAlex
  39. Lidan Zheng , Kitty‐Rose Foley , Rachel Grove , Kieran Elley , Scott Andrew Brown , Dawn-Joy Leong et al. (2022). The use of everyday and assistive technology in the lives of older autistic adults . Autism, 26(6), 1550-1562. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211058519 OpenAlex: https://openalex.org/W3217601303
    Crossref OpenAlex OpenCitations
  40. Philippa L Howard , Felicity Sedgewick (2021). ‘Anything but the phone!’: Communication mode preferences in the autism community . Autism, 25(8), 2265-2278. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211014995 OpenAlex: https://openalex.org/W3176767872
    Crossref OpenAlex OpenCitations
  41. Beth Pfeiffer , Wei Song , Amber Davidson , Mark Salzer , Cecilia Feeley , Lindsey Shea (2024). Transportation Use and Barriers for Employed and Unemployed Autistic Adults . Autism in Adulthood, 6(2), 241-246. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0069 OpenAlex: https://openalex.org/W4385578320
    Crossref OpenAlex OpenCitations
  42. (s. d.). Westminster Commission on Autism (2024, October 10). A Spectrum of Obstacles: An Inquiry into Access to Healthcare for Autistic People. Available online: https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autism-report-july-2016.pdf .
    Type: Autre
    Crossref
  43. Wilson, S. (2017). How Is Counselling Experienced by People with Asperger’s Syndrome?: A Qualitative Study. [Doctoral Dissertation, University of the West of England].
    Type: Autre
    Crossref
  44. Rebecca A. Charlton , Goldie A. McQuaid , Gregory L. Wallace (2024). Exploring the effects of age and sex on sensory sensitivities in middle and older aged autistic adults . Research in Autism Spectrum Disorders, 117, 102460. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2024.102460 OpenAlex: https://openalex.org/W4401261100
    Crossref OpenAlex OpenCitations
  45. Simpson (2020). Creating accessible healthcare environments for people with autism . Nurs. Times, 116, 48.
    Type: Autre
    Crossref
  46. (s. d.). (2023, August 14). Office for National Statistics (ONS) Released 3 April 2023, ONS Website, Article, Profile of the Older Population Living in England and Wales in 2021 and Changes Since 2011, Available online: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/ageing/articles/profileoftheolderpopulationlivinginenglandandwalesin2021andchangessince2011/2023-04-03 .
    Type: Autre
    Crossref
  47. Anon (Undated) (2024, July 24). How Often Are Quiet Coaches Actually Quiet. Available online: https://www.railforums.co.uk/threads/how-often-are-quiet-coaches-actually-quiet . 245317/.
    Type: Autre
    Crossref