Exploring Lived Experiences of Receiving a Diagnosis of Autism in Adulthood: A Systematic Review.

Juwayriyah M Nayyar, Alison V Stapleton, Suzanne Guerin, Cliodhna O'Connor
Author Information
  1. Juwayriyah M Nayyar: School of Psychology, University College Dublin, Dublin, Ireland.
  2. Alison V Stapleton: School of Psychology, University College Dublin, Dublin, Ireland. ORCID
  3. Suzanne Guerin: School of Psychology, University College Dublin, Dublin, Ireland.
  4. Cliodhna O'Connor: School of Psychology, University College Dublin, Dublin, Ireland. ORCID

Abstract

Background: Growing numbers of adults are seeking and receiving Autism diagnoses. This systematic review collates, evaluates, and synthesizes evidence on the lived experiences of receiving a diagnosis of Autism in adulthood.
Methods: A keyword-search was performed on six databases, with results systematically screened to identify relevant studies. Data extracted from the studies were analyzed using thematic synthesis.
Results: Initial searches produced 12,785 articles, 26 of which were included and subjected to thematic synthesis. We identified two meta-themes: , related to (1) events that prompted diagnosis, (2) struggling to get a diagnosis, (3) haphazard supports, (4) costs of a late diagnosis, and (5) stigma; and , involving (1) emotional reactions to diagnosis, and (2) forging an autistic identity.
Discussion: While diagnosis can grant understanding, acceptance, and community, autistic adults continue to struggle with stigma, regret, and inadequate support post-diagnosis. Understanding the first-person perspectives of those who have acquired an Autism diagnosis in adulthood is vital in developing sensitive and effective assessment and support services for adults.

Keywords

References

  1. Autism Res. 2012 Feb;5(1):1-2 [PMID: 22162402]
  2. Autism Adulthood. 2021 Mar 1;3(1):52-60 [PMID: 36601266]
  3. Clin Psychol Rev. 2021 Nov;89:102080 [PMID: 34563942]
  4. Autism. 2024 Apr;28(4):843-853 [PMID: 37345517]
  5. Eur Arch Psychiatry Clin Neurosci. 2022 Mar;272(2):187-198 [PMID: 32892291]
  6. J Abnorm Child Psychol. 2020 Aug;48(8):979-993 [PMID: 32447487]
  7. BMC Med Res Methodol. 2008 Jul 10;8:45 [PMID: 18616818]
  8. Arch Gen Psychiatry. 2011 May;68(5):459-65 [PMID: 21536975]
  9. Autism. 2017 Aug;21(6):670-677 [PMID: 28749234]
  10. Autism. 2016 Jul;20(5):628-34 [PMID: 26825959]
  11. J Autism Dev Disord. 2021 Nov;51(11):4129-4146 [PMID: 33502713]
  12. Autism Adulthood. 2022 Dec 1;4(4):340-356 [PMID: 36777372]
  13. J Autism Dev Disord. 2009 Jan;39(1):142-8 [PMID: 18600440]
  14. J Appl Psychol. 2016 Mar;101(3):430-49 [PMID: 26595753]
  15. Curr Psychol. 2022 Aug 3;:1-17 [PMID: 35967496]
  16. Autism. 2016 May;20(4):442-62 [PMID: 26134030]
  17. Soc Sci Med. 2018 Sep;212:94-119 [PMID: 30029092]
  18. Clin Child Fam Psychol Rev. 2014 Mar;17(1):67-84 [PMID: 23836119]
  19. J Autism Dev Disord. 2017 Aug;47(8):2410-2424 [PMID: 28516422]
  20. Eur Arch Psychiatry Clin Neurosci. 2013 Nov;263 Suppl 2:S189-96 [PMID: 24105433]
  21. J Autism Dev Disord. 2019 May;49(5):1899-1911 [PMID: 30627892]
  22. J Autism Dev Disord. 2024 Feb;54(2):518-531 [PMID: 36409392]
  23. Autism. 2020 Aug;24(6):1311-1327 [PMID: 32106698]
  24. BMJ. 2021 Mar 29;372:n71 [PMID: 33782057]
  25. Health Psychol Behav Med. 2019 Nov 6;7(1):348-361 [PMID: 34040855]
  26. J Autism Dev Disord. 2014 Dec;44(12):3033-44 [PMID: 24915932]
  27. Autism. 2015 Oct;19(7):771-3 [PMID: 26649371]
  28. Autism. 2023 May;27(4):905-915 [PMID: 36154304]
  29. Autism Res. 2019 Mar;12(3):370-374 [PMID: 30803153]
  30. Lancet Psychiatry. 2015 Nov;2(11):1013-27 [PMID: 26544750]
  31. Sociol Health Illn. 2015 Feb;37(2):255-69 [PMID: 25677601]
  32. J Autism Dev Disord. 2019 Jun;49(6):2389-2402 [PMID: 30790191]
  33. J Autism Dev Disord. 2018 Nov;48(11):3761-3772 [PMID: 29948530]
  34. Autism. 2021 Aug;25(6):1771-1783 [PMID: 34011188]
  35. J Autism Dev Disord. 2012 Sep;42(9):1967-73 [PMID: 22271196]
  36. J Am Acad Child Adolesc Psychiatry. 2017 Jun;56(6):466-474 [PMID: 28545751]
  37. J Autism Dev Disord. 2021 Mar;51(3):798-803 [PMID: 30302595]
  38. J Autism Dev Disord. 2024 Mar;54(3):1157-1170 [PMID: 36484961]
  39. Arch Psychiatr Nurs. 2016 Oct;30(5):575-80 [PMID: 27654240]
  40. Health Soc Care Community. 2020 Nov;28(6):1928-1941 [PMID: 32667097]
  41. J Soc Work Disabil Rehabil. 2017 Jan-Mar;16(1):54-73 [PMID: 28187695]
  42. Intellect Dev Disabil. 2012 Apr;50(2):120-8 [PMID: 22642966]
  43. J Ment Health. 2022 Feb;31(1):115-130 [PMID: 34008456]
  44. Lancet Psychiatry. 2018 Sep;5(9):747-764 [PMID: 29680468]
  45. Front Psychol. 2022 Mar 07;13:831628 [PMID: 35369218]
  46. Int J Geriatr Psychiatry. 2012 Feb;27(2):109-18 [PMID: 21538534]
  47. Int J Ment Health Nurs. 2016 Aug;25(4):346-54 [PMID: 26940281]
  48. J Child Psychol Psychiatry. 2017 Jul;58(7):859-861 [PMID: 28621486]
  49. Autism. 2018 Apr;22(3):357-367 [PMID: 29153003]
  50. Autism. 2020 Oct;24(7):1704-1712 [PMID: 32431157]
  51. J Autism Dev Disord. 2016 Oct;46(10):3281-94 [PMID: 27457364]
  52. J Autism Dev Disord. 2022 Feb;52(2):800-810 [PMID: 33788076]
  53. Autism. 2009 May;13(3):265-83 [PMID: 19369388]
  54. Lancet Psychiatry. 2019 Sep;6(9):766-777 [PMID: 31350208]
  55. J Autism Dev Disord. 2020 Feb;50(2):592-602 [PMID: 31713072]

Word Cloud

Created with Highcharts 10.0.0diagnosisautismadultsadulthoodreceivinglivedexperiencesstudiesthematicsynthesis12stigmaautisticsupportBackground:GrowingnumbersseekingdiagnosessystematicreviewcollatesevaluatessynthesizesevidenceMethods:keyword-searchperformedsixdatabasesresultssystematicallyscreenedidentifyrelevantDataextractedanalyzedusingResults:Initialsearchesproduced12785articles26includedsubjectedidentifiedtwometa-themes:relatedeventspromptedstrugglingget3haphazardsupports4costslate5involvingemotionalreactionsforgingidentityDiscussion:cangrantunderstandingacceptancecommunitycontinuestruggleregretinadequatepost-diagnosisUnderstandingfirst-personperspectivesacquiredvitaldevelopingsensitiveeffectiveassessmentservicesExploringLivedExperiencesReceivingDiagnosisAutismAdulthood:SystematicReview

Similar Articles

Cited By

No available data.