Understanding Barriers to Assessment and Diagnosis of Autism in Adulthood: Where Are We Now and How Do We Move Forward?

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Rabba, A. S., Lampinen, L. A., Meldrum, P., Dwyer, P., South, M., Taylor, L., Uljarevic, M., & Bal, V. (2025). Understanding Barriers to Assessment and Diagnosis of Autism in Adulthood: Where Are We Now and How Do We Move Forward? Autism Research, 18(12), 2362-2367. https://doi.org/10.1002/aur.70136

Publication date: 8 Nov 2025 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
8
Publication authors identified as autistic
2 / 8 (25.0%)
  1. Aspasia Stacey Rabba
  2. Linnea A. Lampinen
  3. Phoebe Meldrum *
  4. Patrick Dwyer *
  1. Mikle South
  2. Lauren Taylor
  3. Mirko Uljarevic
  4. Vanessa Bal

Abstract

Assessment and diagnosis of autism in adulthood is a growing area of interest for both clinical and research practice. In this commentary, we present a thematic analysis following the first International Society for Autism Research Special Interest Group (SIG) focused on assessment and diagnosis of autism in adulthood. An increasing recognition of missed or misdiagnosed autistic adults is highlighted throughout the commentary. Recommendations for reducing barriers in diagnostic processes are reviewed, including improving existing adult autism measures and developing new ones, especially self-report/interview tools capturing what cannot be externally observed; providing more information about the process ahead of time and better post-diagnostic support; better assessment of psychosocial and mental health histories; training to promote clinicians' understanding of adult autism; and the importance of considering culture. Professional and government bodies should support the development of neuroaffirming, client-centered practice guidelines that actively include input and co-design from autistic adults.

Bibliography cited by this reference

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

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 02:38.

Cited references
21
With a DOI
19
Without a DOI, from raw bibliography text
2
5 / 21 (23.8%) cited references include at least one author identified as autistic.
References with data to complete
2 / 21 (9.5%)
References with detected author names
19 / 21 (90.5%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
2
References with raw author names still to review
1
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
90
From DOI or external metadata
90
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
59 / 90 (65.6%) names are linked to an author already present in AutiHub. 31 / 90 (34.4%) names are not yet linked.
Names linked to a person identified as autistic
20 / 90 (22.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 20 / 59 (33.9%). Distinct people identified as autistic: 15 / 81 (18.5%).
  1. Lisa Fiene , Charlotte Brownlow (2015). Investigating interoception and body awareness in adults with and without autism spectrum disorder . Autism Research, 8(6), 709-716. Wiley.
    Type: Article DOI: 10.1002/aur.1486 OpenAlex: https://openalex.org/W1918132890
    Crossref OpenAlex
  2. American Psychiatric Association (2022). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association Publishing.
    Type: Book DOI: 10.1176/appi.books.9780890425787 OpenAlex: https://openalex.org/W4281687410
    Crossref OpenAlex
  3. Meng-Chuan Lai , Simon Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013-1027. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(15)00277-1 OpenAlex: https://openalex.org/W2128937542
    Crossref OpenAlex
  4. Courtney J Bernardin , Timothy Lewis , Debora Bell , Stephen Kanne (2021). Associations between social camouflaging and internalizing symptoms in autistic and non-autistic adolescents . Autism, 25(6), 1580-1591. SAGE Publications.
    Type: Article DOI: 10.1177/1362361321997284 OpenAlex: https://openalex.org/W3133535198
    Crossref OpenAlex
  5. Marjorie Solomon , Meghan Miller , Sandra L. Taylor , Stephen P. Hinshaw , Cameron S. Carter (2012). Autism Symptoms and Internalizing Psychopathology in Girls and Boys with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 42(1), 48-59. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-011-1215-z OpenAlex: https://openalex.org/W2152334168
    Crossref OpenAlex
  6. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative research in sport, exercise and health, 11(4), 589. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1628806 OpenAlex: https://openalex.org/W2950504429
    Crossref OpenAlex
  7. Denise DuBois , Stephanie H. Ameis , Meng-Chuan Lai , Manuel F. Casanova , Pushpal Desarkar (2016). Interoception in Autism Spectrum Disorder: A review . International Journal of Developmental Neuroscience, 52(1), 104-111. Wiley.
    Type: Article DOI: 10.1016/j.ijdevneu.2016.05.001 OpenAlex: https://openalex.org/W2415326721
    Crossref OpenAlex
  8. David Byrne (2022). A worked example of Braun and Clarke’s approach to reflexive thematic analysis . Quality & Quantity, 56(3), 1391-1412. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11135-021-01182-y OpenAlex: https://openalex.org/W3175998072
    Crossref OpenAlex
  9. Laura Foran Lewis (2017). A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults . Journal of Autism and Developmental Disorders, 47(8), 2410-2424. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3168-3 OpenAlex: https://openalex.org/W2615871753
    Crossref OpenAlex
  10. Lee Anna Clark , David Watson (2019). Constructing validity: New developments in creating objective measuring instruments. Psychological Assessment, 31(12), 1412-1427. American Psychological Association (APA).
    Type: Article DOI: 10.1037/pas0000626 OpenAlex: https://openalex.org/W2923413722
    Crossref OpenAlex
  11. (n.d.). Dekker M. 1999. “On Our Own Terms: Emerging Autistic Culture. InConferencia en línea.”
    Type: Other
    Crossref
  13. (n.d.). Den Houting J. 2021.“Participatory and Inclusive Autism Research Practice Guides Autism CRC.” https://www.autismcrc.com.au/access/inclusive‐research‐guides .
    Type: Other
    Crossref
  14. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2020). Diagnosis of autism in adulthood: A scoping review . Autism, 24(6), 1311-1327. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320903128 OpenAlex: https://openalex.org/W3008810253
    Crossref OpenAlex
  19. Jade Eloise Norris , Rebecca Harvey , Laura Hull (2025). Post-diagnostic support for adults diagnosed with autism in adulthood in the UK: A systematic review with narrative synthesis . Autism, 29(2), 284-309. SAGE Publications.
    Type: Article DOI: 10.1177/13623613241273073 OpenAlex: https://openalex.org/W4402409843
    Crossref OpenAlex
  20. Elizabeth O'Nions , Irene Petersen , Joshua E.J. Buckman , Rebecca A. Charlton , Claudia Cooper , Anne Corbett et al. (2023). Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data . The Lancet Regional Health - Europe, 29, 100626. Elsevier BV.
    Type: Article DOI: 10.1016/j.lanepe.2023.100626 OpenAlex: https://openalex.org/W4362579857
    Crossref OpenAlex
  21. Gareth Terry , Nikki Hayfield , Victoria Clarke , Virginia Braun (2017). Thematic Analysis . In The SAGE Handbook of Qualitative Research in Psychology (pp. 17-36). SAGE Publications Ltd.
    Type: Book chapter DOI: 10.4135/9781526405555.n2 OpenAlex: https://openalex.org/W4232977219
    Crossref