Abstract
This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
We used Identity-first (“autistic person”) and neutral (“on the autism spectrum”) terminology throughout based on participants’ preferences (see Huang et al., 2021).
Excluding n = 7 who learned the diagnosis from both psychologists and psychiatrists, and n = 6 from other professionals.
References
Abel, S., Machin, T., & Brownlow, C. (2019). Support, socialise and advocate: An exploration of the stated purposes of Facebook autism groups. Research in Autism Spectrum Disorders, 61, 10–21. https://doi.org/10.1016/j.rasd.2019.01.009
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596.dsm01
Australian Bureau of Statistics. (2018). Postcode 2017 to remoteness area 2016, 'Table 3: Correspondence'. Retrieved 7 February 2020 from https://www.abs.gov.au/ausstats/abs@.nsf/mf/1270.0.55.005
Australian Bureau of Statistics. (2019). Survey of Disability, Ageing and Carers: Autism in Australia. Retrieved 9 February 2021 from https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/2018
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33–55. https://doi.org/10.1111/j.1548-1352.2009.01080.x
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
Braun, V., Clarke, V., Boulton, E., Davey, L., & McEvoy, C. (2020). The online survey as a qualitative research tool. International Journal of Social Research Methodology. https://doi.org/10.1080/13645579.2020.1805550
Buckmaster, L. (2017). The National Disability Insurance Scheme: a quick guide. Parliament of Australia. Retrieved 9 February 2021 from https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/rp/rp1617/Quick_Guides/NDIS
Cantor, M. H. (1979). Neighbors and friends: An overlooked resource in the informal support system. Research on Aging, 1(4), 434–463. https://doi.org/10.1177/016402757914002
Castelein, S., Bruggeman, R., Van Busschbach, J. T., Van Der Gaag, M., Stant, A. D., Knegtering, H., & Wiersma, D. (2008). The effectiveness of peer support groups in psychosis: A randomized controlled trial. Acta Psychiatrica Scandinavica, 118(1), 64–72. https://doi.org/10.1111/j.1600-0447.2008.01216.x
Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1
Crane, L., Hearst, C., Ashworth, M., Davies, J., & Hill, E. L. (2020). Supporting newly identified or diagnosed autistic adults: An initial evaluation of an autistic-led programme. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-020-04486-4
Creswell, J. W., & Plano Clark, V. L. (2007). Designing and conducting mixed method research. SAGE Publications.
Davidson, J. (2008). Autistic culture online: Virtual communication and cultural expression on the spectrum. Social & Cultural Geography, 9(7), 791–806. https://doi.org/10.1080/14649360802382586
Griffith, G. M., Totsika, V., Nash, S., & Hastings, R. P. (2012). ‘I just don’t fit anywhere’: Support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism, 16(5), 532–546. https://doi.org/10.1177/1362361311405223
Happé, F. G., Mansour, H., Barrett, P., Brown, T., Abbott, P., & Charlton, R. A. (2016). Demographic and cognitive profile of individuals seeking a diagnosis of autism spectrum disorder in adulthood. Journal of Autism & Developmental Disorders, 46(11), 3469–3480. https://doi.org/10.1007/s10803-016-2886-2
Harvery, M., Froude, E. H., Foley, K.-R., Trollor, J. N., & Arnold, S. R. C. (2021). Employment profiles of autistic adults in Australia. Autism Research, 14(10), 2061–2077. https://doi.org/10.1002/aur.2588
Hassrick, E. M., Holmes, L. G., Sosnowy, C., Walton, J., & Carley, K. (2021). Benefits and risks: A systematic review of information and communication technology use by autistic people. Autism in Adulthood, 3(1), 72–84. https://doi.org/10.1089/aut.2020.0048
Hofvander, B., Delorme, R., Chaste, P., Nydén, A., Wentz, E., Ståhlberg, O., Herbrecht, E., Stopin, A., Anckarsäter, H., Gillberg, C., Råstam, M., & Leboyer, M. (2009). Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders. BMC Psychiatry, 9(35), 1–9. https://doi.org/10.1186/1471-244X-9-35
Huang, Y., Arnold, S. R. C., Foley, K.-R., & Trollor, J. N. (2021). Choose your own adventure: Pathways to adulthood autism diagnosis in Australia. Journal of Autism & Developmental Disorders. https://doi.org/10.1007/s10803-021-05169-4
Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism and Developmental Disorders, 7(4), 306–317. https://doi.org/10.1007/s40489-020-00197-9
Jantz, K. M. (2011). Support groups for adults with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 26(2), 119–128. https://doi.org/10.1177/1088357611406903
Jones, L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2014). Experiences of receiving a diagnosis of autism spectrum disorder: A survey of adults in the United kingdom. Journal of Autism & Developmental Disorders, 44(12), 3033–3044. https://doi.org/10.1007/s10803-014-2161-3
Kattari, S. K., Olzman, M., & Hanna, M. D. (2018). “You look fine!”: Ableist experiences by people with invisible disabilities. Affilia, 33(4), 477–492. https://doi.org/10.1177/0886109918778073
Koehne, S., Behrends, A., Fairhurst, M. T., & Dziobek, I. (2016). Fostering social cognition through an imitation- and synchronization-based dance/movement intervention in adults with autism spectrum disorder: A controlled proof-of-concept study. Psychotherapy and Psychosomatics, 85(1), 27–35. https://doi.org/10.1159/000441111
Kollia, B., Kamowski-Shakibai, M. T., Basch, C., & Clark, A. (2017). Sources and content of popular online videos about autism spectrum disorders. Health Promotion Perspective, 7(4), 238–244. https://doi.org/10.15171/hpp.2017.41
Lai, M.-C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry, 2(11), 1013–1027. https://doi.org/10.1016/S2215-0366(15)00277-1
Lai, M.-C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child & Adolescent Psychiatry, 54(1), 11–24. https://doi.org/10.1016/j.jaac.2014.10.003
Laugeson, E. A., Gantman, A., Kapp, S. K., Orenski, K., & Ellingsen, R. (2015). A randomized controlled trial to improve social skills in young adults with autism spectrum disorder: The UCLA PEERS® program. Journal of Autism and Developmental Disorders, 45(12), 3978–3989. https://doi.org/10.1007/s10803-015-2504-8
Lehnhardt, F. G., Gawronski, A., Pfeiffer, K., Kockler, H., Schilbach, L., & Vogeley, K. (2013). The investigation and differential diagnosis of Asperger syndrome in adults. Deutsches Ärzteblatt International, 110(45), 755–763. https://doi.org/10.3238/arztebl.2013.0755
Lewis, L. F. (2016a). Exploring the experience of self-diagnosis of autism spectrum disorder in adults. Archives of Psychiatric Nursing, 30(5), 575–580. https://doi.org/10.1016/j.apnu.2016.03.009
Lewis, L. F. (2016b). Realizing a diagnosis of autism spectrum disorder as an adult. International Journal of Mental Health Nursing, 25(4), 346–354. https://doi.org/10.1111/inm.12200
Lewis, L. F. (2017). “We will never be normal”: The experience of discovering a partner has autism spectrum disorder. Journal of Marital and Family Therapy, 43(4), 631–643. https://doi.org/10.1111/jmft.12231
Lorenc, T., Rodgers, M., Marshall, D., Melton, H., Rees, R., Wright, K., & Sowden, A. (2017). Support for adults with autism spectrum disorder without intellectual impairment: Systematic review. Autism, 22(6), 654–668. https://doi.org/10.1177/1362361317698939
National Disability Insurance Agency. (2021a). NDIS Quarterly Report to disability ministers. National Disability Insurance Agency. https://www.ndis.gov.au/media/4063/download?attachment
National Disability Insurance Agency. (2021b). Participant data. Retrieved 17 March 2022 from https://data.ndis.gov.au/explore-data
Poon, K. K., & Sidhu, D. J. K. (2017). Adults with autism spectrum disorders: A review of outcomes, social attainment, and interventions. Current Opinion in Psychiatry, 30(2), 77–84. https://doi.org/10.1097/YCO.0000000000000306
Powell, T., & Acker, L. (2016). Adults’ experience of an asperger syndrome diagnosis: Analysis of its emotional meaning and effect on participants’ lives. Focus on Autism and Other Developmental Disabilities, 31(1), 72–80. https://doi.org/10.1177/1088357615588516
Punshon, C., Skirrow, P., & Murphy, G. (2009). The not guilty verdict: Psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism, 13(3), 265–283. https://doi.org/10.1177/1362361309103795
Raymond-Barker, P., Griffith, G. M., & Hastings, R. P. (2018). Biographical disruption: Experiences of mothers of adults assessed for autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 83–92. https://doi.org/10.3109/13668250.2016.1262011
Reichow, B., Halpern, J. I., Steinhoff, T. B., Letsinger, N., Naples, A., & Volkmar, F. R. (2012). Characteristics and quality of autism websites. Journal of Autism and Developmental Disorders, 42(6), 1263–1274. https://doi.org/10.1007/s10803-011-1342-6
Repper, J., & Carter, T. (2011). A review of the literature on peer support in mental health services. Journal of Mental Health, 20(4), 392–411. https://doi.org/10.3109/09638237.2011.583947
Richardson, L.-J., Molyneaux, V., & Murray, C. D. (2020). Being a peer support mentor for individuals who have had a lower limb amputation: An interpretative phenomenological analysis. Disability and Rehabilitation, 42(26), 3850–3857. https://doi.org/10.1080/09638288.2019.1611954
Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., Lee, L.-C., Rice, C., Giarelli, E., Kirby, R., Baio, J., Pinto-Martin, J., & Cuniff, C. (2009). Timing of identification among children with an autism spectrum disorder: Findings from a population-based surveillance study. Journal of the American Academy of Child & Adolescent Psychiatry, 48(5), 474–483. https://doi.org/10.1097/CHI.0b013e31819b3848
Smith, M. J., Ginger, E. J., Wright, K., Wright, M. A., Taylor, J. L., Humm, L. B., Olsen, D. E., Bell, M. D., & Fleming, M. F. (2014). Virtual reality job interview training in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44(10), 2450–2463. https://doi.org/10.1007/s10803-014-2113-y
Southby, K., & Robinson, O. (2018). Information, advocacy and signposting as a low-level support for adults with high-functioning autism spectrum disorder: An example from the UK. Journal of Autism and Developmental Disorders, 48(2), 511–519. https://doi.org/10.1007/s10803-017-3331-x
Tan, C. D. (2018). “I’m a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination. Social Science & Medicine, 197, 161–167. https://doi.org/10.1016/j.socscimed.2017.12.008
Ussher, J., Kirsten, L., Butow, P., & Sandoval, M. (2006). What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Social Science & Medicine, 62(10), 2565–2576. https://doi.org/10.1016/j.socscimed.2005.10.034
Wilson, C. E., Murphy, C. M., McAlonan, G., Robertson, D. M., Spain, D., Hayward, H., Woodhouse, E., Deeley, P. Q., Gillan, N., Ohlsen, J. C., Zinkstok, J., Stoencheva, V., Faulkner, J., Yildiran, H., Bell, V., Hammond, N., Craig, M. C., & Murphy, D. G. M. (2016). Does sex influence the diagnostic evaluation of autism spectrum disorder in adults? Autism, 20(7), 808–819. https://doi.org/10.1177/1362361315611381
Funding
This work was supported by the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government’s Cooperative Research Centres Program. The authors also acknowledge the financial support of the Australian Government Research Training Program.
Author information
Authors and Affiliations
Contributions
All authors contributed to the study conception and design. YH performed material preparation, data collection and analysis. The first draft of the manuscript was written by YH and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
Corresponding author
Ethics declarations
Conflicts of interest
The authors have no relevant financial or non-financial interests to disclose.
Ethical Approval
This study was approved by the UNSW Human Research Ethics Committee, number HC190582.
Consent to Participate
All participants provided informed consent to participate in the study and for the results to be published in a journal.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Huang, Y., Arnold, S.R.C., Foley, KR. et al. Experiences of Support Following Autism Diagnosis in Adulthood. J Autism Dev Disord 54, 518–531 (2024). https://doi.org/10.1007/s10803-022-05811-9
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10803-022-05811-9