Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

28-09-2022 | Original Paper

Using the COM-B Model and Theoretical Domains Framework to Understand Workplace Disclosure Experiences, Influencers, and Needs Among Autistic Young Adults

Auteurs: Vanessa Tomas, Shauna Kingsnorth, Bonnie Kirsh, Evdokia Anagnostou, Sally Lindsay

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 12/2023

Abstract

For autistic young adults, deciding whether to disclose their autism at work is complex. Minimal research explores what they need to support disclosure and what influences decisions. To understand disclosure needs and influencers, we explored (i) disclosure decision-making experiences and (ii) perceptions of the disclosure process among autistic young adults. We conducted focus groups using the Capability, Opportunity, Motivation, Behaviour Model and Theoretical Domains Framework (TDF). We analyzed data from 23 participants and mapped onto the TDF to develop five themes: (1) workplace environment, (2) perceptions of disclosure outcomes, (3) personal factors and identity, (4) disclosure-related ambitions and determination, and (5) know-hows of disclosure. Future work should prioritize developing disclosure decision-making supports and investigate employer roles in fostering inclusive workplaces.

vorige artikel Sensory Phenotypes in Autism: Making a Case for the Inclusion of Sensory Integration Functions

volgende artikel Investigating the Influence of Autism Spectrum Traits on Face Processing Mechanisms in Developmental Prosopagnosia

Alleen toegankelijk voor geautoriseerde gebruikers

We use identity-first and neutral language (“person on the autism spectrum”) as per recommendations by the Canadian Autism Spectrum Disorder Alliance and the Autistic Self Advocacy Network USA.

We acknowledge the varying terminology in qualitative research. For some, two-to-three participants may be referred to as group interviews; however, for consistency, we refer to all groups as focus groups.

Abrams, K. M., Wang, Z., Song, Y. J., & Galindo-Gonzalez, S. (2015). Data richness trade-offs between face-to-face, online audiovisual, and online text-only focus groups. Social Science Computer Review, 33(1), 80–96. https://doi.org/10.1177/0894439313519733CrossRef

Anderson, C., Butt, C., & Sarsony, C. (2021). Young adults on the autism spectrum and early employment-related experiences: Aspirations and obstacles. Journal of Autism and Developmental Disorders, 51, 88–105. https://doi.org/10.1007/s10803-020-04513-4CrossRefPubMed

Arnett, J. (2007). Emerging adulthood: What is it, and what is it good for? Child Development Perspectives, 1, 68–73. https://doi.org/10.1111/j.1750-8606.2007.00016.xCrossRef

Atkins, L., Francis, J., Islam, R., O’Connor, D., Patey, A., Ivers, N., Foy, R., Duncan, E. M., Colquhoun, H., Grimshaw, J. M., Lawton, R., & Michie, S. (2017). A guide to using the theoretical domains framework of behaviour change to investigate implementation problems. Implementation Science, 12(1), 77. https://doi.org/10.1186/s13012-017-0605-9CrossRefPubMedPubMedCentral

Bellamy, K., Ostini, R., Martini, N., & Kairuz, T. (2016). Seeking to understand: Using generic qualitative research to explore access to medicines and pharmacy services among resettled refugees. International Journal of Clinical Pharmacy, 38(3), 671–675. https://doi.org/10.1007/s11096-016-0261-1CrossRefPubMed

Bennett, A., Miller, J., Stollon, N., Prasad, R., & Blum, N. (2018). Autism spectrum disorder and transition-aged youth. Current Psychiatry Reports, 20(11), 103. https://doi.org/10.1007/s11920-018-0967-yCrossRefPubMed

Bonaccio, S., Lapierre, L., & O’Reilly, J. (2019). Creating work climates that facilitate and maximize the benefits of disclosing mental health problems in the workplace. Organizational Dynamics. https://doi.org/10.1016/j.orgdyn.2019.03.006CrossRef

Botha, M., Dibb, B., & Frost, D. (2020). “Autism is me”: An investigation of how autistic individuals make sense of autism and stigma. Disability & Society, 37(3), 427–453. https://doi.org/10.1080/09687599.2020.1822782CrossRef

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oaCrossRef

Bunniss, S., & Kelly, D. R. (2010). Research paradigms in medical education research. Medical Education, 44(4), 358–366. https://doi.org/10.1111/j.1365-2923.2009.03611.xCrossRefPubMed

Bury, S., Hedley, D., Uljarević, M., & Gal, E. (2020). The autism advantage at work: A critical and systematic review of current evidence. Research in Developmental Disabilities, 105, 103750. https://doi.org/10.1016/j.ridd.2020.103750CrossRefPubMed

Bury, S., Flower, R., Zulla, R., Nicholas, D., & Hedley, D. (2021). Workplace social challenges experienced by employees on the autism spectrum: An international exploratory study examining employee and supervisor perspectives. Journal of Autism and Developmental Disorders, 51(5), 1614–1627. https://doi.org/10.1007/s10803-020-04662-6CrossRefPubMed

Caelli, K., Ray, L., & Mill, J. (2003). ‘Clear as mud’: Toward greater clarity in generic qualitative research. International Journal of Qualitative Methods, 2(2), 1–13. https://doi.org/10.1177/160940690300200201CrossRef

Cage, E., & Troxell-Whitman, Z. (2020). Understanding the relationships between autistic identity, disclosure, and camouflaging. Autism in Adulthood, 2(4), 334–338. https://doi.org/10.1089/aut.2020.0016CrossRefPubMedPubMedCentral

Cai, R. Y., & Richdale, A. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(1), 31–41. https://doi.org/10.1007/s10803-015-2535-1CrossRefPubMed

Caivano, N. (2016). Inaccessible inclusion: privacy, disclosure and accommodation of mental illness in the workplace. Canadian Journal of Human Rights, 5(1), 9.

Cane, J., O’Connor, D., & Michie, S. (2012). Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science, 7(1), 37. https://doi.org/10.1186/1748-5908-7-37CrossRefPubMedPubMedCentral

Cascio, M., Weiss, J., & Racine, E. (2021). Making autism research inclusive by attending to intersectionality: A review of the research ethics literature. Review Journal of Autism and Developmental Disorders, 8, 22–36. https://doi.org/10.1007/s40489-020-00204-zCrossRef

Chen, J. L., Leader, G., Sung, C., & Leahy, M. (2015). Trends in employment for individuals with autism spectrum disorder: A review of the research literature. Review Journal of Autism and Developmental Disorders, 2(2), 115–127. https://doi.org/10.1007/s40489-014-0041-6CrossRef

Davidson, J., & Henderson, V. (2010). “Coming out” on the spectrum: Autism, identity and disclosure. Social & Cultural Geography, 11, 155–170. https://doi.org/10.1080/14649360903525240CrossRef

Dreaver, J., Thompson, C., Girdler, S., Adolfsson, M., Black, M. H., & Falkmer, M. (2020). Success factors enabling employment for adults on the autism spectrum from employers’ perspective. Journal of Autism and Developmental Disorders, 50(5), 1657–1667. https://doi.org/10.1007/s10803-019-03923-3CrossRefPubMed

Fahim, C., Acai, A., McConnell, M. M., Wright, F. C., Sonnadara, R. R., & Simunovic, M. (2020). Use of the theoretical domains framework and behaviour change wheel to develop a novel intervention to improve the quality of multidisciplinary cancer conference decision-making. BMC Health Services Research, 20(1), 578. https://doi.org/10.1186/s12913-020-05255-wCrossRefPubMedPubMedCentral

Farsinejad, A., Russell, A., & Butler, C. (2022). Autism disclosure—The decisions autistic adults make. Research in Autism Spectrum Disorders, 93, 101936. https://doi.org/10.1016/j.rasd.2022.101936CrossRef

Fereday, J., & Muir-Cochrane, E. (2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5(1), 80–92. https://doi.org/10.1177/160940690600500107CrossRef

Flower, R., Richdale, A., & Lawson, L. (2020). Brief report: What happens after school? Exploring post-school outcomes for a group of autistic and non-autistic Australian youth. Journal of Autism and Developmental Disorders, 51(4), 1385–1391. https://doi.org/10.1007/s10803-020-04600-6CrossRef

Frambach, J. M., van der Vleuten, C. P. M., & Durning, S. J. (2013). AM Last Page: Quality criteria in qualitative and quantitative Research. Academic Medicine. https://doi.org/10.1097/ACM.0b013e31828abf7fCrossRefPubMed

Frost, K., Bailey, K., & Ingersoll, B. (2019). “I just want them to see me as…me”: Identity, community, and disclosure practices among college students on the autism spectrum. Autism in Adulthood, 1(4), 268–275. https://doi.org/10.1089/aut.2018.0057CrossRefPubMedPubMedCentral

Gray, L., Wong, G., Rempel, G., & Cook, K. (2020). Expanding qualitative research interviewing strategies: Zoom video communications. Qualitative Report, 25(5), 1292–1301. https://doi.org/10.46743/2160-3715/2020.4212CrossRef

Greene, K. (2009). Uncertainty, information management, and disclosure decisions: Theories and applications. In T. D. Afifi & W. A. Afifi (Eds.), Uncertainty, information management, and disclosure decisions: Theories and applications (pp. 226–253). Routledge Taylor & Francis Group.

Guest, G., Namey, E., & McKenna, K. (2017). How many focus groups are enough? Building an evidence base for nonprobability sample sizes. Field Methods, 29(1), 3–22. https://doi.org/10.1177/1525822X16639015CrossRef

Hanson, H., Hart, R. I., Thompson, B., McDonagh, J. E., Tattersall, R., Jordan, A., & Foster, H. E. (2018). Experiences of employment among young people with juvenile idiopathic arthritis: A qualitative study. Disability and Rehabilitation, 40(16), 1921–1928. https://doi.org/10.1080/09638288.2017.1323018CrossRefPubMed

Hayward, S., Mcvilly, K., & Stokes, M. (2019). “I would love to just be myself”: What autistic women want at work. Autism in Adulthood, 1, 297–305. https://doi.org/10.1089/aut.2019.0020CrossRefPubMedPubMedCentral

Hedley, D., Cai, R. Y., Uljarevic, M., Wilmot, M., Spoor, J., Richdale, A., & Dissanayake, C. (2017). Transition to work: Perspectives from the autism spectrum. Autism, 22(5), 528–541. https://doi.org/10.1177/1362361316687697CrossRefPubMed

Huang, Y., Arnold, S. R. C., Foley, K.-R., & Trollor, J. N. (2020). Diagnosis of autism in adulthood: A scoping review. Autism, 24(6), 1311–1327. https://doi.org/10.1177/1362361320903128CrossRefPubMed

Huang, Y., Hwang, Y. I. J., Arnold, S. R. C., Lawson, L. P., Richdale, A. L., & Trollor, J. N. (2022). Autistic adults’ experiences of diagnosis disclosure. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05384-zCrossRefPubMedPubMedCentral

Hurley-Hanson, A. E., Giannantonio, C., & Griffiths, A. (2019). The benefits of employing people with autism. In A. E. Hurley-Hanson, C. Giannantonio, & A. Griffiths (Eds.), Autism in the workplace: creating positive employment and career outcomes for generation A (pp. 257–270). Palgrave MacMillan.

Johnson, T., & Joshi, A. (2014). Disclosure on the spectrum: Understanding disclosure among employees on the autism spectrum. Industrial and Organizational Psychology, 7(2), 278–281. https://doi.org/10.1111/iops.12149CrossRef

Kaushansky, D., Cox, J., Dodson, C., McNeeley, M., Kumar, S., & Iverson, E. (2017). Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illness, 13(1), 49–61. https://doi.org/10.1177/1742395316655855CrossRefPubMed

Krueger, R. A. (1998). Developing questions for focus groups. SAGE Publications.

Krueger, R. A., & Casey, M. A. (2015). Focus groups: a practical guide for applied research (5th ed.). Sage Publications.

Lambe, S., Russell, A., Butler, C., Fletcher, S., Ashwin, C., & Brosnan, M. (2018). Autism and the transition to university from the student perspective. Autism, 23(6), 1531–1541. https://doi.org/10.1177/1362361318803935CrossRefPubMed

Lindsay, S., McDougall, C., & Sanford, R. (2013). Disclosure, accommodations and self-care at work among adolescents with disabilities. Disability and Rehabilitation, 35(26), 2227–2236. https://doi.org/10.3109/09638288.2013.775356CrossRefPubMed

Lindsay, S., Cagliostro, E., Leck, J., Shen, W., & Stinson, J. (2019). Disability disclosure and workplace accommodations among youth with disabilities. Disability and Rehabilitation, 41(16), 1914–1924. https://doi.org/10.1080/09638288.2018.1451926CrossRefPubMed

Lindsay, S., Osten, V., Rezai, M., & Bui, S. (2021). Disclosure and workplace accommodations for people with autism: A systematic review. Disability and Rehabilitation, 43(5), 597–610. https://doi.org/10.1080/09638288.2019.1635658CrossRefPubMed

Lobe, B., Morgan, D., & Hoffman, K. A. (2020). Qualitative data collection in an era of social distancing. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406920937875CrossRef

MacDonald-Wilson, K., Russinova, Z., Rogers, S., Lin, C. H., Ferguson, T., Dong, S., & MacDonald, M. K. (2011). Work accommodation and retention in mental health. In I. Z. Z. Schultz & S. E. Rogers (Eds.), Work accommodation and retention in mental health (pp. 191–217). Springer Science + Business Media.CrossRef

McKenna, H. P. (1997). Theory and research: A linkage to benefit practice. International Journal of Nursing Studies, 34(6), 431–437. https://doi.org/10.1016/S0020-7489(97)00037-0CrossRefPubMed

Michie, S., van Stralen, M. M., & West, R. (2011). The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science, 6(1), 42. https://doi.org/10.1186/1748-5908-6-42CrossRefPubMedPubMedCentral

Migliore, A., Butterworth, J., & Zalewska, A. (2014). Trends in vocational rehabilitation services and outcomes of youth with autism: 2006–2010. Rehabilitation Counseling Bulletin, 57(2), 80–89. https://doi.org/10.1177/0034355213493930CrossRef

Namey, E., Guest, G., O’Regan, A., Godwin, C., Taylor, J., & Martinez, A. (2019). How does mode of qualitative data collection affect data and cost? Findings from a quasi-experimental Study. Field Methods, 32(1), 58–74. https://doi.org/10.1177/1525822X19886839CrossRef

Nicholas, D. B., Hedley, D., Randolph, J. K., Raymaker, D. M., Robertson, S. M., & Vincent, J. (2019). An expert discussion on employment in autism. Autism in Adulthood, 1(3), 162–169. https://doi.org/10.1089/aut.2019.29003.djnCrossRefPubMedPubMedCentral

Nuske, A., Rillotta, F., Bellon, M., & Richdale, A. (2019). Transition to higher education for students with autism: A systematic literature review. Journal of Diversity in Higher Education, 12(3), 280–295. https://doi.org/10.1037/dhe0000108CrossRef

O’Connor, C., Burke, J., & Rooney, B. (2020). Diagnostic disclosure and social marginalisation of adults with ASD: Is there a relationship and what mediates it? Journal of Autism and Developmental Disorders, 50(9), 3367–3379. https://doi.org/10.1007/s10803-019-04239-yCrossRefPubMed

O’Day, B., & Killeen, M. (2002). Research on the lives of persons with disabilities: The emerging importance of qualitative research methodologies. Journal of Disability Policy Studies, 13, 9–15. https://doi.org/10.1177/10442073020130010201CrossRef

Ohl, A., Grice Sheff, M., Small, S., Nguyen, J., Paskor, K., & Zanjirian, A. (2017). Predictors of employment status among adults with autism spectrum disorder. Work, 56, 345–355. https://doi.org/10.3233/WOR-172492CrossRefPubMed

Ojo, S. O., Bailey, D. P., Hewson, D. J., & Chater, A. M. (2019). Perceived barriers and facilitators to breaking up sitting time among desk-based office workers: A qualitative investigation using the TDF and COM-B. International Journal of Environmental Research and Public Health, 16(16), 2903. https://doi.org/10.3390/ijerph16162903CrossRefPubMedPubMedCentral

Patton, M. Q. (2002). Qualitative research and evaluation methods. In D. C. Laughton (Ed.), Designing qualitative studies (3rd ed., pp. 230–243). Sage Publications.

Raymaker, D. M., Sharer, M., Maslak, J., Powers, L. E., McDonald, K. E., Kapp, S. K., Moura, I., Wallington, A. F., & Nicolaidis, C. (2022). “[I] don’t wanna just be like a cog in the machine”: Narratives of autism and skilled employment. Autism. https://doi.org/10.1177/13623613221080813CrossRefPubMedPubMedCentral

Rolfe, G. (2006). Validity, trustworthiness and rigour: Quality and the idea of qualitative research. Journal of Advanced Nursing, 53, 304–310. https://doi.org/10.1111/j.1365-2648.2006.03727.xCrossRefPubMed

Romualdez, A., Heasman, B., Walker, Z., Davies, J., & Remington, A. (2021a). “People might understand me better”: Diagnostic disclosure experiences of autistic individuals in the workplace. Autism in Adulthood, 3(2), 157–167. https://doi.org/10.1089/aut.2020.0063CrossRef

Romualdez, A., Walker, Z., & Remington, A. (2021b). Autistic adults’ experiences of diagnostic disclosure in the workplace: Decision-making and factors associated with outcomes. Autism \& Developmental Language Impairments. https://doi.org/10.1177/23969415211022955CrossRef

Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf, S. C. (2013). Postsecondary employment experiences among young adults with an autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 52(9), 931–939. https://doi.org/10.1016/j.jaac.2013.05.019CrossRefPubMedPubMedCentral

Santuzzi, A. M., Waltz, P. R., Finkelstein, L. M., & Rupp, D. E. (2014). Invisible disabilities: Unique challenges for employees and organizations. Industrial and Organizational Psychology, 7(2), 204–219. https://doi.org/10.1111/iops.12134CrossRef

Scott, M., Milbourn, B., Falkmer, M., Black, M., Bӧlte, S., Halladay, A., Lerner, M., Taylor, J. L., & Girdler, S. (2019). Factors impacting employment for people with autism spectrum disorder: A scoping review. Autism, 23(4), 869–901. https://doi.org/10.1177/1362361318787789CrossRefPubMed

Stalmeijer, R., McNaughton, N., & van Mook, W. V. (2014). Using focus groups in medical education research: AMEE Guide No. 91. Medical Teacher, 36, 923–939.CrossRefPubMed

Statistics Canada. (2017). Canadian survey on disability. Retrieved, July 2021, from https://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3251

Statistics Canada. (2019). A portrait of Canadian youth: March 2019 updates. Retrieved, July 2021, from https://www150.statcan.gc.ca/n1/pub/11-631-x/11-631-x2019003-eng.htm

Thompson-Hodgetts, S., Labonte, C., Mazumder, R., & Phelan, S. (2020). Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others. Research in Autism Spectrum Disorders, 77, 101598. https://doi.org/10.1016/j.rasd.2020.101598CrossRef

Tint, A., Maughan, A. L., & Weiss, J. A. (2017). Community participation of youth with intellectual disability and autism spectrum disorder. Journal of Intellectual Disability Research, 61(2), 168–180. https://doi.org/10.1111/jir.12311CrossRefPubMed

Vella, L., Clare, I., Ring, H., Redley, M., & Watson, P. (2011). Decision-making difficulties experienced by adults with autism spectrum conditions. Autism, 16(6), 612–621. https://doi.org/10.1177/1362361311415876CrossRef

Vornholt, K., Villotti, P., Muschalla, B., Bauer, J., Colella, A., Zijlstra, F., Ruitenbeek, G. V., Uitdewilligen, S., & Corbière, M. (2018). Disability and employment—overview and highlights. European Journal of Work and Organizational Psychology, 27(1), 40–55. https://doi.org/10.1080/1359432X.2017.1387536CrossRef

Wehman, P., Revell, W. G., & Brooke, V. (2003). Competitive employment: Has it become the “first choice” yet? Journal of Disability Policy Studies, 14(3), 163–173. https://doi.org/10.1177/10442073030140030601CrossRef

Wehman, P., Schall, C., McDonough, J., Sima, A., Brooke, A., Ham, W., Whittenburg, H., Brooke, V., Avellone, L., & Riehle, E. (2020). Competitive employment for transition-aged youth with significant impact from autism: A multi-site randomized clinical trial. Journal of Autism and Developmental Disorders, 50(6), 1882–1897. https://doi.org/10.1007/s10803-019-03940-2CrossRefPubMed

Wei, X., Wagner, M., Hudson, L., Yu, J., & Shattuck, P. (2014). Transition to adulthood: Employment, education, and disengagement in individuals with Autism Spectrum Disorders. Emerging Adulthood, 3(1), 27–45. https://doi.org/10.1177/2167696814534417CrossRef

Whelpley, C. E., Banks, G. C., Bochantin, J. E., & Sandoval, R. (2020). Tensions on the spectrum: An inductive investigation of employee and manager experiences of autism. Journal of Business and Psychology, 36, 283–297. https://doi.org/10.1007/s10869-019-09676-1CrossRef

Zolyomi, A., Begel, A., Waldern, J., Tang, J., Barnett, M., Cutrell, E., McDuff, D., Andrist, S., & Morris, M. (2019). Managing stress: The needs of autistic adults in video calling. Proceedings of the ACM on Human-Computer Interaction, 3, 1–29. https://doi.org/10.1145/3359236CrossRef

Titel: Using the COM-B Model and Theoretical Domains Framework to Understand Workplace Disclosure Experiences, Influencers, and Needs Among Autistic Young Adults
Auteurs: Vanessa Tomas
Shauna Kingsnorth
Bonnie Kirsh
Evdokia Anagnostou
Sally Lindsay
Publicatiedatum: 28-09-2022
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 12/2023
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-022-05766-x

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 12/2023

Social-Emotional and Behavioural Difficulties in Children with Neurodevelopmental Disorders: Emotion Perception in Daily Life and in a Formal Assessment Context

Discrimination and Harassment Experiences of Autistic College Students and Their Neurotypical Peers: Risk and Protective Factors

Sensory Phenotypes in Autism: Making a Case for the Inclusion of Sensory Integration Functions

Assessing Trial-to-Trial Variability in Auditory ERPs in Autism and Schizophrenia

Semantic and Visuospatial Fluid Reasoning in School-Aged Autistic Children

The Importance of Language Delays as an Early Indicator of Subsequent ASD Diagnosis in Public Healthcare Settings