Forautistic people, their diagnosis can be a significant social identity. However, as autism is often stigmatized, autistic individuals face a dilemma when deciding whether to disclose their diagnosis.
On one hand, disclosure can lead to understanding, accommodations, and a sense of belonging with other autistic people. On the other hand, it can also result in negativestereotyping, discrimination, and social rejection.
Key Points
Rationale
Disclosing anautism diagnosisis a complex dilemma for autistic adults, as autism is a stigmatized social identity (Cooper et al., 2017).
While disclosure can lead to greater understanding and support, it also risks negative judgements and discrimination (Botha et al., 2022).
Recent research has begun examining autistic adults’ varied experiences and strategies around disclosing in different life domains (Thompson-Hodgetts et al., 2020; Lindsay et al., 2021; Huang et al., 2022). However, there is a need for theory-driven quantitative studies identifying factors that predict disclosure likelihood across contexts.
Social identification with a stigmatized group can either positively buffer wellbeing (a “social cure”) or exacerbate stigma (a “social curse”) depending on strategies used (Jetten et al., 2017).
Method
This study used across-sectional survey designwith a sample of autistic adults living in Ireland (N=175).
Participants completed measures of: likelihood of disclosing autism diagnosis in four settings (criterion variables), autism social identification, stigma consciousness, individualistic strategy use, and collective strategy use (predictor variables).
Procedure
Participants were recruited via university email lists, autism organizations, and social media to complete an online survey. Inclusion criteria were being age 18+ and having an autism diagnosis or self-identifying as autistic.
Sample
The sample of 175 autistic adults living in Ireland ranged in age from 18-62 years old (M=35.25, SD=12.02).
80.6% were formally diagnosed (years since diagnosis M=5.43, SD=6.77) and 19.4% were self-diagnosed.
56% had at least one co-occurring condition. 64% identified as female, 22.3% as male, 12% as non-binary, and 1.7% preferred not to say.
Measures
Statistical Analysis
Four hierarchical multiple regressions were conducted to examine predictors of disclosing an autism diagnosis in the four settings.
Autism social identification, stigma consciousness, individualistic strategy use, and collective strategy use were entered as predictors in separate blocks to assess their independent influence.
Results
The overall regression models significantly predicted disclosure likelihood in all four settings. The study tested four hypotheses:
Hypothesis 1 (H1):Autism social identification will positively predict disclosure. This hypothesis was partially supported. Autism social identification positively predicted disclosure in social (ß=0.27, p<0.001), workplace (ß=0.25, p<0.001) and educational settings (ß=0.30, p<0.001), but not in the family setting.
Hypothesis 2 (H2):Stigma consciousness will negatively predict disclosure while controlling for autism social identification. This hypothesis was partially supported. Stigma consciousness negatively predicted disclosure in the workplace (ß=-0.17, p<0.05) and family (ß=-0.24, p<0.01), but not in social or educational settings, while controlling for autism social identification.
Hypothesis 3 (H3):Individualistic strategy use will negatively predict disclosure. This hypothesis was fully supported. Individualistic strategy use negatively predicted disclosure in social (ß=-0.42, p<0.001), workplace (ß=-0.35, p<0.001), educational (ß=-0.32, p<0.001) and family settings (ß=-0.33, p<0.001), over and above other predictors.
Hypothesis 4 (H4):Collective strategy use will positively predict disclosure, while autism social identification and stigma consciousness are controlled. This hypothesis was partially supported. Collective strategy use positively predicted disclosure in social (ß=0.18, p<0.05), educational (ß=0.19, p<0.01) and family settings (ß=0.19, p<0.05), but not in the workplace setting, over and above other predictors.
Insight
This study demonstrates the utility of applying a social identity approach to understand the complex factors influencing autistic adults’ disclosure decisions. A key insight is that autistic adults appear to employ contrasting strategies to navigate the disclosure dilemma and cope with a stigmatized identity.
On one hand, stronger autism social identification generally predicted higher likelihood of disclosing, suggesting embracing an autistic identity motivates disclosure, perhaps to access support, accommodations or social connections.
Collective strategies like autism rights activism and advocacy also predicted more disclosure in most settings, as a way of positively reframing the autistic identity.
On the other hand, stigma consciousness predicted lower disclosure likelihood in the higher-stakes domains of work and family, indicating autistic people are aware of risks of negative judgement.
Most strikingly, individualistic strategies involving distancing oneself from the autistic label and attempting to “overcome limitations” consistently reduced disclosure likelihood across all contexts.
Further mixed-methods research could illuminate the nuances of how autistic people weigh disclosure decisions depending on their context, goals and past experiences.
Longitudinal studies could examine the impact of disclosure experiences and shifting identity beliefs over time. Comparing the disclosure process across different marginalized identities could reveal common and unique elements.
Strengths
This study had several strengths, including:
Limitations
This study also had several limitations, including:
Implications
The findings underscore the real-world challenges autistic adults face in deciding whether to disclose their diagnosis. Individualistic concealment strategies were a double-edged sword, protecting against anticipated stigma but precluding social support and legally mandated accommodations that could improve wellbeing and functioning.
Autistic self-advocates and allies could apply these insights in fighting to destigmatize autism and create safer environments for disclosure.
Employers and universities should examine how their cultures and policies influence autistic people’s willingness to disclose and provide proactive supports.
Clinicians working with autistic people could explore their past disclosure experiences, current attitudes/strategies, and coach them on effective communication skills for revealing their diagnosis when appropriate.
Therapies aimed at enhancing self-advocacy, collective identity and strategic “coming out” could bolster wellbeing.
References
Botha, M., Dibb, B., & Frost, D. M. (2022). ” Autism is me”: an investigation of how autistic individuals make sense of autism and stigma.Disability & Society,37(3), 427-453.https://doi.org/10.1080/09687599.2020.1822782
Cooper, K., Smith, L. G., & Russell, A. (2017). Social identity, self‐esteem, and mental health in autism.European Journal of Social Psychology,47(7), 844-854.https://doi.org/10.1002/ejsp.2297
Huang, Y., Hwang, Y. I. J., Arnold, S. R., Lawson, L. P.,Richdale, A. L., & Trollor, J. N. (2022). Autistic Adults’ Experiences of Diagnosis Disclosure.Journal of Autism and Developmental Disorders, 52,1–7.https://doi.org/10.1007/s10803-021-05384-z
Jetten, J., Haslam, S. A., Cruwys, T., Greenaway, K. H., Haslam, C., & Steffens, N. K. (2017). Advancing the social identity approach to health and well‐being: Progressing the social cure research agenda.European journal of social psychology,47(7), 789-802.https://doi.org/10.1002/ejsp.2333
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/10.1080/09638288.2019.1635658
Nario-Redmond, M. R., Noel, J. G., & Fern, E. (2013). Redefining disability, re-imagining the self: Disability identification predicts self-esteem and strategic responses to stigma.Self and Identity,12(5), 468-488.https://doi.org/10.1080/15298868.2012.681118
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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.2020.101598
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Saul McLeod, PhD
BSc (Hons) Psychology, MRes, PhD, University of Manchester
Saul McLeod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.
Olivia Guy-Evans, MSc
BSc (Hons) Psychology, MSc Psychology of Education
Olivia Guy-Evans is a writer and associate editor for Simply Psychology. She has previously worked in healthcare and educational sectors.
