Disclosing an Autism Diagnosis: A Social Identity Approach

Social Identity Theory (SIT) posits that people’s self-concept is influenced by their social group memberships, and that they strive for a positive social identity.

Self-Categorization Theory (SCT) extends this by stating that people categorize themselves and others into groups, accentuating similarities within and differences between groups.

For autistic 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 negative stereotyping, discrimination, and social rejection.

Togher, K., & Jay, S. (2023). Disclosing an autism diagnosis: A social identity approach. Autism Research, 16(10), 1934–1945. https://doi.org/10.1002/aur.2990

Key Points

• A social identity approach, including Social Identity Theory (SIT) and Self-Categorization Theory (SCT), provides a useful framework for examining factors that predict autistic adults‘ likelihood of disclosing their diagnosis in different settings.
• Autism social identification positively predicted disclosure of an autism diagnosis in social, workplace and educational settings.
• Stigma consciousness negatively predicted disclosure of an autism diagnosis in the family and the workplace.
• Over and above autism social identification and stigma consciousness, individualistic strategy use (denying/distancing from autism) negatively predicted disclosure in all four settings (social, workplace, educational, family).
• In contrast, collective strategy use (embracing autistic identity, resisting stigma, advocating) positively predicted disclosure in social, educational and family settings.
• The complex disclosure dilemma autistic people navigate, and the divergent individualistic vs collective strategies they employ to cope with stigma, can be elucidated through a social identity lens.
• As a stigmatized group, autistic people carefully weigh potential risks and benefits of disclosing their diagnosis which vary by context. Disclosure has implications for social connectedness, employment, educational accommodations and wellbeing.

Rationale

Disclosing an autism diagnosis is 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.

The social identity approach (Tajfel & Turner, 1979; Turner et al., 1987) provides a relevant framework, as it considers how people’s self-concept and behavior are shaped by their social group memberships.

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).

This study fills a research gap by quantitatively testing whether a social identity approach can explain autistic adults’ disclosure likelihood in social, workplace, education and family settings, considering autism social identification, stigma consciousness, and individualistic vs. collective strategies.

Method

This study used a cross-sectional survey design with 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

1. Likelihood of disclosing autism diagnosis was assessed with four 5-point Likert scale questions about disclosing in social, workplace, educational, and family settings.
2. Autism social identification was measured with an adapted 14-item multidimensional social identification scale (Leach et al., 2008). Higher average scores indicate stronger identification.
3. Stigma consciousness was assessed with an adapted 5-item scale (Link & Phelan, 2014) used for each of the four settings. Higher summed scores indicate greater stigma awareness.
4. Individualistic strategy use was measured with an adapted scale (Nario-Redmond et al., 2013) of five “denying/minimizing” and four “overcoming limitations” items. Higher summed scores reflect more individualistic strategy use.
5. Collective strategy use was assessed with an adapted 2-item subscale (Nario-Redmond et al., 2013): “I am an autism rights activist” and “I advocate for the rights of autistic people.” Higher scores indicate more collective strategy use.

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.

The findings extend previous qualitative research by quantifying these opposing “conceal or reveal” strategies and their variable impact depending on the life domain. The fact that individualistic approaches were the strongest predictor suggests that autism stigma currently overpowers the benefits of revealing one’s diagnosis.

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:

• Theory-driven application of social identity approach to autism
• Considered disclosure likelihood across multiple life domains
• Relatively large and diverse sample of autistic adults
• Used validated measures adapted for autism and specific contexts
• Hierarchical regression elucidated independent effects of novel predictors

Limitations

This study also had several limitations, including:

• Cross-sectional self-report data cannot establish causal relationships
• Lacking details on participants’ disclosure history and outcomes
• Sample limited to Ireland, may not generalize to other cultural contexts
• Most participants were formally diagnosed, may differ from self-diagnosed
• Some scales had modest internal reliability, construct validity uncertain

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

Tajfel, H., Turner, J. C., Austin, W. G., & Worchel, S. (1979). An integrative theory of intergroup conflict. Organizational identity: A reader, 56(65), 9780203505984-16.

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

Turner, J. C., Hogg, M. A., Oakes, P. J., Reicher, S. D., & Wetherell, M. S. (1987). Rediscovering the social group: A self-categorization theory. Basil Blackwell.

Keep Learning

Here are some questions for a college class to discuss this paper:

1. What are some examples of situations where you, or someone you know, had to decide whether to disclose a personal characteristic? What factors influenced the decision?
2. Do you think autism should be considered a disability, a difference, or an identity? How might this framing affect people’s disclosure choices and the reactions they encounter?
3. How could schools, workplaces and other institutions change their policies and practices to make disclosure safer and more beneficial for autistic people and other marginalized groups?
4. Which strategy for dealing with a stigmatized identity seems more appealing to you – the individualistic approach of distancing yourself from the group, or the collective approach of redefining the group positively and advocating for change? What are the pros and cons of each?
5. If you were designing a research study to further understand the autism disclosure dilemma, what other variables would you want to measure? What methods besides surveys could provide valuable insights?