Autistic adults diagnosed later in life often face complex decisions about whether to disclose their diagnosis.
They may share it to access support, explain their differences, or embrace their identity. However, fears of stigma, disbelief, or negative consequences can lead them to withhold it.
Disclosure is rarely straightforward—it involves weighing personal needs, social risks, and the potential impact on relationships, often without clear guidance or support.
Au-Yeung, S. K., Freeth, M., & Thompson, A. R. ‘Am I gonna regret this?’: The experiences of diagnostic disclosure in autistic adults. Autism. https://doi.org/10.1177_13623613251337504
Key Points
- Phenomenon Explored: The study investigates how autistic adults experience disclosing their autism diagnosis to others.
- Research Aims: To understand the functions, challenges, and impacts of diagnostic disclosure among autistic adults diagnosed later in life, and to explore implications for post-diagnostic support.
- Qualitative Approach: Interpretative Phenomenological Analysis (IPA) was used to explore subjective lived experiences.
- Key Findings:
- Disclosure served multiple purposes: accessing support, fostering authenticity, and engaging in activism.
- Participants experienced varied reactions to disclosure, including disbelief, support, and shifts in relationships.
- Negative experiences (e.g., invalidation, unmet needs) often led to increased caution or avoidance of future disclosure.
- Implications: Highlights the need for structured, ongoing post-diagnostic support that includes guidance on disclosure and its consequences, tailored to individual needs.
Rationale
Receiving an autism diagnosis in adulthood is increasingly common, yet little is known about how adults navigate the disclosure process.
Existing research has primarily focused on workplace contexts or mixed samples without exploring the specific challenges faced by those diagnosed later in life.
- Knowledge Gap: Prior studies emphasized workplace disclosure and outcomes but overlooked broader relational and emotional aspects. UK-based perspectives are especially underrepresented.
- Addressing the Gap: This study focuses specifically on UK adults diagnosed within the last ten years, examining how they experience, manage, and are affected by disclosure.
- Research Questions:
- What are the lived experiences of autistic adults disclosing their diagnosis?
- How do individuals make decisions about when, how, and to whom to disclose?
- What supports or hinders their ability to disclose effectively?
Method
- Sample: 12 autistic adults diagnosed in adulthood within the last 10 years, living in the UK. Ages ranged from 20s to over 60. Gender identities included female (6), male (4), and non-binary (2). The majority were White British.
- Recruitment and Setting: Participants were recruited via an autism research lab database and social media. Interviews were conducted either in person or online.
- Data Collection: One-hour semi-structured interviews explored experiences of diagnostic disclosure. Interview guides were co-developed with autistic individuals.
- Analysis: Verbatim transcripts were analyzed using IPA. Coding included descriptive, linguistic, and conceptual layers. Personal Experiential Themes (PETs) were developed and aggregated into Group Experiential Themes. NVivo 10 software supported the analysis. Reflexivity and audit checks ensured methodological rigor.
Results
Four major themes emerged, each with subthemes:
- Functions of Disclosure
- Accessing Support: Disclosure was often necessary to obtain accommodations, especially in employment or healthcare. “Without the diagnosis, you don’t get things like social service support…” (Tina)
- Becoming Myself: Participants felt that disclosure allowed them to be authentic and stop masking. “…just accept.” (Michael)
- Activism and Its Burden: Disclosure was also used to challenge stereotypes and promote awareness, though it often felt emotionally taxing. “I’ve felt empowered now to push them…” (Josh)
- Approaching the Conversation
- Managing Disclosure and Reactions: Disclosure was anxiety-inducing and involved strategic decisions about timing and audience. “Am I gonna regret this?” (Liza)
- Disclosure Started Pre-Diagnosis: Many initiated disclosure discussions even before a formal diagnosis. “Maybe, maybe.” (Brandon)
- Impact on Others: Reactions varied—some supportive, others dismissive or emotionally unsettled. “He saw a lot of himself in me…” (Jess)
- Negative Effects of Preconceptions
- Disbelief and Imposter Syndrome: Participants felt invalidated and questioned the legitimacy of their diagnosis. “‘If you feel that helps you… but I don’t think you’re autistic.’” (Jane)
- Not Having My Needs Met: Disclosure often failed to result in meaningful support. “Why do you need adjustment, maybe you shouldn’t be here.” (Jess)
- Caution and Avoidance: Negative reactions made participants more guarded in future disclosures. “I don’t want disclosure to hinder my progress…” (Josh)
- Openness, Acceptance, and Finding Community
- Positive disclosure experiences led to stronger connections, community belonging, and emotional relief. “You’ve just joined the most interesting club in the world…” (Jane)
Insight
- Novel Findings:
- Disclosure begins before formal diagnosis and unfolds over time.
- It functions not only as a practical act but also an existential and political one.
- Contribution to Understanding:
- Highlights the emotional labor and strategic thinking involved in disclosure.
- Illuminates the intersection of autism with gender, workplace dynamics, and social identity.
- Extension of Prior Research:
- Builds on workplace-focused studies by examining broader relational and systemic contexts.
- Confirms previous findings on stigma while introducing activism and imposter syndrome as key dynamics.
- Future Research Directions:
- Explore disclosure among more ethnically and socioeconomically diverse samples.
- Investigate non-verbal and alternative forms of disclosure.
- Study the impact of peer-led support programs on disclosure outcomes.
Clinical Implications
- Support Integration: Discussions of disclosure should be routine in post-diagnostic care, ideally tailored to personal contexts (family, work, healthcare).
- Program Design: Services should offer flexible formats—one-to-one, group, and peer-led interventions—to support decision-making and emotional processing.
- Professional Training: Clinicians should be trained to understand the emotional risks of disclosure and support individuals in managing identity transitions.
- Intersectionality: Care plans must consider intersecting identities (e.g., gender, ethnicity, co-occurring conditions) and the stigma experienced in different systems.
Strengths
This study had several methodological strengths, including:
- The study used IPA, a method well-suited for exploring complex personal experiences.
- Community involvement helped ensure interview questions were relevant and respectful.
- Reflexivity was maintained throughout, with the lead author keeping a reflective log.
- An audit trail and co-author validation enhanced credibility.
- The use of direct quotations deepened interpretive richness and grounded insights in lived experiences.
Limitations
This study also had several limitations, including:
- Sample Homogeneity: Predominantly White British participants limit generalizability across cultural contexts.
- Uncollected Data: Socioeconomic status was not reported, which may influence disclosure experiences.
- Variability in Diagnosis Experience: Participants received diagnoses from different services, which may have shaped their support experiences unevenly.
- Communication Bias: The interview method may have excluded non-speaking autistic individuals or those who use alternative communication methods.
Socratic Questions
- Methodology:
- How does the use of interpretative phenomenological analysis shape the findings compared to a grounded theory or ethnographic approach?
- What might have been missed by excluding non-speaking autistic individuals?
- Findings:
- How do societal stereotypes about autism influence the way individuals feel about their own diagnosis?
- In what ways does disclosure function as a form of activism, and what risks does that carry?
- Clinical Implications:
- Should all autistic adults be encouraged to disclose their diagnosis? What ethical considerations come into play?
- How can clinicians help clients weigh the benefits and risks of disclosure in different settings?
- Alternative Perspectives:
- Could nondisclosure be reframed as a valid and empowering choice rather than an avoidance?
- How might disclosure experiences differ for individuals from minority ethnic or religious backgrounds?
- Application:
- What would a comprehensive post-diagnostic support program look like based on these findings?
- How can workplaces be trained to respond more supportively to diagnostic disclosure?
