Many autistic adults feel torn about revealing their diagnosis — a new study explores why

A new study published in the journal Autism sheds light on how autistic adults navigate the complex and deeply personal decision to share their autism diagnosis with others. Researchers found that disclosure can serve meaningful purposes, such as accessing support, fostering self-acceptance, and engaging in activism, but also exposes people to disbelief, stereotyping, and emotional vulnerability. The findings suggest that many newly diagnosed adults in the United Kingdom lack adequate guidance on how to manage disclosure and would benefit from more structured post-diagnostic support.

Autism spectrum conditions affect how people experience the world, often influencing communication, social interaction, and behavior. While autism is frequently diagnosed in childhood, a growing number of people—especially women and those with less apparent support needs—are receiving diagnoses in adulthood. This shift reflects increasing awareness and improved diagnostic practices, but it also leaves many adults to navigate their diagnosis without the kind of developmental support available to younger individuals.

Receiving an autism diagnosis later in life can prompt a major re-evaluation of one’s identity and past experiences. But it also raises an important practical and emotional question: should one share this diagnosis with others, and if so, how? Disclosure can be necessary to access workplace accommodations, social services, or healthcare support. Yet many people fear being misunderstood or judged.

While previous studies have examined autism disclosure in specific contexts like employment, few have explored the broader, everyday experiences of adults who receive a diagnosis later in life. This study sought to fill that gap, focusing on adults in the United Kingdom who were diagnosed within the past ten years.

To investigate these questions, researchers from the University of Sheffield and Cardiff University used a qualitative method known as interpretative phenomenological analysis. This approach emphasizes understanding how individuals make sense of significant life events—in this case, the experience of disclosing an autism diagnosis.

The researchers conducted in-depth interviews with twelve autistic adults who had received their diagnosis in adulthood. Participants ranged in age, gender identity, and life experience. The team analyzed the interview transcripts to identify recurring themes and patterns in how participants thought about and approached diagnostic disclosure.

The study found that disclosure is rarely a simple or one-time decision. Rather, it is an ongoing process shaped by a person’s environment, relationships, and emotional readiness. From the interviews, the researchers identified four major themes: the functions of disclosure, how individuals approached the conversation, the effects of negative preconceptions, and the role of acceptance and community.

One key theme to emerge was that disclosure often served multiple functions. For some participants, sharing their diagnosis was a practical decision—it was the only way to access support at work, in healthcare, or in social services. Others saw disclosure as a step toward being more authentic in their relationships or workplace, allowing them to “be themselves” without masking their traits. For a few, disclosure also became a form of advocacy, as they sought to raise awareness or improve conditions for other autistic people.

At the same time, disclosing a diagnosis often felt fraught. Some participants described carefully managing who they told, how they explained it, and how they responded to other people’s reactions. Others said they began disclosing even before receiving a formal diagnosis, often discussing the possibility with close friends or family. In some cases, this made the eventual diagnosis easier to accept—for both the person diagnosed and those around them.

However, many also reported negative responses. Several participants described encountering disbelief, especially when they did not match other people’s stereotyped views of autism. Comments like “you don’t seem autistic” were common, leaving participants feeling invalidated or doubting themselves. This led some to experience what they described as “imposter syndrome,” questioning whether they really “deserved” the diagnosis.

These reactions were often shaped by widespread misconceptions about autism—such as the idea that autistic people must be male, socially isolated, or visibly struggling. Participants said these assumptions made it harder for them to be understood, even when they were seeking support.

The study found that people’s decisions to disclose—or not to—were often based on weighing potential risks and benefits. If participants believed disclosure would lead to meaningful support or understanding, they were more likely to share. If they anticipated judgment, discrimination, or indifference, they often withheld the information or disclosed only partially.

Many adopted what the researchers called “partial disclosure” strategies. For example, someone might tell an employer that they had specific sensory sensitivities or social challenges without naming autism directly. This allowed them to seek accommodations without risking stigma.

Others described limiting their disclosures to people they trusted or to environments where neurodiversity was understood and respected. Workplaces or communities that emphasized inclusivity were often seen as safer spaces for disclosure. On the other hand, experiences of dismissal or discrimination in education, healthcare, or employment led some participants to withdraw or avoid further interactions.

The emotional toll of disclosure was another recurring theme. Some participants spoke of feeling exhausted by having to educate others repeatedly. Others described the tension between wanting to be honest and not wanting to disrupt relationships or be perceived differently. In some cases, loved ones reacted with guilt or denial, especially if the diagnosis prompted them to reflect on their own traits or parenting.

Despite these challenges, many participants also described disclosure as a source of connection and support. When others responded with openness, curiosity, or a willingness to learn, it often led to stronger relationships. Some participants said that sharing their diagnosis had helped them find supportive communities, both online and in-person, where they felt seen and accepted.

Disclosure could also spark broader conversations about neurodiversity, both in families and workplaces. Several participants described how their openness had encouraged others to seek their own diagnoses or rethink assumptions about autism. For some, this brought a sense of purpose and belonging.

These positive experiences were most likely when others were already familiar with autism, had lived experience themselves, or were part of communities that valued inclusion. Participants emphasized that these interactions helped counteract feelings of isolation and reinforced a sense of identity.

The study’s authors argue that there is a significant need for structured post-diagnostic support for adults. At present, many people are left to navigate disclosure alone, without guidance on how to communicate their diagnosis or respond to others’ reactions.

The findings suggest that clinicians should incorporate conversations about disclosure into routine post-diagnostic care. This could include discussing who to tell, how to disclose, and how to handle potential challenges. Peer support groups, one-on-one counseling, and access to community resources were all highlighted as helpful by participants.

But the researchers caution against placing the burden of education solely on autistic individuals. While some participants found activism empowering, others felt overwhelmed by the expectation that they must constantly explain themselves. Services and employers need to improve their own understanding of autism rather than relying on individuals to do that work for them.

The study’s limitations include several factors related both to its design and to the inherent constraints of qualitative research. With a small sample of twelve participants, the findings may not be generalizable to the broader population of autistic adults. Additionally, while interpretative phenomenological analysis allows for deep exploration of lived experiences, it is shaped by the researcher’s interpretations and cannot provide objective or quantifiable conclusions.

The study, “‘Am I gonna regret this?’: The experiences of diagnostic disclosure in autistic adults,” was authored by Sheena K Au-Yeung, Megan Freeth, and Andrew R Thompson.