Disclosing autism: to tell or not to tell
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Disclosing autism: to tell or not to tell someone about my autistic diagnosis
Disclosure of Autism is a personal choice with potential positive or negative impacts on relationships and employment.
Existing research on disclosure is complex and difficult to apply to individual decision-making.
Objective information about the consequences of disclosure is essential to help Autistic individuals make informed choices, and workplaces should create a safer environment for those who decide to disclose.
Real-life autism disclosures are complex – and reactions can range from dismissal to celebration
Media personality Em Rusciano has expressed shock after another radio presenter accused her of “leaping on the bandwagon” by widely sharing her autism diagnosis and its impact on her daily life.
The prevalence of autism in our society is increasing as awareness and research escalates. At least one in 100 people are Autistic, yet only a minority openly disclose it due to uncertainty over how it will be received.
Here’s what Autistic people told us about what real-life autism disclosure experiences look like. And what workplaces should do to make it safer for people to share this aspect of their identity if they choose to?
Tracking experiences of autism disclosure in real time
A major two-month study by the Aspect Research Centre for Autism Practice (ARCAP) documented 231 experiences of 36 Autistic adults, aged 21 to 71, disclosing autism.
Using a specially designed smart-phone application meant we could track experiences across different environments and get a glimpse of real-time, daily disclosure opportunities that Autistic people experience.
We learnt about the thought processes behind a decision to disclose, or not disclose. We noted positive and negative experiences and which environments were more conducive.
Why disclose autism – or decide not to?
So what are people's motivations or reasons for disclosing autism? Some people in our study disclosed their Autistic identity/diagnosis for these reasons:
• To gain accommodations and support
• To advocate for the Autistic community
• To become braver and more authentic in who they are.
The decision to disclose an autism diagnosis can be a “lose-lose” one for the Autistic person. Not disclosing can contribute to mental health concerns such as stress and anxiety. Whereas sharing being Autistic can have life-changing outcomes, for instance, the loss of job opportunities.
During our study on disclosing autism, 153 opportunities were categorised as “disclosure”, where the participant shared they were Autistic. We labelled 78 opportunities as “non-disclosure”, where the participant felt there was an opportunity, but decided not to share.
The most common way our participants shared they were Autistic was a face-to-face conversation (43%). The least common ways participants disclosed were via email (4%), phone call (3%), text (3%) and doctor’s letter (0.4%).
Safety was a key consideration behind disclosure, where participants shared they were Autistic when others were “already aware of my sensory issues. I felt safe disclosing to him”.
But it required time and energy, and other participants didn’t disclose because they “felt exhausted socially” or “had an uncomfortable vibe” about a work leader.
Words and reactions to disclosing an autism diagnosis can be positive or negative
The research provided insight into the most common negative and positive reactions that followed an autism disclosure.
For example, one respondent felt “dismissed or gaslighted”. Others experienced shocked reactions and were asked how they could be a hairdresser if they had autism. Or received an odd look and no response.
Positive responses ranged from neutral reactions, such as “normal, almost no reaction” and not being treated any differently, to a feeling of liberation “not to be judged but rather encouraged and celebrated”.
Some environments were better than others to disclose
The research shows people's experiences when disclosing autism are influenced by context. The most common place for disclosure by Autistic adults was in the workplace (31%), followed by the community (21%), education settings (11%), home (11%), health care (9%) and retail (6%).
Of these disclosure contexts, the workplace proved to be the environment with the most negative disclosure experiences, with frequent references to discrimination and bullying
"People's experiences when disclosing autism are influenced by context."
So what would make autism disclosure decisions easier?
Employers need to assume more responsibility in creating a safe environment where Autistic staff can disclose if they choose to. This can include adjustments to the hiring process (such as work trials compared to interviews), working conditions (more flexibility to work from home), sensory environment (such as lighting or sound modification) and methods of communication (such as clear written guidance).
Disability awareness training would be beneficial across all workplaces, including with health-care professionals. This is particularly important as this group is key to providing education and reducing misunderstanding across contexts.
On a broader societal level, we need to value and support people who may think or act differently to what’s expected. Nobody should feel they have to share something private and personal in order to be treated with respect.
And people on the receiving end of disclosure need to know this is often a scary decision. It may mean your colleague or friend feels safe and trusts you with this information. Believe them and accept them. They are still the same person as before.
Practical guides for autism disclosure
Society has a long way to go before we can simply promote blanket disclosure of autism. Until then, Autistic people need support to decide whether to disclose their identity.
Autism Spectrum Australia (Aspect) developed a series of practical evidence-based resource guides based on our findings.
The guides support Autistic people in their disclosure experiences, and provide helpful advice for colleagues, employers, friends, educators and family.
Chris Edwards, the author of "Disclosing autism: to tell or not to tell," is a Postdoctoral Researcher with Autism Spectrum Australia (Aspect), Adjunct Research Fellow, Menzies Health Institute Queensland, Griffith University