Disclosing new autism diagnosis - when? - to whom?

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When Ashleigh Keating worked as a primary school teachers’ aide, she would very rarely tell the teachers she supported she was autistic, even though her students often had the same disability.

Her reluctance was based on widespread ignorance and stigma around autism. She observed teachers did not have high expectations of autistic students, bad behaviour was blamed on autism and if a staff member was a “little bit of an interesting character”, it was assumed they must be autistic.

Keating had been burnt before. When she was 12, teachers disclosed her autism to her classmates without her permission after she had a meltdown. “I remember a comment along the lines of: ‘I always knew you were weird, but I couldn’t put my finger on it. But now I know why’,” she recalls.

Dr Abigail Love, lead researcher at the Aspect Research Centre for Autism Practice, said autistic people often had to weigh up the potential consequences of disclosing they are autistic, such as losing their job or dealing with negative reactions.

Some reported positive reactions. They said disclosing they were autistic enabled them to ask for support in the workplace, such as a quiet space or dim lights, and made them feel they could be themselves and stop “masking”.

However, others had negative experiences and felt they were targeted and treated differently after telling people they were autistic.

“A big one was about shock and dismay,” Love says. “A lot of participants said people would say ‘There’s no way you are autistic’, or ‘You don’t look autistic’. One person was complimented [and told] they should feel so proud because people would never know they were autistic. At times, they find they’re discriminated against, sometimes losing jobs and relationships.”

Keating, who was one of the research participants, now works in disability advocacy and feels comfortable disclosing she is autistic.

But recently, when she told a physiotherapist, she says she was treated like a child.

Sarah AlKamraikhi, a customer service representative who was diagnosed with autism a year ago at the age of 39, said telling people could be “really stressful and a bit scary”.

AlKamraikhi, who was also involved in the research project, mostly receives blank looks when she tells people she is autistic. “It might be surprise, or it might be just a lack of understanding of what the broader term of autism means outside of people with very high support needs. You have that media representation of that little boy who is non-verbal and has meltdowns.

AlKamraikhi recently had a negative experience in a hospital when a nurse told her that “autism really covers a broad spectrum of things”. “She was very dismissive and refused to comment further on it after that,” she says. AlKamraikhi felt she was being accused of trying to get attention.

The study showed participants sometimes found it easier not to reveal they were autistic, even though this meant they would not receive support and be put at increased the risk of mental health concerns.