Choosing whether to disclose that you are autistic is an individual decision. But what happens when an individual tells others they are autistic? Under what circumstances do they disclose their autism? And how can this information help others decide about their own autism disclosure? These key questions were the focus of two studies by Aspect Research Centre for Autism Practice.
Feeling excluded and misunderstood has implications for both physical and mental health. Personal interactions are part of the story, but the way we design policies, places and services also add to exclusion.
There is a lot of research on disclosure for Autistic individuals; however, the information is not easy to understand or use when making personal decisions about whether or not to disclose.
Study one – disclosing
Most participants participating in an online survey told at least one other person they are autistic. About one third told most of their regular contacts. Only 2% didn’t tell anyone. Half the participants preferred to tell people face to face. Delving deeper into the responses, a lot depended on who they told.
Telling healthcare workers, family and friends generally received a positive response. However, telling co-workers had a higher negative impact. If the individual feels that being autistic is part of their identity, they are more likely to tell others.
Study two – experiences
In study two, participants used a smart phone app to record disclosure opportunities over a 2 month period. Telling others in a conversation was the preferred way to disclose. The experiences of disclosing in different settings was generally positive overall. Surprisingly, disclosing at home had the lowest positive score while the community had a high score.
The researchers found that disclosure led to a wide range of reactions and the decision to disclose was influenced by the context. However, participants learned from telling others, and developing skills in disclosing was important.
The findings from these studies were used to inform a set of guides for autistic people and non autistic people. The Autism Spectrum Australia website has separate downloadable guides:
- Disclosure opportunities resource guide for autistic people
- Disclosure opportunities resource guide in Easy English
- Supporting autistic people who may want to disclose guide for non autistic people
The full report
The full report, I am Autistic: Disclosure experiences of Autistic adults, summarises the two studies with more detail than the guides. Two quotes from the report illustrate the importance of identity:
”I didn’t feel I had my own identity until I was diagnosed. I also never felt part of any community until I was diagnosed.”
“Finally knowing where I fit in life and being able to embrace that and then tell other people about my autism – it all is connected and leads to a greater me.”