Emeline Han, Katrina Scior, Kana Grace, Eric Heath, Simone Dufresne, and Laura Crane (2024).
https://doi.org/10.1177/13623613231221685
Autistic adults often face a dilemma of whether and how much to conceal or reveal about their autistic identity. Disclosure can lead to understanding and support, but also judgement and discrimination.
This study looks at a new programme for autistic adults adapted from the Honest, Open and Proud (HOP) programme. HOP is a peer-led group programme for adults with mental health conditions, focused on weighing the pros and cons of disclosure and crafting personal stories to disclose with.
The authors adapted HOP for autistic disclosure with direct autistic input. As autistic people preferred to take part flexibly, the programme was designed in a self-guided format with the option to talk to an autistic facilitator and join an online forum with other participants. The programme was renamed ‘Who, When, How to Share’ as it did not try to persuade autistic people to disclose, but to help them make their own personal decisions. It also encouraged participants to craft their story based on the idea of neurodiversity, including their strengths and challenges.
This programme was tested with 32 autistic adults over three weeks and 19 of them completed the programme. Some said they needed more time and support to complete it.
Participants thought the self-help guide was helpful, especially with explanations and examples of disclosure situations, though a few found it too wordy. The fact that peer support was available but optional brought comfort without expectation. Many avoided the online forum as they were still learning about disclosure and did not feel ready to discuss it with others.
After the programme, participants felt more informed and confident about their disclosure decisions. Participants also found what they learnt helpful for thinking about their other hidden identities, which may be a useful way to build this programme further. Participants gave some important suggestions to improve the programme, like adding videos and audio to make it more accessible and interactive.