Who, When, How to Share: Pilot study of a new disclosure decision-making programme for autistic adults

• DOI: 10.31219/osf.io/bztuq
• Publication Date: 2023-05-30T05:00:25Z
• Authors: Emeline Han; Katrina Scior; Kana Grace; Eric Loveland Heath; Simone Rae Dufresne; Laura Crane
• Keywords: Male; Adult; support; pilot; programme; Decision Making; autism; Social Support; Pilot Projects; decision-making; Original Articles; Middle Aged; Peer Group; Young Adult; stigma; autistic adults; Humans; Female; Autistic Disorder; disclosure; intervention; feasibility

In this pilot study, we report on the feasibility, acceptability and preliminary impact of ‘Who, When, How to Share’, a new disclosure decision-making programme for autistic adults. We evaluated this programme using pre-post mixed methods surveys that included questions about participants’ experiences of the programme and four psychosocial outcome measures. Thirty-two autistic adults completed the pre-programme survey and enrolled into the programme, nineteen of whom completed the programme and post-programme survey. Our findings showed that it was feasible to deliver the programme in a guided self-help format, although a minority of participants found it challenging to complete the programme independently and within the study time frame. High levels of satisfaction and positive qualitative feedback also suggested that the programme was acceptable to autistic adults. Participants provided useful recommendations for improvement, such as more interactive elements to enhance engagement. The programme was associated with statistically significant improvements in decisional conflict and disclosure-related distress, as well as non-significant reductions in stigma-related stress and internalised stigma. These promising results suggest that further evaluation of the programme is warranted.