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

Abstract

In this pilot study, we report on the feasibility, acceptability and potential 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. While 32 autistic adults completed the pre-programme survey and enrolled into the programme, there was high attrition, with only 19 autistic adults completing the programme and post-programme survey. We found that it was feasible to deliver the programme in a guided self-help format, although a minority of participants (who completed the programme or provided reasons for withdrawing from the programme) found it challenging to work through 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 showed potential to improve decisional conflict, disclosure-related distress, stigma-related stress and internalised stigma among autistic adults, though further evaluation of the impact of the programme is needed. Lay abstract ‘Who, When, How to Share’ is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further.