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

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Han, E., Scior, K., Umagami, K., Heath, E., Dufresne, S., & Crane, L. (2024). ‘Who, When, How to Share’: Pilot study of a new disclosure decision-making programme for autistic adults. Autism, 28(8), 2090-2104. https://doi.org/10.1177/13623613231221685

Publication date: 10 Feb 2024 Added to AutiHub: 14 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Emeline Han
  2. Katrina Scior
  3. Kana Umagami *
  1. Eric Heath
  2. Simone Dufresne
  3. Laura Crane

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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 20 Sep 2026 01:01.

Cited references
46
With a DOI
41
Without a DOI, from raw bibliography text
5
8 / 46 (17.4%) cited references include at least one author identified as autistic.
References with data to complete
3 / 46 (6.5%)
References with detected author names
43 / 46 (93.5%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
4
References with raw author names still to review
3
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
190
From DOI or external metadata
190
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
7
78 / 190 (41.1%) names are linked to an author already present in AutiHub. 112 / 190 (58.9%) names are not yet linked.
Names linked to a person identified as autistic
12 / 190 (6.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 12 / 78 (15.4%). Distinct people identified as autistic: 11 / 149 (7.4%).
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