Crane Laura, Hearst Caroline, Ashworth Maria, Davies Jade
Centre for Research in Autism and Education, University College London, London, UK.
AutAngel, Reading, UK.
Autism Dev Lang Impair. 2023 Jul 27;8:23969415231189608. doi: 10.1177/23969415231189608. eCollection 2023 Jan-Dec.
BACKGROUND & AIMS: Exploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.
We used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.
Experiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups).
The online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.
From the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised.
“探索自闭症”是一项由自闭症患者主导的团体项目，为新确诊的成年自闭症患者提供心理教育和同伴支持。2020年，由于新冠疫情后实施的社交距离措施，“探索自闭症”项目改为线上开展。在此，我们旨在重复之前对“探索自闭症”线下项目的研究，以确定该项目线上开展时是否能获得类似结果。此外，我们旨在识别线上开展所带来的独特机遇与挑战。
我们采用基于社区的参与式研究（CBPR）方法，即“探索自闭症”项目的自闭症开发者和 facilitator 在整个研究过程中与一组学术研究人员合作。我们共同评估了线上“探索自闭症”项目的两个版本，共有16名参与者。参与者在项目开始前期间和结束后完成问卷。参与者还被邀请参加两次项目后的（团体或个人）访谈：一次在项目结束时（时间点一），另一次在6 - 8个月后（时间点二）。如果参与者至少完成了一份问卷或一次访谈，就被纳入研究。数据采用反思性主题分析进行定性分析。
参与该项目的体验总体呈积极态势。参与者赞赏项目由自闭症患者主导的性质，在团体的多样性中找到归属感，并因该项目形成了积极且实用的观念。对我们数据的进一步分析显示，对于该项目的线上开展存在不同看法。注意到了线上开展的机遇，比如这种参与方式减轻了认知负担，使更多参与者能够参与该项目，并促进了参与者之间有意义的社交联系。然而，技术和实际问题被认为造成了障碍，而且参与的一些人际方面被认为“在翻译中丢失了”（例如在分组讨论中）。
“探索自闭症”项目的线上开展与之前该项目的线下评估结果相似。虽然我们确定了线上开展的积极方面，但这种方式并不完全适合所有人的需求。
基于当前研究结果，我们可以提出几项建议来为自闭症患者开发线上支持服务。首先，灵活性是关键。为了使支持服务能被广泛的自闭症患者所接受并具有包容性，应考虑让参与者选择线下、线上或混合形式参与。其次，如果在线提供支持服务，应谨慎考虑使用分组讨论室。虽然参与者赞赏有机会结识不同的人，但一些参与者发现分组讨论室的不可预测性和缺乏引导具有挑战性。为了减轻这些挑战，可以预先确定小组并提前与参与者分享（不过应考虑小组如何“适配”，以及是否应定期更改分组）。还应向在分组讨论室中的人发出温和提醒，告知他们需要重新回到主组。最后，应优先提供与参与相关的技术方面的支持。
