“A Group of Fellow Travellers Who Understand”: Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood

Abstract

Receiving a diagnosis of autism in adulthood can be a life changing event, impacting identity, relationships, and mental health. A lack of post-diagnostic support has been highlighted by autistic adults, their allies, clinicians, and service providers. It can be a source of distress for autistic adults, reinforcing feelings of social isolation and rejection. Peer support could be a cost-effective, flexible, and sustainable model to provide community-based support for autistic adults. However, there is little research on the value of peer support, despite calls from the autistic community. This qualitative study explored autistic experiences and needs post-diagnosis, identifying specific ways that peer support may benefit them, and exploring the limitations of peer support. Twelve autistic adults who had all received an autism diagnosis in adulthood completed a semi-structured interview focussing on the diagnostic experience, post-diagnostic support needed and provided, engagement with the autistic community, and post-diagnostic peer support. Thematic analysis of interview transcripts resulted in four themes: (1) Mismatch in support needed and provided; (2) Community connection; (3) Flexible and personalised support; and (4) Sustainability. Participants indicated that peer support may be a useful mechanism to support autistic adults’ post-diagnosis and offers unique opportunities not available through other support channels. Though informal peer support exists, it could be more sustainable and effective if well-supported and funded.

Virtual group-based mindfulness program for autistic women: A feasibility study

“…Non-gender specific autism research has highlighted the benefits of peer support and connectedness within the autistic community. 34 , 35 As well, gender-specific addiction treatment studies in non-autistic women have shown the value of women’s only treatments. 20 , 36 , 37 It has been suggested that women’s only group therapy can feel safer, more supportive and more comfortable, and allow women to discuss gender-specific concerns.…”

Psychosocial Factors Associated With Camouflaging and Its Relationship With Mental Health and Well-Being in Autistic and Non-autistic People: A Mixed Methods Systematic Review

“…Therapeutic work aimed at increasing selfcompassion could help autistic individuals reframe their struggles and develop a more positive selfconcept, with benefits for mental well-being (Cai & Brown, 2021). Furthermore, autistic people should be provided access to autistic-led spaces and communities where they feel safe and supported enough to unmask (Crane et al, 2021;Crompton et al, 2022). As autistic individuals often struggle to balance the tension between camouflaging and disclosure, clinicians could engage them in collaborative and supportive discussions, working through decisions about "whether, when, with whom, and for which purposes" they could camouflage or disclose (Loo et al, 2021, p. 33).…”

Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis

“…In light of these difficulties, our participants expressed the need for peer support from other autistic parents. Recent research [64][65][66] has shown that peer support is an effective form of support. Supportive interaction with other autistic people also protects against the effects of minority stress and provides a sense of belonging 67 .…”