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

Catherine J Crompton,Andrew C Stanfield,Christine Mcauliffe,Sonny Hallett,Sue Fletcher-Watson

doi:10.3389/fpsyg.2022.831628

Catherine J Crompton, Andrew C Stanfield + Show 3 more

Open Access

https://doi.org/10.3389/fpsyg.2022.831628

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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.

Highlights

Due to broader diagnostic criteria and increased public awareness (Rutter, 2005; Hansen et al, 2015) many autism diagnoses occur in adulthood (Fombonne, 2005; Happé et al, 2016)
Participants provided key insights into what peer support should focus on, how it should be run, and the specific benefits it may offer. According to these findings, maximising the potential of peer support will involve sustained funding, engaging with other specialist services, and training and support for facilitators. These findings are a crucial step in future studies that may examine the efficacy of a post-diagnostic peer support intervention for autistic adults
Our results suggested that a relational and emotional approach can be beneficial for autistic adults to help them re-frame their past experiences and work out where an autism diagnosis fits into their life

Summary

Introduction

Due to broader diagnostic criteria and increased public awareness (Rutter, 2005; Hansen et al, 2015) many autism diagnoses occur in adulthood (Fombonne, 2005; Happé et al, 2016). People seeking a diagnosis of autism for the first time in adulthood may diverge from prevailing stereotypes of autism. They are less likely to be male (Gould and Ashton-Smith, 2011; Bargiela et al, 2016) and less likely to have a learning disability than those who receive an earlier diagnosis (Matson and Shoemaker, 2009; Geurts and Jansen, 2012). Though autism diagnoses are more widely available, there are many barriers to efficient diagnostic assessment pathways, and appropriate post-diagnostic support (Huang et al, 2020). Difficulties with the diagnostic process, including long waiting lists, multiple referrals, and complex routes to diagnosis (Jones et al, 2014) are well documented (Crane et al, 2018). Clinicians face an increasing number of referrals and constraints on resources (Rutherford et al, 2016b)

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