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

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

‘I never realised everybody felt as happy as I do when I am around autistic people’: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family

AbstractMany autistic people are motivated to have friends, relationships and close family bonds, despite the clinical characterisation of autism as a condition negatively affecting social interaction. Many first-hand accounts of autistic people describe feelings of comfort and ease specifically with other autistic people. This qualitative research explored and contrasted autistic experiences of spending social time with neurotypical and autistic friends and family. In total, 12 autistic adults (10 females, aged 21–51) completed semi-structured interviews focused on time spent with friends and family; positive and negative aspects of time spent with neurotypical and autistic friends and family; and feelings during and after spending time together. Three themes were identified: cross-neurotype understanding, minority status and belonging. Investigation of these themes reveals the benefits of autistic people creating and maintaining social relationships with other autistic people, in a more systematic way than previous individual reports. They highlight the need for autistic-led social opportunities and indicate benefits of informal peer support for autistic adults.Lay abstractAlthough autistic people may struggle to interact with others, many autistic people have said they find interacting with other autistic people more comfortable. To find out whether this was a common experience, we did hour-long interviews with 12 autistic adults. We asked them questions about how it feels when spending time with their friends and family, and whether it felt different depending on whether the friends and family were autistic or neurotypical. We analysed the interviews and found three common themes in what our participants said. First, they found spending with other autistic people easier and more comfortable than spending time with neurotypical people, and felt they were better understood by other autistic people. Second, autistic people often felt they were in a social minority, and in order to spend time with neurotypical friends and family, they had to conform with what the neurotypical people wanted and were used to. Third, autistic people felt like they belonged with other autistic people and that they could be themselves around them. These findings show that having time with autistic friends and family can be very beneficial for autistic people and played an important role in a happy social life

‘Someone like-minded in a big place’: Autistic young adults’ attitudes towards autistic peer support in mainstream education

Autistic young people in mainstream schools often experience low levels of peer social support, have negative perceptions of their differences and feel disconnected from their school community. Previous research findings have suggested that encouraging autistic young people to explore autistic culture and spending time with autistic peers may be associated with more positive outcomes. Autism-specific peer support is a framework that may support this process. Thirteen participants (eight male/five female) completed semi-structured interviews, exploring the idea of autism-specific peer support within mainstream schools and the practicalities of how it may work within a school setting. Thematic analysis was applied, and three themes are reported: (1) neurodiversity and an ethos of inclusivity, (2) flexibility and (3) benefits and challenges of embedding peer support in the wider school community. The idea of autism-specific peer support for autistic pupils in mainstream secondary schools was generally positively received. Peer support may provide a unique opportunity for autistic pupils to interact in a natural, comfortable way; share useful strategies; and build their identities. Nevertheless, careful design, training and ongoing support, alongside awareness of the rights, needs and preferences of individual pupils involved are likely to be crucial in ensuring the success of any peer support programme

Development and Validation of a Novel Self-Report Measure of Monotropism in Autistic and Non-Autistic People: The Monotropism Questionnaire

Monotropism seeks to explain autism in terms of attention distribution and interests. Despite having strong subjective validity to autistic people, and potential to explain the overlap between autism and Attention Deficit Hyperactivity Disorder (ADHD), it has been little investigated formally. This is in large part due to lack of reliable and valid measures to capture the construct. In this study, we aimed to develop and validate a novel self-report measure, the Monotropism Questionnaire (MQ), in autistic and non-autistic people. The MQ consists of 47 items, which were generated by a group of autistic adults based on their lived experience and academic expertise. A sample of 1,110 participants (756 autistic, 354 non-autistic) completed the MQ online, as well as two established, short measures of autism, the Ritvo Autism Asperger Diagnostic Scale-14 (RAADS-14) and the Autism Quotient-10 (AQ-10). Exploratory factor analyses suggested an 8-dimensional structure was optimal and the subscale scores showed high internal consistency reliability. The measure had very good convergent validity with the RAADS-14 and AQ-10 (all rs > .61). Attention-deficit/hyperactivity disorder (ADHD) and autism status were both significantly associated with higher mean monotropism scores. Overall, the MQ had good psychometric properties. Future research should be undertaken to test this finding, particularly across demographic and diagnostic groups, and apply the MQ to predictions of Monotropism theory