Abstract
Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic.
Highlights
Our conceptions of autism have changed over time
We report on an initial evaluation of an autistic-led post-identification programme for autistic adults recently identified or diagnosed as autistic
Participants expressed a wish for other autistic adults to benefit from the programme in the same way that they did: “it would be great if this expanded and more people had options to do it in more places” (Callum); “It has been amazing and I think there were a lot of people who would really benefit from coming on it and I think it would be a real shame if we couldn’t carry on with them” (Danielle). This initial evaluation demonstrated that an autistic-led peer support programme for autistic adults was well-received, with participants benefiting greatly, in many different ways
Summary
Our conceptions of autism have changed over time. Whilst early accounts suggested that autism was a childhood condition, largely affecting those with associated challenges in language and intellectual functioning (e.g., Kanner 1943), the spectrum of autism was subsequently widened to include those who met the core criteria for an autism diagnosis, but who did not have co-occurring intellectual disability and/or early language delays (who were, until recently, considered to have ‘high functioning’ autism or Asperger syndrome) (Hansen et al 2015; Fletcher-Watson and Happé 2019). Many adults have been identified as autistic later in life, having slipped through the diagnostic net in childhood (Happé et al 2016). This is true for people who may not conform to traditional, stereotypical descriptions of autism (e.g., women and girls), and may be vulnerable to missed (or mis-) diagnosis (Bargiela et al 2016; Gould and Ashton-Smith 2011; Leedham et al 2019). Diagnosis in adulthood can lead to better self-awareness, and an appreciation of personal needs (Stagg and Belcher 2019) This identification may come as a complete surprise: commonly stemming from an assessment for another condition (e.g., a mental health diagnosis) or following their children receiving an autism diagnosis (Crane et al 2018).
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