‘It’s autism, it’s just a name’: Exploring the impact of autism spectrum diagnosis with adolescent females using Interpretative Phenomenological Analysis.

Individuals regarded as being on the autism spectrum are commonly understood to experience difficulties with social communication and to have an inflexible style of thinking (APA, 2013). Recent research has proposed a prevalence rate for autism in the UK of 1.04 per cent (104 in 10,000) (MacKay, Boyle and Connolly, 2016). Autism ‘diagnosis’ in the UK is a National Health Service-led process, whereby professionals involved, compare a child or young person’s behaviours against a behavioural checklist (NICE, 2011): hence the use of medical language or terminology around this topic.
For children and young people autism diagnosis tends to be ‘done to’ or ‘given’, rather than ‘done with’ or ‘sought’. I wanted to hear the views of adolescents who had been given an autism spectrum diagnosis and to explore the impact of this diagnosis on their relationships, their sense of self and their future aspirations. I hope that health and educational professionals and young people will be interested in hearing these voices and viewpoints.
I decided to focus upon adolescent females, a group whose voices are missing from much of the literature around this subject. There are many more males diagnosed with autism than females and autism could therefore be regarded as a predominantly male ‘disorder’ or ‘condition’. Adolescent females who are diagnosed with autism experience a dual difference: difference from their ‘typical’ peer group and being in a female minority of people ‘diagnosed’ with autism.
Six females aged between 14 and 20 participated; five participants were attending mainstream schools and one participant is a university student. Interpretative Phenomenological Analysis (IPA) was used to analyse or make sense of participants’ accounts and to identify superordinate themes for individual participants and across the group. IPA aims to offer insights into how a person makes sense of a given phenomenon, in the case of this research, having been given an autism spectrum diagnosis. Three superordinate themes for the group emerged from IPA analysis: Understanding Autism, Acceptance or Rejection and Self and Autism.