| Summary: | Background: Autism spectrum conditions (ASCs) are characterised by difficulties in social communication and social interaction. The experience of receiving a diagnosis of an ASC and the process of accepting this are recognised as potentially stressful events for individuals and their families. Individuals‟ experiences of assessment and receiving an ASC diagnosis during adolescence have not been explored in the literature. This is important as adolescence may be a particularly challenging time for individuals with ASCs and the diagnosis of an ASC could make the developmental tasks associated with adolescence more difficult. Furthermore, young peoples‟ experiences of the diagnostic process have yet to be explored alongside the experiences of their parents, however, parents may be able to support young people to develop a coherent narrative about stressful events. Aims: To explore the lived experiences of young people with ASCs and their parents/carers of the process of assessment, receiving and living with a diagnosis of an ASC during adolescence. To consider the similarities and differences in young people and their parents‟ experiences. Methods: Four dyads of young people (14-16 years) who had received a diagnosis of an ASC 6 months - 4 years previously, and their mothers, were recruited. Semi-structured interviews were used to explore their experiences. Interpretative phenomenological analysis (IPA) was used to identify emerging themes. Results: Four super-ordinate themes emerged that related to the research question. The first three themes depicted a chronological process comprising of: 1. The Journey to Diagnosis, 2. Accepting and Incorporating ASCs into our Understanding and 3. Living with a Label. The final theme: 4: Living with an ASC in Adolescence depicted young peoples‟ and mothers‟ experiences of day–to-day life with an ASC in adolescence. Conclusion: This study provides an insight into the experiences of young people and their parents of assessment, receiving and living with a diagnosis of an ASC during adolescence. Participants had varied experiences and a number of factors appeared to influence their reactions to and acceptance of the diagnosis. Notably, young people described difficult experiences of assessment. Young people and their mothers‟ experiences differed across some or all stages of the process. Participants also discussed what it was like to live with an ASC during adolescence. The experiences of young people and mothers were broadly similar to the existing literature, however, some aspects may be specific or particularly relevant to the stage of adolescence. The findings have implications for services that carry out assessments for ASCs and work with families living with ASCs and highlight areas where further research is required.
|
|---|
