Experiences of autism: Perspectives from adolescents on the autism spectrum

Author: Franki Ford

Ford, Franki, 2023 Experiences of autism: Perspectives from adolescents on the autism spectrum, Flinders University, College of Education, Psychology and Social Work

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Despite the increased prevalence of autism, there are limited data about how adolescents on the autism spectrum experience autism and, in particular, how they respond to receiving an autism diagnosis from an insider perspective. Adolescence can be a very challenging time for people on the autism spectrum as they enter adulthood where increased socialisation and flexible processing styles are required (Bedard & Hecker, 2020; Sharma & Seshadri, 2020; Westhoff et al., 2020). During adolescence, a person is required to construe increasingly unfamiliar social settings and undergo a range of physiological, emotional, and cognitive changes as they attempt to create a personal and social group identity. Ten adolescents with a formal diagnosis of autism, but no intellectual disability (ID), participated in a semi-structured interview and a modified repertory grid technique (RGT) assessment (Kelly, 1955). The RGT was designed to develop insight into their experiences of receiving and having a diagnosis of autism and their perceptions about its influence on the development of their self. A personal construct theory (PCT) approach was adopted to interpret participants’ experiences using Kelly’s 11 corollaries, which describe the various construct types that people use to construe their own realities.

This research also examined the utility of the PCT approach in understanding the participants’ lived experiences. A model is proposed of both vulnerability and protective mechanisms, together with external and internal influences, on the development of the adolescents’ self-identity. Outcomes of the research indicated that whilst the adolescents in this research had high school experiences of bullying, which resulted in isolation, exclusion, and rejection, they also acknowledged that their diagnoses contributed to greater self- awareness and self-acceptance. These findings are significant because the literature revealed that adolescents on the autism spectrum can experience low levels of self- acceptance, a loss of identity, poor mental health outcomes, high rates of suicidality, suicide attempts and death by suicide when compared with their non-ASD same-aged peers (Hirvikoski et al., 2020; Jager‐Hyman et al., 2020; Kirby et al., 2019; Kõlves et al., 2021; White et al., 2017). Most participants recommended increased autism awareness by their peers and teachers, and a need for greater inclusion in the school setting, which suggests that the schools in this research perpetuated a Medical Model of Disability that intensified feelings of difference for these research participants. Despite their self-reported negative experiences of having a diagnosis of autism, participants in this research shared a strong sense of self and perceived their autism to be intrinsically interwoven with their self-identity.

Keywords: Key words: adolescence, autism, inclusion, personal construct theory (PCT), qualitative research, repertory grid technique (RGT), schools, self-identity, vulnerability and protective mechanisms

Subject: Disability Studies thesis

Thesis type: Doctor of Philosophy
Completed: 2023
School: College of Education, Psychology and Social Work
Supervisor: Associate Professor Kerry Bissaker