An exploration from a life course perspective of the transition from school for autistic young people ​​​​​​​

Abstract

The transition from school is a feature of typical adolescence, but can be challenging for autistic young people. While their experiences at school can be difficult, schools also afford structure and routine and can provide external support for young autistic people and their families. They provide reasonably predictable social networks as well as opportunities to encounter others outside of the family. Upon leaving school, autistic young people lose ready access to expected routines and established social groups and often disengage from the community. For many, the transition from school is confusing and stressful.In this thesis, I explore, from a life course perspective, the transition from school for autistic young people without intellectual impairment. Life transitions involve relinquishing some roles and adopting others. Adopting new roles such as worker, homemaker, parent and spouse, which are more complex and less predictable than the role of school child, can be problematic for autistic young people. For example, the unpredictability of interview processes and environments (e.g., the questions to be asked, bright lights, distracting noises) can make getting a job difficult. Difficulties identifying and responding to unspoken social rules and workplace routines can result in loss of employment.The transition from school is one of many turning points within a person’s whole life. This transition follows experiences earlier in life (e.g., childhood and at school) and precedes later life stages. It also occurs in particular social and historical contexts. For example, current education provision in Australia is shaped by the inclusive education policies.In this research, I used focused ethnography to explore the following research questions: “What are the experiences and perceptions of autistic young people, their parents and caregivers and professionals of the transition from school for autistic young people?” and “What are the factors that help overcome obstacles for autistic young people during this transition?”. To learn from those directly involved in the phenomenon, I accessed three informant groups: autistic young people, parents and caregivers of a child on the Autism spectrum and professionals who work with autistic young people during the transition from school. The majority of the data were collected through participant-observation and recorded as field notes, with a small number of semi-structured interviews being conducted, audio-recorded and transcribed verbatim by the researcher.I gathered data from autistic young people in a range of social settings. In the role of observer-as-participant I attended transition meetings with school staff, a weekly social group over 10 weeks and a transition from school program (Studio G) fortnightly over 20 weeks. This prolonged engagement allowed me to build rapport with autistic young members of these groups, providing a foundation for conducting semi-structured interviews. In the role of participant-as-observer, I attended workshops and conferences over four years and had informal discussions with other delegates. At one conference, I participated in a week-long mentoring program for autistic young delegates in which I helped navigate their choice of concurrent sessions and facilitated debriefing discussions after sessions. I explored specific issues with people in the Autism community through a secret social-media group. I also conducted interviews with autistic young people, who heard about my research and contacted me.Parent and caregiver informants and professionals (allied health, school staff and those specialising in working with autistic young people) participated in informal discussions, mostly at conferences and workshops. A small number of discussions with parents and caregivers occurred in my role as an occupational therapist working with their children.Using constant comparison, I engaged in an iterative cycle of analysis and interpretation that changed as I collected more data and understood the phenomena better. I discussed interpretations with key informants to ensure the research findings were trustworthy and extensive.The findings indicated that a complexity of factors impacted on the transition from school for autistic young people. These included: co-occurring mental health challenges (e.g., anxiety and depression) and expectations from parents and caregivers. Seven factors appeared supportive of a successful transition. These were: 1) Having positive family supports, 2) Learning how to self-advocate, 3) Accessing the right supports at school, 4) Using strengths and passionate interests, 5) Mentoring, 6) Self-employment and 7) Autism awareness and acceptance in the community. The importance of the autistic culture pervaded the findings. The issue of diagnosis was raised often, revealing a variety of experiences. While some people were diagnosed later, particularly females, receiving a diagnosis generally enabled them to find a community and develop a greater understanding of themselves. Understanding the transition from school for autistic young people from a life course perspective highlights the importance of earlier life experiences and expectations of the future, as well as the broader social and historical context in which the autistic young person lives. This includes the existing autistic culture, which can offer autistic young people and their families a sense of belonging, acceptance and a healthy self-identity.