“I have to charge my social battery”: Perspectives from autistic young adults on Quality of Life

Abstract

Several studies report on lower quality of life for autistic people when compared to non-autistic people. However, there are ongoing discussions about the conceptualization of quality of life for the autistic population. This qualitative study investigated self-perceived quality of life in the context of autistic young adults’ everyday lives. Participants (age range 21–29 years) were recruited from a 10-year follow-up study, Lillehammer Neurodevelopmental Follow-up Study, all diagnosed in childhood and adolescence. Fourteen individual in-depth interviews were conducted. When asked about what was important for having a good quality of life, our autistic participants described relationships to people and pets as important, as well as having meaningful activities. Specific interests had guided many to their choice of both academic and work career. Many also described obstacles in their environment that had influenced their quality of life negatively, such as being misunderstood by teachers and other professionals, being bullied, and sensory and emotional overload. Our findings indicate that those in supportive roles should provide help with establishing connections to activities and people/animals, as this seems to be essential for creating a good quality of life. Taking advantage of passions and interests can create opportunities for autistic people. Findings suggest that future research should address the communication barriers between autistic people and professionals that can lead to misunderstandings. Lay abstract In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21–29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.