Fourteen young adults who were diagnosed with autism in childhood have been interviewed in depth by Elisabeth Øverland.
And these 14 participants have opened up about both positive and challenging aspects of their lives.
– They describe how important close relationships with both people and animals were, and how much it meant to be able to immerse themselves in meaningful activities and interests. At the same time, they pointed to environmental barriers that challenged good quality of life, including sensory overload, bullying and difficulties in communication with healthcare professionals and teachers, Øverland says.
In her thesis, she has examined what promotes good quality of life for autistic people in early adulthood by bringing together their experiences with perspectives from experienced clinicians.
Based on these experiences, 20 clinicians from specialist health services shared their reflections in focus group interviews, where they emphasised the need for long-term and individually tailored follow-up.
– They highlighted the invaluable role of caregivers as support persons throughout the lifespan of autistic individuals, and underscored that follow-up must be continuously adapted in line with changing life stages, the PhD candidate explains.
A central theme in the dissertaton is the participants’ reflections on their developmental process, which they describe as a movement from struggling to «fit in» during adolescence towards gradually accepting their own difference in emerging adulthood.
Øverland’s findings challenge traditional ideas about independence.
– Support from others is described as a stabilising factor that makes independence possible, not as a sign of weakness. Mutual interdependence is thus portrayed as an important contributor to increased quality of life across the lifespan, she says.
Elisabeth Øverland has carried out her doctoral work in the PhD programme Health and Welfare. Her thesis is titled «Exploring life with Autism: Quality of life and daily functioning from childhood to emerging adulthood».
Main findings of the doctoral thesis:
- A majority of the autistic participants expressed that their quality of life improved over time, from adolescence into young adulthood.
- Close relationships with both people and animals are central to well-being and quality of life.
- The opportunity to immerse themselves in their own interests is an important resource and can guide choices of education and career.
- The transition from adolescence to adulthood often involves a movement from trying to “fit in” and be like averyone else, toward greater self-insight, self-acceptance, and pride in being oneself.
- Autistic individuals face significant barriers such as sensory overload, bullying, and poor communication in encounters with schools and healthcare services.
- Clinicians wish to provide good support but find it challenging to establish effective communication, and they call for more structured, long-term, and individually tailored services.
- Caregivers and other close supporters play an invaluable role throughout the life course.
- Support and interdependence emerge as a prerequisite for genuine autonomy.