Aspects of quality of life in adults diagnosed with autism in childhood: a population-based study.
Adults diagnosed with autism in childhood often say life is good, yet they still lack work and play—so build plans that add real jobs and chosen hobbies.
01Research in Context
What this study did
Billstedt et al. (2011) followed adults who were diagnosed with autism as children. They asked how these adults felt about their own lives today.
The team looked at everyday things: housing, work, friends, and mood. Most adults still lived with parents or staff support.
What they found
Despite high caregiver help, most adults said, "I have a good life." They rated overall quality of life as positive.
Big gaps showed up in jobs and fun activities. Few had real work or hobbies they chose.
How this fits with other research
Lee et al. (2008) found the opposite: parents of autistic children reported very low quality of life. The difference is who answers—parents see stress, adults see hope.
Saldaña et al. (2009) saw poor objective outcomes in Spain—low jobs, low independence—yet Eva’s adults still felt upbeat. Objective numbers and subjective feelings can diverge.
Knüppel et al. (2018) replicated the positive self-ratings in Danish adults and added a tip: self-scores are slightly higher than parent-proxy scores, so always ask the adult directly.
Libero et al. (2016) extended the story to transition-age youth with autism or ID. Parents in that group rated quality of life below norms, again showing parent worry versus adult optimism.
Why it matters
You can celebrate self-reported happiness while still targeting real gaps. Add vocational training, leisure clubs, and peer meet-ups. Ask, "What job or hobby would make your week better?" then write that into the ISP. Happiness plus opportunity equals a fuller life.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Open the ISP, add one leisure goal chosen by the client (e.g., join comic-book club or learn bike repair) and one vocational exposure step (visit a workplace).
02At a glance
03Original abstract
The present study is a long-term prospective follow-up study of a population-based cohort of 120 individuals diagnosed with autism in childhood, followed into late adolescence/early adulthood. Specific aims of the study were to attempt to measure and study social aspects/quality of life in those 108 individuals with autism alive and available for study at the time of follow-up (13-22 years after original diagnosis). A newly constructed scale for rating 'autism-friendly environment'/quality of life was used alongside a structured parent/carer interview assessing current occupation, educational history, services provided, accommodation type, and recreational activities. The majority of the group with autism remained dependent on parents/caregivers for support in education, accommodation and occupational situations. In spite of this, the estimation of the study group's general quality of life was encouragingly positive. Nevertheless, there was an obvious need for improvements in the areas of occupation and recreational activities. Future studies need to look in more depth at the concept of an autism-friendly environment and develop more detailed quality of life assessment tools relevant for people in the autism spectrum.
Autism : the international journal of research and practice, 2011 · doi:10.1177/1362361309346066