Some autistic people report poor quality of life, but many do not

Autistic people vary widely in their quality of life, a new study shows. Some report shortcomings in their physical health and school achievement, among other areas, but many do not.

To help autistic people improve their well-being and satisfaction with life, researchers need a better understanding of what matters to individuals, says lead researcher Eva Loth, senior lecturer in forensic and neurodevelopmental sciences at King’s College London in the United Kingdom.

“It’s really important to consider each person and their circumstances individually, understand what aspect of quality of life is affected, why, and then decide with them what may be the most useful support,” Loth says.

Autistic people often report having a lower quality of life than non-autistic people do, a trend driven in part by social isolation and a diminished belief in their own capabilities, according to a study published earlier this year. They are also more likely to have anxiety or depression, which can impact a person’s ability to function in society and achieve life goals.

The new work suggests that anxiety and depression, not autism traits, explain why many autistic people score lower than non-autistic people across various measures of quality of life. It also shows that this gap closes for some autistic adults and children within specific areas, including physical health, leisure activities and school achievement.

Despite overall differences between the two groups, “individual quality-of-life outcomes vary, with some individuals clearly doing well,” says Judith Miller, senior scientist and training director at the Center for Autism Research at the Children’s Hospital of Philadelphia in Pennsylvania, who was not involved in the work. “We know we have a lot to learn about autistic individuals who are struggling. This paper shows we also have a lot to learn from autistic individuals who are doing well.”

Compounding factors:

Loth and her team analyzed survey data from 344 people with autism and 229 without autism who are part of a larger long-term European study. Adults completed a 26-item questionnaire about their physical health, psychological health, social relationships and opportunities for leisure activities. For children and teenagers in the study, parents completed a 45-item questionnaire that assesses physical and psychological comfort, risk avoidance, academic achievement and the availability of an adult to talk to about problems.

In every area, autistic people reported worse outcomes than non-autistic people, the study found. Two key areas showed the most dramatic group differences: Autistic adults reported higher levels of physical pain than non-autistic adults, and autistic children and teenagers lagged most behind their non-autistic peers in school achievement.

These differences did not reflect every autistic participant’s experience, though. On an individual level, almost half of the autistic adults reported levels of psychological health and satisfaction with friendships on par with those of non-autistic adults, and about 55 percent of autistic adults reported having similar opportunities for leisure activities as non-autistic adults.

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