Study suggests early self-awareness of autism leads to better quality of life

by University of Portsmouth

Credit: Unsplash/CC0 Public Domain

People who learn they are autistic when they are younger may have a heightened quality of life and sense of well-being in adulthood.

That’s the finding of a new study, which also found that those who learned of their autism as adults reported more positive emotions (especially relief) about autism when first learning they were autistic.

Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive later in life.

For the first time, researchers directly investigated whether learning if one is autistic at a younger age is associated with better adult outcomes. Many autistic people—particularly females, ethnic/racial minorities and people with limited resources—are diagnosed years after the characteristics are first noticed. In many cases, autistic people do not receive their diagnosis until adulthood.

The study was carried out by a team of autistic and non-autistic students and academic researchers. Seventy-eight autistic university students were surveyed, sharing how they found out they were autistic and how they felt about their diagnosis. Respondents also revealed how they felt about their lives and being autistic now.

One of the co-authors, Dr. Steven Kapp, Lecturer in Psychology at the University of Portsmouth, was diagnosed with and informed of his autism aged 13. He said: “Students who learned they were autistic when they were younger felt happier about their lives than people who were diagnosed at an older age. Our study shows that it is probably best to tell people they are autistic as soon as possible in a balanced, personal, and developmentally appropriate way. Learning one is autistic can be empowering because it helps people understand themselves and also helps them connect with other people like them.”

However, being given a diagnosis as an adult can often also be empowering.

Dr. Kapp said: “Learning about autism at an older age is associated with more positive emotions about a diagnosis—especially relief. This finding makes sense, although emotional reactions are often very complex and unique to each person—there has been a lot of emerging research showing that relief is a common response to an autism diagnosis in adulthood.”

The study suggests that parents should not wait for children to become adults to tell them they are autistic. No participants recommended doing so, although most highlighted factors to consider when informing a child of their autism, including developmental level, support needs, curiosity, and personality. Findings also suggest that parents should tell their children they are autistic in ways that help them understand and feel good about who they are. One participant said: “I would tell my child that autism is a different way of thinking, that it can be challenging and beautiful and powerful and exhausting and impactful, that autistic people deserve to be themselves, to be proud of their identity, and have supports that help them meet their needs.”

Bella Kofner, co-lead author (24), who was diagnosed with autism at the age of three and informed of her autism at the age of 10, said: “This is the first study, to our knowledge, to demonstrate that learning at a young age that one is autistic may have positive impacts on emotional health among autistic university students. Hopefully, this finding may begin to address concerns parents have about when to talk to their child about autism. ‘When’ the conversation begins is particularly important. Our findings suggest that learning at a younger age that one is autistic can help autistic people develop self-understanding and access support, providing the foundations for well-being in adulthood.”

The findings, published in the peer-reviewed journal Autism, suggest that many aspects of identity, besides age, may contribute to how people respond to learning they are autistic. For example, more exploratory findings suggested that women and non-binary people responded more positively to first learning they were autistic than men did. The authors hope that future research will examine autistic identity development in autistic people who have often been overlooked, such as non-speaking autistic people and autistic people who are multiply marginalized.