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Is There a Best Time in Life to Learn You Have Autism?
  • Posted June 20, 2023

Is There a Best Time in Life to Learn You Have Autism?

At any age an autism diagnosis is a major event. But is it best to find out while still young or might a late-in-life diagnosis give adults a better shot at a good quality of life?

According to a new study, there's no one-size-fits-all answer.

Researchers surveyed 300 adults living with autism in the United Kingdom, all of whom were asked to reveal at what age they were first diagnosed.

The investigators then compared that information to an assessment of autistic trait severity and quality of life based on several key indicators.

Those indicators included practical matters — such as access to health care, finances and social support — as well as self-reported psychological assessments, including overall satisfaction and the degree to which the individual felt functional, happy, and had a sense of purpose and well-being.

The result: “Overall, there was no link between the age at which one learns they are autistic and their quality of life in adulthood,” said study author Lucy Livingston, a cognitive psychologist and lecturer with the Institute of Psychiatry, Psychology & Neuroscience at King's College London, in the United Kingdom.

“More and more people are finding out they are autistic for the first time as an adult, which can be a life-changing realization," she said. "Because we know that many autistic people experience a very poor quality of life and well-being, this begs the question whether finding out you are autistic earlier in life improves outcomes.”

Livingston said it appears that, “for some people, finding out they are autistic sooner rather than later was linked to a better quality of life; for others, finding out later was better.”

In other words, the impact of an autism diagnosis on quality of life is different for everyone.

Study participants were between the ages of 18 and 68. Nearly 6 in 10 were women, and 90% were white. More than two-thirds said they lived independently.

About 15% said they had been diagnosed while still a child, and nearly one-third said their diagnosis came during their teens. Just over half found out they were on the autism spectrum as adults.

The investigators then ran a battery of quality of life, well-being and mental health assessments. Autistic trait severity was also evaluated, alongside an accounting of a variety of demographic information, including age, gender, ethnicity, and relationship, education, employment and income status.

But despite the notion that an earlier diagnosis likely means better outcomes as patients age, Livingston said that her team “actually found that the relationship between the age at which one becomes aware of being autistic and their quality of life was not statistically linked,” all things considered.

Instead, the team identified other factors — aside from age at diagnosis — that appeared to be more impactful on adult quality of life.

For example, men with autism were found to have a lower overall quality of life than women with autism. And patients who struggled with other mental health issues — including anxiety — also had a lower quality of life.

The study authors emphasized that their findings do “not dismiss the benefits of early recognition and diagnosis of autism.”

Still, Livingston offered several possible explanations for why an early diagnosis may not give all patients a long-term advantage on quality of life.

For one thing, simply getting an autism diagnosis doesn't always translate into meaningful additional support.

“Equally, a late diagnosis in adulthood can be a positive experience,” Livingston said, “helping people to make sense of themselves, which may improve their self-reported quality of life.”

Arianna Esposito is vice president of services and supports with Autism Speaks' Lifespan Programs. She was not surprised by the findings.

“However, much like findings that early interventions help children with autism reach their full potential, learning of an autism diagnosis sooner rather than later can increase an individual's awareness of their unique skill-set, and also encourage them to access certain services and supports that can help them thrive throughout their life,” Esposito said.

Adults who have never been diagnosed while young do stand to gain a lot from a later-in-life diagnosis, she added.

For some, an adult autism diagnosis can serve as a relief, in that it can help identify the root cause for some long-standing behavioral issues, Esposito said.

“It can also help them gain access to treatment and services geared toward improving symptoms and overcoming challenges,” she added, including autism-specific support groups and social skills training.

Her advice: “If you suspect that your feelings and behaviors involve autism, you can find out more in our guide: ‘Is it autism and if so, what next? A guide for adults.' It provides an overview of autism and helps clarify whether adults who suspect they might be on the spectrum should seek out an evaluation by a professional, and support available to them after receiving an official diagnosis.”

The study findings were published online June 14 in Autism.

More information

There's more about autism diagnosis and screening at the U.S. Centers for Disease Control and Prevention.

SOURCES: Lucy Livingston, PhD, cognitive psychologist and lecturer, Institute of Psychiatry, Psychology & Neuroscience, King's College London, United Kingdom; Arianna Esposito, MBA, vice president of services and supports, Lifespan Programs, Autism Speaks, New York City; Autism, June 14, 2023, online

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