Is ‘high-functioning autism’ misleading?

High-functioning autism is a term used for people with autism spectrum disorder without an intellectual disability, but Australian researchers say it should be abandoned because of the misleading and potentially harmful expectations it creates around the abilities of children on the autism spectrum.

Coined in the ’80s, it is now part of everyday language and has come to imply that people can function adequately, whether at school or at work, without much in the way of challenges.

For many individuals with autism spectrum disorder, this couldn’t be further from the truth, according to lead author Gail Alvares.

Alveres and her team from the Telethon Kids Institute and the University of Western Australia reviewed data for 2225 children and young people (aged 1-18) diagnosed with autism, about half of whom had intellectual disability, and half of whom did not.

They found those with an intellectual disability had functional skills which closely matched their IQ. However, those typically deemed to be high functioning due to having an average or higher IQ, had functional abilities well below what would be expected, given their IQ.

“We demonstrated that those who didn’t have intellectual disability – what people would have classically called ‘high-functioning autism’ – in fact have marked challenges with their everyday skills compared to what we would typically expect from their IQ,” says Alvares.

“How well you function is not about your IQ, but about how well you’re able to perform in your environmental context, for your age.”

According to Alvares, by continuing to use the term “high-functioning’ we may be inadvertently perpetuating a cycle that denies people access to services and support that they need based solely on their IQ.

Anthony Hannan, from the University of Melbourne, says the study also raises important issues regarding the clinical status of this major subgroup of autism spectrum disorder, and the use of IQ more generally.

He says we are entering a “golden era of neuroscience” and need to use the extraordinary power of modern brain science to move on to “precision medicine” approaches, based on the latest neurobiology.

“This neuroscience-driven modernisation of psychiatry and clinical psychology could improve the lives of those with autism and other brain disorders, as well as their families,” he says.