Last updated June 24, 2019 at 9:47 am
Researchers are calling for the term ‘high functioning autism’ to be abandoned due to the potentially harmful expectations it creates.
‘High functioning autism’ is a term used for people with autism spectrum disorder without an intellectual disability, but Australian researchers say the term should be abandoned because of the misleading and potentially harmful expectations it creates around the abilities of children on the autism spectrum.
It has now become 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.
High-functioning couldn’t be further from the truth
Alveres and her team from the Telethon Kids Institute and The University of Western Australia reviewed data for 2,225 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.”
Perpetuating a cycle that denies people access to support
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.
While some may see this as a question of semantics, Adam Guastella from the University of Sydney, who was not involved in the study, agrees that there are broad implications especially when it comes to how National Disability Insurance Scheme (NDIS) packages are used to support autistic people.
“The results highlight the need for holistic assessments that rely on a more personalised assessment. IQ alone cannot be used to determine functioning. It cannot be used alone to inform NDIS support,” he says.
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 said 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.
Read the full AusSMC Expert Reaction here.