Research published by Telethon Kids Institute seeks to put a halt to damaging labels when it comes to people with autism.
The term ‘high functioning’ is frequently used in autism research and diagnosis, yet research by Dr Gail Alvares has found this is antiquated terminology that can lead to negative outcomes for autistic people.
The Telethon Kids Institute researcher has recently published a paper debunking the term and the expectations it carries.
“It is not an official diagnostic term but we often use it in clinical research papers and also in everyday language when we talk about autism,” she told Medical Forum.
Dr Alvares and her colleagues analysed The Autism Register, a unique resource to WA, and found a relationship between an intelligence quotient (IQ) above 70 and the term high functioning, which suggested a simplified view of an individual’s functionality purely based on IQ.
Initially the term high functioning was used by researchers in the 1980s to categorise an individual if their IQ was above 70, and the term has come to misrepresent these individuals, she said.
“It implies, if you are doing a cognitive assessment on an individual, an assumption that their functional level is adequate when actually their IQ score is not a good predictor of their functioning scores.”
“We see functioning scores that are quite low, relative to what their IQ would suggest. Research is showing us how inaccurate this label is and how we really need to be using better language when we talk about autism and start to think about not using this term at all.”
From a diagnostic perspective the most accurate terminology is already available in the Diagnostic and Statistical Manual of Mental Disorders (DSM–5).
“You can diagnose someone with autism spectrum disorder with or without and intellectual impairment, so we already have the appropriate language to do that,” she said.
“Using the DSM-5 for terminology is not only more accurate but also more representative of individual needs and differences. Maybe we should be looking at just saying someone has the diagnosis of autism, not assuming what their functional level is.”
The labels high or low functioning also infer a stability in functional levels without considering changes over time.
“People who may have been called lower functioning as children may now be labelled high functioning as adults. That labelling does not really capture the fact that people’s functional abilities change over time as they get more or less support, or as they age and developmental changes occur.”
For Dr Alvares, the best outcome of this research is for it to demystify the diagnostic language surrounding autism and guide academics and clinicians to use the most appropriate terminology to avoid stigmatisation and discrimination of the autistic community.
Dr Alvares said the labelling had negative economic consequences as well.
“The label high functioning has been used to deny people services and access to funding. The expectation is, if you have a cognitive ability, then you do not have functional disabilities and therefore you might not need support from insurance companies or government funding,” she said.
“What this research says is, that is not correct, and by continuing to use this term we are potentially disadvantaging people who get this label applied to them.”
“GPs are absolutely the first port of call for any person concerned about their child’s development. So, it is absolutely essential that they have the right information when they are referring someone for a diagnosis.”