The Art of Autism interviews Gail Alvares, PhD, about her team’s research which was recently published in the journal Autism. The researchers 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 reported 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.

Can you tell me about your research study?

Our research study examined the term ‘high functioning autism’ and whether this term is an accurate measure of an individual’s functioning levels.

How was the term high-functioning autism coined? And what did you discover through your research?

The term was originally coined in the late 1980s by researchers to distinguish individuals with and without an intellectual disability (or IQs below or above 70). So, the term is actually based on an intelligence estimate, not based on an assessment of someone’s functional levels.

In this research, we used a large database containing data from thousands of individuals who had been diagnosed with autism in the state of Western Australia. Our main finding was that those with an intellectual disability had functional skills which closely matched their reported IQ. However, those that would have been deemed ‘high functioning’, due to having an average or higher IQ, had functional abilities well below what would be expected given their IQ. This means that the term ‘high functioning autism’ is actually inaccurate.

Why is it harmful to use the term low-functioning or high-functioning autism?

Many autistic people have been advocating for some time now that the terms high and low functioning are inaccurate and potentially harmful. Using this sort of language reinforces binary language – i.e. ‘if you’re not low functioning, then you must be high functioning’. Further, using the term high functioning comes with assumptions of better skills and functional levels (potentially resulting in overestimation of an individuals’ abilities). The same assumptions also hold true for low functioning; assuming someone doesn’t have abilities or strengths because they have an intellectual disability.

Can you tell me about your organization?

The Telethon Kids Institute is a leading children’s medical research institute located in Perth, Australia.

What type of other research studies are you working on related to autism?

Our research team conducts a wide range of research related to autism and neurodevelopment, spanning biological and genetic studies, to clinical trials investigating different types of therapies, and policy research to change clinical practice and government policy.

Do you have any autistic researchers?

Yes, we work very closely with a number of autistic researchers. We also work in partnership with the Autism Cooperative Research Centre (Autism CRC), the world’s first national cooperative research centre for autism (https://www.autismcrc.com.au/). Co-production and partnership is an underlying theme across our vision and values as a research group.

Anything else that you think is important about your study on the term high-functioning autism?

One of the main messages we hope people take away from this research is how important it is that we use accurate language that is informed by the community. We have known for some time that high-functioning autism is not a preferred term, in addition to being inaccurately based on IQ, however we have been slow to change our terminology (particularly as researchers). I would like to see us as a research/clinical community stop using this terminology as well as continue work alongside the autistic community about language and preferred terminology.

Readers can read more about the research study here.

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About Gail Alvares, PhD

Gail’s research has primarily involved coordination of Australia’s first national biobank for autism (the Australian Autism Biobank), currently the largest detailed biological and clinical repository of information about autism in Australia. She has also developed and tested an attention training game for children with autism.

In 2016, Gail was named a “Top 5 Under 40” scientist by ABC’s Radio National.