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EXPERT REACTION: Labelling autistic kids as 'high functioning' may stop them from getting the help they need

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‘High functioning autism’ is a term used for people with autism spectrum disorder without an intellectual disability (as measured through IQ tests), and it has become synonymous with expectations of greater functional skills and better long-term outcomes. However, higher scores on an IQ test do not necessarily indicate improved functioning, warn Aussie researchers who measured IQ and adaptive behaviour in 2,225 autistic kids. And being labelled 'high functioning' may make it more difficult for kids to access the care they need, the researchers say, suggesting the term should be dropped altogether.

Journal/conference: Autism

DOI: 10.1177/1362361319852831

Organisation/s: Telethon Kids Institute, The University of Western Australia, The University of Sydney, Florey Institute of Neuroscience and Mental Health

Media Release

From: Telethon Kids Institute

Researchers call for the term ‘high functioning autism’ to be consigned to history

Autism researchers from the Telethon Kids Institute have called for the term ‘high functioning autism’ to be abandoned because of the misleading and potentially harmful expectations it creates around the abilities of children on the autism spectrum.

In research published in the journal Autism, a team led by Gail Alvares, from Telethon Kids and The University of Western Australia, notes that the term was first coined by researchers in the 1980s as a descriptor for people who had autism but did not have an intellectual disability.

“The term ‘high functioning autism’ is not a diagnostic term and is based on an IQ assessment, rather than a functional assessment,” Dr Alvares said.

“It was originally used to describe people without an intellectual disability, yet somehow has crept into everyday use and has come to imply that people can manage perfectly fine, and don’t experience any everyday challenges.”

Dr Alvares said that for many individuals with autism spectrum disorder, this couldn’t be further from the truth.

“A lot of children and young people with autism may have an appropriate IQ for their age but still struggle with everyday skills like getting themselves to school, navigating public transport, or communicating at the same level as their peers,” she said.

“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.”

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.

“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,” Dr Alvares said.

“The implication of this study is that children given this ‘high functioning autism’ label are not just presumed to have better functioning than they really do, but they actually have far greater challenges with everyday skills than the label would suggest.”

Dr Alvares said deeming someone as ‘high-functioning’ based on IQ alone not only created false expectations about a person’s abilities, but exposed them to disadvantage.

“The term underplays the challenges people often experience on a day-to-day basis, and leads to misleading expectations about their abilities to function in the environment, whether that’s at school, work or elsewhere,” she said.

“It’s also often used as a means of understanding whether an individual may need to access funding and services.

“It might be used, for example, to argue that a child should be able to go to a mainstream school without support when in fact, while they may perform well on cognitive assessments, they still struggle with skills like understanding instructions, note-taking, self-care, changes to routine, or interacting with their peers.

“By continuing to use this term, we may be inadvertently perpetuating a cycle that denies people access to services and support that they need based solely on their IQ.”

Dr Alvares said there had been a growing global movement to change the language around autism, with some autism advocates and researchers arguing that the phrase ‘high functioning autism’ should be dropped by researchers and clinicians.

“This study provides data that demonstrates why we shouldn’t be using this term,” she said.

The results also highlighted the need for comprehensive diagnostic evaluations that incorporated functional assessments, to guide service provision and funding allocation.

“If we’re not doing appropriate assessments at the time of diagnosis, to understand what a person’s strengths and challenges are so we can provide appropriate support, individuals are at risk of falling further and further behind their peers,” Dr Alvares said.

About the study

The study, The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional

abilities at diagnosis, was published in the journalAutism

The research used information from the Western Australian Register for Autism Spectrum Disorders, which since 1997 has used a standardised procedure to diagnose Autism Spectrum Disorder and determine

eligibility for government-supported therapies

The register holds data on almost 6,000 people in WA diagnosed with autism. The researchers reviewed a sub-sample of 2,225 children and young people aged 1-18, comparing those who did and did not have a

diagnosed intellectual disability with assessments of their functional ability (also included on the register) The functional ability of those with diagnosed intellectual disability closely matched their reported IQs.

However, those without an intellectual disability – individuals deemed to have ‘high-functioning autism – were found to have functional ability scores significantly below those expected for their reported IQs.

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Expert Reaction

These comments have been collated by the Science Media Centre to provide a variety of expert perspectives on this issue. Feel free to use these quotes in your stories. Views expressed are the personal opinions of the experts named. They do not represent the views of the SMC or any other organisation unless specifically stated.

Professor Adam Guastella is the Michael Crouch Chair in Child and Youth Mental Health at Children’s Hospital Westmead Clinical School and the University of Sydney

The terms 'high-functioning' and 'low-functioning' autism dominate lay language and are sometimes used to reflect differences in IQ levels. 

This terminology assumes those with high-functioning autism are those that also have higher IQ. Implicit in this term is the assumption they require less support. This study suggests this assumption is wrong.  

This wonderful study is the largest of its kind and further confirms growing evidence that IQ is actually a very poor predictor of functioning levels. What these results show is that those with higher IQ may actually need significant support across functioning levels. This is critical when thinking about how NDIS packages are used to support autistic people. 

This poor relationship with IQ was shown across all functioning domains and particularly for the core domain of social skills and also for females with ASD. 

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. We need to make sure any assessment that informs support planning relies on a holistic assessment. 

Even though this is the largest study of its kind to date, larger studies are needed to replicate these findings, with particular replication needed for females.

Last updated: 20 Jun 2019 11:52am
Declared conflicts of interest:
None declared.
Professor Anthony J. Hannan is a NHMRC Principal Research Fellow from The Florey Institute of Neuroscience and Mental Health, University of Melbourne and Melbourne Brain Centre

This new study raises important questions regarding the term ‘high functioning autism’ (which is related to what used to be called Asperger’s syndrome).

Whilst this may be seen by some to be a question of semantics, the study raises important issues regarding the clinical status of this major subgroup of autism spectrum disorder, and the use of intelligence quotient (IQ) more generally.

Evidence is provided that those individuals with autism and ‘normal IQ’ may still have major problems with ‘adaptive behaviour’ that affect their function in everyday life. If the term ‘high functioning autism’ is to be abandoned, as these authors suggest, perhaps it could be replaced with another term such as ‘autism without intellectual disability’.

This article raises broader issues regarding the preciseness (or otherwise) of the main diagnostic manual for mental disorders, used by psychiatrists, psychologists and other clinicians internationally.

We are just beginning 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.

What I envisage is that diagnosis and treatment need to be better guided by the cutting-edge science of genomics (the 3 billion paired letters of DNA unique to each of us), ‘enviromics’ (a person’s total environmental experience from conception to old age) and ‘biomarkers’ (molecules from the blood, etc., as well as data collected by wearable devices, etc., which aid the identification of specific disorders).

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.

Last updated: 20 Jun 2019 11:50am
Declared conflicts of interest:
None declared.

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