Why We All Need to Stop Referring to People With Autism as ‘High Functioning’
Our language has changed since his diagnosis at age three, and I have no doubt it will continue to do so into the future. Now, a new study shows why it’s important we all stop using the term ‘high functioning autism’.
Researchers from the Telethon Kids Institute at the University of Western Australia reviewed assessments on more than 2,200 children with an autism diagnosis, who had a mix of intellectual abilities.
While all of the participants had some form of impediment to so-called adaptive functions, such as difficulty communicating or having compromised self-care or even motor skills, the group could be divided into those with intellectual disabilities and those without.
The research team’s analysis revealed intellectual ability was generally a weak predictor for adaptive functioning. The age at which they were diagnosed was a much better match for levels of social and living skills than IQ.
This means many who had fairly well-developed cognitive skills could still experience significant challenges posed by their autism, making the implications of any label on their ability to cope with life’s complexities misleading at best, and damaging at worst.
“The term ‘high functioning autism’ is not a diagnostic term and is based on an IQ assessment, rather than a functional assessment,” says medical scientist and lead researcher Gail Alvares.
“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.”
Such a description could mean those with a diagnosis, not to mention their parents and teachers, might not get the assistance they need, all thanks to assuming intellectual skills represent an ability to cope in most other areas.
It’s an easy trap to fall into. I know I’m guilty, having used the term as a shorthand to communicate the limited severity of my child’s diagnosis. But I’m also mindful of how it can gloss over the challenges he faces.
And there are certainly challenges.
As richly imaginative and switched on as my lad is, social situations can be awkward for him. He’s easily overwhelmed, making trips to the cinema a gamble. He struggles with introspection and time management, and can be a little obsessive in his interests (I’m now a Fortnite expert, having never played a single match).
There are plenty of skills he’ll pick up in life to help him deal with a loud, busy world full of complicated social cues and chaotic schedules. We’ll teach him what we can, of course, but the idiosyncratic affectations to his speech, his love of reading, and his memory for scientific and historical facts mean it can be easy for us to overlook the difficulties he’ll have with other skills.
Just as Alvares puts it, “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.”
Like most neurological conditions, the autism spectrum is a complex mix of characteristics that makes life different to what the majority of us might expect.
While labels can sometimes be a convenient shorthand that helps skip long explanations, they can also force us to skip asking what makes this individual unique.
“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,” says Alvares.
Words come and go in health and medicine, and it’s hard not to feel like you’re constantly tripping up. Not so long ago my son might have been instead diagnosed as having Asperger’s syndrome, a term that’s fallen out of use for a number of reasons.
But if high functioning autism ever meant anything at all, it no longer does. It’s time I gave it up. And I ask that you do, too.
It certainly won’t tell you much about my son, even if he can hold his own in a discussion on Minecraft, or planetary formation, or thermodynamics.
Yeah, I’m still proud.
This research was published in Autism.