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The Problem With Functioning Labels

The Problem With Functioning Labels

Image: Matt Cornock

It's no secret that I have a problem with the term high functioning autism, but here's why.

It’s not a thing

People just started saying it and it assumed a clinical significance without the research to support it. If our criteria for defining something this important is that loose, then I'm going to start my own category of autism and call it Shirley. Who's with me?

Nobody agrees on what it means

Does it mean autism with high IQ? How high is high? Does it mean language?  Does that include all forms of communication or just speech? There is no clinical definition or criteria for applying it, because...

It doesn’t mean anything

Using language doesn’t automatically enable you to function well in your environment, and kids with high intelligence can have overwhelming sensory issues that make it difficult to function anywhere. Which means...

It’s harmful to everyone 

Being branded low functioning keeps the expectations of you low and the focus on your deficits. Being branded high functioning means your needs are ignored and you're unlikely to get the support you need. Which shows that...

It’s outdated 

Categorising based on functioning reflects a decades-old view of autism as having clear-cut points on the spectrum, from a time when people were searching for a way to use the word autism without it sounding bad. So really...

It's not useful 

The only time that people use the term high functioning autism is to (a) deny someone funding or services, (b) debate whether it's the same thing as Aspergers or (c) use it as a qualifier to make it seem that the person is less autistic. It's not a useful descriptor, nor is it ever helpful in getting the person what they need. Because when you think about it, there's no ceiling on a word like high. It implies that we can just keep functioning better and better until... what? We're typical? There is no cut-off between high and typical, just as there isn't between high and low. And that's because...

Functioning isn’t uniform

Nobody functions equally across all areas of their life, you can be excellent at one thing and barely coping at another. We simply can't make such a sweeping generalisation of someone’s ability to function. And not only that...

Functioning isn’t static

Autistic kids can cope well in one environment and completely fall apart in another. They can do well when they’re healthy but crumple when they’re sick. They function best when sensory input is kept at a tolerable level and stress is low... which is almost never. Their level of stress and sensory overload varies from day to day, even hour to hour within the day, and so does their level of functioning.

Functioning changes over time

Making a pronouncement about a child’s level of functioning either assumes that they will never change, or applies only to a single moment in time in which case it’s meaningless. Many autistic kids who have significant language delays at age four or five have caught up to their peers by the time they’re in high school. A kid who scores low on an IQ test because of communicative difficulties may perform well once those issues are overcome.

 

The bottom line

High and low functioning labels are at best pointless and at worst costly red herrings distracting us from what’s important... acknowledging that every autistic person is an individual with their own set of strengths and challenges, and getting them the support they need to deal with both.

It's interesting that neurotypical children come with just as wide a variety of intellectual and language capabilities - yet we don’t need to classify them as either high or low functioning in order to cater to their needs.

This article was first published in August 2012.

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