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New Study Agrees Harmful Autism 'Functioning' Labels Are Harmful

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Research published in the journal Autism on Wednesday added more evidence to what actually autistic people have said all along: The label “high-functioning” harms people on the autism spectrum.

Researchers first used “high-functioning” as a research term in reference to autism in the 1980s to describe autistic people without intellectual disabilities. However, doctors, teachers, parents and the public co-opted the term to imply autistic people without an intellectual disability can seamlessly adapt to the neurotypical world without much support. Failing to acknowledge neurodiversity beyond just cognitive ability, however, hurts autistic people.

Mighty contributor Kristian Thomas explained why in the article, “The Truth About Autism Functioning Labels,” writing:

So-called ‘high functioning’ autistic individuals face a different set of challenges. They may thrive academically and intellectually, but still struggle socially and emotionally. Since they come across as cognitively proficient, they are expected to function in society the same way as a neurotypical, especially once they reach adulthood. This is where things become more difficult, because we are often aware of what people expect of us, but it is difficult for us to meet those expectations.

A study led by Gail Alvares, Ph.D., at Telethon Kids and the University of Western Australia, confirmed the “high-functioning” label for people on the spectrum can be harmful. Alvares and her team measured the differences between adaptive abilities, like social and emotional skills, and cognitive ability, as measured by IQ, among 2,225 young people under age 18 on the spectrum. The study found high cognitive “function” had no connection to high function in other areas of life — an autistic person with high cognitive abilities can struggle significantly socially or emotionally.

Alvares’ research supports the case against autism labels like “high-functioning” and “low-functioning.” These terms only measure cognitive ability, a single domain of capability and miss those who may struggle in other areas.

“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,” Alvares told Medical Xpress. “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.”

Actually autistic people have advocated against harmful functioning labels for years. Those labeled “high-functioning” in particular report masking or camouflaging their autism traits to blend in. Research shows, however, masking takes a huge toll on the physical, mental and emotional health of autistic people. And, as Mighty contributor Jessica Flynn pointed out, a label of “high-” or “low-functioning” never captures a full human being’s capabilities. Flynn wrote:

The low-functioning label dismisses what those individuals are good at. It takes away some of their humanity, and it can make people less willing to help them achieve more because they automatically think they wouldn’t have the ability. The high-functioning label dismisses the struggles those individuals have. It makes them feel like their disability isn’t as challenging as they feel it is sometimes.

Alvares also pointed out a “high-functioning” label impacts whether or not people on the spectrum get services or support. “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,” she said, adding:

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.

Alvares concluded her team’s study by calling for autism assessments that measure strengths and difficulties across many skill sets to make sure people on the spectrum get the support they need. Alvares also said her study proves “high-functioning” is an inaccurate term that “should be abandoned in research and clinical practice.”

The study’s outcome echoes what actually autistic self-advocates have been saying all along, as summed up by Mighty contributor Karen Harper in her article, “Why Being Labeled ‘High-Functioning’ Hurts Me as a Person With Autism.” She wrote:

I don’t wear my ‘high-functioning’ label as a badge of honor or take it as a compliment. Being ‘high-functioning’ means I’ve learned to cope with my challenges on my own when help should have been available. Being a ‘high-functioning’ autistic person has contributed to my ‘high-functioning’ depression because I can  easily pass as ‘normal’ in society. My challenges are, for the most part, hidden. And ironically, being able to ‘pass’ is just what society wants us to do.

Header image via Nadezhda1906/Getty Images

Originally published: June 21, 2019
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