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- Aimee Grant Associate Professor in Public Health and Wellcome Trust Career Development Fellow, Swansea University
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Aimee Grant receives funding from the Wellcome Trust and UKRI.
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The phrases “autism spectrum” or “on the spectrum” have become part of everyday language. They are often used as different ways of referring to someone who is “neurodivergent”.
The term was coined in the 1980s by psychiatrist Dr Lorna Wing, whose work transformed how autism was understood in the UK. At the time, her “autism spectrum” concept was groundbreaking. Instead of seeing autism as a rare, narrowly defined condition, she recognised a wide range of traits and experiences.
But the idea of a single spectrum, which stretches from “mild” to “severe”, may be misleading. And some autism experts, including me, argue the term has outlived its usefulness.
When most people hear the word “spectrum”, they may picture a straight line, like colours arranged from red to violet. Applied to autism, this suggests autistic people can be ranked from “more autistic” to “less autistic”. But that’s not how autism works.
Autism is made up of many different traits and needs, which show up in unique combinations. Some autistic people rely heavily on routine, while others find comfort in repetitive movements known as “stimming”. And some have an intense focus on particular topics, a concept researchers call “monotropism”.
There are also known links with physical conditions such as hypermobility. Because autism is made up of all these different elements, there can be no single line on which every autistic person is placed.
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Read more: Why the autism jigsaw puzzle piece is such a problematic symbol
Attempts to draw boundaries still persist, however. The American Psychiatric Association’s diagnostic manual divides autism into three “levels” based on the amount of support a person is judged to need. They run from level 1 “requiring support”, to level 2 “requiring substantial support” and level 3 “requiring very substantial support”.
But there is research that argues these levels are vague and inconsistently applied. They don’t always reflect someone’s real-world experiences.
Life circumstances can also change a person’s needs. An autistic person who usually copes well may experience “burnout” and have an accompanying increase in support needs, if their needs have been unmet for a long time.
In a recent research article, my colleagues and I show that life stages such as menopause can increase support needs. A static “level” cannot capture this evolving nature.
More recently, the label “profound autism” has been suggested by the Lancet commission – an international group of experts – for autistic people with learning disabilities or high support needs. But other experts say the phrase is unhelpful because it tells us nothing about a person’s particular challenges or the type of support they require.
The legacy of Asperger’s
Dr Lorna Wing also introduced the term “Asperger’s syndrome” to the UK. Like the concept “profound autism”, using this term also divided autistic people into those with higher support needs and those with Asperger’s syndrome (lower support needs).
However, the label was drawn from the name of Austrian physician Hans Asperger, who in the 1940s identified a subgroup of children he called “autistic psychopaths”. During the Nazi period, Asperger was associated with a genocide of autistic people with higher support needs. For this reason, many autistic people don’t use the term any more, even if that is what they were originally diagnosed with.
Underlying all these debates is a deeper concern that dividing autistic people into categories, or arranging them on a spectrum, can slip into judgments about their value to society. In the most extreme form, such hierarchies risk dehumanising those with higher support needs. It’s something some autistic campaigners warn could fuel harmful political agendas.
In the worst case, those judged as less useful for society become vulnerable to future genocides. This may seem far fetched, but the political direction in the US, for example, is very worrying to many autistic people.
Recently, US health secretary Robert F. Kennedy Junior, said that he was going to “confront the nation’s (autism) epidemic”. So far, this has included strongly refuted claims that paracetamol use in pregnancy is linked to autism in children, urging pregnant women to avoid the painkiller.
Read more: Paracetamol use during pregnancy not linked to autism, our study of 2.5 million children shows
Often people use the term “autism spectrum” or “on the spectrum” as a way of avoiding saying that somebody is autistic. While this is often well meaning, it is rooted in the idea that to be autistic is a negative thing. Many autistic adults prefer the words “autism” and “autistic” directly. Autism is not a scale of severity but a way of being. It’s a difference rather than a defect.
Language will never capture every nuance, but words shape how society treats autistic people. Moving away from the idea of a single spectrum could be a step towards recognising autism in all its diversity, and valuing autistic people as they are.
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