The phrases “autism spectrum” or “on the spectrum” became part of everyday language. They are often used as different ways of referring to someone “neurodivergent.”
The term was coined in the 1980s by psychiatrist Dr Lorna Wing, whose work transformed the understanding of autism in the UK. At the time, his concept of the “autism spectrum” was revolutionary. Rather than viewing autism as a rare condition with a narrow definition, he recognized a wide range of traits and experiences.
But the idea of a single spectrum, ranging from “mild” to “severe,” can be misleading. And some autism experts, including me, argue that the term has lost its usefulness.
When most people hear the word “spectrum,” they may imagine a straight line, like colors arranged from red to violet. Applied to autism, this suggests that autistic people can be classified from “more” to “less autistic.” But autism doesn’t work like that.
Autism is made up of many different traits and needs, which manifest in unique combinations. Some autistic people rely heavily on routine, while others are comfortable with repetitive movements known as “pacing.” And some focus intensely on specific topics, a concept researchers call “monotropism.”
There are also known links to physical conditions such as hypermobility. Since autism is made up of all of these elements, there cannot be a single line for each autistic person.
However, attempts to establish limits persist. The American Psychiatric Association’s diagnostic manual divides autism into three “levels” based on the amount of support a person is considered to need. They range from level 1 “requiring support”, to level 2 “requiring substantial support” and level 3 “requiring very substantial support”.
But there is research that argues that these levels are vague and applied inconsistently. They do not always reflect each person’s real experiences.
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Life circumstances can also change a person’s needs. An autistic person who usually copes well may experience exhaustion and, consequently, an increase in their support needs if they were not met for a long time.
In a recent research paper, my colleagues and I showed that life stages such as menopause can increase support needs. A static level cannot reflect this evolutionary nature.
More recently, The Lancet commission (an international think tank) suggested the label “profound autism” for autistic people with learning disabilities or high support needs. However, other experts say the phrase is not helpful because it tells us nothing about a person’s particular challenges or the type of support they need.
The legacy of Asperger syndrome
Dr. Lorna Wing also introduced the term “Asperger syndrome” to the United Kingdom. Like the concept of “profound autism,” its use also divided autistic people into those with higher support needs and those with Asperger syndrome (lower support needs).
However, the label originated from the name of Austrian doctor Hans Asperger, who in the 1940s identified a subgroup of children he called “autistic psychopaths.” During the Nazi period, Asperger’s syndrome was associated with a genocide of autistic people with increased support needs. For this reason, many autistic people no longer use the term, even if that was the original diagnosis.
Underlying all of these debates is the deeper concern that dividing autistic people into categories, or classifying them on a spectrum, can lead to judgments about their value to society. At their most extreme, these hierarchies risk dehumanizing those with the greatest support needs. Some autistic activists warn this could push harmful political agendas.
At worst, those judged to be least useful to society become vulnerable to future genocides. This may seem far-fetched, but the political direction in the United States, for example, is very worrying for many autistic people.
Recently, the US Secretary of Health, Robert F. Kennedy Jr., declared that he was going to “confront the country’s (autism) epidemic.” Until now, this has included strongly refuted claims that paracetamol use during pregnancy is linked to childhood autism, urging pregnant women to avoid the painkiller.
The term “autism spectrum” or “on the spectrum” is often used to avoid saying that someone is autistic. While this is often well-intentioned, it is based on the idea that being autistic is a negative thing. Many autistic adults prefer the words “autism” and “autistic” directly. Autism is not a severity scale, but a way of being. It is a difference, not a defect.
Language will never capture all the nuances, but words shape how society treats autistic people. Moving away from the idea of a single spectrum could be a step towards recognizing autism in all its diversity and valuing autistic people for who they are.
*Aimee Grant is Associate Professor of Public Health and Wellcome Trust Career Development Fellow, Swansea University
This text was originally published in The Conversation
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