The widely accepted concept of autism as a single, linear spectrum is facing a significant challenge from within the expert community. Researchers and advocates in the UK and beyond are now arguing that this model, which suggests people can be ranked from 'mild' to 'severe', is fundamentally misleading and may have outlived its usefulness.
The Flaw in the Linear Spectrum
The term "autism spectrum" was coined in the 1980s by the pioneering British psychiatrist Dr Lorna Wing. Her work revolutionised understanding by moving away from seeing autism as a rare, narrow condition. However, the common interpretation of a spectrum as a straight line—akin to colours from red to violet—implies autistic people can be placed on a scale from 'more' to 'less' autistic.
Experts contend this is not how autism manifests. Autism comprises a constellation of many different traits and needs, which appear in unique combinations for each individual. These can include a reliance on routine, repetitive movements known as stimming, or an intense focus on specific interests—a concept researchers term 'monotropism'. There are also recognised links with physical conditions like hypermobility.
Because of this complex interplay, it is impossible to place every autistic person accurately on a single line. The model fails to capture the true, multifaceted nature of being autistic.
The Problem with Labels and Levels
Despite this understanding, attempts to categorise and rank persist. The American Psychiatric Association's diagnostic manual, for instance, divides autism into three support levels: from Level 1 ("requiring support") to Level 3 ("requiring very substantial support").
Critics highlight that these levels are often applied inconsistently and can be vague. More importantly, they present a static picture that doesn't reflect the fluid reality of an autistic person's life. Life circumstances can dramatically alter support needs. An individual who typically copes well may experience autistic burnout if their needs go unmet for prolonged periods.
Recent research, including work by Aimee Grant, an Associate Professor in Public Health at Swansea University, shows that life stages like menopause can also increase support requirements. A fixed diagnostic 'level' cannot account for this evolving nature.
From Asperger's to 'Profound Autism': A Contentious History
The debate over categorisation has a troubling history. Dr Wing also introduced the term Asperger's syndrome to the UK, which created a division between those with higher and lower support needs. The label originates from Austrian physician Hans Asperger, who worked during the Nazi era and was associated with the genocide of disabled people, including autistic individuals with higher support needs. Many in the community have now rejected the term.
More recently, the Lancet Commission proposed the label "profound autism" for those with learning disabilities or high support needs. However, many experts argue this is similarly unhelpful, as it reveals little about a person's specific challenges or the precise support they require.
Underpinning these debates is a profound ethical concern. Dividing autistic people into hierarchies risks dehumanising those with greater needs and making judgments about their value to society. Some campaigners warn this could fuel harmful political agendas, a fear exacerbated by rhetoric from figures like former US health secretary Robert F. Kennedy Junior, who has made controversial and refuted claims about the causes of autism.
Moving Towards Acceptance
Language plays a crucial role in shaping societal attitudes. Often, phrases like "on the spectrum" are used as a softer alternative to saying someone is autistic, a practice rooted in the stigmatising idea that autism is inherently negative. Many autistic adults prefer direct, identity-first language: "autistic". They advocate for understanding autism not as a scale of severity or a defect, but as a fundamental difference in human neurology—a way of being.
While no terminology will ever capture every nuance, moving beyond the simplistic single-spectrum model could be a vital step. It paves the way for recognising autism in all its diversity and, ultimately, valuing autistic people for who they are.
