The term ‘autism spectrum’ may be misleading and outdated, experts argue, as it fails to capture the complex reality of autistic lives and risks reinforcing harmful hierarchies between people.
Originally a groundbreaking concept, the idea was pioneered in the 1980s by British psychiatrist Dr Lorna Wing, a co-founder of the National Autistic Society. Her work transformed understanding in the UK, moving away from seeing autism as a rare, narrow condition to recognising a wide range of traits and experiences. Alongside Judith Gould, she established the “triad of impairments” in social interaction, communication, and imagination as key characteristics, and her epidemiological research suggested autism could affect around 1% of the population, challenging notions of its rarity.
Yet the common metaphor of a spectrum, often visualised as a straight line from ‘mild’ to ‘severe’, is now seen by many as inaccurate. Autism comprises a unique constellation of traits and needs for each individual, including reliance on routine, repetitive movements known as ‘stimming’, and intense focus. This latter trait is explained by the theory of ‘monotropism’, developed by autistic researchers, which frames autism as a difference in attention, where focus is channeled intensely into a narrow range of interests, influencing cognition and emotional regulation.
Because of this intricate interplay, experts contend there can be no single line on which every autistic person is placed. The metaphor also struggles to account for how a person’s needs fluctuate across a lifetime. Research indicates that life stages such as menopause or periods of prolonged stress leading to ‘burnout’ can significantly increase support needs, making any static ranking irrelevant.
Attempts to categorise this diversity persist. The American Psychiatric Association’s diagnostic manual divides autism into three ‘levels’ based on judged support needs. However, research argues these levels are vague and inconsistently applied, often failing to reflect real-world experience. More recently, an international group of experts forming The Lancet Commission proposed the label ‘profound autism’ for those with high support needs. Critics say this tells us nothing about a person’s specific challenges or the support they require.
This debate over categorisation has historical precedent. Dr Wing also introduced the term ‘Asperger’s syndrome’ to the UK in 1981, based on the work of Austrian physician Hans Asperger. This created a division between those with higher support needs and those with the syndrome. The term has since become deeply controversial. Historical research has revealed Hans Asperger’s association with the Nazi regime, including referring children to the Am Spiegelgrund clinic, a Nazi ‘euthanasia’ facility where disabled children were murdered. While his awareness of the full extent of atrocities was debated, contemporary scholarship suggests he was complicit, leading many autistic people to reject the term.
Societal implications and language
Underpinning these debates is a concern that dividing autistic people into categories, or ranking them on a spectrum, can slip into judgments about their value to society. Some autistic campaigners warn such hierarchies risk dehumanising those with higher support needs, a concern amplified by contemporary political discourse.
In the United States, for example, health secretary Robert F. Kennedy Junior has said he would “confront the nation’s (autism) epidemic” and has promoted strongly refuted claims linking paracetamol use in pregnancy to autism. He has also repeatedly promoted debunked claims linking vaccines to autism, a connection disproven by scientific consensus, with advocates criticising such statements for spreading misinformation and reinforcing blame.
Parallel to this, many autistic adults express clear preferences about the language used to describe them. Research in the UK shows a strong preference for identity-first language (“autistic person”) over person-first language (“person with autism”), viewing autism as an integral part of identity. Consequently, phrases like “on the spectrum” are often perceived as vague or minimising, and rooted in the idea that being autistic is negative.
Emerging understanding of co-occurring conditions further illustrates autism’s complexity. A growing body of research indicates a significant link between autism and hypermobility spectrum disorders or Ehlers-Danlos syndromes (EDS), which are associated with increased physical and mental health challenges.
Language, experts agree, shapes societal treatment. Moving away from the simplistic idea of a single, linear spectrum is seen as a step towards recognising autism in all its diversity, valuing autistic people as they are, and embracing the neurodiversity paradigm which frames such neurological differences as natural variations rather than deficits.