The autism spectrum diagnosis debate has fractured the research community and angered many autistic people, as a prominent academic argues the spectrum has grown so broad that it no longer serves those with the greatest needs, while others insist any narrowing would strip rights and support from vulnerable people.
In England, the number of people with an autism diagnosis on their GP record has risen from just over 700,000 three years ago to around 1.1 million today. The National Autistic Society (NAS) says evidence suggests there remains significant underdiagnosis, particularly among women and older people.
The case against the current spectrum
Professor Dame Uta Frith, 85, one of the key figures in autism research since the 1960s, has argued that the spectrum has reached a point of collapse because those included within it have such different needs. She believes a wave of late diagnoses, which she says are driven mainly by women, includes many people who have in fact been misdiagnosed and who may be living with anxiety, depression or OCD instead.
Dame Uta is cautious about scale: ‘In my worst moments, I think it’s a great number, but in my best moments, I think it is a small number.’ She has also suggested a tiny group have no mental health conditions at all and have been influenced by poor information on social media. Her priority, she says, is autistic people with intellectual disabilities, who she believes are being ‘completely overshadowed’ both in research and in public awareness.
Around a third of autistic people have intellectual disabilities, yet a 2019 study found they make up only about 6% of research participants. Dame Uta wants the diagnostic process to become more precise, targeting individual needs rather than a single label, and stresses she does not want anyone to suffer if a past diagnosis turns out to be wrong.
She first aired her views in an interview in March. The reaction, she says, included hate mail telling her she would have blood on her hands. She says: ‘Some people would say it would be better for me to stop. But I want to get at the truth.’
Genetics, timing and the autism spectrum diagnosis debate
Central to the autism spectrum diagnosis debate is a study from the University of Cambridge which found that people diagnosed with autism in early childhood often have a different genetic profile from those diagnosed later. One genetic trajectory is linked to early diagnosis and communication difficulties in infancy. The other is linked to later diagnosis, increased social and behavioural difficulties in adolescence, and higher rates of conditions including ADHD, depression and PTSD.
The average genetic profile of later-diagnosed autism is closer to that of ADHD and mental health conditions such as depression and PTSD than it is to early-childhood autism. Dame Uta cites this research in support of her position. The lead researcher, Dr Varun Warrier, reads it differently, saying the findings show ‘autism broadening out genetically’ rather than evidence of misdiagnosis.
Professor Sir Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge, trained under Dame Uta but does not take her side. He agrees the term autism is too broad and can lead to ‘lumping together people who are so different’, but his preferred answer is sub-types rather than exclusion. He proposes categories including autism with a learning disability, autism with language needs, and co-occurring conditions such as ADHD, depression and epilepsy. He says: ‘The more we have, the more precise we can be about what people need.’
Critics say the debate puts people at risk
The NAS has dismissed Dame Uta’s position as ‘false narratives and outdated ideas’. Dr Sue Smith, the NAS’s head of clinical services, says: ‘We’ve got a group of people with a genuine need. We’re having this weird debate about what they should be called.’ The NAS warns that breaking autism into smaller groups could lead to discrimination and the removal of support.
Dr Monique Botha, an associate professor of psychology at Durham University, who is autistic, says Dame Uta’s ideas add to a narrative that some people are ‘just using this as a crutch’. Botha argues autistic people are united by key features including sensory sensitivity, a need for predictability and struggles with communication, even if their lives and outcomes differ sharply.
For Kayleigh, diagnosed in her thirties, the row is a distraction. She has had ‘zero’ professional support since diagnosis and has not visited her local town centre in years. She says: ‘You could call it “silly brain disease”. I still know what I’m going through.’
A government-commissioned independent review into neurodivergent conditions, including autism and ADHD, is due to be published shortly.
