What’s behind the rise in autism diagnoses in Britain?

Autism is a condition that evolves slowly. In 2021, a study found a 787% increase in diagnoses between 1998 and 2018 in Britain.

An increase in the number of diagnoses has been a hallmark of autism for almost as long as it has been a recognized condition: 80 years agoAutism was thought to affect one in 2,500 children. That has gradually increased and now it does too one in 36 children They are believed to have autism spectrum disorder (ASD).

This exponential increase is partly due to greater awareness and understanding of the condition, as well as more doctors able to diagnose it. That has led to what one expert has called the “widening boundaries of autism assessment” – boundaries that are still moving outward.

Those boundaries include a wide range of people for whom autism would never have been considered as a possible diagnosis, especially women and girls. The resulting awareness has led to large numbers of adults seeking medical referrals to explain the differences they may have been aware of since childhood.

But there are also other factors behind the increase remain controversial, with those in the neurodiversity movement and experts have not yet determined whether the increase is also due to overdiagnosis or whether more children have the condition.

The author of the 2021 study says the boundaries of diagnoses could be further expanded. Professor Ginny Russell from the University of Exeter said: “I think this will continue until perhaps everyone is categorized as neurodiverse.”

Russell said that while there could be an argument for there being a marginally higher percentage of children with autistic traits requiring little support than before, there is “no plausible reason” to support an argument that cases of autism had increased substantially.

“What has happened is that the number of diagnoses has increased because of ever-widening boundaries of judgment – ​​boundaries that are still shifting outward,” she said. “Some even go so far as to suggest that people diagnosed with autism are united today just because they don’t fit in with their social environment.

“It could soon include people like me, for example. I have not changed, but because I have some autistic traits, I may soon be preoccupied with autism – because it itself is changing.”

Russell isn’t the only one noticing the dramatic increase in diagnoses. “When I started in this field in the 1980s, autism was considered quite rare,” says Prof. Simon Baron-Cohen, director of the Autism Research Centre. “But there has been a huge shift in recent decades, where the increase in diagnoses has been exponential.”

The National Auistic Society describes autism as a “range of conditions covering a broad spectrum of disabilities”. And there has been one 50% increase in the number of patients with an open referral for suspected autism in England in the past twelve months.

But there are people who say that even this increase is wrong: others research suggests that the total autistic population in England and Wales exceeds 1.2 million – almost double the 700,000 figure quoted by the government for the whole of Britain. This would be the case if the diagnosis rate were equal to that of young people under 19 at all ages, the study said.

Elizabeth O’Nions, the study’s lead researcher, said autism continues to be recognized in adults, with more than 90% of all autistic people over the age of 50 in England possibly undiagnosed.

But Dr Peter Carpenter, chairman of the Neurodevelopmental Psychiatry Special Interest Group, questioned this, pointing out that adult diagnostic services do not necessarily have the expertise needed to assess the adult population against modern criteria. “We probably don’t have a realistic idea of ​​what a ‘typical autistic 50-year-old’ looks like,” he said.

There have also been changes in the understanding of autism among people with learning disabilities: in the 1980s it was thought that only a quarter of people with learning disabilities had autism. Now the NHS recognises that it could even amount to three-quarters. “That’s an incredibly steep increase,” Baron-Cohen said.

Another increase in autism rates is due to the removal of Asperger’s syndrome as a diagnosis. The label was founded in 1994 and was officially retired in 2013, with the condition being subsumed under the umbrella term autism.

Another major moment of change was the neurodiversity movement of the late 1990s, which brought about massive changes in identification, combated stigma, and redefined autism as an identity rather than a disease. All this led to what Russell calls the ‘loop’.

“A rise in diagnoses is associated with greater awareness, which influences the way people identify themselves, leading to a call for more assessment centres, which has led to a greater rise in diagnoses,” she said .

“As awareness and diagnoses increase, people with less severe symptoms are coming forward with their own stories of how autism affects them. The diagnostic criteria are being expanded to include these accounts, which in turn leads to a new increase in the number of diagnoses.”

In short, there is no clear answer to the question of what autism is – or isn’t. Some say that will never happen.

William Mandy, professor of neurodevelopmental disorders at University College London, believes the vague nature of autism is a defining feature of the condition.

He said: “What are the qualities we need to have before we start labeling someone as autistic? That’s such an impossible question to answer that I think we should have a numerical cut-off point – maybe we should just say that 2% of the population is autistic.”

The only thing more important than the deep questions surrounding autism diagnoses is the sad truth that too often autistic people do not live happy lives. Compared to non-autistic people, they are approx 70-0% are more likely to have poor mental and physical health, have a lower level of education, unemployment and underemploymentvictimhood, social abstinence And premature death.

The NHS is doing its best, but since the height of the Covid pandemic the number of children waiting for an autism assessment has increased by 350%, with wait times of more than two years.

Child and adolescent mental health services (CAMHS) are at breaking point, with 80% of referrals to children’s mental health services in some parts of Britain being autism related. Some NHS commissioners have introduced new referral criteria to try to delist, in a way that parents say puts children at risk of harm, including suicide.

This has led some to question whether the main goal of autism research should be refocused to understand how to help autistic people live happier lives.

Mandy says: “We are currently very focused on making a ‘yes’ or ‘no’ distinction in terms of diagnoses. But why not say: ‘Someone has these qualities.’ How can that affect their lives and what can we do to help?’