When autism pioneer Uta Frith started her career as a neuroscientist back in the late Sixties, hardly anyone outside a small academic cohort had heard of autism, a lifelong condition which affects how people communicate and interact with the world. “It was considered an uncommon disabling condition that affected a tiny proportion of children, around four in 10,000,” says Prof Frith, now based at the Institute of Cognitive Neuroscience at University College London. “When I did my PhD thesis on autism, people asked me, why would you study something so rare?”
Today, autistic spectrum disorder is widely known and even celebrated as a facet of neurodiversity – partly thanks to Prof Frith’s efforts to raise its profile and highlight the problem of widespread underdiagnosis.
Around one in 100 people in the UK are living with autism, according to the National Autistic Society. It’s now understood that it can cause mild symptoms or in more severe cases include difficulties with social interaction, communication as well as unusual sensory perception and unusual patterns of thought and physical behaviour.
The numbers affected continue to rise: a study published last month by the University of Exeter found that diagnoses have shot up by 787 per cent between 1998 and 2018. But though many welcome signs of improving awareness of autism, some experts – including Prof Frith – believe we may now be overdiagnosing it.
“I never thought I would say this since I was eager to embrace a widening of the diagnostic criteria, but I had no idea just how elastic it would become,” says Prof Frith.
“The Exeter data strongly suggests that the diagnosis of autism has been stretched to breaking point and has outgrown its purpose. If the purpose is to predict what an individual’s needs are, this is no longer possible.”
Experts agree that the rise in diagnoses of autism probably don’t reflect a real rise in incidence, and is instead down to increased identification.
Tim Nicholls, head of policy and public affairs at the National Autistic Society, says greater awareness about autism is causing more people to come forward, pointing out that the Autism Act of 2009 made it mandatory to have diagnostic services for adults. “In the past, unless your autism was picked up as a child, you may not have been identified at all. Now more adults are seeking diagnosis for themselves.”
The trend is being driven too by a broadening definition of what constitutes autism, and a better understanding of how it can present in women and girls – though boys are still three times more likely to be diagnosed.
Ashleigh Tompkins, 26, lives in Bournemouth and was diagnosed with autism when she was 15. She says: “Women and girls are underestimated in the field of mental health, partly because we have a talent for masking, hiding away anything that may appear to be a problem. We are trained from early childhood to appear as quiet and unobtrusive. Women are under-reported because we are simply not taken seriously.”
She says she always knew she was different from other students at her school and was labelled a problem child, even though she was badly bullied. “I think they thought I was smart but couldn’t focus, was aggressive and angry and probably a whole host of other things.” She was diagnosed quite late in her mid teens but only began to accept her diagnosis of ASD when she went on to higher education and began to research her condition.
Although she is grateful that the condition is now being recognised more widely, she is concerned that people may now assume a diagnosis of autism too readily because it is so well known. “While I do think that the number of people getting diagnosed is playing catch-up, I also feel that people will take the first excuse to explain something that they don’t understand. Parents of very young children will latch on to autism because it is the first buzzword that they think of. There is a worry that their confirmation bias will twist any of their children’s behaviours into fitting that narrative.”
A misdiagnosis can prevent doctors from identifying other serious ailments with similar symptoms. Johanne Hewlett says her son William was misdiagnosed with autism at the age of seven when he was still at primary school.
In fact, she now thinks he was suffering from PANS/PANDAS, an autoimmune condition where a common infection is thought to trigger behavioural problems. The condition has only recently been described and remains a controversial area.
“I was told he had autism and we went down that route instead of looking for the real answers about his condition,” says Johanne, 46, who lives in Romsey, Hants, with William, now 11, and his older sister Charlotte, 13.
“Initially he started to be a bit naughty and defiant so we thought it was a behavioural issue, his handwriting declined to a scrawl and he lost his ability to do maths,” she says. She took him to a GP and as his behaviour declined further – becoming violent and suicidal – William was referred to Child and Adolescent Mental Health Services as a priority case. “They told me he definitely had [autism] and suggested that my husband and I go on parenting courses to learn how to deal with it.”
It wasn’t until Johanne joined a Facebook group for parents of children with autism that someone suggested he may have PANS/PANDAS. After reading up on it, she became convinced this was what her son had. They tried a course of antibiotics for William after persuading her reluctant GP, and immediately started to see changes in his behaviour. Four years later, she is still battling with a mental health team that still believes Williams does have autism. “The neurologist just wanted it to be autism and wouldn’t countenance anything else. We’ve had to pay tens of thousands of pounds in medical fees to have William diagnosed correctly and treated privately. He is now 98 per cent back to his old self, playing football, doing well in his studies and enjoying life. We’ve been through a horrible time, but it was worth it because he’s the little boy he used to be.”
Prof Frith hopes that researchers and doctors can start looking at how autistic spectrum disorder can be broken down into more meaningful subgroups.
Ironically, the term Asperger syndrome, which came to denote so-called high functioning individuals on the autistic spectrum, is now rarely used.
“I think it’s a pity that Asperger syndrome has gone, but I can see the reasons behind it,” says Prof Firth. “For example, it assumes a hierarchy between high functioning and low functioning individuals. However, we do need to start looking at how we can differentiate people who really do have very different problems and clinical needs.” This will also improve the quality of research into the condition, she says. “If everyone comes under the same banner, you end up just getting a lot of noise and no real quality data.
“There is also a question of stretching limited resources and avoiding stigmatising those who have more profound needs. If autism simply becomes seen as something like being introverted and interesting, then what about the people who have incredibly challenging physical and developmental needs? I worry that it might be difficult for them to be recognised in the crowd.”
She welcomes a wider conversation with compassion and understanding at its core. “Who really has autism or something that is like autism, is one of those things that divides people very sharply and it’s a sensitive issue. But we are now getting to a point where we have to have an honest debate.”
For more information visit autism.org.uk