DR. MAX PEMBERTON: Why we should stop diagnosing people who say they’re uncomfortable as autistic
Something strange is going on. Autism, a serious neurodevelopmental disorder, has gone from being relatively rare to being ubiquitous. Turn on the TV, open a newspaper or scroll through social media and you will encounter more and more people talking about the diagnosis.
What’s behind this apparent epidemic? It’s mind-boggling because until a few years ago I could count on one hand the number of patients with autism I had seen in general mental health outpatient clinics. Now I see at least one a week.
Many of these new patients complain of social awkwardness, perfectionism, obsessive traits, and so on. However, having worked in learning disability services with people with profound autism, their symptoms do not come close to what autism really is, or at least what it used to be called.
This epidemic is partly fueled by the fact that autism has been reclassified in recent years as ‘autistic spectrum disorder’ (ASD). Autism is a complex condition, and it was believed that the idea of a ‘spectrum’ better captured the variation in how it can manifest.
Autism is a complex condition, and it was believed that the idea of a ‘spectrum’ better captured the variation in how it can manifest.
But the problem is that in medicine, when something falls on a spectrum, there is inevitably ‘diagnosis creep’: the criteria are broadened so much that the diagnosis can ultimately become almost meaningless.
In fact, a study published in 2018 by the Universities of Montreal and Copenhagen astonishingly concluded that if the trend continues, within a decade there will be no separation between someone with the condition and the average person – meaning we will all will fall into the ‘heavy’ category. as autistic.
Another study found that between 1998 and 2018, the number of autism diagnoses increased “exponentially” by 787 percent.
In response, Professor Uta Frith, an expert on cognitive development at University College London, warned that “it strongly suggests that the diagnosis of autism has been stretched to its limits and outgrown its purpose.”
Dr Mike Shooter, a child psychiatrist and former president of the Royal College of Psychiatrists, has said that ASD is ‘widely and dangerously overdiagnosed’.
There’s also no doubt that social media, awash with test-it-yourself quizzes, is fueling this alarming trend even further. Thanks to the way algorithms work, after taking a few tests or searching for autism symptoms, you’re presented with a feed of similar content, further and further convincing you that you or your loved one must have the condition.
I’m seeing an increasing number of adults who have been diagnosed – many after paying a lot of money for a private assessment.
It has become a trendy label to medicalize, simply because it doesn’t fit in or is a bit shy and different.
Although autism has always been considered a male condition (it has also been called an ‘extreme male brain’), the suggestion that women could learn to ‘mask’ symptoms and therefore have historically been underdiagnosed has now opened the floodgates.
If women can learn to mask the symptoms, maybe some men can too? And so the creeping overdiagnosis continues. In true American style, being autistic has now become an “identity.”
Many of us who have worked with autistic people – or who have family members with the condition – are wary of this.
It is deeply insulting that this condition, which causes serious limitations and difficulties in patients’ daily lives, can be hijacked by people who, for example, enjoy programming or feel uncomfortable at a party. This diminishes and belittles the struggles of those with true autism.
Of course, people with autism can lead happy, fulfilling lives, but they – along with their families and caregivers – need support and resources. The legions now flooding psychiatric clinics demanding testing are simply taking time and resources away from those in desperate need.
There is no doubt that many of these people who claim to have autism have problems. But features of autism, such as social impairment and obsessive behavior, are not unique to the condition. They are present in many psychiatric conditions.
Furthermore, being labeled takes away the person’s responsibility and freedom of choice. It unnecessarily pathologizes difference and labels it a psychiatric condition, when it is simply a normal part of human variation – part of the richness of life.
Some may enjoy being diagnosed as autistic because it makes them feel different and allows them to rely on special circumstances.
People like a label, especially if they think it means they don’t have to change and can be used as a counterbalance to criticism of their behavior or shortcomings.
The result of this overmedicalization of our differences is that the term autistic becomes meaningless.
If we don’t fight this, those who need the most help and resources will ultimately lose out.
My heart sank when I heard that millions of smart watches for health monitoring will be distributed by the NHS. God knows how much this gimmick will cost. People don’t want a smart watch, they just want to see a doctor.
Strict bed rest for Amy!
Strictly dancer Amy Dowden missed out on this weekend’s shows after falling ill during filming the Saturday before
Strictly dancer Amy Dowden missed taking part in this weekend’s shows after falling ill during filming the Saturday before. Just hours before collapsing backstage, she admitted it was “really, really tough” returning to work.
In May 2023, the 34-year-old, left, was diagnosed with stage 3 breast cancer, and later that year was diagnosed with ‘another type of cancer’, forcing her to miss last year’s series. I hope Amy, who also has Crohn’s disease, gives herself enough time to recover.
We put so much faith in modern medicine that we forget that our bodies need time to recover. Skipping this part does us no good and often makes us feel unwell for longer and increases the risk of complications.
How many of us have gone to work with a cold or after surgery when we should have been in bed? I hope Amy doesn’t feel like she has to come back before she’s ready.
I admit that I am very cynical about the government’s new NHS consultation. I’m not sure why they need it as the problems facing the healthcare system are obvious.
I also suspect that this public consultation will be used to justify unpopular changes – an attempt to soften us up for backdoor privatisation, reducing NHS supply and introducing secret charges for certain aspects of healthcare.
However, if we don’t tell the government what we think about the NHS – good and bad – it sends the message that we don’t care and we don’t care. That’s why I encourage everyone to make their voices heard loud and clear by submitting a response to: change.nhs.uk.
A history of medicine in 12 objects
This fascinating book by Dr. Carol Cooper makes a great Christmas gift for history buffs.
Twelve objects – such as the bone saw, X-ray machine and ECT machine – are required and used as a starting point to explore our human ingenuity, examining the changing understanding of health and advances in medicine over the centuries.
Priced at £17.24 (hardback) at Amazon.