Experts have sounded the alarm over the ‘wild-west’ of autism diagnosis in England.
The warning comes amid a growing number of celebrities sharing their own battles with the mental disorder.
Adults referred to some autism assessment facilities have an 85 per cent chance of being told they are on the spectrum, a study found.
Yet the figure can be as low as 35 per cent in other places, researchers at University College London found.
Professor William Mandy, an expert in neurodevelopmental conditions and leader of the research, said the wide variation suggested patients ‘are being overdiagnosed in some areas and underdiagnosed in others’.
TV presented Melanie Sykes was diagnosed with autism at the age of 51 sharing the news in 2021. Here she is pictured in London in 2018
Springwatch star Chris Packham, 62, opened up about his 2005 autism diagnosis in the BBC documentary Inside Our Autistic Minds which aired last year. Pictured February 14, 2024
TV personality Christine McGuinness has revealed she has been diagnosed with autism along with her three children in 2021. Here she is pictured at an event in Manchester last year
NHS chiefs are now investigating the findings, The Guardian reports.
Experts concluded that the diagnostic manuals — considered the psychiatrists’ bible — are ‘open to a lot of interpretation’.
It means there’s ‘fundamentally a lack of consensus as to where the right boundaries of autism are’, they said.
Dr James Cusack, chief executive of the charity Autistica, said: ‘Autism diagnosis can be a wild west in terms of inconsistencies in approach.
‘We know that many good quality assessment centres where people are not getting access to proper autism diagnoses because that centre follows untested diagnostic practices, sometimes even ones they’ve developed themselves.’
Professor Mandy personally suspects more centres are underdiagnosing adults than the other way around.
However, he admitted that he couldn’t be sure because there is no established level of autism in society to compare it to.
Having autism means a person’s brain works differently to normal.
It’s not a disease and people have it from the moment they are born, although it may not be spotted until childhood and sometimes much later.
Autism exists on a spectrum. Some people will be able to lead fully functioning lives with no additional help. Others may need full-time assistance.
Classic signs of autism include trouble communicating, finding certain stimulations or situations overwhelming and repetitive behaviours.
According to a 2021 Newcastle University study, around one in 57 children in the UK is autistic.
Yet rates have spiralled in recent years, sparking suggestions that the disorder is now being overdiagnosed. Similar claims exist for ADHD.
Experts argue, however, that autism has been massively underdiagnosed in the past, particularly among women and girls.
This has then led to a backlog of patients getting diagnosed in later life.
An additional factor that could have contributed to the rise is the retirement of Asperger syndrome, once considered a separate condition, but which is now considered another form of autism.
TV stars Melanie Sykes, Chris Packham and Christine McGuinness have all recently shared their own autism diagnoses as adults, helping to raise awareness of the disorder.
Sociologist Professor Ginny Russell, of the University of Exeter, told the Guardian: ‘A rise in diagnoses loops backs to increased awareness, which impacts on how people identify themselves.’
She said this ‘leads to a call for more assessment centres, which has led to a greater rise in diagnoses’, adding: ‘As awareness and diagnoses increase, those with less severe symptoms come forward with their own stories of how autism affects them.
‘The diagnostic criteria is widened to take these accounts onboard, which loops back again to another increase in diagnoses.’
In 2021, experts found autism diagnoses in England had soared by an ‘exponential’ 787 per cent in 20 years.
They suggested increased awareness of the condition and more regularly screening had driven the increase, but added they couldn’t rule out a rise in cases itself.
This chart shows the percentage increase in incidence of autism diagnosis from 1998 to 2018. UK researchers found autism diagnoses had risen by an ‘exponential’ 787% over 20 years. They said the rise could be due to increased recognition of the condition among experts particularly in diagnosing autism among girls and adults, but added an increase in cases of autism itself cannot be ruled out
The latest NHS data suggests this trend has continued.
Data for September shows there were 10,344 new referrals for suspected autism in the NHS in England, a rise of 42 per cent compared to the same period in 2022.
One factor that could be contributing to a general rise in diagnoses is private autism assessments.
While National Institute for Health and Care Excellence guidance asserts that no-one should wait longer than three months between being referred and first being seen, latest NHS figures show over 80,000 people have been waiting longer than this.
This leads to some turning to the private sector where patients can pay about £2,000 for an autism assessment.
Experts warn the same problems with consistency and variation in NHS autism diagnosis are also present in many of these private clinics.
Reacting to the new study an NHS spokesperson said: The NHS is fully committed to supporting and improving the lives of autistic people, and published new national guidance for autism assessment services to ensure local areas can manage the 50 per cent increase in referrals they have seen over last year while ensuring people have the support they need as they wait to be assessed’.
