Experts have raised the alarm about 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 centers have an 85 percent chance of being told they are on the spectrum, a study has found.
Yet in other places this figure can be as low as 35 percent, researchers at University College London found.
Professor William Mandy, an expert in neurological disorders and leader of the study, said the wide variation indicated that patients’are overdiagnosed in some areas and underdiagnosed in others.
TV presenter Melanie Sykes was diagnosed with autism at the age of 51 and shared 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 on February 14, 2024
TV personality Christine McGuinness has revealed she was diagnosed with autism in 2021 along with her three children. Here she is pictured at an event in Manchester last year
NHS chiefs are now investigating the findings, The guard reports.
Experts concluded that the diagnostic manuals – considered the psychiatrists’ bible – are ‘open to much interpretation’.
It means there is “fundamentally a lack of consensus about where the appropriate boundaries of autism lie,” they said.
Dr. James Cusack, director of the charity Autistica, said: ‘Diagnosing autism can be a wild west when it comes to inconsistencies in approach.
‘We know that there are many high-quality assessment centers where people are not accessing correct autism diagnoses because that center follows untested diagnostic practices, sometimes even ones that they have developed themselves.’
Professor Mandy personally suspects that more centers underdiagnose adults than the other way around.
However, he admitted he couldn’t be sure because there isn’t a set level of autism in society to compare it to.
When you have autism, a person’s brain works differently than normal.
It is not a disease and people have the disease from the moment they are born, although the disease may not be noticed until childhood and sometimes much later.
Autism exists on a spectrum. Some people will be able to live a fully functioning life without additional help. Others may need full-time help.
Classic signs of autism include communication problems, finding certain stimuli or overwhelming situations, and repetitive behavior.
According to a 2021 study by Newcastle University, around one in 57 children in Britain is autistic.
Yet figures have risen dramatically in recent years, suggesting the condition is now overdiagnosed. Similar claims exist for ADHD.
However, experts claim that autism has historically been vastly underdiagnosed, especially among women and girls.
This subsequently led to a backlog of patients who were diagnosed at a later age.
An additional factor that may have contributed to the rise is the retirement of Asperger’s syndrome, which was once considered a separate condition but is now considered another form of autism.
TV stars Melanie SykesChris Packham and Christine McGuinness have all recently shared their own autism diagnoses as adults, raising awareness of the disorder.
Sociologist Professor Ginny Russell from the University of Exeter told the Guardian: ‘A rise in diagnoses is associated with greater awareness, which affects the way people identify themselves.’
She said this ‘is leading to a call for more assessment centres, which has led to a greater increase in diagnoses’, adding: ‘As awareness and diagnoses increase, people with less severe symptoms are coming forward with their own stories about 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 2021, experts found that autism diagnoses in England had risen by an ‘exponential’ 787 percent in 20 years.
They suggested that awareness of the condition had increased and that more regular screening had caused the increase, but added that they could not rule out an increase in the number of cases themselves.
This graph shows the percentage increase in the incidence of autism diagnoses between 1998 and 2018. British researchers found that the number of autism diagnoses had increased by an ‘exponential’ 787% in two decades. They said the increase could be due to increased recognition of the condition among experts, particularly in the field of diagnosing autism in girls and adults, but added that an increase in the number of autism cases itself does not can be excluded.
The latest NHS data shows this trend has continued.
Data for September shows there were 10,344 new referrals for suspected autism on the NHS in England, an increase of 42 per cent compared to the same period in 2022.
One factor that could contribute to an overall increase in diagnoses is private autism assessments.
Although National Institute for Health and Care Excellence guidelines claim that no one should wait longer than three months between referral and first treatment, the latest NHS figures show that more than 80,000 people have waited longer.
This is leading some to turn to the private sector, where patients can pay around £2,000 for an autism assessment.
Experts warn that the same problems with consistency and variation in NHS autism diagnosis also exist in many of these private clinics.
Commenting on 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 meet the 50 per cent increase in referrals they have seen are able to process compared to last year, while we ensure people get the support they need while they wait to be assessed.”