Experts have sounded 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 mental disorder.
Adults referred to some autism assessment centers have an 85 percent chance of being told they are on the spectrum, according to one study.
However, the figure may be as low as 35 percent elsewhere, researchers at University College London found.
Professor William Mandy, an expert in neurodevelopmental conditions and leader of the research, said the wide variation suggested that patients “They are being overdiagnosed in some areas and underdiagnosed in others..
Television presenter Melanie Sykes was diagnosed with autism at the age of 51 and shared the news in 2021. She is shown here in London in 2018.
Springwatch star Chris Packham, 62, spoke about his autism diagnosis in 2005 in the BBC documentary Inside Our Autistic Minds, which aired last year. Photographed on February 14, 2024.
Television personality Christine McGuinness has revealed that she was diagnosed with autism along with her three children in 2021. She is pictured here at an event in Manchester last year.
NHS bosses are now investigating the findings, The Guardian reports.
The experts concluded that diagnostic manuals, considered the bible of psychiatrists, are “open to many interpretations.”
It means there is “fundamentally a lack of consensus about where the correct boundaries of autism are,” they said.
Dr James Cusack, chief executive of the charity Autistica, said: “The diagnosis of autism can be a wild west in terms of inconsistencies in approach.”
“We know that there are many good quality assessment centers where people do not have access to appropriate autism diagnoses because that center follows unproven diagnostic practices, sometimes even those that they themselves have developed.”
Professor Mandy personally suspects that more centers underdiagnose adults than the other way around.
However, he admitted he couldn’t be sure because there is no set level of autism in society to compare it to.
Having autism means that a person’s brain works differently than normal.
It is not a disease and people suffer from it from the moment they are born, although it may not be detected until childhood and sometimes much later.
Autism exists on a spectrum. Some people will be able to lead a fully functional life without additional help. Others may need full-time assistance.
Classic signs of autism include problems communicating, finding certain stimuli or situations overwhelming, and repetitive behaviors.
According to a 2021 Newcastle University study, approximately one in 57 children in the UK is autistic.
However, rates have soared in recent years, leading to suggestions that the disorder is now being overdiagnosed. Similar claims exist for ADHD.
Experts maintain, however, that autism has been grossly underdiagnosed in the past, especially among women and girls.
This has led to a backlog of patients diagnosed later in life.
An additional factor that may have contributed to the increase is the disappearance of Asperger’s syndrome, which was once considered a separate condition but is now considered another form of autism.
TELEVISION stars Melanie SykesChris Packham and Christina McGuinness They have all recently shared their own autism diagnoses as adults, helping to raise awareness about the disorder.
Sociologist Professor Ginny Russell, from the University of Exeter, told The Guardian: “A rise in diagnoses can be traced back to increased awareness, which impacts how people identify themselves.”
He said this “leads to a call for more assessment centres, which has led to a further increase in diagnoses”, adding: “As awareness and diagnoses increase, those with less severe symptoms come forward with their own stories about how autism affects them.
“Diagnostic criteria are expanded to take these accounts into account, again leading to another increase in diagnoses.”
In 2021, experts found that autism diagnoses in England had soared by an “exponential” 787 percent in 20 years.
They suggested that increased awareness of the condition and more regular screening had driven the rise, but added that they could not rule out a rise in cases themselves.
This graph shows the percentage increase in the incidence of autism diagnoses from 1998 to 2018. UK researchers found that autism diagnoses had increased an “exponential” 787% in 20 years. They said the increase could be due to greater recognition of the condition among experts, particularly in the diagnosis of autism among girls and adults, but added that an increase in cases of autism itself could not 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 NHS England, an increase of 42 per cent compared to the same period in 2022.
One factor that could be contributing to an overall increase in diagnoses is private autism evaluations.
While guidance from the National Institute for Health and Care Excellence states that no one should wait more than three months between being referred and being seen for the first time, the latest NHS figures show that more than 80,000 people have been waiting longer time.
This leads some to turn to the private sector, where patients can pay around £2,000 for an autism assessment.
Experts warn that the same problems of 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 has published new national guidance for autism assessment services to ensure local areas can manage the 50 percent increase in referrals they have seen. compared to last year while ensuring people have the support they need while they wait to be tested.
