Over 200,000 people are now waiting for an autism assessment in England, with some having been on the list for years, alarming NHS data show.
Autism charities said it was unacceptable that the equivalent of the population of Luton or Portsmouth was now on a ‘traumatic’ waiting list for a diagnosis.
The latest NHS England figures, which cover the period ending March this year, show almost 202,000 patients had been waiting at least 13 weeks for an autism assessment.
This a rise of more than a quarter from the same time last year, when only about 158,000 patients were on the waiting list and nearly triple the figure in 2021.
Experts have warned that the continued growth of the autism assessment waiting list has overwhelmed NHS capacity to provide patients much needed support.
Data show the number of children waiting for an assessment accounted for a large part of the increase, with over half having to wait over two years.
In total, nearly 124,000 under 18s were on the waiting list for over three months, an increase of almost 30,000 compared to last year.
While NHS guidelines state that patients should only have to wait 13 weeks for an autism assessment the vast majority of patients, about nine in 10, wait far longer.
Autism charities said it was unacceptable that the equivalent of the population of Luton or Portsmouth was now experiencing a ‘traumatic’ wait for a diagnosis. Stock image
Figures are particularly dire for children. Those who did get an autism assessment had, on average, been waiting 542 days, about a year and a half.
This compares to average waits of 355 days for an assessment the year prior.
The number of adults waiting for an autism assessment also increased to about 78,000, a rise of some 15,000 year-on-year.
When all figures are combined, including those seen with 13 weeks, there was a total of just over 224,000 patients with a referral for autism in NHS England in March.
Mel Merritt, head of policy and campaigns at charity the National Autistic Society said the situation required rapid action from Government.
‘The number of people waiting for an autism assessment in England has rocketed to more than 224,000 people – that’s nearly the population of Luton or Portsmouth.
‘The waiting list has more than tripled since the publication of the National Autism Strategy in July 2021, despite its promise to reduce diagnosis waiting times and improve support.’
She said the impact of an early diagnosis for autism, or the lack of one, couldn’t be underestimated.
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
‘An autism diagnosis can be life changing and in some cases lifesaving, but getting an autism assessment shouldn’t be this hard.
‘The NHS’s own guidelines say people shouldn’t wait more than three months for an assessment, but the average wait is now over 14 months.
‘The assessment can be the first step to really understanding people’s needs and, too often, people can’t get support without a diagnosis, although this shouldn’t be the case.
‘Autistic people and their families face a constant fight for support in all aspects of their lives, and this often starts with long, traumatic waits for a diagnosis.’
Ms Merritt said the Government must provide urgent ring-fenced funding to boost autism assessment capacity and end the ‘worsening crisis’.
Ongoing delays on the waiting list have also been criticised by experts who have said system is simply ‘overwhelmed’ and that people are missing out on ‘vital support’.
Earlier this year Nuffield Trust chief executive Thea Stein said: ‘Long waits for autism assessments are nothing new, but sadly they are now a new normal.
‘The huge disparity between the demand for assessments and the NHS’s diagnostic capacity has to be one of the biggest mismatches across the whole of the health service.
‘Behind these numbers are children unable to access vital support, as well as growing numbers of adults — especially women — waiting for a diagnosis.
‘Long-term, we clearly need a greater political focus to address what is now a truly overwhelmed referral system.’
The Department of Health and Social Care was contacted for comment.
It comes as the Children’s Commissioner last year warned that kids forced to wait years for autism diagnoses on the NHS are being ‘robbed’ of their childhoods.
Data, accessed by the independent watchdog, shows one in six children seeking an autism diagnosis waited more than four years via the NHS’s community services.
This increase comes amid ringing concern that autism may be being over diagnosed in England, with cases having exploded nearly eight-fold in recent decades.
Some experts have repeatedly pointed to this being a result of a growing awareness of the spectrum disorder, which was only widely diagnosed as its own condition this century.
This has led to a ‘backlog’ of cases, particularly among women and girls who were less likely to be diagnosed in the past.
An additional factor experts say could have contributed to the rise is the retirement of Asperger syndrome.
This was once considered a separate condition, but which is now considered another form of autism.
However, others have pointed to the ‘wild-west’ of autism screening in England that could mean over-diagnosis could also be playing a part.
Last year a study revealed adults referred to some autism assessment facilities have an 85 per cent chance of being told they are on the spectrum.
Yet the figure can be as low as 35 per cent in other places, researchers at University College London found.
Charities have previously warned lengthy waits for an autism assessment can be damaging to patients and urgent action was needed to meet the rise in demand.
Autism is a spectrum disorder which affects how people communicate and interact.
According to the World Health Organisation, about one in 100 children across the globe has the condition.
Signs in adults include not understanding how others are feeling, getting anxious about social situations, having a strict routine or seeming blunt without meaning to.
Autistic children may avoid eye contact and not respond to their name being called, among other symptoms.
Autism is 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.
The condition exists on a spectrum. Some people will be able to lead fully functioning lives with no additional help. Others may need full-time assistance.
