Those with suspected autism face ‘knock-on effects’ amid lengthy wait times

Waiting lists to be assessed for autism on the NHS in England are the longest since current records began, according to new data, with experts putting a surge in demand down to increased public awareness of the condition.

Charities have warned lengthy waits for diagnosis can have knock-on effects and called for urgent action from the Government to tackle the issue.

They also want shortages in the health service’s specialist workforce addressed.

Figures released by NHS Digital shows both the total number of waits for an assessment, and the number of waits longer than 13 weeks, are the highest they have been since the start of the data in April 2019.

The number of patients waiting for assessment as of December 2023 was 172,040, up from 117,020 on December 2022, and more than five times the 32,220 on December 2019.

Those waiting at least 13 weeks stood at 147,070 on December 2023, up from 97,170 on December 2022 and more than six times the 24,250 on December 2019.

Mel Merritt, head of policy and campaigns at the National Autistic Society, said: “It’s extremely worrying that waiting lists for an autism assessment in England have nearly doubled in the last year.

“There are now more than 172,000 people potentially struggling without the right help and support in their daily lives – nearly twice the capacity of Wembley Stadium.

“The Government promised to make significant progress in reducing diagnosis waiting times in its autism strategy, but these figures make clear how in fact the complete opposite is happening.”

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.

Dr Conor Davidson, autism champion for the Royal College of Psychiatrists, said: “Public awareness of autism has significantly increased in recent years, and this has led to a seismic rise in the number of people coming forward for support.

“It is estimated that at least 1% of the population is autistic so it is likely demand will continue to grow in the coming years.”

He added that the “vast majority of people are facing unacceptable waits for an assessment, and we cannot allow this to become normal”.

“Autistic people are also much more likely to have a co-existing mental illness which can put them at increased risk of self-harm and suicide if they are not able to access the care and treatment they need,” Dr Davidson warned.

“This increase in people coming forward is an opportunity for the Government to address the gap in NHS autism services by investing in autism diagnostic capacity and post-diagnostic support.

“Ensuring services are properly staffed and equipped will better enable them to provide timely and effective care.”

Jolanta Lasota, chief executive of Ambitious about Autism, said the charity is “deeply concerned” by the statistics, adding that they “reveal how difficult it is for families to access autism diagnoses for their children, and that the problem is only getting worse”.

“A lengthy wait for a diagnosis creates knock-on delays in children getting the right education, health and social care support, which can lead to absence from school, deteriorating mental health, and enormous pressure on families,” Ms Lasota added.

“The Government must take urgent action to bring down waiting times and address the chronic shortfall in the specialist workforce, so autistic children and young people can access the support and services that will enable them to thrive.”

Ms Merritt added: “Autistic people shouldn’t miss out on vital support, or even develop mental health problems and end up in crisis, because they haven’t received the timely assessment that they’re entitled to.

“Without urgent long-term funding for diagnosis services, waiting lists will continue to rise. The Government must keep its promise and invest in the support and services that autistic people and their families need.”

A Government spokesperson said: “We know it’s vital to have a timely diagnosis of autism, and we’ve made £4.2 million available this year to improve care for autistic children and young people, including autism assessment services.

“NHS England has also published a national framework to help speed up assessment, and our £13 million partnership with the Department for Education and NHS England tests ideas that will improve access to specialist support for neurodiverse children in primary schools.”