NASWaiting times of more than 3½ years for a diagnosis of autism are pushing families to crisis point and NHS England and Government need take urgent action to reduce unacceptable waiting times, a charity has said.

The National Autistic Society (NAS) has warned that average waiting times for a formal diagnosis of autism of more than 3½ years for children and 2 years for adults are putting an unacceptable strain on families.

The charity has raised concerns with Simon Stevens, chief executive of NHS England, and Health Secretary Jeremy Hunt in letters signed by 11,627 people, including prominent autism experts Professor Simon Baron-Cohen and Dr Judith Gould. 

There is currently no consistent collection and monitoring of diagnosis waiting times in England, which the NAS says makes it impossible to measure progress and harder to improve services. The letters call on NHS England to act by recording and publishing key data on local NHS performance and adopting a standard so that no-one waits longer than 3 months for a diagnostic appointment. 

Without a diagnosis, people on the autism spectrum are often left without support for years and can fall into crisis, developing mental health problems such as anxiety and depression, the NAS said. This has a knock on impact on families, who have to deal the additional, sometimes overwhelming, strain of looking after their loved ones without help and, often, a full understanding of their needs.

Guidance from the National Institute of Health and Care Excellence (NICE) says that there should be a maximum of 3 months between being referred for a diagnostic assessment and a first appointment. But academic research from City University London and Goldsmiths University of London indicates that this timetable is not being met across the country. Indeed, the average delay between parents first contacting a healthcare professional and receiving a diagnosis for their child was 3.6 years, while for adults the delay was 2 years – although this was on average 5 years after concerns had first been raised.

NICE guidance states that early diagnosis and support can help the NHS make savings, by reducing the number of GP appointments, emergency admissions and use of mental health services. The National Audit Office has calculated that identifying and supporting 8% of adults with high-functioning autism and Asperger syndrome would save the public purse £67 million per year.

The NAS is calling for: 

NHS England to collect, publish and monitor key information on how long people are waiting for diagnosis, and how many people are known to their GP to have autism

NHS England to stipulate that there should be a maximum 3-month wait for a diagnostic assessment within new waiting times standards being developed

The government to write timely access to autism diagnosis into its mandate to NHS England.

Mark Lever, chief executive of the NAS, said: “Too many families and individuals are being pushed into anxiety or depression by years waiting for an autism diagnosis. It is deeply traumatic not to know why you or your child feel or act differently to those around you.

“Simply put, a diagnosis is life changing and essential to getting support and services.

“Reducing waiting times will drastically improve the lives of hundreds of thousands of people on the autism spectrum and their families, and it can also save money at a time when public funds are strained. That’s why we’re looking to Simon Stevens and Jeremy Hunt to act now and start monitoring how long people are waiting for a diagnosis.

“Autistic people have waited long enough; they can’t wait any longer.”