autismLong waiting times for a diagnosis of autism – up to 9 years – are pushing families into crisis and the government needs to take urgent action to address this, the National Autistic Society (NAS) has said.

The government is currently consulting on the NHS’ priorities in England and autism diagnosis waiting times are being discussed as part of this. But the NAS wants to make sure this leads to action and the government committing NHS England to prioritise reducing waiting times and to introduce a waiting time standard.

National Institute for Health and Care Excellence (NICE) guidelines state that people should only wait 3 months between being referred for an autism assessment and a first appointment. But on average, children end up waiting more than 3 1/2 years for a diagnosis after first seeking professional help, while adults wait two, according to two recent surveys of people with autism. 

Without a diagnosis and the understanding it brings, many people on the autism spectrum struggle to get support, and can develop mental health problems and fall into crisis. This can also have a serious effect on families who can buckle under the strain of looking after loved ones without help and an understanding of their needs. An early diagnosis and support could also help the NHS make savings by reducing the number of GP appointments, emergency admissions and use of costly mental health services, according to NICE.

The NAS raised these concerns with Simon Stevens, chief executive of NHS England, and Health Secretary, Jeremy Hunt, back in August, sending them a letter signed by 11,627 people, including prominent autism experts Professor Simon Baron-Cohen and Dr Judith Gould. Stevens and Hunt have both responded, recognising the seriousness of the issue and making tentative steps to address it. But the charity said they have fallen short by not committing to start monitoring autism diagnosis waiting times across England, which makes it difficult to effectively measure performance, work out what’s causing long waits in different areas and ultimately improve services. 

However, there have been some steps forward. NHS England has promised to start reporting each month the number of people with a diagnosis of autism using mental health and learning disability services across England. They are also set to meet with service commissioners in some areas where waiting times are particularly long, with a view to establishing common barriers to timely assessments and improving services. The government is also discussing autism diagnosis waiting times as part of its consultation on the NHS’ priorities in England. 

The NAS has welcomed the initial responses but has warned that current commitments aren’t enough to solve the diagnosis crisis – they need to prioritise reducing waiting times.

Mark Lever, chief executive of the NAS, said: “Autistic people and their families have sent the government a clear message: urgent action is needed to address unacceptably long waiting times for autism diagnoses.   

“A diagnosis can be life-changing. It can explain years of feeling different, give people essential information about what might help, and unlock professional advice and support. But people are waiting an average of over two years for a diagnosis. This is unacceptable and is pushing families into crisis.  

“We’re encouraged by the initial response from NHS England and the government to our concerns, but now they need to turn their words into action. In particular, we want the government to tell NHS England to prioritise reducing waiting times.

“This isn’t much to ask and will make a huge difference to the more than one in 100 people on the autism spectrum in England, as well as to public finances. Simon Stevens and Jeremy Hunt can’t ignore the many people waiting for an autism assessment any longer; it’s time to act.”