Families demand Government action on two-year waits for autism diagnoses

Families affected by autism gathered outside the Houses of Parliament yesterday to call on the Government to take urgent action to reduce waiting times for autism diagnosis. Each family waited an unacceptably long-time for a diagnosis – up to nine years – and want the Government to stop others from having to go through the pain and distress they endured.

The National Autistic Society (NAS) event was part of its autism diagnosis crisis campaign and was timed to coincide with the Government’s consultation on the NHS’ priorities in England. The chairty are campaigning to ensure autism diagnosis waiting times are being discussed as part of the consultation and hopes this leads to the Government committing NHS England to prioritise reducing waiting times and to introduce a waiting time standard.

National guidelines state that people should only wait three months between being referred for an autism assessment and a first appointment. But on average, children end up waiting more than three-and-a-half years for a diagnosis after first seeking professional help, while adults wait two.

Without a diagnosis, many people on the autism spectrum struggle to get support, develop mental health problems and fall into crisis. NAS says 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 the National Institute of Health and Care Excellence (NICE).

Mark Lever, Chief Executive of the National Autistic Society, 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.”

Case study

Melanie Silver, 51, took part in the event. She waited nine years to get a diagnosis of Asperger syndrome for her son Sam, now 20, from the point she first sought professional help. Melanie is frustrated by the failure of the NHS to diagnose Sam earlier, which meant she didn’t know how to help him or get professional advice or support. Sam developed serious mental health problems as a teenager, which Melanie believes was in large part due to the long wait for a diagnosis. Sam, who was eventually diagnosed at the age of 14, becomes extremely anxious in social situations and has a number of sensory difficulties which make everyday life very difficult – he finds physical contact distressing, struggles with eye contact and strong smells like fish make him feel physically sick. Now his mother understands his needs, she’s able to support him better and he has just started university.

Melanie said: “It makes me sad to think how different our lives could have been if Sam had been diagnosed when he was younger. Without an understanding of his needs, we just didn’t know how to support him, how to help him cope with the world.

“I feel awful about how we pushed him to ‘fit-in’, without realising the stress it was causing him. There were so many missed opportunities, so many times we raised the issue of autism with professionals, only to be dismissed. It’s was so frustrating.

“I don’t want anyone else to have to go through the years of uncertainty and helplessness that we experienced. I hope our presence in front of Parliament will make the Government realise how delayed diagnosis can damage lives and prevent people with autism reaching their full potential.”

Response from NHS England and the Government

The NAS raised these concerns with Chief Executive of NHS England Simon Stevens and the 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. Simon Stevens and Jeremy Hunt have both responded, recognising the seriousness of the issue and making tentative steps to address it. But the charity say they have fallen short by not committing to start monitoring autism diagnosis waiting times across England, which makes it very 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 has also made the positive move of discussing autism diagnosis waiting times as part of its consultation on the NHS’ priorities in England.

The NAS has welcomed the initial response of NHS England and the Government but has warned that current commitments aren’t enough to solve the diagnosis crisis – they need to prioritise reducing waiting times.

_{*Melanie’s son’s name has been changed to maintain his anonymity.}