Families are waiting more than three and half years for diagnoses of autism in children, pushing many to crisis point, experts have warned.
The National Autistic Society said that the average waiting time for autistic adults to receive a diagnosis was two years.
In a letter in The Times today, 11,627 of its supporters say: “Delays mean that autistic people are developing mental health problems, falling into anxiety and depression, and that families are breaking down under the strain of being left to look after loved ones without any support.”
Earlier diagnosis could save £67 million a year by reducing the number of GP appointments and emergency admissions and the use of mental health services, the letter goes on to say.
Reasons for long waits include larger numbers of people asking for assessment, a lack of understanding of the condition among some GPs and a lack of diagnostic services and resources.
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Mark Lever, the society’s chief executive, 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. 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 [the chief executive of the NHS] and Jeremy Hunt [the health secretary] 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.”
The letter is also signed by Simon Baron Cohen and Judith Gould, autism experts who are calling on the government to monitor diagnosis waiting times in England and adopt a standard so that no one waits longer than three months for a diagnostic appointment.
The National Institute of Health and Care Excellence already supports a maximum wait of three months, but researchers from City University London and Goldsmiths, University of London found that the guidance was not being met.
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A study of parents writing about their child’s diagnosis found that the average wait between first contacting a healthcare professional and getting a diagnosis was 3.6 years. More than half said that the process had left them dissatisfied, with 84 per cent reporting it had been stressful.
A separate study of autistic adults found that their average time between first contacting a healthcare professional and receiving a diagnosis was two years. Almost a third had been forced to seek help privately.
According to the National Audit Office, identifying and supporting adults with high-functioning autism and Asperger syndrome would save £67 million per year.
It took 12 years for Sarah, 53, to get a diagnosis for her son, who is now 16. “He had experienced problems with learning, social interaction, anxiety and behaviour from a very early age,” she said. “It wasn’t until his behaviour really deteriorated and he hit crisis point that further investigations were made and a diagnosis was confirmed.
“The lack of support had a considerable impact on my mental health and also exacerbated the breakdown of my marriage. For my son, he has struggled to get an appropriate education and is only now about to enter specialist provision that will hopefully address his issues fully.”