According to a survey by the National Autistic Society (NAS) of 1,047 parents of children on the autism spectrum, the average delay between first contacting a healthcare professional and receiving a diagnosis is 3.6 years.
The majority of parents (84 per cent) reported that the diagnosis process was stressful, and over half were dissatisfied with the diagnostic process.
Without a diagnosis, the NAS says that children on the spectrum are often left without support for years, which has a knock-on impact on families, who have to deal with the strain and often don’t have a full understanding of their children’s needs.
The charity is now calling on the NHS and Government to take urgent action to reduce ‘unacceptable’ waiting times for autism diagnosis.
It has raised its concerns in letters to the chief executive of NHS England Simon Stevens and the health secretary Jeremy Hunt, signed by 11,627 people.
In the letters, NAS argues that there is currently no consistent collection and monitoring of diagnosis waiting times in England, which makes it impossible to measure progress and harder to improve services.
The charity goes on to call on the health secretary to act by recording and publishing key data on local NHS performance and adopt a standard so no-one waits longer than three months for a diagnostic appointment.
Mark Lever, chief executive of the National Autistic Society, said, ‘Too many families are being pushed into anxiety or depression by years waiting for an autism diagnosis. It is deeply traumatic not to know why your child feels or acts 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.’
A Department of Health spokesperson said, 'The guidelines on autism make it crystal clear that families should wait no more than three months to start diagnosis. Every bit of the NHS should be adhering to these guidelines and NHS England is working with local areas to make sure these waiting times are cut.'