'Not Enough' campaign MP invite graphic

The NHS has published national data on autism diagnosis waiting times in England for the first time. This is an important first step and comes after years of campaigning. But this first batch of data is deeply disappointing and simply not good enough to give a clear picture of how long children and adults are waiting for an autism diagnosis across the country.

Our campaigning on autism diagnosis waiting times

Our charity has been campaigning for national data on autism diagnosis waiting times for several years. We need this data to be able to make sure services are meeting the needs of autistic people, and to hold local areas to account on bringing down their waiting times.

Long waits can be traumatic for autistic children, adults and their families, who are often already vulnerable. A timely diagnosis – national guidance says you should get a first appointment within three months - is vital to getting the support they desperately need. Without this, autistic people and their families can end up isolated, and develop mental health problems - often spiralling into a crisis.

In 2015, we launched our Autism diagnosis crisis campaign, and almost 12,000 people signed our letter to the Government and NHS England calling for reductions in diagnosis waiting times.

Since then, we’ve worked with Sir Norman Lamb on research that found people were waiting several months – and sometimes even years – for their first autism assessment. We continued to call for national data collection because we need to properly understand what’s going on in every local area. And, after lots of campaigning, the Government agreed to collect waiting times data from April 2018. This was a really important moment for our charity and our supporters.

What the data does - and doesn't - show

Unfortunately, after all our campaigning, this first set of data simply isn’t good enough. While the data is still being reviewed and should improve, not all health trusts have submitted data. And for some other trusts that have submitted information, the quality of their data is concerning.

This means we can’t yet reach a firm conclusion about how long people are waiting for their first diagnosis assessment across the country. This is really disappointing.

But this is new data which will continue to be collected, so should gradually contribute to a much clearer picture of diagnosis waiting times. NHS Digital, who collect the data, are also working to improve the quality. This is very important and our charity will help them with this process.

What we want to see change

It’s really important that whoever wins the General Election on the 12 December prioritises getting this data right and commits to tackling long autism diagnosis waiting times once and for all.

The next government must commit to putting specialist autism teams in every part of the country – who can make sure people receive a diagnosis in good time, as well as the support they need after diagnosis. This is something we’re calling for as part of our current Not Enough campaign.

We’re calling on all political parties to make sure the next government addresses the autism diagnosis crisis in the next autism strategy. Join us by signing our open letter.

Response

Jane Harris, Director of External Affairs at the National Autistic Society, said: "For the first time – after years of campaigning - we have NHS statistics on how long children and adults are waiting for an autism assessment in England. It’s an important first step but the data itself is deeply disappointing. Although the data should improve over time, what has been published today is very limited and we have concerns about its quality.

"We’re shocked that so few NHS trusts have submitted this information to NHS Digital. All trusts should take seriously their responsibilities to diagnose autistic people and report their waiting times publicly.

We’ve been calling for national autism diagnosis data for years, because that’s how we can make sure that services are meeting needs and accountable to autistic people and their families. But what’s been published isn’t enough to give us the national picture at all.

"Whoever is in Government after the election needs to tackle the autism diagnosis crisis once and for all. That starts with a firm commitment to get this data in place. And this must go alongside a commitment to put specialist autism teams in every part of the country that can diagnose people in good time, and support them afterwards. We’re looking to every party standing in England to make this promise to autistic people and their families."

Further information

  • Find out more about diagnosis on our website. This includes information on the process for children and adults, what to do following a diagnosis and diagnostic terms and criteria.
  • The All Party Parliamentary Group on Autism, with support from our charity, held an inquiry into the state of support and services for autistic people in England – 10 years on from the Autism Act.