landscape shot of the Houses of Parliament 
Today, the Government has published its latest Autism Self-Assessment Exercise report, revealing in a number of areas that support for autistic adults in England is worse than 2016. 

The Self-Assessment Framework (SAF) asks councils to report on how well they are putting the national autism strategy into action in their area. The overall findings from the report show that, although some areas have made improvements, progress has been patchy. Too many autistic people and their families are being let down at the local level.

The most worrying finding is that, although everywhere had a diagnosis pathway, the average reported waiting time between being referred for a diagnosis and being seen has almost doubled since 2016 (from 16 weeks to 30 weeks). The National Institute for Health and Care Excellence (NICE) says this should take no longer than 13 weeks. For the first time, a majority (62%) councils said they could not anticipate meeting this target within the year.

The diagnosis postcode lottery we uncovered in our Autism diagnosis crisis campaign looks like it’s getting worse. In the best performing areas, including Southwark, Nottinghamshire and Milton Keynes, the waiting time is between two to three weeks. But in the worst, which include Greenwich, Tameside and Bradford, people are waiting on average at least two years.

We’re also worried about the lack of progress on autism training. The Autism Act statutory guidance says that all staff in health and care should have autism training, but this is not happening in all areas:

  • 16% of councils said they have no plan at all for autism training
  • 63% said they had some training available
  • Only 21% say they are making this fully accessible

Staff who carry out social care assessments should also have specialist training. However, 43% councils said they don’t have this training. This has increased from 28% in 2016. This is very concerning because if staff carrying out assessments don’t understand autism well enough, they won’t identify someone’s needs. This means people could end up without support.  

Although these findings are really worrying, there have been some things that appear to have improved. The majority of councils have said the number of autistic adults found eligible for social care has increased. This could mean that more autistic people in those areas are getting the support they need to live fulfilled lives. But we know that for many autistic people this still isn’t the case. 

Even though it appears more autistic people getting care, it’s clear there are issues around autistic people who don’t have a learning disability being overlooked. More than 1 in 4 councils reported that there isn’t a clear path for this group to get a care assessment, and this has increased since 2016. This shouldn’t be the case, because the Care Act sets out that people should be assessed based on their needs, not on a particular diagnosis. 

You can see what your council reported on the Government’s website.

Jane Harris, Director of External Affairs at the National Autistic Society, said: “Today’s report reveals the devastating reality of life for many autistic people and their families in England. Instead of improving, average diagnosis waiting times have almost doubled since 2016 – and in one area the wait is now more than 10 times the recommended target. This is totally unacceptable.

"Long waits can be traumatic for autistic people and their families, who are often desperate for help. Having a diagnosis is often vital to getting support. Without it many develop mental health problems like anxiety or depression – and end up being pushed to crisis point.

"The Autism Act came into force 10 years ago, aiming to stop autistic adults falling between gaps in support and services. But its impact has been limited by national and local failings to invest in the specialist support autistic people need.

"Today's report must be a wake-up call for the Government, who are updating the national autism strategy later this year. The new strategy must set out a clear plan for funding and delivering specialist autism support – from diagnosis to help with everyday life – and guarantee that local areas are held to account.

“Autistic people have waited for ten years for the promise of the Autism Act to be fulfilled. This year is the Government’s chance to get it right.”

The National Autistic Society is joining with the All Party Parliamentary Group on Autism to run an inquiry into the Autism Act. Today’s findings will play a big role in deciding the recommendations we will make later this year to make sure that autistic people get the support and services they need. You can also look at all the answers from your local council on the Government’s website.

Our Autism Helpline provides confidential expert advice and support on autism for autistic people, their families and friends. Our lines are open 10am-4pm from Monday-Thursday. On Fridays, we are open from 9am-3pm (excluding Bank Holidays). You can call us on 0808 800 4104.