Learning Disability Today
Supporting professionals working in learning disability and autism services

143,000 people currently waiting for autism assessments

More than 143,000 people are currently waiting for an autism assessment in England, according to the latest NHS figures.

In the same period last year, just over 100,000 people were waiting for an autism assessment in England. This means there has been nearly a 50% increase within the space of one year.

In total, 118,223 (83%) had a referral that had been open at least 13 weeks. This is despite NICE guidance stating that no one should wait longer than three months between being referred and being seen.

NAS concerned about the impact of long waiting times for autism assessments

The National Autistic Society (NAS) is hugely concerned about the impact of these long waits on autistic people.

An autism diagnosis is vital to getting the right help and support, and without a diagnosis many people struggle at school, work or home.

Autistic people who do not have a diagnosis are also more likely to develop mental health problems like anxiety or depression – and in some cases end up in crisis or even in hospital.

Could be 210,000 people waiting for an autism assessment by this time next year

NAS say delays have been made much worse by the pandemic, and the number of people waiting for an autism assessment has risen by 306% since February 2020, when there were 35,000 people waiting.

The charity is also concerned about the ‘postcode lottery of care’ that many autistic people face, with much longer waits for assessments in areas such as Berkshire, Devon and Cumbria, according to recent data.

The data also shows that healthcare professionals are struggling to keep up with the level of demand, and in June 2023, there were 10,910 new referrals and 7,194 closed referrals in June 2023. This is an increase of 27% for new referrals and 46% for closed referrals compared to June 2022.

NAS are now urging the government to act on the commitments it made in the National Autism Strategy, and provide immediate funding for diagnosis.

They warn that if the waiting list continues to grow at the same rate it has been, there will be over 210,000 people waiting for an autism assessment by June next year.

NHS must work to ensure autism assessment data is “more robust”

Mel Merritt, Head of Policy and Campaigns at the National Autistic Society, said: “The NHS has published the latest more accurate figures that show there are 143,119 people waiting for an autism assessment in England – an increase of 47% in just one year. People often can’t get the right help and support without an autism diagnosis, and long waits for diagnosis and support can leave people in a difficult situation and increase their likelihood of reaching crisis point.

“Without urgent long-term funding for diagnosis services, waiting lists will continue to grow. The Government must invest in diagnosis services, as set out in the national autism strategy, to reduce waiting times and ensure all autistic children, young people and adults get the support they need.

“The publication of these statistics is important. But it’s also important to remember that these figures are still new and are constantly being updated, so don’t yet give us a complete and fully accurate picture of just how long people are waiting for a diagnosis across England. The NHS must continue working to make this data more robust, so areas can be held to account for carrying out a diagnosis in good time.”

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