The number of patients waiting for an autism assessment has soared across England. In March there were around 100,250 people with an open “suspected autism” referral. That compares to 71,954 people in April 2021 – an increase of 39.3%.
Autism is a complex and lifelong developmental disability that can impact the way people communicate, interact with others, and form relationships, although not all autistic people see themselves as disabled. Autistic people may have difficulty with speech or understanding verbal and non-verbal language like gestures or tone of voice.
They can often struggle to recognise or understand other people’s feelings and intentions, and that can sometimes make it difficult for them to make and keep friends. Many autistic people also suffer from extreme anxiety – particularly in social situations or when facing change – and they can be hypersensitive to light, sound, taste, or touch.
But autistic people can still become high achievers, for example, TV presenter and wildlife expert Chris Packham, who was diagnosed with Asperger’s Syndrome in 2005, when he was in his 40s.
Autism affects people in different ways and to varying degrees, and so is characterised as a “spectrum condition”. That means an assessment is essential in identifying what support each individual may need – and according to guidance published by the National Institute for Health and Care Excellence (NICE) that should start within three months of a referral being opened and should be carried out by a team of autism specialists.
Across England, the number of people receiving their first appointment within 13 weeks has steadily increased, from 5,640 in April 2021, to 7,536 in March 2022, a rise of 34%. The proportion of people receiving an appointment within 13 weeks has also increased slightly, from 9.2% in April 2021, to 9.5% – but that still means that fewer than one in 10 patients were seen within three months in March.
Tom Purser, head of guidance, volunteering, and campaigning for the National Autistic Society, said: “These latest NHS figures suggest that over 100,000 people are waiting for an autism assessment in England, which is a big increase on the numbers a year ago.
“An autism diagnosis can be life-changing and is vital to getting help and support. It’s encouraging that more people appear to be having their first appointment within 13 weeks. NICE guidance is clear – no-one should wait longer than three months between being referred and first being seen.
“Without proper long-term funding for diagnosis services across the country, we fear that people will still have to wait months or even years for a diagnosis. For many of them, this will mean struggling without support at school, work or home. The Government must urgently invest in rolling out these services, as set out in the national autism strategy, and make sure that autistic children, adults, and families get the right support.”
Mr Purser warned the figures are still new and don’t yet provide “a complete and accurate picture of just how long people are waiting for a diagnosis across England”. He called on the NHS to continue work to make the data more robust “so areas can be held to account for carrying out a diagnosis in good time”.