Feb 18, 2025, MK Citizen: Autistic children and their families face 'long, traumatic waits' for NHS diagnosis in Milton Keynes, say experts
Central England
Children with suspected autism are waiting far too long for appointments to diagnose them, new NHS figures show
Only one in 50 patients with a referral for suspected autism in Bedfordshire, Luton and Milton Keynes health area got a first care appointment within the recommended time frame, the data reveals.
And now the National Autistic Society said patients and their families too often face "long, traumatic waits for a diagnosis", and has urged the Government to invest in diagnosis services.
But NHS England figures suggest only 30 of the 1,245 NHS Bedfordshire, Luton and Milton Keynes Integrated Care Board patients with a referral for suspected autism that had been open longer than the recommended 13 weeks had an assessment within that time as of December.
Around a further 670 referrals led to a consultation after the 13 weeks had passed, but approximately 550 referrals did not result in an appointment at all.
A patient can have more than one open referral at the same time.
Across England, less than 5% of the nearly 191,700 patients with a referral for suspected autism that had been open for at least 13 weeks had had a first care contact within the recommended timeframe as of the end of 2024.
The median waiting time for a first appointment was 357 days.
Meanwhile, the number of patients with an open referral for suspected autism continued to increase, with 7,603 new referrals and 6,770 closed ones recorded across the country in December.
There were 212,964 patients with an open referral for suspected autism in England at the end of 2024, meaning 90% of referrals had been open at least 13 weeks.
The Government introduced the National Autism Strategy in 2021, aimed at improving the understanding of autism within society, supporting autistic people at school and in employment, and reducing the wait for an autism diagnosis.
However, Mel Merritt, head of policy and campaigns at the National Autistic Society, highlighted the number of patients with an open referral has more than tripled since December 2021, and warned autistic people often cannot access support without a diagnosis.
She said: "An autism diagnosis can be life changing and in some cases lifesaving.
"Autistic people and their families face a constant fight for support, which often starts with long, traumatic waits for a diagnosis.
"The Government must provide urgent funding for diagnosis services to end this worsening crisis, and make sure autistic people and their families get the support they need when they need it."
An NHS spokesperson said: "While the NHS is managing a 165% increase in autism referrals over the past four years, there has been an improvement in the number of assessments completed.
"But there is clearly a lot more to do, which is why the NHS has published national guidance to help local partners deliver high-quality autism assessment services and provided enhanced autism training for psychiatrists."
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