Adults with autism are facing longer waits to be diagnosed and many are being denied their rights to a social care assessment, new figures suggest.
The first official progress report on the government’s autism strategy for two years shows people are waiting an average of 16 weeks for a first appointment, up from 13 weeks in the 2015 report. In parts of the country, the average wait is more than two years.
The report, published by Public Health England, is based on data supplied by councils in England.
Fewer than half of local authorities (45%) said an autism diagnosis triggered an automatic offer of a social care assessment, down from 54% in the 2015 report. Statutory guidance underpinning the autism strategy says assessments should be offered at the diagnosis stage and a referral made if needed.
Campaigners said the figures exposed the “autism diagnosis crisis” in England, with fewer than a quarter of councils meeting the three month waiting time target recommended by the National Institute for Health and Care Excellence.
Mark Lever, chief executive of the National Autistic Society, said: “There’s a striking variation between different areas across the country, with the longest average wait being 125 weeks.
“Autistic adults and their families frequently tell us how life changing a diagnosis can be. It can explain years of feeling different and help unlock crucial advice and support, which can make a huge difference to an individual’s prospects. But these figures suggest that getting this support is a huge problem too.”
Lever said he hoped moves by NHS England to start monitoring waiting times routinely, rather than relying on self-reported surveys from councils every two years, would help hold services to account.
Wesley was only diagnosed with autism in his thirties. He waited three and a half years for an appointment. He told Community Care the wait impacted his health.
“It was very stressful. You’re basically left in limbo waiting for a diagnosis. You’re panicking, because you’ve got no help whatsoever. I was just worrying about the appointment all the time, the idea of people watching you and getting all of these different tests,” he said.
“Waiting for a diagnosis like that…it was the focus of every single day. You’re building up to it and building up to it. It gets worse and worse and worse. When you’re waiting three and a half years, it becomes bigger than what it is.”
After being diagnosed Wesley wasn’t told he was entitled to a social care assessment. He feels support is badly lacking for people with autism.
“I was offered nothing to be honest. I got the diagnosis, they said ‘do you feel better?’. I did a bit but I had no other contact or a programme I could go to or anything. If you’ve got family who can help you might be alright, but a lot of people don’t. There are lot of people out there who are probably still waiting and are not diagnosed. It’s unbelievable really.”
In May, a group of autism providers raised concerns that even where people with autism had been offered social care support, care packages were being “routinely slashed” as councils looked to cut costs.
At the time, Margaret Willcox, president of the Association of Directors of Adult Social Services, said: “All councils should have in place a strategy for adults with autism. We would encourage people with autistic spectrum disorder, or their family to approach their local council if they feel in need of help or support.
“An assessment of need and advice and information is an excellent place to start notwithstanding what care services might be required.”
The Department of Health has been contacted for comment.
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