People in Surrey face a wait of more than a year to be assessed for autism.

The average waiting time for adults to get a diagnostic assessment in 2019/20 was 370 days, a month longer than the year before.

Referrals to Surrey and Borders Partnership NHS Foundation Trust (SABP) have gone up year on year, and the trust says it is now at three times service capacity.

"For any family in that difficult time between identifying a problem and being able to name it, waiting is the hardest thing," said Benedicte Symcox of the parent-carer forum Family Voice Surrey.

Nick Markwick, Co-chair of Surrey Coalition of Disabled People, said: "The stats are really quite shocking, the amount of time people are waiting for an assessment of 370 days – and that was pre-pandemic."

"I was shocked about the unacceptable average wait time, which is appalling to be quite frank," said Cllr Kay Hammond, chairman of Surrey county Council's children, families, lifelong learning and culture select committee.

There are estimated to be around 9,500 people aged 17 and over in Surrey with autism.

Cllr Clare Curran, a member of SCC's adults and health select committee, said at its January meeting: "These waiting times being so long are causing residents a great deal of difficulty.

"If a young person comes as a university student to Surrey, and is referred into our adult autism section, the waiting list is so long that they would not be seen during their entire time at university.

"That doesn't seem to me to be a terribly fit-for-purpose service."

Rise in referrals.

Referrals to the neurodevelopmental team for diagnosis in adults increased by 11 per cent last year, to 944 people. "Unfortunately, this means that people are having to wait much longer for an assessment than we would like, which we understand can be very frustrating," said Dr Raja Mukherjee, clinical lead for the adult autism diagnostic service at SABP, and a consultant psychiatrist in neurodevelopmental services. "It's hard for us to say exactly why we might be seeing these larger numbers, but we could guess that it relates to greater awareness of autism in the community and of the benefits of getting a diagnosis in adulthood." He added: "Thousands of adults in Surrey have received an assessment through our clinic in Epsom. Many of those people – aged from 18 to 80 – have told us that getting an adult diagnosis has been truly life-changing and given them the answers they were looking for." Before SABP's Adult Autism Spectrum Disorders Diagnostic Service opened in 2013, people in Surrey had to travel to London to get an autism diagnosis on the NHS. Although the service has even diagnosed people in their 70s and 80s, most referrals are for people under 30. Support group.

Family Voice Surrey consults parents and carers of people with additional needs up to the age of 25, with the aim of making sure policy makers hear about real experiences.

Operations Lead Benedicte Symcox said the issue of the waiting time for assessment was frequently raised at the group's coffee mornings, and had been for a long time. She recommended the free, confidential online counselling service Qwell.

But she said she had noticed "a change in the culture of Surrey County Council" over the last 18 months, which meant it is listening more, "instead of thinking it knows," she said.

"There was a sense from officers if you are meeting their needs, does it really matter if they have a label. In theory that's not unreasonable, but there has been a shift that assessment and diagnosis are very important to people, for a wide range of reasons.

"They'd say people are driving for a diagnosis – they're not driving anything, they're hanging on for dear life and trying to do the right thing.

"What they want is an assessment because they want to understand what the problem is and how then to fix it. You are much better able to put in the right tools to provide the right support when you understand."

Steve Hook, assistant director of learning disabilities and transition at SCC, which commissions SABP, said: "Through our consultation we received a wealth of feedback saying 'I would have preferred a diagnosis earlier but once I got it, I've been able to access a whole range of services'. So we know that diagnostics and assessment is key."

He recognised 370 days was "not an acceptable level of waiting" and said the council is working with SABP and with joint commissioners Surrey Heartlands to "look at how we can start to improve the resourcing of that neurodevelopmental service".

The survey respondents also commonly reported "falling through the gaps," with a disjointed transition from childhood to adult support.

Cllr Nick Darby, vice-chairman of the adults and health select committee, said this transition needed to be properly coordinated without delay. "Services don't link up and people fall through the cracks," he said.

Dr Mukherjee from SABP added: "The approach we take in adult autism services is very different to that for children. We have to consider issues such as the person's housing, social support and right to live independently in our support plans, for example.

"We therefore welcome the development of a new autism strategy and the efforts to help identify the gaps in current provision and work towards a seamless transition between assessment and support services across the lifespan."

Find more information about autism on the Family Voice Surrey website and [L+]https://www.autism.org.uk[L+]autism,org.uk[.L]