Eighteen-year wait for adult autism assessments

Adults awaiting an autism diagnosis may have to wait up to 18 years before being assessed.

The Oxfordshire Adult Autism Diagnostic and Support Service (OAADSS) stopped taking on new patients at the end of November due to the the size of its current waiting list.

In documents seen by the BBC, the OAADSS has told patients that those referred after July of this year will not be assessed until 2041 at the earliest.

Buckinghamshire, Oxfordshire, Berkshire West Integrated Care Board (BOB ICB), who oversee adult autism diagnoses in the county, said it was working to "find a solution" to the delays.

Sarah's 19-year-old son was recently referred to OAADSS, before being told that their waiting list was closed.

"Unfortunately, we've met a bit of a dead end with the process already - as soon as it started, it stopped," she told the BBC.

Sarah's son was warned by his GP that a test may take up to a year after being forwarded on to the assessment service.

"A few days later, we received a letter from the surgery to say that they've just been informed that the clinic in Oxfordshire that performs the adult autism assessments has closed their books and has such a huge backlog that it's going to take them 18 years to clear it."

"That's almost his [Sarah's son's] age over again - he would be 37 by the time he could even pursue that option," she said.

Hayley, from Oxford, said her brother is currently on the waiting list, and will be assessed in 2030 - which she labelled as "just nuts".

"That's a really long time in an adult's life who's already been struggling for many many years, to then have to wait even further," she said.

Having seen the waiting times for adults in Oxfordshire, Hayley decided to pursue a private assessment through the NHS' Right To Choose Policy.

It enables GP's to refer you patients for specialist treatment, such as an ADHD or autism assessment, at an appropriate private healthcare provider.

The costs are covered by the NHS.

"Knowledge is power - and if they're empowered with the knowledge of what they can and can't do, and what's hard for them and how they can work through those challenges, that's only got to be a positive thing," she said.

But Sarah questioned the policy, saying it was "essentially kicking us to a clinic that we don't really know anything about."

In a statement, BOB ICB said: "As commissioners of this service for adult patients we are aware of the organisation's situation and are working with them to find a solution."

The care board added that demand for autism assesments in the UK had "significantly increased" in recent years.

"This rise is largely due to greater awareness and understanding of autism, leading more people to seek diagnoses," it added.

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