Adults struggling with wait for autism diagnosis in Devon

Megan Thomas said without a diagnosis she was not going to be equipped for life

Some people in Devon thought to be autistic have been told by the NHS to expect a five-year wait for an assessment.

NHS Devon figures for April 2022 to February show the average time between referral and an appointment was about 18 months - the target is 13 weeks.

Megan Thomas, 20, said without a diagnosis she was not going to be equipped for life.

NHS in Devon apologised and said it was committed to improving the situation.

Ms Thomas, a student at the University of Exeter, said: "Five years, that's literally a quarter of my life I'll be waiting for an assessment, which I think is ridiculous.

"If I had like a broken knee and I needed a knee replacement I would not wait five years just to have an assessment on my knee."

She also said she was concerned when she entered the workplace in a couple of years, employers would not be legally obliged to make reasonable adjustments whilst she remained undiagnosed.

Ms Thomas has been waiting for an assessment since June 2022.

She said she was told by the NHS in June 2023 she was looking at a four-year wait for the initial consultation.

Jenny Sanders said the pressure on families and those waiting for a diagnosis took its toll on their mental health

Jenny Sanders' 25-year-old son Harry was told in August 2019 he would be waiting five years for the assessment.

She said: "It puts a huge amount of pressure on families to find the information that they need because there is no support in the meantime.

"When you're told you need an assessment and that assessment will be helpful for you to carry on with your life and then you're told we'll do it in five years' time that means five years of his life are irrelevant."

'Improve waiting times'

Mrs Sanders said she was lucky to have the support of about 20 other families in her small Devon village who were dealing with various neurodivergent issues.

An NHS spokesperson said: "A number of projects are under way to improve waiting times for neurodivergent children and young people in Devon.

"These include employing navigator key workers to support children and families waiting for a diagnosis, working with schools to make sure children's needs are met early, and making the pathway more efficient and easier to understand for families."

The Department of Health and Social Care said: "We know it's vital to have a timely diagnosis of autism.

"NHS England recently published a national framework and operational guidance to set out how children, young people and adults can receive a timely assessment, and we've made £4.2m available this year to improve services for autistic children and young people.

"This year, we are also updating the statutory guidance on autism to support the NHS and local authorities to deliver improved outcomes for autistic people."

Follow BBC News South West on Twitter, Facebook and Instagram. Send your story ideas to [e-mail].