Autistic adults 'feel like we’re on trial' due to lengthy diagnosis waiting lists in Scotland

Having been recently diagnosed with autism spectrum disorder, Lucy Murphy declares simply: “It feels like we’re on trial.”

Murphy, now 32 and living in South Ayrshire, says her condition has been missed at various stages of her life, due to autism often presenting differently in women, and discounting school children who are able to cope with their symptoms in classrooms.

She says: “There’s a common thread with people in adulthood who have been missed as children. As much as the NHS needs to do something about these diagnoses, it needs to be caught early.

“There seems to be more and more people coming out and getting a diagnosis.”

Lucy Murphy, 32, from South Ayrshire, was only diagnosed with autism spectrum disorder recently

Murphy “always felt different”, and had speech issues, but made it through school and university, although with much difficulty due to a lack of support.

The process of being diagnosed was “gruelling”, according to Murphy, involving “90-minute sessions of tears”. However, the diagnosis has helped her understand her condition, although she has received little, if any, support from the NHS in South Ayrshire, where autism support is “all targeted at children”.

“Most people don’t think about being autistic,” she says. “It’s mostly folk who have an inkling, who go into the research to try and find out what’s going on with them, and we’re being made to justify ourselves.

“Waiting lists are piling up. There’s next to nothing for adults.”

Figures uncovered by the Scottish Liberal Democrats through Freedom of Information requests have revealed the longest wait for a neurodevelopmental diagnosis was 236 weeks – or 4.52 years – in NHS Ayrshire & Arran. Highland, Lanarkshire and Lothian also recorded waits of more than three years.

Of the health boards who responded to a request for the longest waits for an autism diagnosis, NHS Fife recorded the most extreme figure at 142 weeks.

Both NHS Ayrshire & Arran and NHS Highland reported the average wait time for a neurodevelopmental diagnosis was more than a year.

Only one health board (Borders) reported average waits for an autism diagnosis of less than six months.

Scottish Lib Dem leader Alex Cole-Hamilton said: “For parents and children who are waiting on a diagnosis to open the door to support services, these long waits will be depressingly familiar.

“The impact of waits of more than four years can reverberate for life. We owe it to our young people to ensure they get the support they need.

“Getting mental health support for young people is tricky enough at the best of times, but for children with autism or neurodevelopmental conditions, a diagnosis can be crucial in getting support in other aspects of their life. Making them wait an inordinate length of time is unacceptable.”

A Scottish Government spokesperson said: “The Scottish Government is committed to supporting autistic people and more than £3 million has been allocated for the remainder of this year to help NHS boards build professional capacity and support children and young people with neurodevelopmental support needs.

“The National Neurodevelopmental Standard for Children and Young People published in 2021 sets out the principles and standards of care expected. This makes clear that support should be put in place to meet the child or young person’s requirements when they need it, rather than be dependent on a formal diagnosis.”