Charity helps children waiting years for autism diagnosis

An organisation set up to help families get autism and ADHD assessments for children on long NHS waiting lists has become a charity.

The Roxi Foundation in Swindon, Wiltshire, was started by a young woman's family after a difficult few years before she was eventually diagnosed with both autism and ADHD.

Roxi's dad, Matt Pound said: "I realised that if we're struggling that much, other families must be too."

A spokesperson for the local NHS integrated care board said it "understood the frustration" caused by long waiting times, adding that it was working to "improve access".

The Roxi Foundation takes applications and gives grants for private assessments – a diagnosis can then unlock further help from various services.

Julian's daughter Hannah had been on a waiting list for more than two years when the Roxi Foundation was mentioned to them.

Hannah had become non-communicative with her family and stopped going to school. "She became very withdrawn," Julian said.

The Roxi Foundation funded an assessment, after which Julian said the family "came back with a different child".

He said: "She has been more conversive with us than she's ever been in the last three years – and I believe partly it's because it's unlocked a diagnosis for her that she can now understand."

She was diagnosed with ADHD and autism.

Julian has now started fundraising for the foundation too.

Long NHS waiting lists for autism and ADHD assessments are reported to be a problem all over the country.

The Roxi Foundation has so far managed to fund assessments for three young people – a small number due to high costs of £3,900 in total.

The charity has had 19 enquiries, which would have cost more than £20,000 in total to support.

A number of fundraising events in 2024 raised £7,000 for the charity and it has a target of raising £20,000 in 2025.

Speaking about why he set up the charity, Mr Pound said: "I saw firsthand how difficult it was to get any kind of support. We were constantly met with resistance – from GP appointments where we weren't taken seriously to the long and frustrating wait for an assessment.

"That lack of support had a really significant impact on our daughter's mental health and her education."

Mr Pound said the charity also offers advice as "a lot of people, they're just at their wits end".

He said he wasn't "throwing mud" at the NHS, adding: "They do the best that they can with the resources that they've got."

A spokesperson for the NHS Bath and North East Somerset, Swindon and Wiltshire Integrated Care Board (BSWICB) said it was looking to make improvements including "a new integrated neurodevelopmental pathway", which "focuses on earlier intervention, needs-led assessments, and support beyond diagnosis".

The spokesperson said it was trying to improve waits by pointing families to support services and making them aware of their options under the NHS Right to Choose.

A diagnosis is not required for schools to implement reasonable adjustments, the spokesperson added.

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