Autism: Children in limbo waiting for assessments, says commissioner

Three-year-old Ralph lost all speech and stopped responding to his name two years ago

Two years since Ralph lost all speech, he is still waiting for a formal assessment for Autism Spectrum Disorder (ASD).

The three-year-old boy, from the Rhondda, is one of more than 9,000 children waiting for an autism or ADHD assessment in Wales.

The children's commissioner for Wales said lives were "on hold" and described waiting times as "eye-watering".

The Welsh government said it was working to address gaps in support.

Ralph's mum, Sacha, said a specialist nursery had been a lifeline while they waited for the assessment.

Four times a week, the family make a 70-minute round trip to ASD Rainbows in Mountain Ash, a charity which offers support to affected families.

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Sacha said she first noticed a change in Ralph when he was eighteen months old.

"He stopped responding to his name," she said.

"No eye contact. Wouldn't enter new places. Just completely lost his speech."

Sacha said she hoped Ralph would reach the front of the waiting list for an assessment by August.

She also said she hoped a formal diagnosis would help them to access more help in the long term.

"If they're in the right setting from the start then they'll thrive going forward," she said.

Ralph in the sensory room at ASD Rainbows

The Children's Commissioner for Wales said families faced a "confusing" and "draining" process to get help, along with "eye-watering" waiting times.

"We have a system that responds to diagnoses as opposed to individual needs," said commissioner Rocio Cifuentes.

"A diagnosis can be very difficult to obtain, and for others might never happen…. even though it's clear they have a wide range of needs which have a huge impact on them and their family. 

"Those children and their families can live in limbo, without the help they need. It is hugely damaging."

Of the 9,014 children on the waiting list in Wales, more than a third - 3,331 - have been waiting for over a year.

Ms Cifuentes said the government was making welcome reforms to the process but in her view there must be "an acceleration of the change" 

Helen, from Llantrisant in Rhondda Cynon Taf, said she was "terrified" when she realised both her young children could have ASD.

Like Sacha, Helen turned to ASD Rainbows which her three-year-old daughter Lucie attends three times a week.

Helen said Lucie is now "really starting to thrive".

"When you go through this as a parent you are traumatised, you are lost, you don't know where to turn and you don't know what to do," said Helen.

"It's ultimately a long, onerous fight to get the support that your children so desperately need - and the support that you as a family need, supporting that child".

Helen said her daughter Lucie is "really starting to thrive" since attending ASD Rainbows

The Welsh government said it had been listening to families and young people with neurodivergent conditions to help inform future changes.

"Our Neurodivergence Improvement Programme aims to address gaps in support for children and young people and improve pre and post diagnosis support," a spokesperson said.

There will also be increased support for children who do not meet the threshold for a formal diagnosis, the spokesperson said.

A 24-hour listening line is also being piloted from April which families will be able to call to discuss concerns and receive advice on where to turn for more help.