Children and young people in Wales face ‘eye watering’ wait for ADHD and Autism assessments, says commissioner

A report published this week by the Children’s Commissioner for Wales has revealed that, despite some advancements, no region in the country has sufficiently addressed the needs of neurodivergent children and young people.

A significant number of children continue to experience long waiting times for Autism Spectrum Disorder (ASD) and Attention-Deficit/Hyperactivity Disorder (ADHD) assessments, with a lack of meaningful support during this period.

For those children who are referred to a neurodevelopmental team, the waiting times for assessment are “eye-watering”, the report states.

A Freedom of Information request published by the Welsh Government, covering autism assessment waiting times as at the end of February 2022, showed that there were a total of 9,014 children waiting for assessments across Wales.

Of these, 3,331 were patients waiting over one year. “We have been told of waits for several years” The Commissioner’s report says.

The report highlighted that children in distress, exhibiting extreme and harmful behaviours, often receive inadequate responses from their schools or are informed that no help is available.

Rocio Cifuentes the Children’s Commissioner for Wales said: “The lack of support for neurodivergent children and their families is something that has long been a concern for my office and my predecessor, and has been highlighted to me frequently by families and professionals alike since I started as Children’s Commissioner.”

“The waiting times for assessment for a neurodevelopmental condition are extremely long, and too often children and young people are offered little or no meaningful support while waiting for a diagnosis. Even achieving a referral can take months and even years of a child’s life.”

Ms Cifuentes has called for a “No Wrong Door” response that brings together various services to address a child’s needs, rather than expecting families to navigate complex systems involving different agencies.

The Commissioner has said the Welsh Government “must aim for a truly needs-led, not diagnosis-led approach for neurodivergent children.”

“All children should have their needs met, whether they have a formal diagnosis or not.”

“Families are often told they have come to the wrong place when looking for support, or that there is no support available.”

The Commissioner said: “Families having to wait at every point of access means their children are growing older without getting the appropriate support.”

“Wales needs a No Wrong Door approach to Neurodiversity.”

“Families would like services to work together to make sure that a child or young person has the appropriate assessment and support they need.”

The Welsh Government said: “To support joined-up working across government, in 2021 the Welsh Government established an integrated team across health and social care, with close links to other departments such as education.”

“We are expanding policy development to reflect the span of neurodiversity, building on the progress we have made in autism services.”

“A demand and capacity review of all neurodevelopmental services has been undertaken, and we are currently considering the recommendations made to improve support.”

“We want to ensure that services are collaborative, person-centred, and support the NEST/NYTH model and the No Wrong Door approach. The review report will be published this summer.”

Welsh Conservatives call for urgent action regarding autism and ADHD assessment waiting times.

Shadow Minister for Mental Health, James Evans MS, said:

“The wait children face for an autism or ADHD assessment can be extremely worrying for parents, with some parents not knowing what to do next.

“With more than 9,000 children currently waiting for an autism or ADHD assessment in Wales, it’s clear that this situation is not fair or acceptable for children and their loved ones.

“The Labour Government must take urgent action to address this waiting list, whilst ensuring children and their parents receive the support they deserve in an appropriate and timely manner.”