Wales ‘desperately needs’ a transformation in how children and young people who are neurodivergent are supported, according to a new report by the Children’s Commissioner for Wales.
Neurodevelopmental conditions include conditions like Autism and ADHD. The Commissioner is calling for support for children and young people who are waiting for a diagnosis as well as those who have been diagnosed with a neurodevelopmental condition.
The report focuses on individual stories of children and their families trying to reach out for help.
On trying to get a diagnosis for her child, one mother said:
“I’m not doing this to label him. I just want to know how to make him happy. One piece of paper will change it all; people will see him from a different view. He won’t just be the naughty child, they will think this is happening because of something else.”
Rocio Cifuentes MBE said that many families across Wales face long waiting times for assessments and have to navigate a complex system, often receiving little help along the way.
“It’s really common for families to come to my office at their wits’ end because of the situation they’re in. When a parent suspects their child has a neurodevelopmental condition like autism, that in itself can be an emotional and daunting experience. It’s a time when they need support, not barriers. But many of them have to wait an age for any support, and battling to get it is often a confusing, draining, and prolonged process. At the centre of it is a child who has a right to flourish and reach their full potential.
“We need a system that fully responds to a child’s individual needs, and responds as soon as possible. Right now, we have a system that responds to diagnoses as opposed to individual needs. A diagnosis can be very difficult to obtain, and for others might never happen. Some children will never meet the threshold for a particular medical diagnosis, 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. All children are unique, and they have a right to a level of care and support that meets their individual needs.
“I know that the Welsh Government recognises the issue, and are working to make improvements. But whilst we wait for these improvements to be implemented, I wanted to highlight the huge difficulties children and families across Wales are facing and the importance and urgency of reform in this area. The government should use the experiences detailed in my report to guide them, because this is what children and families are saying and living.’
Dr Mair Edwards, a Clinical Psychologist of over twenty years, echoed the Children’s Commissioner’s concerns:
“Without doubt, children and young people have suffered long term harm because of the unreasonable delay before their needs are officially recognised. How can it be acceptable for a child to wait years for an assessment of their needs when research shows clearly that appropriate support and intervention in the early years is so important? Even after diagnosis there is a shortage of suitable services to support and assist children and their families. It would surely be far mor effective and efficient – and certainly more morally sound – to assess a child’s needs as quickly as possible, so that children and their families can be supported and provided for in an appropriate manner, reducing the trauma of waiting and waiting and waiting.”
Joanne Morris is the co-founder of a charity based in Mountain Ash providing help for pre-school aged children with autism or suspected autism, called ASD Rainbows.
“We are so unique in the service we provide. Parents are reaching out, they are desperate when they come to us. And if we weren’t here, I really wouldn’t like to think where the parents would be. Children are waiting up to three years for a diagnosis and in the meantime, there is no support available.”
The Children’s Commissioner added:
“The Government has committed to an improvement plan and I welcome the three main areas of this work. I’m calling on the Government to aim for a truly needs-led not diagnosis-led approach for neurodivergent children within this plan. I hope this book of experiences will shine a light on why this approach is necessary, so that we can ensure children who need support will have their needs met without obstacles and without delay. I will continue to scrutinise the Welsh Government’s work in this area closely.”