Paul Corless saved up for a private assessment for his daughter Ava after she was discharged from Child and Adolescent Mental Health Services (CAMHS) who said there wasn’t enough evidence for an autism diagnosis.

Paul, from Guisborough, got hold of Ava’s medical records and took them to a private company for a fuller assessment that took her cognitive and sensory profile into account.

He said: “You shouldn’t have to go down that route. But when she was discharged we were angry and upset.

“I’m on benefits as I’m a full-time carer for my wife, so we had to scrimp and save every penny. You do whatever you have to for your child.”

The private company produced a 40-page report diagnosing Ava with autism, but when he took it to the GP he was told it would have to be endorsed by CAMHS. That took another 18 months.

Paul took an Open University course in autism so he could understand the system better and advocate for Ava. He said:

I’m effectively a carer, a parent, a medical professional and a solicitor. My time would be better spent just being a parent and carer.

His daughter is now nine and attends Mackenzie Thorpe Centre school in South Bank, Middlesbrough, run by the North East Autism Society. “She’s absolutely fantastic now she’s got an EHCP in place and they understand her at school,” he said. “They have brought her on leaps and bounds.”

However, one of Paul's other two daughters is waiting for an ADHD diagnosis on the NHS which they have been told will take around three years. 

They're sticking it out because a diagnosis gives not only help and support but peace of mind through understanding yourself better and knowing how to cope when you feel overwhelmed, Paul said.

“When people don’t have a diagnosis, they go through life wondering why they are like this, and feeling everything is closing in on them. Then they learn to mask,” Paul said. “Things need to change for the better so people get the support they are entitled to.”

See our story on waiting lists