Helen Cooper is a GP in Blyth where adults are waiting up to three years for an autism assessment on the NHS. The negative impact on them is clear.

“They’re really struggling,” she said. “It hangs over people. I’ve got patients who have been off sick from work for a long time because it’s really impacting on their mental health.

They feel completely at sea with it all and they don’t know where they’re at. That long wait has a huge and detrimental effect on everything.

So when school suggested her five-year-old son Sebastian might be autistic, Helen rang the Children and Young People’s Service (CYPS) to find out what the waiting list was like in her area, Newcastle.

It was between two and a half and three years, so the family decided to go down the route of a private diagnosis.

The private assessment cost just under £3000, and the family paid for additional post-diagnostic support including several visits to Sebastian’s school to help set up a workstation and timetable, and to the family home to advise on sleep and routines.

Helen said: “We thought a diagnosis would help his school and us access any specialist input he needed. Because we did have the money, it felt like we would free up a spot on the waiting list for someone else.

“His teacher had struggled to get his head round how Sebastian presented, so the diagnosis has been helpful for getting the right support and getting other people to understand him.”

Back at her practice, Helen makes a point of telling patients that she can refer them to a private partner under Right to Choose, which has shorter waiting lists than the NHS. However, the assessment is all online and some people don’t want to do that.

It’s a problem, because the waiting lists are growing all the time. “All of us have noticed a big jump post-Covid in the number of people asking for an adult referral,” she said.

See our story on waiting lists