MORE than 30 years have passed yet tears still well up in Gavin Bestford’s eyes as he recalls the day he and his wife, Denise, were given news “like a dagger through our hearts”.

A neurological consultant had told them their three-year-old son, Alex, had “real problems” that would have a lifelong impact. “We drove home without saying a word. It was too painful – it still is,” admits Gavin.

But that pain inspired a personal mission – to make life better not just for Alex, but for other children and their families.

And that’s what Gavin has achieved through his decades of dedication as trustee and then chair of the North East Autism Society, where he describes his aim as to provide “the best services, delivered by the best people, to create the best lives possible.”

And, as the 73-year-old steps down as NEAS chair, he can look back with pride at how, under his leadership, the charity has undergone a huge growth in services, along with more than £30m of capital development in specialist facilities.

Gavin was born in Crook, County Durham, as a descendant of a long line of miners. Instead, he embarked on a 33-year career in local government accountancy, ending up as Deputy Director of Finance with Durham City Council before taking early retirement in 2000.

It was at a city council Christmas party that he met Denise, and they married in 1979. Their daughter, Laura, was born in 1983, and Alex followed in 1986.

By the time Alex was three-and-a-half, it was clear he was different. The word “autism” was never mentioned, but confirmation that he had significant issues came from the consultant at the Nuffield Centre, in Newcastle, when he was four.

After a series of meetings with various authorities, Gavin and Denise were advised to look to the Tyne and Wear Autistic Society - as NEAS was then called - for an assessment. Alex was finally diagnosed as autistic and offered a place at the charity's school.

The society had been founded in 1980 due to the fierce determination of a group of parents with autistic children. “They were desperate for schools, and for their kids to have what everyone else had,” explains Gavin. 

They took a lot of risks. If they hadn’t, the outlook for their children was institutional care, with precious little education.

The Society’s first school opened in Sunderland in 1980. Alex started when he was four-and-a-half and he’s been cared for by the charity ever since. Now 36, he lives in a supported living home.

His dad became a trustee in 2002 and took over as chair in 2005, the year the charity was renamed the North East Autism Society.

Back then, NEAS had just one school, an adult service, some care homes for adults and children, and employed around 250 people. Today, it has four schools, a college, skills centre, large social and vocational units, a multitude of high quality residential care homes and supported living homes, family outreach, employment services and short breaks lodges, and employs 1,200 staff.

“Everything I’ve ever done, I’ve thought about that first group of parents, wondering what they’d want us to do,” says Gavin.

“Their lesson was that you have to take risks to make things happen. The North-East’s a long way from Westminster and, if you wait for the Government to give you money, you’ll be waiting a long time.

There have been a lot of sleepless nights, but you can’t move forward unless you take risks – as long as you can demonstrate that what you’ve done isn’t reckless.

Soon after he took over as chair, he recruited John Phillipson as chief executive and he describes the appointment as “pivotal”.

“I told him I wanted to see big projects, and before long, I was begging him to slow down a bit!” he laughs.

As Gavin prepares to step down as chair, John is the first to salute him: “Gavin’s made a massive contribution, partly born out of being a parent, but because he’s naturally a passionate advocate on behalf of every service user and their families. He’s always got behind everything we’ve wanted to do,” says John.

One of Gavin’s most vivid memories is collecting Alex from the Sunderland school, to take him home for Christmas, 20 or so years ago. At the time, the school was open 50 weeks of the year, and Gavin saw a minibus full of children waiting outside.

“Where are they going?” he asked. The answer was that they were residential children with no family homes to go to. Instead, they were being taken to Scotland for respite care until the school reopened.

It horrified me because autistic children don’t take well to change. We had to do better, and within a couple of years, the service was open for the full 52 weeks.

Gavin, who also served for 12 years as a trustee of Durham Community Action, steps down as NEAS chair on April 30. He’ll be succeeded by recently retired GP, Rakesh Chopra, whose son is also looked after by NEAS.

"I’ll miss it like hell because it’s been my life, but I know it’s in safe hands," Gavin says. "As a country, we still have a long way to go, but I’ve visited a lot of places and I know that NEAS has services that are comparable to anywhere in the world.

“We take children and adults who’ve been failed by umpteen services, and it’s often us that stands between them having a quality of life or no life.”

Alex is just one example of the many beneficiaries. Gavin and Denise bring their son home every Sunday before he returns to his supported living home at New Warlands Farm.

“He eats us out of house and home and, when he goes back, he has a better social life than me with all the days out and activities that are organised for the residents,” laughs Gavin.

We know he’s in a safe place for the rest of his life, and that means the world, because all you ever want is the best for your children.

It may still be painful, but what makes Gavin Bestford’s contribution so special is that he didn’t just fight for his own son to have his best life – he fought for countless other families too.