It has been 38 years since Paul and Christine Shattock took the devastating decision to move their six-year-old son Jamie to a specialist residential school in Aberdeen, 250 miles from their Sunderland home.
But Paul still weeps when he recalls the moment.
“That was the worst day of my life, taking Jamie up there and leaving him,” he remembers.
“He stayed until he was about 13 and was happy there, although he would have been happier at home.
“But he was only sleeping four hours a night, he was hyperactive and to be honest we couldn’t cope.”
Aged just four, Jamie was the youngest child in the North of England to have been diagnosed with autism, at a time when there was much less understanding of the lifelong developmental disability.
The condition affects more than one in every 100 people in the way they communicate and relate to others and make sense of the world around them.
“There were signs early on. He used language but didn’t necessarily understand it,” says Paul.
“For example, one day he was watching his mum peeling an orange and I said ‘look what mummy is doing’.
“Thereafter he thought ‘look what mummy is doing’ meant he could have an orange.
“He also had funny little habits – he used to do a strange walk around the room we called ‘circuit training’. Odd behaviour.
“He wasn’t developing as he should and so we saw a psychologist who said he was just a slow developer. He went to an assessment centre aged three-and-a-half for nine months and we were assured he was not autistic because he was ‘too friendly and sociable’.”
It was only when Jamie was assessed by a protégé of the renowned autism specialist Dr Izzy Kolvin that his autism was diagnosed, back in 1974.
Paul at first refused to believe it, but said after reading psychiatrist Lorna Wing’s book Autistic Children: “It was as clear as the nose on my face what was wrong with him.”
Jamie at first attended the Maplewood special school in Sunderland, where Paul started to meet other parents of autism sufferers and discuss the lack of specialist educational provision.
He then attended an AGM of the Tyneside Society for Autistic Children and left the meeting having been elected its secretary.
He met parents Norman Howe, Gordon Croft, Bob Cavender and Fred Mitchinson and they enlisted the specialist support of Dr Kolvin and a Newcastle-based teacher of autistic children, Margaret Robson.
The group then embarked on an ambitious plan to raise the funds to launch their own school for children with autism related disorders.
“We spent four years fundraising,” he says. “Every working men’s club in Sunderland had social events, we approached leek clubs, pigeon fanciers’ associations, rotary clubs and round tables for funds, received Green Shield stamp collections...we tried everything.”
Around £70,000 was raised (more than £300,000 equivalent today) and a former Jewish day school in Thornhill Terrace, Sunderland, was purchased.
To keep costs down, much of the conversion work was carried out by the parents – Bob was a plumber and Fred a glazier – and young unemployed people on Government training schemes.
Thornhill Park School opened in 1980 with just two pupils – from Southend, Essex, and Clitheroe, Lancashire. It was the first specialist autism school in the country to offer a full residential service 52 weeks per year.
Within a year there were 12 children aged between five and 16 on its roll as local authorities began to properly fund places.
Towards the end of the decade, the need for dedicated facilities for autism sufferers once they were past school leaving age became increasingly apparent; many were housed in institutions like Prudhoe Hospital.
Taking out bank loans secured against their own homes, the parents leased a former vicarage in Seaham from Durham Aged Miners’ Association.
In July 1989 The Old Vicarage – the first residential facility in the country for adults with autism – opened and Communities for Autistic People, which later became Education and Services for People with Autism (ESPA), was born.
Demand quickly outstripped capacity and within a year a second college premises, Orchard House, was opened in another former vicarage in Seaham, with a third – Garden Lodge – built in its grounds.
Led by dynamic first chief executive Christine Smith, ESPA continued to grow, next purchasing former Jesmond care home Ashleigh House from Newcastle City Council – now Ashleigh College – in the early 1990s.
Today, ESPA is a £13m turnover registered charity with 525 staff. At its college are 90 students aged from 16 to 24.
It offers full and part-time day and residential places, and pre-vocational training programmes designed to prepare students for future employment and independent living.
Other services include ESPA Agency, which offers support at home to people with autism spectrum conditions across the North East.
Retired Sunderland University pharmacy lecturer and former professional wrestler Paul, 69, remains chairman of ESPA’s board and travels the world in his ambassadorial role as President of the World Autism Organisation.
The Kent-born academic has also spent many years researching the impact of diet and environmental factors on people with autism.
Despite government cuts to adult services funding creating a difficult financial climate, ESPA is pressing ahead with an ambitious investment programme including a £1m extension and refurbishment of its South Hill campus in Ashbrooke, which will create state-of-the-art real work environments including a working café and art gallery.
Another new facility is a residential centre at Beechwood, Sunderland, with eight apartments enabling independent living alongside a central staff space.
This month a series of events are being held to celebrate the 25th anniversary of the opening of the charity’s first adult facility.
Looking back, Paul has a great sense of pride at what a group of parents of children with autism, supported by medical professionals and a very generous local community, achieved all those years ago. An estimated 1,400 students have been through the doors since.
“You never think you have done it, have got there. But I am very proud of our staff and our students, who have a great bond with each other,” he says now.
“The students look at it as the happiest time of their lives and I only wish we could help them more after their time here.”
Jamie, now 43, lives at a farm near Dublin run by the Irish Society for Autism and sees his parents several times a year – Paul visits him in Ireland and also brings Jamie back to the North East for short stays.
But Paul, of High Barnes, Sunderland, who is divorced from Sunderland City Councillor Christine Shattock (they also have a daughter Rachel, 40) and has since remarried, still harbours regrets about Jamie’s childhood.
“I would have given my right hand to have our son stay at home when he was young,” Paul says. “But unlike now, suitable educational facilities were just not available back then.
“It is reassuring to know he is happy living at the farm now and we can still see him regularly.”