It was a day that Phill Wills will never forget. After 158 weeks of making 520-mile train journeys from Cornwall to Birmingham and back again, he watched as his 15-year-old son, Josh, prepared to return home on 2 November last year.
“Three years we’d been going up and down [the country],” Wills tells me. “Suddenly I’m waking up and going to Josh’s unit – all of his things are boxed up and ready to go. And Josh knew . . . something big was about to happen.”
At the age of three, Josh was diagnosed with a severe form of autism. Affecting social interaction, communication and behaviour, autism is a spectrum disorder – it varies widely in how it affects individuals – and many of those with the condition need personalised support.
As a young boy, Josh would not respond to his name and he struggled to develop his speech. Then he started to hit himself. Self-inflicted injuries are common among those with autism – roughly 50 per cent hurt themselves. In Josh’s case, Wills tells me, initially the harm was manageable. His son enjoyed the outdoors and spending time with his family. He was a happy, tenacious boy. But the illness grew worse and the severity of his self-harm increased. After several incidents in 2012, he was admitted to the Royal Cornwall Hospital in Truro for three months, under heavy sedation.
Josh had been biting his tongue and lower lip. “He had the front third of his tongue amputated and he had lost a lot of his bottom lip,” his father recalls. “It was a horrendous time. We were told that his life was at risk from what he was doing to himself.”
Josh’s uncontrollable urge to hurt himself led doctors to equip him with a soft helmet of the kind used by amateur boxers. It was also decided that he should be moved to a specialist unit – and the closest one was in Birmingham.
A week after his 12th birthday, Josh boarded an ambulance for the trip there. Wills sat next to him. “I knew that we had to drive a mile out of Truro in Cornwall and, when you get a mile out, there’s a roundabout on the A30,” he says. “Josh’s mum and stepdad live off to the left. Birmingham was to the right. I said to everyone in the ambulance, ‘Just bear in mind that it doesn’t matter how heavily sedated he is. In a minute, he’s going to want to go left and there might be a bit of trouble.’” Moments later, the ambulance turned right – towards the support Josh needed, away from the environment he wanted. Despite being constrained by a seat belt, he lunged at Wills, headbutting him and cracking his father’s nose.
When he arrived at the unit, Josh was anxious and agitated. “Vocally, he’s not really able to communicate,” Wills tells me. “But the few things he was saying when he got there were ‘Mummy’, ‘Daddy’, ‘Gavin’ [his stepfather], ‘home’. He was trying to ask for anything to do with home. I felt like I was forcing him to go to some place he didn’t want to go. It was heartbreaking.”
The care that Josh received in Birmingham was excellent but for Wills the support wasn’t the issue. “It was always about the miles,” he says. Josh was expected to stay there for 12 weeks but that was extended when his condition failed to improve.
Wills made the train trip north on most Fridays, checking in to a hotel for the weekend. Though arduous, the journey allowed him to spend time with Josh doing what his son loved most, such as walking outdoors.
To raise awareness of the lack of locally accessible facilities for autistic patients, Wills set up a petition: “Please bring my son back home.” He felt he had nothing to lose. “It had been 18 months of Josh being away and it didn’t look like he would be back any time soon.” The petition attracted 10,000 signatures in two days. In four months, that grew to almost 250,000.
The petition caught the attention of the former care minister Norman Lamb MP, who has campaigned to move autistic and mental health patients away from hospitals and into community care. He was pivotal in bringing Josh home. The campaign led to the building of a care home for Josh close to the beach in Cornwall. Padded walls minimise the damage he can do to himself, while the on-site staff include occupational therapists and other specialists.
The support has been made possible by Spectrum, a provider of specialist care services for people with autism and learning disabilities. Wills tells me that the company paid for the renovation of the building to accommodate Josh’s needs and it looks after his education. On weekdays, Josh spends three hours at a nearby school for autistic children. “I’d like to think that this sort of care package can be looked at and studied and delivered across the country,” he says.
Back in Cornwall, Josh spends much more time with his family. He is happier and more comfortable in the familiar surroundings of his childhood. His return has been life-changing for Wills, too. “His new home is just down the road. But go back a year, and I’d be now – on a Friday afternoon – jumping on a train to Birmingham.”
You can learn more about Spectrum, the provider of care services you provided Josh and his family with help, at their website.
This article appears in the 04 Jan 2017 issue of the New Statesman, Divided Britain