Anjana Ahuja
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Here, in sunny northern England, is a bucolic panorama to warm the heart of the Prince of Wales. There are young lads playing football on the village green, and a fancy black car has stopped at a pedestrian crossing to allow a line of ducks to wend their way to the local pond. People stroll arm-in-arm towards the small parade of shops containing the post office, bank and convenience shop. The pretty thoroughfares bear quaint names such as Woodland View and Courtyard Mews.
A former stable block houses a dental clinic and doctor’s surgery. Across the cobbles lie a village hall, bistro and café, their windows filled with glorious floral arrangements.
But the tiny streets of Hesley, a village built in the grounds of a stately home near Doncaster, are curiously quiet. There are no conversations to eavesdrop on, no casual exchanges of gossip between retired residents. In fact, few inhabitants speak at all, beyond grunts, laughs and cries.
Hesley is a purpose-built, privately run community for young adults with severe autism who have been excreted from the school system at 16 and for whom a normal life, either with parents or on their own, is simply not an option.
Mostly in their twenties and thirties, these adults have, in addition to the communication problems associated with autism, profound learning difficulties and “challenging behaviours” that range from spitting to hitting out and a tendency to self-harm. Few can speak coherently. Some have eating problems; some are incontinent. Of the 68 residents, only one is thought to have a fighting chance of leading a “normal” life; holding down a job, having his own place, getting married, having children.
The other 67 will be here indefinitely, or for as long as their local authorities will agree to pay the £3,000 upwards per week it costs to keep them here. That pays mostly for the care; the 68 residents are tended by 650 staff. Each resident enjoys 24-hour care and attention, six-weekly progress reviews with carers, speech therapists, psychiatrists and psychologists, and has a tailored schedule that includes as much chaperoned contact with the outside world as can be managed. For some, it’s a weekly dance class at a nearby college; for others it’s shopping for the ingredients for a meal. Many residents attend outside educational courses, such as horticulture or pottery, which match their interests.
“We’d love to think that all of them could live independently in the community but realistically quite a large number of them won’t be able to,” says Sue Ekins, principal of Hesley Village and College, who calls her charges students. “For a lot of our students, we can see they will need a high level of support for most or even all of their lives.”
Many residents will be here until they die. And that makes Hesley an extraordinary microcosm of the ageing population; autism has been recognised only since the Sixties, which means that the first children diagnosed with it are just now hitting middle age. Ekins says: “Nobody knows enough about autism to know how it will affect someone in their sixties and seventies because it has not been recognised long enough as a condition for people to track that kind of progress.”
Most adults with autism are cared for by their parents, who are themselves ageing and who frequently lack support once their disabled children reach adulthood.
With an estimated half a million people with autism in the UK alone, and many likely to live to pensionable age, the National Autistic Society is urging policymakers to pay special heed to this forgotten subset of the ageing population. Tomorrow it launches the I Exist report, a dispiriting catalogue of statistics and facts about adults with autism. Sixty-three per cent do not receive the support they need; 92 per cent of parents are worried about their son or daughter’s future when they are no longer able to care for them.
The average twentysomething would find Hesley a bit of a des-res. As well as all the accoutrements of an affluent village – including a clothes shop and a beautician – there is a communal garden, Japanese garden, allotments, barbecue area, music suite and sensory room. The village hall hosts a weekly disco and birthday parties; the picturesque chapel, adjoining the stately home, hosts a monthly service.
The 40 acres of surrounding woodland include a football pitch and sports hall. A current building programme – which will allow Hesley to expand its intake to about 90 residents – will put up log cabins for parents and other visitors to stay in (family can visit at any time and most parents visit occasionally throughout the year).
Residents can participate as little or as fully as they wish. “This isn’t like being at school,” says Dave Bottomley, the bearded, chipper deputy principal. His comment punctures the assumption that intentional communities for disabled adults are little more than glorified sanatoriums.
The living accommodation for residents comprises generously sized flats, bungalows and shared houses with en suite bedrooms, all decorated in whites and creams and filled with fresh new furniture. The television, cutlery and cleaning chemicals are all under lock and key.
Anxiety and frustration, Bottomley explains, go hand in hand with autism because of the difficulty with expressing thoughts, needs and emotions, and sometimes the furniture suffers: “We get them from a supplier in Doncaster, so if doors get broken we don’t have to replace the whole thing. Residents lift them, turn them, tip them, bounce on them, damage them – people become anxious in different ways.
“Others try to hurt people around them, or themselves. We look at the reasons for that and try to put proper behaviours in their place.” One young man used to hit out when he wanted to exit a social situation; he was found to love gardening, and given an allotment. His vegetable garden, rather than his fists, now serves as an escape valve when life overwhelms him.
“While you and I know that this or that is going to happen, autistics can’t look into the future or learn from the past,” Bottomley explains, gently. “They live very much in the now. They can become anxious, for example, when carers change shifts. But the carers are trained to know what to do. “Perhaps we can take him for a walk. When he comes back, the new carer is there.
“Residents can speak to us but we have to look at the signs, for triggers [for undesirable behaviour]. Are they too hot, too cold? You have to be a detective and get to know people really well. It could be that they are unable to communicate that they are too hot and start stripping off, which could be construed as an inappropriate behaviour.”
During a brisk walk around the village, Bottomley gives a running commentary on the residents. “Good afternoon, Michael,” he yells to a young man in the garden behind a house. “You’re putting the washing out. Good man!” Then he turns to me and whispers: “That is wonderful. He wouldn’t have done that 12 months ago. To other people they may be insignificant little jumps but to us they are great leaps.”
I am also introduced to 22-year-old Adam: “This young man works in our shop and he can work the till, stack shelves, go to the cash and carry and bring all the stuff back.
“And because you were so good at that, Adam, you’ve got a job at Sainsbury’s. Isn’t that fantastic? He’s got a uniform, he has to look at the clock and get there on time. You’ve got to not be late, have you?”
“No,” replies Adam, who puts in one hour a week as a shelf-stacker.
I ask Adam, who is avoiding eye contact with me, what he likes best about his job. I think he says “health” but the carer accompanying him interprets for me. It’s “tills”.
Another resident, Mark, 30, is one of two Hesley postmen. He has a uniform, a postbag and a timesheet. He even gets paid a token wage (not the minimum wage).
Jane Bone, a carer who has worked with Mark for five years and communicates with him mostly in sign language, says: “You can’t believe the big difference that good staff and back-up can make. I know what Mark’s trying to say now, and unless you’re keyed into him you won’t understand.”
Which makes me wonder how Mark and Adam, who might have made gargantuan leaps in their personal development, would possibly survive outside the Hesley bubble of unconditional care, support and acceptance. As happy as you feel at the superior quality of their lives – and Hesley is an incredibly uplifting place to visit – you cannot help but dread the idea of these vulnerable young people being thrown back into the real world of exhausted parents and piecemeal social support. For Hesley approximates to a real village only in the same way a film set does; it has a central cast of quirky actors whose lives are necessarily choreographed by a vast crew of people behind the scenes.
Stepping off the film set – in its nine years of operation, Hesley has bid farewell to the odd resident – means that some returnees drift onwards without a script. Some move to slightly less care-intensive institutions; others end up back with their families. Some revert to the behaviours they shed while here, including harming themselves.
Bottomley lapses into diplomatic Hesley-speak: “Unfortunately, one chap had to go through a failing process [after he left] and had to come back to us. It took us a long time to build him back to where he was and that’s really sad.” Ekins, too, struggles to think of a success story.
Romance has yet to blossom at Hesley but, Bottomley says, “if our residents were able to form a relationship we would support that if it was the right thing to do.”
That assessment would be made if two residents started touching each other; sleeping together, he says, would be impossible because residents are watched by carers all the time, including during the night. A “best interests” meeting would take place with the couple, both sets of parents, carers and psychologists. Whether a relationship would be permitted to continue would depend on the outcome of that meeting.
That possibility seems unimaginable for most residents. Ekins later tells me of a particularly poignant conversation she had with one parent: “He told me, ‘It’s so sad to think I’ll never have grandchildren but I do manage to console myself that I’ll never lose my daughter to another man.’ ”

It’s worse for autistic adults
Tomorrow, the National Autistic Society launches the I Exist report highlighting the plight of adults with autism, revealing that: 61 per cent of adults with autism rely on their family financially 40 per cent live with their parents.
“We know that while services and support for children with autism are poor, the situation for adults is much worse,” says Benet Middleton at the NAS, says. “We regularly hear that support disappears once people are past school age, and that many adults with autism receive no support at all.
They are often isolated, unable to access services and dependent on their families for support. These problems can bring families to crisis point.”
National Autistic Society: www.nas.org.uk. Helpline: 0845 0704004
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