Mummy, why’s my brain different to everyone else’s?
Riley, 8, is severely autistic and the demands he places on his loving family are relentless. But what’s so poignant is that he’s aware of his condition and already worried about his future
SHELLEY WHITEHOUSE lives in a state of constant hyper-vigilance, always alert to danger or disaster.
She worries that her children may be badly injured, or her home set alight or vandalised. And her concerns are justified.
Shelley’s eldest child, eight-year- old Riley, often puts at risk the lives of his three siblings. He has no sense of danger or self-preservation; no concept of his own power or strength.
‘Once, I turned my back for 30 seconds to fetch clean towels when the children were in the bath, and I heard splashing,’ recalls Shelley, 30, a pre-school teacher. ‘I called out: “Don’t make the bathroom into a swimming pool,” but when I got back, Riley was holding his sister Brooke’s head under the water. Her arms were flailing. She was gasping for breath.
‘I yelled at him to stop and wrenched his hands off her neck just in time. He said: “I was only teaching her to hold her breath underwater.” He could have drowned her.’
And the catalogue of narrowly averted catastrophes continues. ‘Once, Riley climbed on to the kitchen counter to reach some biscuits,’ says Shelley.
‘When I said he couldn’t have them, he grabbed a carving knife from the draining board and shouted: “If I can’t have them, I’ll throw this at you.”
‘I told him to put it down immediately or one of us could be dead. I managed to grab his wrist and take the knife from him. I had to explain: “Once you’re dead, you don’t come back. You’re not invincible.” ’
But Riley is only just beginning to grasp the fact that actions have consequences and recognise the effects of his reckless behaviour.
When Shelley caught him holding a lit match to the safety netting of their trampoline — with all four children sitting inside it — she showed him graphic pictures of burn victims.
Shelley says: ‘I had to try to get him to understand the danger of fire, to show him exactly what would happen to him and his brother and sisters if he started fires.’
Shelley’s partner Max adds: ‘ We adopt shock tactics. All the children have fallen down stairs because he has chased or pushed them. We’re constantly rationalising: “If you do that, they could break an arm, a leg, their neck. They could be killed.” ’
Shelley and Max are also parents to Brooke, six, Skyla, four, and 20-month- old Mikey, who suffers from a reflux disorder, is fed through a tube and often spends time in hospital. The demands on the adults’ time and attention are ceaseless.
Riley, however, is not a monster — though he does behave monstrously at times — and he is not wilfully delinquent. For his behaviour is the result of the autism with which he was diagnosed a year ago.
It accounts for his boisterousness, his attention-seeking, his outbursts of violence and frequent meltdowns. He also has a raft of other labels and conditions, from attention deficit hyperactivity disorder (ADHD) to learning difficulties and oppositional defiant disorder (hostile, defiant and disobedient behaviour).
ANOTHER condition, called sensory processing disorder, means that Riley’s brain has difficulty responding to information that comes through his senses.
‘He will cry if the seams of his socks aren’t aligned properly,’ says Shelley. ‘Sometimes, we can go through five pairs that don’t feel right before he’s happy to wear them.’
But he can also be sweet-natured and protective, kind and endearing.
‘He is a mass of contradictions,’ says his mum. ‘He’ll be the first to climb on the shed roof or to the top of a tree. Once, he broke his collarbone falling off a wardrobe. He’d climbed up it to get a pack of cards.
‘He doesn’t feel pain, either. The next day, with his arm in a sling, he was scaling the kitchen units.
‘But, in some ways, he’s mature about safety. He panics and is overprotective of his siblings. He worries that the girls might be bullied — he focuses on it obsessively.
‘If we go to the station, he’ll say: “Hold the pushchair in case it gets sucked under a train.”
‘If I go above level one in the car park, he’ll have a meltdown. He hates glass lifts, the noise of hand-dryers, and roller coasters.’
Max adds: ‘Yet he thinks he can fly and leap across ravines. And, although he throws punches at his sisters and kicks them in the face, he can also be caring.
‘When Mikey had to go into hospital, he stroked his head so gently. He was crying. One to one, he can be the most wonderful, comical little boy.
‘He has multiple personalities. Sometimes, he demands our constant, undivided attention. At others, he retreats to his bedroom and wants to be alone.’
THE family’s warm, but chaotic, home near St Albans, Hertfordshire, bears evidence of Riley’s volatility. Doors have been removed as he has kicked holes through them. A sardonic sign in the sitting room reads: ‘Remember: as far as anyone knows we are a nice, normal family.’
The Riley I meet bursts into the room after school, sweet-faced and charming, fizzing with energy and eager to chat about his day, from the roast lunch he ate in its entirety (‘except the fat bits on the meat’) to the sponge pudding he didn’t finish because he wanted to rush out and play with his friends.
There is little to distinguish him from other boys his age — his gelled hair and cheeky grin signal mischief — except that he wears the collar of his polo shirt tucked inside to stop his obsessive habit of chewing it and he grasps a small American football as if it were a priceless treasure. The ball is carried everywhere — he even takes it into the bath and to bed.
This compulsive attachment to one object was an early indication to Shelley that Riley had traits that set him apart. As she works with young children, she was alert to his differences. At first, she remembers, he seemed precociously advanced.
‘We’d go somewhere and he’d remember how to get back there from that single visit,’ she recalls. ‘And he spoke in complete sentences from 18 months. He was good at problem-solving, too: if he wanted to reach something, he’d build a tower and climb up it.’
He was also endlessly, exhaustingly, active: somersaulting off the sofa or hanging off it upside down while watching his favourite wildlife programmes on television. He would absorb information like a sponge, constantly reciting facts.
Shelley’s relationship with Riley’s father broke down when he was a baby but, when he was 16 months old, she met pub manager Max, who has raised her son with the same love and care he gives their other three children.
Yet Riley’s behaviour continued to tax and baffle them. It was, Shelley says, a ‘supreme relief’ when he was diagnosed, aged seven, with autism.
It meant there was a reason for his quirks, his flare-ups, his failure to make eye contact and his adherence to ritual. Importantly, there were also ways to help him.
But, although he now takes antipsychotic medication, there are still times when Riley tries his parents’ patience to its limits.
One day, Max caught Riley with his hands round Brooke’s neck. ‘ They were arguing because she’d gone
into his bedroom — his sanctuary — and riley had grabbed her round the throat,’ says Max.
‘I was so angry and scared that I shouted to shelley: “Keep your son away from my children.” It’s the first and only time I’ve said it — I make a huge effort not to treat riley differently from the others and, in my heart, he’s my son — but I felt he’d crossed a boundary and that shelley wasn’t doing enough to discipline him.’
However, conventional forms of chastisement do not work with riley. He doesn’t respond to sanctions, restraint or withdrawal of privileges.
The pressures on the family are immense and relentless. For the past 18 months, neither shelley nor Max has worked, as it is a fulltime job for both of them to look after the children.
‘I don’t like riley sometimes, but I never stop loving him,’ says shelley. and she fears for him, too. Her elder son is heart-breakingly self-aware, acutely conscious that his brain is differently wired from most people’s — and it causes him intense pain.
‘It makes me so sad,’ says shelley. ‘sometimes, he’ll say: “I’m an ugly, stupid boy,” and punch himself in the face and not seem to feel it.
‘He gets upset about his behaviour and sobs. He says: “Why do I have to have a brain like this?”
‘We’ve always told him he has a “special” brain. We’ve built a story round it and told him not to be so hard on himself. We’ve explained that he isn’t “bad”. His brain just works differently.’
But shelley worries about his future. although he attends a mainstream junior school now, she knows he will need to go to a secondary school that caters for his special needs. What will happen in the future?
she says: ‘I have really down days sometimes, thinking: “Is he going to cope? Where is his life leading? Will he ever have a relationship?”
‘My nan and granddad used to say: “He’ll grow out of it,” but, of course, he won’t. sometimes, he says he wishes he was dead — and that is the most painful thing for a mother to hear.’
Max adds: ‘He says he doesn’t know how to earn money or buy food and, even at his age, it worries him. sometimes, he cries and says: “What will I do when I’m older?” But we tell him we’ll always be here, that he can stay with us.’
ONE glimmer of hope buoys them. When shelley’s sister, Jade, brought her border collie, Keiko, to stay with the family for a week, riley was thrilled to be entrusted with the task of caring for the dog.
‘His job was to get Keiko’s food and water and he loved the procedure, the routine and the responsibility,’ recalls shelley.
‘He precisely weighed out the food and he liked the fact that the dog gave him full-on attention.
‘she loves chasing a ball — she never tires of it — and riley spent hours outside throwing the ball for her to catch. He loved that she’d sit when he asked her to and give him her paw. she slept on the floor in his bedroom and, all week, he didn’t have a meltdown. It was as if the whole house gave a sigh of relief.’
‘That’s what riley needs. a dog,’ shelley said to Max after Keiko had gone back home.
so she searched the internet and discovered autism Life dogs, a charity providing specially trained dogs for autistic people.
such a dog costs £8,500, beyond the slender means of the family, so they are raising money for one.
The dogs sense anxiety, hesitation, fear — all possible precursors to a meltdown — and signal before it happens. They are also wonderful companions.
at present, shelley and Max dare not let riley out of their sight. ‘He would run into the road chasing a ball without thinking about the traffic,’ says shelley. ‘and he wouldn’t realise the danger of getting into a car with a stranger.’
With a dog at his side, however, he could take the first small steps towards independence. ‘a dog wouldn’t just change riley’s life,’ says shelley. ‘It could save it, too.’