Getting him up, dressed and active can take hours. Like most autistic people, he has many fixations and rituals. One of his current obsessions is that before going downstairs in the morning - and before eating, before going out and before going to bed at night - he has to spend half an hour in the lavatory. Another is that he must always have five balls with him - two footballs and three smaller ones. They must all come with him when, an hour after waking, he finally goes downstairs. Any effort to speed him up can lead to a tantrum - not something to be taken lightly in a 16-year-old boy.
As well as the five balls, Mitchell has to have a small photograph album with him at all times. Clutching the balls and trying to keep hold of the photo album, he pauses at the top of the stairs and says in a deep, flat voice, "Mummy, Mummy." Anne asks him what he wants several times, with infinite patience, speaking loudly, as though to a deaf person. He says, "Black hole." She says they will go to the Black Hole at Alton Towers on his next birthday. The Black Hole, of which there is a snapshot in his album, is a roller-coaster ride. It is another of the handful of things he ever mentions. Sometimes he mentions it countless times in a day. Once downstairs (though still in his pyjamas), he sits on his chair in the kitchen, places his footballs carefully by his feet, his smaller bouncy balls round his plate, his album in front of him and his juice carton to one side of his plate. Having established order, he begins to eat. Intermittently, he straightens out the album or the ketchup bottle. When he has finished, he goes to the living-room. Anne suggests that he should get dressed; he looks at her blankly and goes on bouncing his tennis ball. She repeats the suggestion many times for the next hour or so. He takes no notice.
He is never still. At one point, he gets up and makes a sudden dash for the hallway, wheels round and comes back - something he does repeatedly before settling beside his mother and bouncing his ball again. He often fiddles with the video; he can perform any task relating to the video no matter how complicated. He finds a sequence in a tape and replays it hundreds of times. His current replay obsession is the bit in ET in which ET is found by the little boy's mother in his bedroom. (Anne attaches no significance to this; a week ago it was Star Wars, and before that Superman.) He sometimes channel surfs for two hours at a stretch, asking Anne all the while about the Black Hole. It drives her crazy, but she remains patient. Every day, she takes him out. She rarely gets him out of the house before 3pm; any attempt to hurry him can bring on screaming and tantrums.
Sometimes she takes him shopping. It's a nerve-racking business because he likes to pick up bottles and throw them in the air. People rarely offer to help, she says: they stare and, when she looks at them, look away. But then, she admits, at first glance he seems just the same as any other 16-year-old: awkward, ungainly, just beginning to discover his identity and his sexuality. As Anne points out, though, he would never be able to develop his sexuality in relation to anyone else: "Autistic people don't form relationships. It's as if they are oblivious."
When Mitchell was seven, his grandparents died. He didn't notice their absence. When his cat died shortly afterwards, however, he screamed and cried all night. His parents told him that the cat had gone to heaven, up in the sky, and he ran into the garden screaming at the sky. That night, as on many occasions, they called out the doctor, who gave him sleeping drugs. They made no difference: he seems to be able to override them.
He often stays awake at night, eventually going to sleep around 4am. Sometimes he screams and runs up and down the living-room; sometimes he bounces a ball; sometimes he lies awake. Mitchell sleeps in his parents' bed. He hasn't slept in his own bed since he was three-and-a-half.
IT WAS THEN, more than 12 years ago, that the trouble started. According to Anne, Mitchell changed overnight. He had been a calm, loving toddler, she says, slow to speak but otherwise much like any other child; then one morning he woke up screaming, beyond reason or communication. Her husband, John, has a different account: he says he always felt that something wasn't quite right. Both are agreed that, from that point on, nothing was right again.
A large part of the next few years was spent in frustrating, distressing encounters with the medical profession. "That day the screaming began we took Mitchell to the doctor," says Anne, "but he didn't know what was wrong. Mitchell didn't stop screaming for eight months. He regressed, and then he became mute."
The doctor referred the Murphys to a specialist at a hospital near their home in Winchfield, Hampshire. He recommended that they shut their child up in a room and leave him to scream. Despite what, with hindsight, were obvious symptoms of autism, nobody suggested that Mitchell might be autistic.
Mitchell began to ignore his parents. He would grunt and yell, break things and refuse to let them hold him or even touch him - all typical signs of autism. "We knew something was desperately wrong but nobody helped. There were times when John and I would snap and one of us would hit Mitchell. Mitchell would scream all night. No matter how sane you are, you can only take so much." In spite of everything, they are still together.
When Mitchell was four, the same specialist diagnosed him as having severe comprehension problems and recommended a special school where the children boarded. "It was a good school," Anne says, "but I couldn't send my little boy away - he had never been parted from me. I wanted him to go to a normal school."
The education authority supplied Mitchell with a non-teaching assistant so that he could go to the local infants' school. He did well there: "The other kids loved him and the little girls were especially protective of him." He learnt to read and write, his speech improved, and he began to be loving towards his parents again. For a while, there was a glimmer of hope. Then, when he was six, he developed an obsession with drawing houses - for hours on end - and repeatedly washing his hands. "He stopped looking at me," says Anne, "he started going berserk again. He was violent; he stopped speaking."
They went back to the specialist, who said that Mitchell would have to go to the Maudsley in London as a psychiatric in-patient. "It was," Anne says, "out of the question as far as we were concerned." Instead, they took Mitchell to a psychotherapist, but weeks of treatment brought no improvement. Then Anne stumbled across an article about autism. She got in touch with the National Autistic Society (NAS), which sent her literature. "I was reading about my son. All these experts had not told me a fraction of what I now learnt. I was so angry. Doctors, psychiatrists, psychologists, paediatricians - none of them had told me." Within a week, an NAS welfare officer visited the Murphys and confirmed that Mitchell was autistic.
The moment of the diagnosis, Anne recalls, "was like a bereavement. I cried for 18 months. I was relieved to have a label at last, but knowing that we'd never have a normal child - because autism is incurable - was like a bereavement. That little boy he had been would never come back."
Mitchell continued to regress. He screamed, he broke things, he bashed his head on the wall or the floor and threw himself at the windows. The only sounds he made were grunts or screams. The Murphys had no social life; there was just one friend who came round regularly, with her daughter. "It was like a prison sentence. We could never leave Mitchell alone for a moment."
Now that they knew what the problem was, however, they were able to send Mitchell to a special school for autistic children - Hope Lodge in Southampton, the only such school in their area. The NAS referred him; the education authority, once Anne had got past one particularly unhelpful official, provided the funding. At the age of eight, Mitchell went to Hope Lodge as a weekly boarder. "The day we left him there, my heart broke. We crept away but they told us later that he stood by the gate and screamed. In the first week he asked for his mummy, which is very unusual for an autistic."
Mitchell came home at weekends, but he had become more violent and uncontrollable, often turning that violence against himself and biting his wrists, on which there are still scars. "We often had no choice but to take it in turns to hold him down. It got so bad that we had to take him to respite care in a place run by nuns in Aldershot at weekends. We just couldn't cope. I felt such a failure as a parent, and so guilty. I live with guilt. I know none of this is my fault and that I've done nothing wrong, but for some reason I still feel guilty all the time."
When he was nine, Mitchell was moved to another NAS school, Dedisham School in Horsham, as a termly boarder. He came home for holidays and his parents visited him regularly during term-time. He improved; there were spells during which he would talk. Then that school closed down, and he was transferred to the Sybil Elgar school in London, also run by the NAS, where he is now a termly boarder.
Things work out reasonably well these days, especially now that - after a long battle with the social services - a social worker visits for two hours a week to provide respite care during the holidays. But Anne is worried about the future. What would happen, she wonders, if she or John were to die? What will happen in two-and-a-half years' time, when Mitchell reaches 19 and has to leave Sybil Elgar? Anne has already found a home to which she would like him to go: Ashley Lodge, a mile from Winchfield, a small unit, owned by the parents of a learning disabled child, where he could stay for life.
But Ashley Lodge has a long waiting list, and Hampshire Social Services will not begin a provisional assessment of either the school or Mitchell's suitability for it for at least another year. "His needs may change," said a spokesman. But there is a chronic shortage of places at schools for people with special needs; by the time the assessments are completed, a place that might have been provisionally reserved for Mitchell at Ashley Lodge will almost certainly have gone.
AS WE TALK, Mitchell sits on the floor beside his mother. He begins to seem agitated. She suspects that he realises that we are talking about school. "He used to cry when we took him back to school, but now he accepts it, although his eyes well with tears, which is somehow worse. I can never get used to it." She leans over to ruffle his hair. He smooths it back down and picks up a ball, which he begins to bounce against her foot.
Despite his deep dependence on his mother, Mitchell ignores her most of the time, and if she goes to hug him he seizes up with rictus-like tension. His is a private, impenetrable world. "He's frightened," Anne says, "and order and familiarity give him some measure of calm. Sometimes he smiles and laughs, often for no apparent reason."
A moment later, Benny, a vast, tortoiseshell cat, stalks into the room and sits on Anne's lap. She takes Mitchell's hand to stroke the cat, and suddenly his face lights up. He likes to provoke it into biting him, but he also shows it affection, laying his cheek against the fur. "I think he prefers animals to humans because they don't challenge him with speech," says Anne.
Briefly, Mitchell seems calm, happy even. Such appearances are deceptive. Only a few months ago, he broke a tooth while biting a radiator in a tantrum.
Soon it will be time to begin again the long process of trying to put him to bed - his parents' bed, that is. "We can get him into his own bed, but he won't stay. There is a good side to this - it's the only time he'll let us cuddle him. Usually one of us goes into his bed so we can get some sleep."
Anne Murphy has been through heartbreak, rage, exhaustion and torment over Mitchell, but she still laughs a great deal, and she accepts her lot. "I loved him so passionately as a baby that I never wanted to have a second child - I couldn't imagine loving two children that much. That's never changed. Sometimes it's love/hate, because there is so much grief, but in a way that strengthens my love. I love him as passionately as I ever did. I would never abandon him and would fight for him with my last breath."
! The National Autistic Society is at 276 Willesden Lane, London NW2 5RB (tel: 0181 451 1114).Reuse content