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Autism in the blood Samantha Peters always assumed her father's
obsessive rituals were normal. But, she tells Olga Craig, when her own
two boys were diagnosed as autistic, the truth came out 'How does it make me feel?" asks John Peters, his face contorted in anguish. "Guilty. So very guilty. As though I have infected my grandsons with Aids. I feel deep, brooding, suicidal, soul-destroying guilt." His shoulders hunched, he rocks back and forth on the sofa, his gaze focused in the distance. His hands fidget and flap. He is agitated, and not simply because of his words, but because our conversation has veered into uncharted territory. John Peters, who three years ago, at 56, was diagnosed with Asperger's syndrome, a mild form of autism, cannot cope with the unpredictable, the unexpected. Just as he cannot cope with chips that have pointed ends, which must be squared off; just as he cannot cope with frowning, which was why he sellotaped his only child's forehead so that she could not grimace; just as he forced her mother to eat from the dustbin for disobedience. The silence in the living-room of the Peters' Newport home is shattered by the slap of the door thumping the wall as it is shoved open. Two small boys charge in: the larger dark, his face a thundercloud, his gaze averted so that he will not have to look at anyone; the other fair, dressed in a girl's strappy silk nightgown. Acis, eight, who is autistic, is in a fury because earlier in the day someone in the household mentioned going to McDonald's. Now that the trip is in doubt, Acis explodes in a rage. From the kitchen come the sounds of flailing fists and anguished shrieks. "He can keep this up for hours," Samantha says, "his language can be foul. No one will be able to convince him that the world will not end without a trip to McDonald's. As far as Acis is concerned, his will." Like John, his grandfather, he cannot abide disruption to his plans. Harry, six, his more placid brother, has Asperger's syndrome. Touch, indeed any physical contact, distresses him unless he is cajoled. So, too, does the feel of any material that is not soft, like silk. Then again, he will not wear anything that is not red or black. He is searching for his dark glasses, so that he, too, will not have to look at anyone directly. From an armchair in the corner of the room, Samantha Peters, the boys' mother, smiles in a loving but long-suffering maternal manner, first at John, her father, then at her sons. "Welcome to the house of fun," she says wryly. "Welcome to the Addams Family." Samantha distracts Harry with a feather boa and shoos Acis into the kitchen where the daily two-hour battle of wills over dinner will begin. Tonight, it is Jacqui, the boys' grandmother, who will be referee. "McDonald's would actually be so much easier," she says. "McDonald's is autism heaven. Nothing changes. The food is always exactly the same - the portions the same size." Bizarre bedlam best describes the world inhabited by the male members of the Peters family. It is a world in which the outbreak of World War III would elicit mild interest, but an ornament moved from its spot will result in tantrums, tears and unending angst. If anything, things are even more difficult for Samantha and Jacqui, the womenfolk. More than 30 years of life with John has meant that both, at times, struggle to differentiate between normal and odd behaviour. "The other day my Mum said to me: 'Sam, is such-and-such normal behaviour? I just can't remember,' " Samantha says. "When you live with three autistic people, each with their own strict routines, sometimes you forget what normal behaviour is." This is a highly intelligent family (John and both boys have IQs above 150 and Samantha holds degrees in law and English) in which autism, a genetic disorder in the development of the brain, reigns supreme. It is also a shocking example of how a man may reach 56 yet remain undiagnosed with a disorder that now affects one in a hundred people. What makes the Peters' story all the more astonishing is that, despite his wildly eccentric behaviour, John Peters' condition was only recognised when a specialist testing the boys turned to their mother and said: "And by the way, you will need to get help for your father, too." Finding help, however, is not easy. Specialists in Autism Disorder Spectrum (ADS) work only with children. John's sole medication is anti-depressants. They work up to a point. They have not, for example, prevented him from buying a dog collar, attaching it to a rope and trying to hang himself in the living-room. "But at least he now understands himself, why he is so different," Samantha says. "That, at least, is a relief." John is unlikely to be an isolated case. Autism was first diagnosed in this country in the early 1960s, but even now its tests are designed for young children. The result is that there are thousands of people in their fifties and older whose condition has never been recognised or treated. Instead, because of their bizarre and anti-social behaviour, they have spent a lifetime being labelled eccentric or treated as outcasts . The degree to which an individual is affected by ADS varies widely. Their obsessions differ enormously, but all have extreme difficulty with interaction. Often they must memorise appropriate responses to given situations to avoid behaving in what we deem an eccentric manner. Increasingly, they withdraw, the pain of striving to behave "normally" and failing having become so intense that isolation is preferable. John Peters is neither an ogre nor an unloving husband and father: he is, rather, a sensitive, caring man trapped in a world in which obsessions overwhelm and govern his ability to communicate. For Samantha, an only child, her early years were less bewildering than one might expect. "Don't forget, I had nothing to compare my home life with," she says, "no reason, as a child, to think my family differed from anyone else's. The truth is, my father, though there was not an iota of malicious intent, forced us to inhabit a bizarre, alien world." John Peters could not bear to see a frown; such a facial expression sent him into a screaming rage. "I don't have a single frown line, which is unusual for my age," Samantha, 36, explains, rubbing her smooth forehead. "That was because Dad taped it with sellotape. He put it on my fingertips, too, in case I dirtied the paintwork." The memories now come thick and fast. "Certain foods could be eaten only off certain plates - he would whip off the tablecloth and send the crockery flying if we got it wrong. If any piece of food touched a green vegetable it had to be thrown out. He had a bag in which he kept his cutlery and glasses - they were not to be touched. He would hold my jaw to ensure I chewed food twice, no less, no more. Liquids had to be swallowed in one gulp, not two. "He hoarded all sorts. Nothing could be thrown out. He could not bear physical contact, if someone brushed against him he went berserk. If we did not cut chips into oblongs there would be fists and rages. For everything there were rules, and if we disobeyed or questioned, there had to be punishment. "I once saw him forcing my mother to eat from the dustbin because she had disobeyed a rule. What is frightening now is that I recall accepting that Dad had to punish her. You see how his behaviour became my normality." With age and more social contact, Samantha quickly realised how different her family was. Neighbours labelled the family freaks, they became "the Addams Family". Samantha rebelled and left home. "That was the most difficult time for Mum," she says. "You must understand that my father loved us, loved us obsessively. He just cannot show it in the way that we expected or wanted. He would buy anything my mother wanted, showered her with gifts . . . what he could not give was affection in the normal manner." By her side John shuffles uncomfortably. For him, the memories are equally painful. "People think we have no feelings, no self-awareness," he says anxiously. "But I love my family desperately. It is just that for me, these small things take on the utmost importance. To have my routine, my order, changed is a major trauma. It overrides everything else. The perspective goes. Then I see I have hurt and upset them. So I try to win their love with things." Samantha smiles. She wants to tell a story. First, very gently, she explains that she is telling this anecdote as an example of her father's difficulty in understanding others' feelings rather than with any sense of resentment. When she was pregnant with Acis, she ran downstairs one morning in tears, telling her father she thought she was miscarrying because she was bleeding. "My father, engrossed in the television, replied: 'That reminds me, can we have gravy with dinner tonight?' " She grimaces. "You can imagine how that hurt . . . but Dad could not understand that." When Acis was born, Samantha (who is now separated from the boys' father) naturally had no reason to suspect that he would inherit a genetic disorder. He slept little and screamed constantly. He hated being cuddled. Faces terrified him. Although clearly bright, he did not interact with other children. Harry, by contrast, was placid, but he, too, could not interact, and both boys were disruptive in school. Slowly, like their grandfather, obsessions came to dominate their lives. "I shall never forget Harry's first day at school," Samantha says. "He would not wear the uniform. Either he would go wearing what he wanted or not at all. I ended up taking him to school dressed in a black vest, black underpants and red wellington boots. The other mothers looked at me as though I was mad, but what could I do? It was the only way to get him there. Some of them complained that they didn't want an autistic child in their child's class - as though the boys were infectious." In time the boys' eccentricities worsened. Although both attend mainstream school and are doing well academically, their behaviour remains disruptive and their lives are dominated by strict, unalterable routines. Acis will eat only toast, chips, sausage rolls and sausages - which must be from Asda. "He can tell the difference." He will drink milk, but no other liquids. Henry will eat fruit and vegetables as well as Acis's diet, but he will drink only cola, and that, too, must be from Asda. Each boy has his own special "coming home from school routine", and since they vary so much and must be adhered to, Samantha now collects Acis and her mother picks up Henry. Henry, who eventually agreed to wear his red and black uniform (which now means he will wear no other colour) must be given a bag of chips, a bottle of cola and his dark glasses the moment he leaves the school gates. Acis, who can now control his aggression in school, flies into a rage the second he leaves. "He takes a large bag filled with rubber gloves to school, in case he has to touch something he doesn't like, toys that he must be able to feel during the day, and all sorts of items he needs to be surrounded by - the other day he asked if he could have an oxygen cylinder. He generally throws the bag at me and screams. "He then runs home so that he can make sure the suitcase he keeps by his bed is safe. He is terrified the house will burn down and his belongings will perish. He is less worried about us perishing." As Samantha is talking her father answers a knock at the front door. When the caller asks if Samantha is in he replies, "Yes," then closes the door again. As far as he is concerned, he has answered, politely and truthfully, the caller's query. "You see," says Samantha. "For him, what has just happened is logical. And, in a way, I suppose it is." John does not return. Instead, he has retreated to his garden shed, where I join him. It is where he hoards belongings. Where his order reigns. Inside, he gazes at the orderly rows of files, the boxes of photographs, the paraphernalia of a lifetime. "The loneliness is a killer," he says sadly, fingering a phial filled with Samantha's baby hair. "But if you keep upsetting people by the way you are, then you withdraw. It is a lot easier to go away by yourself than to keep trying and failing." "People are often horrified to learn that Dad and the boys are all autistic," Samantha later says, "but there is one blessing. Often Dad is able to explain, in a way that they understand, that they are not stupid or bad, just that they are different . . . special. It helps their self-confidence and makes them feel much less isolated. I could not bring them up without him."
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