MORE than 500,000 people in Britain have autism. For many, life is a confusion of sounds, smells and sights. Some describe it as living in a mental bubble - away from everyone else. Parents desperately try to break through to their offspring, unable to accept that an apparently normal child is slowly withdrawing into a world of his or her own and taking little pleasure in hugs and ordinary human emotions.
Leo Kanner, an American doctor, was the first to recognise, in 1943, the classic symptoms of such "early infantile autism", though its history stretches back into ancient myths and stories of changelings. Until the Sixties, however, autism was seen as a relatively rare disorder. There remained a belief - a hangover from the psychoanalytical era - that "bad" parents were somehow to blame. Nowadays, it seems there is an "epidemic" of autism. Most people, apparently, know of someone who has it and teachers report more and more cases in their classrooms. Broader definitions and growing recognition help to explain the apparent rise in prevalence of a complex continuum of autistic conditions now classified as Autistic Spectrum Disorder. Yet, there is suspicion that the rise in ASD is not fully explained. Many parents are anxious about a possible link between the combined measles, mumps and rubella vaccine, and autism and bowel disease. One major question from parents and campaigning groups is whether the vaccines or other environmental influences could combine with an underlying genetic susceptibility to trigger ASD. For the National Autistic Society, which this year celebrates its 40th anniversary, public anxiety about MMR has helped to focus attention on the plight of those with autistic disorders and on such crucial issues as early diagnosis and planning the best support. The need has never been greater, says the society, which steps up an anniversary campaign on May 12 to increase awareness of the impact of autism. Dr Lorna Wing, consultant psychiatrist for the society's centre for social and communication disorders, and who has a grown-up daughter with autism, says: "We need, above all, to prevent parents being frustrated for years on end by their inability to get a proper diagnosis and help." Today, we start our guide to autism and talk to a mother about her struggle with medical and educational obduracy. What is autism? A lifelong developmental condition now called Autistic Spectrum Disorder. It affects the way people communicate, relate to others and how they behave. Rigid, repetitive behaviour, resistance to change and a lack of imagination are common symptoms. At one end are those so severely impaired that they may understand little and be unable to do anything for themselves. At the other are people with Asperger's syndrome, who tend to have fewer problems with language, although they may sound strangely formal or stilted. Those at the more able end of the spectrum usually have average or above-average intelligence. A few have flashes of brilliance, as displayed by Dustin Hoffman's character in Rain Man, despite extreme difficulty forming friendships or understanding other people's feelings. Interestingly, one researcher also thinks there is a group of people whom she calls "loners", who are really very bright Asperger's sufferers. Distinguishing between the variety of autistic disorders is not easy. Dr Wing notes: "What starts out as classic autism in children can evolve into being more like Asperger's." What worried parents say about their children Communication Does not respond to name. Cannot say what he or she wants. Language is delayed. Seems to hear at times, but not at others. Does not point or follow directions. Used to say a few words, but now doesn't. Social Doesn't smile socially. Prefers to play alone. Gets things for himself. Does things early. Has poor eye contact. "Tunes out" from parents and is not interested in other children. Behaviour Tantrums. Hyperactive and unco-operative. Doesn't know how to play with toys. Gets rigidly stuck on one toy. Lines things up. Oversensitive to certain textures or sounds. Has odd movement patterns - such as spinning. How early should children be diagnosed? Dr Wing has no hesitation. "As early as possible. Parents who have nerved themselves to consult their GP are sometimes told that it must be glue ear or that their child will grow out of it. Yet the strange two-year-old can all too swiftly become a disruptive, unteachable four-year-old." Doctors must listen to parents, says Dr Wing. "Parents know their child." And, she notes, to the trained observer, videos of babies often reveal early signs of autistic behaviour, suggesting that one day much earlier diagnosis, perhaps within the first few months, will be possible. But too many doctors still focus on physical symptoms - the lumps and bumps. "It is their training. Things are improving, but so often doctors look at the attractive kid in front of them and they are bewildered. The National Autistic Society runs five-day courses for health professionals, and we hope this will have an impact." Diagnosis involves careful questioning, language testing and evaluation. Even so, Dr Wing sometimes knows the answer straight off. "At the assessment, a child might rush through the door looking at no one and start lining up the fridge magnets." Her advice to worried parents is to insist on swift referral to a paediatrician, psychiatrist or psychologist with a known interest in autism. Absolute signs for referral include: If autism is suspected but not yet confirmed, Dr Wing advises parents to treat children as if it had been. "It is good advice with any child. Try to stay calm and organised with a timetable. Be very careful to convey exactly what you mean. Notice if the child is understanding and, if not, show them in simple, physical terms. Remember, children with ASD can understand what they see more than what they hear. "Don't push your affection on to them. But play tickling games. Most enjoy being tickled. After a bath, they might come and sit on your lap when warm and sleepy. Keep rules to a minimum, but be sure to keep to them." How common is autism? The first prevalence studies in the Sixties using Leo Kanner's definition of "classic" autism found a rate of five in 10,000 children. Since then, there have been at least 40 major prevalence studies of the wider Autistic Spectrum Disorder, including 10 by Dr Wing and her colleague Dr Judy Gould. In a recent review of autism research, the Medical Research Council concludes: "There appears to be fairly good agreement that autism spectrum disorders affect about 60 per 10,000 children under eight." Of these, 10 to 30 per 10,000 have narrowly defined autism. The MRC notes: "These estimates make ASD far more common than was generally recognised." The most recent study from Sweden adds children with an IQ of more than 70 to give a prevalence rate of 90 per 10,000 or almost one per cent. There are no equivalent figures for adults. Is the rise in autism 'real'? Dr Wing believes that most of the rise is explained by greater recognition and diagnosis. "Autistic disorder also exists among people with other mental disorders and now we include these. Autism can also co-exist with tuberous sclerosis [characterised by nodules in the brain], Down's syndrome and other conditions, even dyspraxia and dyslexia. "It really is not so pure and simple as once thought. Psychiatrists are beginning to look back: I can remember people with what might be termed chronic schizophrenia who were autistic." Dr Wing does not, however, exclude the possibility of a real increase in autism. "The question cannot be answered definitively." She would like to see new prevalence studies, designed to show if rates for particular sub-groups have changed. What does the future hold? Drugs such as Seroxat and modern anti-depressants help to relieve anxiety, which can be socially paralysing for some people with Asperger's. Many who are severely affected will require specialist help all their lives - some in residential schools and homes. Much depends on intellectual ability, says Dr Wing. "We find that if an especially able person resolves to pass for normal they will manage to fit in. But there is no way you can force them to. It is their decision: they usually start thinking, when they are adolescent, about whether they will have a job, be independent, get married, even. "Others do not give a damn; they are not the slightest bit concerned." Su Thomas, co-founder of Pace (Parents' Autism Campaign for Education), campaigns tirelessly for better services and schooling. Her son Elliot, seven, has autism. Callum, his twin (left), does not. On Wednesday, she will listen critically as MRC specialists explain their recent review of the prevalence rates on autism to MPs attending a meeting of the All Party Parliamentary Group on Autism. Su says: "This is a fast-moving time for ASD. In some areas, the rate of increase in prevalence seems phenomenal: a paediatrician told me of a rise in his borough over 15 years from one to 25 children a year. "Whether the rise is real or due to better diagnosis, there are still huge numbers of children who need help. 'The Government and education authorities must urgently investigate the size of the problem nationwide and plan ahead. The present 'postcode lottery' for specialist school places is appalling - there is a shortfall of many thousands."
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