When Tim was diagnosed with autism five years ago, his parents were told he would be unlikely to speak or make relationships. Now aged seven and doing well in mainstream primary school, he and his family are moving to a new town and a fresh start. His mother, Andrea, believes that only other people's memories of his autistic past will hamper his future as a normally developing child.
His advances have occurred as a result of working with an intensive educational intervention programme - paid for by his local educational authority but unproven as a clinical intervention. And in the field of autism therapy, it is not unique in this respect.
Of the hundreds of remedies and interventions on offer to the half-million people with autism, of whom 100,000 are children, virtually none has been subjected to the stringent scientific evaluation required throughout the rest of health care.
"Evidence-based practice has passed autism by," says Richard Mills, the research director at the National Autistic Society (NAS). "Only eight per cent of the research budget spent on the disorder is spent on interventions. As a result, there is no reliable guidance available to desperate parents. Doctors are just as much in the dark as parents and often less wise because they think they know all the answers."
Inevitably, parents turn to the internet for help and the pressure to make the right choices can be overwhelming. There are a dozen or more intensive educational programmes for young children, of the type that have helped Tim. There are flash cards and behavioural therapies, diets that restrict what the child eats or add expensive supplements, not to mention opportunities to swim with dolphins. Drugs are equally under- investigated. Seven out of 10 children with autism are taking prescription drugs, including ritalin, SSRIs, major tranquillisers and anti-psychotics, none of which has been tested for people with autism or adequately studied in children. "Most parents start by believing that the disorder can be cured and throw themselves into researching therapies," says Andrea Spinks, the mother of eight-year-old, severely autistic Emily. "The paediatrician who diagnosed Emily gave us no advice whatsoever. So every time you hear of something new, you get terrified that you're missing the one therapy that will make all the difference."
Such pressures can prove expensive. Patrick Armstrong's parents have spent pounds 45,000 in the two years since he was diagnosed with autism at the age of two - a substantial amount of which was not money well spent. Beverley Armstrong paid pounds 3,000 to a "verbal behaviour consultant", who taught Patrick sign language and then left without giving notice. Another pounds 1,000 went on a workshop that would have "taught Patrick as though he was a robot". And pounds 250 went on an hour's telephone consultation with a nutritionist "who basically told me to make sure he ate his vegetables".
At last, however, change is on the way. The Autism Intervention Research Trust was set up last month to fund research both to "halt the exploitation and the wasted time and money on inappropriate methods of treatment" and to find out what works.
"Good advice, based on impartial scientific evaluation, is very hard for parents and many professionals to find," the Trust's chairman, Geoffrey Maddell, said at its launch. "Yet without effective and timely intervention, the consequences for the individual and the family can be devastating" - implying what many parents believe that, never mind the cause of autism, far more can be done to improve the life skills of children who have to live with the disorder.
The Trust, which has the support of leading international academics and will draw funding from the Government and the research bodies, has already begun work by drawing up a list of priorities, based on a survey carried out among the NAS membership. …