In search of a cure for autism

Parents spend thousands on therapies that claim to help autistic children live normal lives, but most of them are unproven. Now doctors aim to find out what really works
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Indy Lifestyle Online

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.

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 £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 £3,000 to a "verbal behaviour consultant", who taught Patrick sign language and then left without giving notice. Another £1,000 went on a workshop that would have "taught Patrick as though he was a robot". And £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. The initial task will be to provide doctors, and eventually parents, with a website that gives detailed information about the latest advances and methods of intervention, including claims that are being made about each therapy and how those claims stand up to scientific evaluation.

Parents are most keen to get an assessment of biomedical interventions, particularly diets and vitamin supplements - which are likely to be among the first candidates for evaluation. More tricky will be an assessment of the early intervention programmes, which appear to promise the greatest benefit and, at up to £40,000 a year per child, are by far the most expensive - not least, says Mills, because the wide autistic spectrum means that what works for one child will not necessarily help another.

What research there is, and almost none is independent, suggests that at least some children with autism can make massive strides forward. In 1987, the University of California Los Angeles psychologist, Ivar Lovaas, published the results of a (subsequently hugely successful) intensive early intervention programme, teaching cognitive skills to children under four years of age - reporting that 47 per cent of the children were successfully mainstreamed.

Since then, other early intervention programmes such as the Son-Rise programme, TEACCH and Growing Minds (which helped Tim) have become widely used on both sides of Atlantic. Beverley Armstrong has also found Growing Minds transformational - though she acknowledges that it takes up considerable time and money. "It's all about joining with the child to encourage him to relate to other people. You follow their lead, so that when he flaps his arms, you flap your arms."

Patrick is taught at home with a rota of up to four tutors at a time, with Beverley planning the programme, video taping lesson and regularly visiting the headquarters in the USA, "something I find essential to keep motivated". But it's worthwhile, she says - Patrick attends a mainstream playgroup, uses single words and has near-normal eye contact with people he meets. "He is still delayed developmentally but his progress has been astounding. He is as bright as a button and ready for mainstream primary school next year," she says. She is also trying to raise £7,000 to pay for a week's intensive training for Patrick in the US.

Another successful programme, PECS (Picture Exchange Communication System), which encourages children with autism to exploit their often highly developed visual senses, has helped Emily Spinks. Three months ago, she started producing animated stories that are already provoking interest in the art world. "Suddenly, there's this feeling: Em's got something. After all the work for such little reward, suddenly a door has opened," says her mother.

Yet there is also deep concern about the "umpteen complaints" that the NAS receives from parents who have invested heavily in their children's future and been disappointed. There's also recognition that the programmes are both very expensive and under-assessed, not least as regards their long-term impact.

"Take, for instance, the fact that at two weeks, a normally developing baby is aware of its mother's emotions. Yet that is something that will always remain a problem for someone with autism," says Ofer Golan, a research coordinator at Cambridge University's Autism Research Centre who uses the centre's Mind Reading programme (Jessica Kingsley Publishers) to help eight- to 14-year-old Asperger's children to develop an emotional language. "At a basic level, where children are learning about different emotions by rote, reinforced by rewards, the programme works quite well. But even with a group of high-achieving autistic children, the difficulty comes when they're encouraged to generalise what they've learnt to other situations. One of them asked me: "Well, now I can tell when someone is angry with me. So what do I do now?"

There is concern, says Richard Mills, that while children lose the symptoms of autism, and behave in ways that are more acceptable, enabling them to progress at school more easily, they remain autistic. "When they get to secondary school or university, where social skills are needed for survival, there can be problems."

Meanwhile, at Reading University, microbiologists have just got the go-ahead for new research, focusing - for the first time since the MMR débâcle - on the high incidence of gastro-intestinal problems in children with autism, with the possibility that probiotics, live microbiological food supplements that have been shown to prevent toxic bacteria from colonising the gut, may have a role in therapy.

In a previous study, professor Glenn Gibson at Reading's department of microbiology, has already shown that that, compared to normally developing children, those with autism are more likely to have a poisonous type of bacteria, clostridia, in their gut, as well as having a higher risk of suffering chronic constipation or diarrhoea. "It is a particularly nasty bug that can cause a dangerous gut disease in newborns," explains professor Gibson. "It also produces neurotoxins, which can affect the brain - which may explain the link with autism."

In the new study, a group of autistic children with high levels of the clostridia, will be given a probiotic drink that contains Lactobacillus plantarum, "good" bacteria that the team has already shown are able to keep the clostridia under control. At the same time, psychologists will monitor the children's use of language and social skills and compare them with another group of autistic children who will receive a placebo.

What's certain to emerge from this and the other new research programmes, is that there is no cure for autism. The new research programmes, however, represent a welcome change in clinical attitude to autism - that the existence of a wide autistic spectrum and the lack of understanding of its cause, doesn't mean parents should be left alone to decide how to provide support. As Geoffrey Maddell says: "Research into autism needs to be based on a wholehearted belief in the value of those on the spectrum and the hidden benefits they can bring to those around them. It must help them realise their potential."

The National Autistic Society helpline: 0845 0704004; Autism Intervention Research Trust: 0117 974 8400