Desperate measures: The lure of an autism cure
The Autism News | English
Green Our Vaccines protests over the perceived connection between heavy metals in vaccines and autism.
By Jim Giles | NewScientist
LEO MILIK is a success story. At age 2 he was diagnosed with autism. After his mother heard the condition could be linked to certain foods, she eliminated wheat and dairy products from his diet. Now six years later, Leo has only a mild form of the condition. He attends a mainstream school and doctors say that in a few years he could lose his diagnosis altogether.
There’s one wrinkle in this tale. The diet that appears to have turned Leo around has recently been tested in a randomised, placebo-controlled trial for the first time. The researchers reported last month that it provided no evidence the diet worked.
The diet is not the only unorthodox treatment around; a range of “biomedical” therapies that purport to treat the root causes of autism have gained popularity in recent years. These range from vitamins and antibiotics through to drugs supposed to remove heavy metals from the body, and even a hormone treatment that can delay puberty.
The autism “biomed” movement is well organised. An organisation called the Autism Research Institute, based in San Diego, California, lists the hundreds of doctors and therapists who provide these treatments. There are countless websites where parents swap advice; some members speak of trying out dozens of treatments, and spending many thousands of dollars over the years.
Some say biomed has helped their child, but others tell heart-rending tales of dashed hopes. None of these therapies has been shown to cure or even alleviate autism in good-quality trials. Some are very expensive, others are difficult and time-consuming. A few are even dangerous. This raises a question: why do so many parents of children with autism opt for unorthodox remedies, some of which are no better than snake oil?
Desperation is part of the answer. Autism is mysterious in origin, variable in manifestation, and lacks any known means of prevention or cure. And it has some unique characteristics that collectively tempt parents down the biomed route. The condition has also become the subject of several myths that encourage parents to throw science out of the window. “The evidence doesn’t come into it most of the time,” says Vanessa Green, a psychologist at Victoria University of Wellington in New Zealand.
Autism is a spectrum of conditions that cause problems with language, social interactions and imagination. Some infants seem to show autistic traits from a few months of age, while about a third develop more typically, but then regress some time between the ages of 1 and 3.
We still do not know what causes autism. The best guess is that most cases are the result of a genetic vulnerability acting in concert with factors in the womb, perhaps maternal infections. As treatment, all mainstream doctors can offer are speech and behavioural therapies. One common approach is a form of rote learning known as applied behavioural analysis, in which children are taught to perform simple actions for small rewards. A number of studies have shown that over several years, ABA improves speech and academic ability.
Out of options
Maria Milik, Leo’s mother, thinks behavioural therapies did help her son, but for her and many other parents, they are not enough. Faced with a paucity of medical help, many families feel they have no choice but to experiment with biomed. Milik started Leo on the diet after a nutritionist said that her son might be allergic to wheat and dairy products. “I thought she was crazy but I had run out of options and was getting nowhere with the mainstream medical community.”
A lack of medical help is not the only factor driving the explosion of biomed. Another is the recent emergence of several myths about the condition. Perhaps the best known centre on the claim that vaccines can trigger autism. In the UK, concern revolves around the triple vaccine for measles, mumps and rubella (MMR). Adherents claim that three vaccines in one shot overloads the immune system. Vaccine fears have a different focus in the US, where some groups claim that the mercury in thimerosal, a preservative in some vaccines, is responsible.
Many large epidemiological studies have shown children who received MMR or thimerosal are no more likely to be autistic than those who didn’t. Yet as with any conspiracy theory, the more evidence that emerges to disprove the idea, the more the goalposts shift and the theories morph into broader, vaguer claims. Some parents now reject the entire childhood immunisation schedule, claiming it is “too much, too young”. In the US there is a prominent anti-vaccine movement that is suspicious of many of the additives in shots; their rallying cry is a call to “green our vaccines”.
Implicitly linked with the vaccine myth in some people’s minds is the belief that autism rates are skyrocketing, and that the cause must therefore be rising levels of some environmental toxin. When the US news programme Today asked readers for their views on autism in an online poll last month, for example, one response option was labelled: “So many more cases, so many more vaccinations – it can’t just be coincidence.”
It’s true that the number of diagnoses of autism has increased dramatically in many western countries. Before the 1980s, autism was thought to affect around 1 in 2000 children in the US; now almost 1 in 100 children has a diagnosis of an autistic spectrum disorder.
But is this increase real? Perhaps not, because the range of conditions labelled as autism has broadened over the last 20 years. Doctors have also become much more aware of the condition. Many children once diagnosed with learning difficulties, say, are now considered to be on the autistic spectrum. Researchers say these factors have caused much of the increase. Although it cannot be ruled out that there has also been a rise in the underlying rate, the picture is murkier than suggested by headlines about an autism “epidemic”.
Still, these myths have an intuitive appeal, especially for one group in particular: families of children who have the regressive form of autism. As regression often occurs around the time of childhood vaccination, parents blame the shots, says Paul Law, a paediatrician at the Kennedy Krieger Institute in Baltimore, Maryland. “It’s a very frightening experience to go through,” he says. “It’s an experience that demands an explanation.”
Yet cases of regressive autism have been documented for about as long as autism has been recognised as a clinical entity. Anyway, just because an illness arises in childhood as opposed to being present from birth does not mean the cause must be something in their environment. Law points out that there are other genetic conditions whose symptoms arise only later in life – sometimes even in adulthood, such as Huntington’s disease. “Most genetic disorders are characterised by a period of normal development and then loss of function,” says Law.
Source: http://www.newscientist.com/article/mg20627661.300-desperate-measures-the-lure-of-an-autism-cure.html?full=true
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