HERE is the uncomfortable truth about autism: we know little about the many causes of this spectrum of disorders, nor how to treat them in an effective way. Feeling abandoned by mainstream medicine, some parents are driven to try unorthodox 鈥渃ures鈥� (see 鈥淭he lure of a cure for autism鈥�). This is dangerous territory.
Most likely, these treatments do nothing. Some may help, though without proper trials we can鈥檛 be sure. Some can also have dangerous side effects.
While behavioural therapies don鈥檛 eliminate autism, they have at least been properly tested and are known to lessen symptoms. What is clear is that some parents will stop at nothing in the quest to find a cure for their children, even if there is no science behind their attempts.
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鈥淧arents won鈥檛 stop trying to treat their children, even if no science lies behind their attempts鈥�
What鈥檚 to be done? Parents who are using unorthodox treatments are conducting an enormous uncontrolled experiment on their children. It鈥檚 not to be encouraged, but might it be possible to conduct a damage limitation exercise? Perhaps salvage something for science?
If parents were to record the doses and impacts of the treatments they are trying in a central database, the data would admittedly not be solid enough to prove that a treatment works. But it would at the very least draw attention to the dangerous ones, maybe even tease out any promising ones.
The (IAN) in Baltimore, Maryland, runs such a database. Although the largest of its kind, only around 5 per cent of US families that have children with autism are signed up. A hike in the network鈥檚 annual funding 鈥� just $2 million at present 鈥� would help it recruit more families and make better use of its data.
This can offer a way out of the dilemma. On the one side are mainstream doctors who may have little to offer parents desperate for an effective treatment. On the other are those who say that unproven treatments can 鈥渞everse鈥� autism. It鈥檚 hardly surprising that parents may be misled by the hype of the latter. By joining the network, it鈥檚 just possible that a useful treatment may emerge amid the slew of unorthodox therapies. If it is there, we need to find it.
