One in 100 American children has autism, higher than previously thought, according to a new federal survey of parents, reported in this week's Pediatrics. But parents of young children don't need to see those numbers to know how terrifying the threat of the disorder can be. We don't know what causes it, and there's no good treatment. All the more reason we need to figure out now what's causing autism and then develop treatments that really work. No one cares more than a parent about that; so why not involve them in that process?
That's just what the Interactive Autism Network is doing. Parents of children with autism from around the country collaborate in building what has become the largest online autism registry in the world. The IAN registry was launched by Baltimore's Kennedy Krieger Institute in 2007. By making use of the power of the Internet, it has registered 30,000 people from all 50 states. The database created by this volunteer effort is being used by autism researchers around the world and is also used to match families with individual studies they can join.
The more families that join such a database, the more accurate and useful the research that comes out of it is likely to be. "Eighty percent of studies in the U.S. never get completed because they never get enough subjects," says Paul Law, director of the IAN Project. "We're trying to overcome that problem by connecting families with researchers." Law's latest research, published in Archives of Pediatric and Adolescent Medicine, found that parents do a good job at describing a child's autism spectrum disorder. That's interesting, because one of the shortcomings of the new 1-in-100 number (from a separate study) is that the increase could be due to greater awareness of autism, better screening by doctors, and more inclusive survey questions. Here's the link for information on joining the IAN Project.
Grandparents can help, too; The Interactive Autism Network just launched a project aimed specifically at them. This first-ever survey is designed to bring grandparents' knowledge of their grandchildren into the research mix. Here's information on the grandparents' project, and here's a link to the grandparents of children with autism spectrum disorders survey.
One good thing has already come out of the IAN Project—277 sets of twins have joined, the world's largest registry of twins with autism. That's important, because twin studies are the gold standard for researching heredity in diseases. Identical twins are genetic carbon copies, making it easier to study similarities and differences, while fraternal twins are as genetically diverse as siblings who are not twins. Twins with autism have been studied for decades, but this large group of twins is already providing new insights:
- Autism has a strong genetic component, making it the most heritable psychiatric disorder. Law's latest study confirms that.
- The number of fraternal twins with autism is rising, making it likely that environmental factors are causing more cases. Genetics is less of a factor for causing autism in fraternal twin pairs, since they don't have identical genes.
- It's more than twice as common for both twins in a fraternal boy-boy pair to have autism than a pair of boy-girl twins.
The IAN Project won't help solve the pressing question of which, if any, environmental factors are causing autism; since participants volunteer themselves, it can't give a clear picture of how a single population might be affected by pollution or other factors. But it does give parents of children with autism—and their grandparents—a way to actively participate in trying to solve the mysteries of this baffling, often terrible disorder.
For more on the complexity of diagnosing, check out my interview with Roy Richard Grinker, author of the 2007 book Unstrange Minds: Remapping the World of Autism. When his daughter was diagnosed with autism in 1994, he says, the disorder was strange and rare. Now it's familiar and common. Changes in social attitudes have a lot to do with that, Grinker says. When he studied families with autism in South Korea, he found that they hid their children and kept them out of school, for fear that relatives wouldn't find spouses and that their apartments would lose value.