Mary and Steve Moen fought for years to get their son Max, now 10, the help he needed to deal with the behavioral and social problems he exhibited as a child with autism.
They went for numerous evaluations and sought out some of the best specialists in the field, enduring sometimes year-long waits for consultations. Their persistence paid off; Max attended a special autism program to help him function better socially and control his behavior better, and now he attends a mainstream school and performs well academically, behaviorally and socially.
Still, the underlying cause of Max's autism remains a mystery -- a situation his parents hope to change.
Moen shared her son's story in front of the Senate Environment and Public Works Children's Health subcommittee today. The subcommittee met to get a status report on research into the links between environmental factors and developmental disorders like autism and attention-deficit hyperactivity disorder.
"Our family is at a point now where I feel like I can look beyond our situation, and address some of the questions others were asking me when Max was first diagnosed. How did Max get autism? Why is autism increasing?" Moen testified before the committee. "There are many unanswered questions that can only be answered with more research."
Dr. Bruce Lanphear, adjunct professor at Cincinnati Children's Hospital Medical Center, testified to the committee that more research is needed on the role of the environment in the development of autism and other disabilities.
"Exposures to established environmental toxicants -- such as lead, tobacco, PCBs and mercury -- have consistently been linked with higher rates of intellectual impairment or behavioral problems, such as conduct disorder and ADHD," Lanphear testified.
Whether those same toxins have any link to autism is an area that needs further study, he said.
Other autism experts agree environmental impact is a missing piece of the autism puzzle.
"There's no really solid body of research that tells us there's something in the environment definitively linked to autism," said Dr. Stefani Hines, a pediatrician and assistant professor at Oakland University-William Beaumont School of Medicine. "There are many hypotheses that factors like vitamin deficiencies, mercury and glutein and casein in the diet are linked to autism, but there's no strong literature to support many of these hypotheses."
"There is a genetic component, and there are likely to be some environmental issues, but no one really knows what those are, and they're probably different for different kinds of autism," said Dr. Jeffrey Brosco, professor of clinical pediatrics at the University of Miami.
Hines said that a definitive association between environmental factors and autism could have tremendous therapeutic value.
"If you can identify things in the environment that cause autism, you're more likely to know how to pinpoint it and treat it," she said.
Brosco said he hopes the National Children's Study will provide a lot more insight into how the environment affects our health. The government-funded National Children's Study will follow about 100,000 pregnant women and their children and try to connect environmental factors to a variety of conditions, including autism.
While many in the autism community agree that research into possible causes of the disorder is vital to helping medical experts and families deal with the myriad complicated issues associated with it, others believe that time and money may be better spent looking into other aspects of autism.
Simone Tallini is one such person.
Her son is now 18, and was diagnosed with autism when he was four.
Like Mary Moen, the mother who testified on Capitol Hill today, Tallini says she fought for years to get her son the treatment he needed. His behavior ranged from self-injury to aggression against others.
She said one of the biggest obstacles to getting her son the help he needed was the lack of teachers and other school staff who didn't know how to deal with his behavior. That's a problem that she said is still very common.
"They're not prepared with the hands-on tools for dealing with children with autism. They can't handle the problem behaviors," she said.
She said she fully supports any research into what causes autism, but also wants there to be a focus on training educators and others to work with people with autism.
"I think the research is important, but I don't want to see one second, or one dollar, or one bit of resources get taken from helping the children with autism that we have."