Meet Sunday Stillwell of Owings Mills, Md. Her two sons, Sam, 7, and Noah, 5, are autistic.
What would it feel like to be unable to find the words to verbalize what you wanted to say to someone? Or to be unable to understand expressions like “raining cats and dogs” because your mind works concretely and you interpret everything literally? Or to be constantly on sensory overload in what others see as normal environments?
This is just a snapshot of what it can be like to be autistic. Despite the numbers — the Centers for Disease Control say an average of 1 in 110 children in the U.S. has symptoms of Autism Spectrum Disorder – scientists are unsure what causes it and whether the cause is genetic or due to an outside trigger, or both.
To cure or not to cure – and can it be done?
Whether autism can and should be cured is a contentious topic among moms of autistic children.
The National Autism Association has links on its page to various “treatments,” which include chelation therapy, or removal of heavy metals; vitamins and supplements; and dietary modifications such as gluten-free or casein-free diets. Treatments like these have been shadowed in controversy; the Food and Drug Administration linked two 2005 childhood deaths to chelation therapy, and while some parents have reported that their child’s behavior improves with a gluten-free and casein-free diets, studies have been unable to prove this or have found it ineffective.
Sunday Stillwell put her son, Noah, on a gluten-free diet for two months to see if it would help his gastrointestinal issues and said she saw no effect on his behavior. Stillwell said she understands why parents try these cures even if she doesn’t believe autism should be cured.
“All these parents just want something to grab onto,” Stillwell said. “They want a reason, they want a cure, they want to know why it happened. And I’d like to know why it happened too, but I’m not willing to put my child through something that could be potentially harmful.”
Rita Scheffler, executive director of the National Autism Association, has two children, son with Asperger’s syndrome and a daughter with high-functioning autism. Scheffler said she believes that a cure would improve the life quality of many people.
“We have teens who can’t be toilet trained,” Scheffler said. “My daughter is sick and deserves a chance at a happy life, and right now she’s not able to have that.”
Jean Winegardner said that she believes autism is a lifelong neurological condition and isn’t trying to cure her son.
“I spend my time and energy looking for ways to teach Jack to compensate for the deficits that come with his autism and to prepare him to grow up as a proud, autistic adult,” Winegardner said. “I do understand the feelings that are behind some people’s desire to cure autism, but I personally don’t buy the ‘my child recovered from autism’ thing. I also think that some desperate parents are taken advantage of by people selling expensive cures and treatments.”
Ann Gibbons, executive director of Autism Speaks has a 22-year-old autistic son. She said that scientists have not been able to prove that treatments like gluten-free diets ameliorate symptoms of autism, but families have personally reported to the agency that it has worked.
“I’ve met a lot of high functioning adults who have been able to structure a satisfying and happy life and I think that is awesome,” Gibbons said. “For others, there is real difficulty in being self sufficient. My son’s life is maintained by network of people. He depends on a lot of people and wouldn’t be able to live a happy life without them.”
Sunday Stillwell said that accepting autism doesn’t mean she’s given up on her sons.
“It doesn’t mean that we roll over and we do nothing for our children,” Stillwell said. “It just means that who they are as an individual is a person who’s diagnosed with autism.”
The National Institute of Environmental Health Sciences hopes to answer these questions through groundbreaking research. But it will take some time.
One study, Early Autism Risk Longitudinal Investigation, is looking at 1200 mothers who have had one autistic child and are pregnant again. The study will follow each mother-child pair from the beginning of pregnancy until the child is three years old.
“The strategy is that is that if there are environmental influences, the most important time to follow the pregnancy is well before the birth,” said M. Daniele Fallin, associate professor at the Johns Hopkins Bloomberg School of Public Health. “We’ve intentionally tried to make [the study] as broad as possible.”
The study began in January 2009 and is expected to run seven years, Fallin said. There are no conclusive results this early.
“We believe very strongly that there is an environmental component, and probably a predisposing genetic factor, but there has to be a trigger,” said Rita Shreffler, executive director of the National Autism Association, a parent-run nonprofit in Nixa, Mo., who has two children diagnosed with autism. “It’s a very understudied area.”
Autism Speaks, a science and advocacy organization, is a financial supporter of the EARLI study. Its executive director, Ann Gibbons, said they support the study ideologically as well as fiscally.
“The way genes are turned on or off is related to something,” said Gibbons. She has a 22-year-old son, Philip, who is autistic. “Environmental factors can refer to a lot of things – in addition to air pollution or chemicals in household cleaners, whether a mother is exposed to certain germs or a neurotoxin when a child is in utero may have an effect on the child’s development.”
Mothers of autistic children tend to agree with what the EARLI study is looking for.
Sunday Stillwell of Owings Mills, Md., has two sons, Sam, 7, and Noah, 5, who are severely autistic. Autism is classified on what’s known as “the spectrum,” and variations of the disorder run the gamut from high-functioning to severe.
“Both my boys have seen geneticists who feel very strongly that something genetic has caused their autism, only because it’s very rare to have more than one child with autism, and it’s especially rare to have two children with severe autism,” Stillwell said. “And I believe there is an environmental factor that triggers autism in a child, but we just don’t know.”
Jean Winegardner of Wheaton, Md., is raising three children; her seven-year-old, Jack, is autistic. Jack has what is referred to as PDD-NOS, or Pervasive Developmental Disorder – Not Otherwise Specified, and Winegardner said he is high-functioning. Her attitude toward autism’s cause is similar to Sunday’s.
“I think that there is a very strong genetic component to autism,” Winegardner said, “I don’t know what else might contribute to it … I just don’t know.”
Winegardner agreed that research should be done, but said she believed there were other areas to focus on as well.
“It is important to figure out what causes autism, but that has never been my focus, even when Jack was first diagnosed,” Winegardner said. “I am more concerned with making sure individuals with autism and their therapies are covered by insurance and that there are treatments available for the people who can benefit from them.”