Parents of Autism Harbor Hope, Fear

For parents of those with autism, the future may seem perpetually unclear.

November 6, 2008, 4:08 PM

Nov. 7, 2008— -- In some ways, Susan Senator of Brookline, Mass., was no different than any other parent who was worried about her 18-year-old child leaving the nest.

But in fact her situation was vastly different. She spent many nights awake wondering if sending her autistic son to a specialized residential school program was the best option.

Senator said she was so afraid that she could not tell her son, Nat Batchelder, who was 18 at the time, that he would be moving out of his family's home.

"If we tell him too soon, he'll just get anxious," she said. "But the time is passing, and Nat is getting older, and we want to see him succeed."

Senator said she became sick to her stomach wondering whether her son would be able to adapt to change in his everyday routine -- a difficult task for many individuals on the autism spectrum.

Fortunately, it appears that Batchelder, now 19, has adjusted to his new schedule at the residential program. But for Senator, the worrying continues; she now fears what her son's life will be like in three years, when he ages out of a specialized school system.

Hear Susan Senator tell her story.

Thousands of parents across the country can sympathize with Senator's concerns. Meanwhile, researchers in the field of autism spectrum disorders look toward the future at the possibility of clearer diagnoses, better treatment and other advances that may one day help to mitigate the worry that these parents experience.

Dr. Lisa Shulman, associate clinical professor of pediatrics at Albert Einstein College of Medicine in New York City, says the structure is already in place to support scientific research and interventions for treatment. She said that unlike a decade ago, many parents now recognize some of the symptoms of autism and will ask their children's specialist if they suspect their children have autism.

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"Certainly, awareness has already contributed to making great gains in the diagnosis and treatment of autism," Shulman said.

Shulman said recognition of early signs and the emergence of educational and support services within the past decade have also helped to advance the outcomes for individuals with autism. A multi-pronged plan of attack -- one that includes earlier diagnosis, more evidence-based intervention, and research into the causes of autism -- is on the horizon, she said.

Dr. Daniel Geshwind, director of UCLA's Center for Autism Research and Treatment, said that of these goals, earlier diagnosis through the identification of one or more of the genes that cause autism is a top priority.

"First identifying cause will help you find a mechanism, and then you can either prevent or treat," Geshwind said. "Finding the mechanism doesn't mean an automatic treatment, but we definitely need the first step."

Government agencies, including the National Institutes of Health and the Centers for Disease Control and Prevention, are exploring the idea that certain environmental stressors could unmask physical symptoms of genetic diseases known as mitochondrial disorders.

But although environmental stressors may be one link, Shulman says research is pointing to a range of causes of autism.

"It's more likely that genetics coupled with environment stressors may be just one combination that suggests cause," Shulman said.

Shulman said finding a cause will allow for individualizing treatments. So far, applied behavior analysis -- an early educational intervention that teaches social, communication and behavioral skills -- is the primary scientifically based treatment recommended by medical professionals.

But there are also alternative medical and educational interventions available to families that are not scientifically proven to be effective. Some believe that these methods offer positive results and, in lieu of evidence-based treatments, may be the best bet.

But Shulman noted that although evidence-based treatments are scarce and time may be of the essence when it comes to treatment, parents should be wary of treatments that are not scientifically supported.

"If you choose to experiment on your child, and not wait for appropriate scientific evidence to catch up, then recognize that you're in fact only experimenting with your child and that you are taking that risk," Shulman said.

For parents like Senator who have passed the stages of diagnosis and early intervention, the concern for their children may not revolve around medical treatments, but rather having their child learn independent living skills.

Under the Individuals with Disabilities Education Act, a federal law that guarantees public education for developmentally disabled children, a child with autism is mandated to receive schooling through age 21. After an autistic child becomes an adult, there is no longer a federal directive to provide services for individuals on the autism spectrum.

Some options for adults with autism may include group homes for developmental disabilities and day programs to teach societal integration. But many programs do not cater specifically to autistic individuals, whose symptoms differ from many other developmental disabilities. Recently, many states have increased the number of educational services in order to accommodate the number of individuals diagnosed on the autism spectrum.

Senator envisions adequate support services that will improve her son's quality of life. Senator hopes that he will learn basic living skills so that he can one day live on his own.

"When we're gone, we want to make sure to the greatest degree possible that Nat can depend on less people," Senator said. "That, I think, is the biggest fear many families have."

Geshwind said the state of support services cannot completely dispel these fears. But advancements in care may one day alleviate many of these concerns.

"If you look at the prognostic studies done now showing what the trajectory of autism is, only 25 percent of children at all levels become independent as adults," Geshwind said. "The goal of our research is to make that extra 75 percent independent, as well."

Senator said she is uncertain of her son's future beyond the next three years in his residential program. But, she said, he has continued to be involved in his community by participating in Special Olympics. Nat also recently began working at a chain pizza store.

"We want to see people like Nat working if possible [and] continuing their education," Senator said. "The ideal for me is to see Nat participate in the world through the greatest degree possible."

Although Geshwind said he does not think the number of children diagnosed with autism will decline, he said the increase of educational centers and scientific research to create drug therapies to target genes are key in the development of an autistic child.

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"I wouldn't tell parents that in the next two years there will be a whole new set of treatments," Geshwind said. "But I would tell them we're on the road, and the road is getting clearer."