Treating Autism

Intensive treatment has helped autistic children prepare for adult life. Soon, it may be available to every American family.
December 01, 2009

When her son turned 2 years old, Kammy Kramer asked her pediatrician why Elliott was still not speaking. It was Kramer’s fourth visit in six months, and her exasperated pediatrician told her to consult a speech therapist.
Shortly after this visit, Elliott’s aggressions began. He lashed out in physical violence more than 100 times a day, mostly at his mother and father.
But he was also violent toward his infant younger brother, Henry.
Once, Elliott pushed Henry down the stairs. Other times he chased him with knives.
Elliott’s parents took him to a neurologist, who diagnosed him with autism.
Knowing her son’s affliction gave Kramer purpose, if not much promise.
“I didn’t have hope,” Kramer said. “But I knew that we just had to do something about the aggression piece of it.”
Seven years later, Kramer’s hope is restored. Elliott has become a polite young boy who loves his younger brother.
Elliott’s recovery came largely through Lovaas treatment, an intensive regimen of in-home treatment from behavioral therapists. The treatment, which costs as much as $100,000 per year, was covered by Kramer’s insurance. Soon, the same treatment that transformed Kramer’s son and saved her family may be available to all of America.
The federal health care bill currently being debated in the Senate has a single four-word phrase — “including behavioral health treatments” — that would require insurance companies to cover behavioral therapy for autistic families.
When Kramer’s daughter Ada, now three, was also diagnosed with autism, Kramer applied for Lovaas treatment. A witness to Elliott’s rapid initial progress, Kramer thinks the treatment will allow Elliott and Ada to someday live independent lives.
“I just never ever lose faith that they’re going to be on their own, and they’re going to be OK because of all we’re doing,” Kramer said.
A new term
According to the advocacy group Autism Speaks, many states are lacking in their insurance coverage of autism treatment. Autism Speaks cites only 15 states with comprehensive programs, and Minnesota is not one of them.
Minnesota lawmakers entered a bill to force insurance companies to cover autism treatment in January, but the bill was still stuck in committee when the legislative session ended in May.
But state efforts for reform would be made moot if the federal health care reform bill is passed in its current form. Rebecca Shaffer, spokeswoman for Autism Speaks, said there may be some wrangling about interpretations of the phrase “including behavioral health treatments.” Shaffer admitted that “behavioral health treatments” is a new term. But as Autism Speaks reads the words, insurance companies across the country would be forced to offer coverage of behavioral treatment.
“We’re hoping that this would be pretty comprehensive,” Shaffer said.
Earlier this week, staffers for U.S. Senate Majority Leader Harry Reid, D-Nev., told The New York Times he wants to see the health care bill passed by Christmas.
‘The way to go’
When she was first told her son had autism, Kramer did not much care to find out why. Though she admits it may be unusual, she did not blame any one person or thing and wondered only briefly if she had made a mistake during her pregnancy with him. She was dealing with more immediate problems.
“I had someone with no language, who wasn’t toilet trained and was trying to kill our other son,” Kramer said.
Elliott was first enrolled at a treatment facility, but Kramer switched to home-based treatment when she found out it was covered by her insurance.
Within three months, Elliott went from using five or six words to testing at an age-appropriate level. A month later he was potty-trained. His aggressions dropped from more than 100 per day to six per week.
“I, at that point, quit everything and said, ‘This is the way to go for us,’ ” Kramer said.
Robin Rumsey, an assistant professor and pediatric neurologist who has seen Elliott for four years, said behavioral treatment is often misrepresented. She has heard stories of teachers who warn parents that the therapy is “forming little robots” out of autistic children.
Rumsey said the lack of a scientific understanding of autism, plus a diffusion of information on the Internet — much of it unverified scientifically, some of it outright wrong — has led some parents down the wrong path.
“Google autism treatment — it’s over a million hits,” Rumsey said. “Parents are looking for answers, and the research isn’t there yet. So I think the philosophy of a lot of parents is, ‘Well, we’re not going to wait for the research, time is ticking, so we’re going to try these things that look promising.’ ”
Rumsey’s colleague Amy Esler said many of her patients’ parents know of autism only from the movie “Rain Man,” and expect that their child will have the same peculiar savant talents. In truth, only an estimated 10 percent of autistics are a savant of any kind, while at least a quarter and as many as half of all autistic children suffer from mental retardation.
Esler said that among the most damaging pieces of misinformation is the “wait and see” suggestion, which keeps parents from having a young child diagnosed. She said a child needs two years of sustained intervention before age five to be ready for elementary school, and some programs will reject a 6-year-old as too old.
Esler contributed to a multi-institutional study published in the September issue of the Journal of Autism & Developmental Disorders, which sought to improve methods of diagnosing toddlers.
A study published in the current issue of Pediatrics showed that therapy has proven effective for children as young as 18 months old.
First steps
In August, Linda Kirby and her husband asked Rumsey about their son Joshua, 6, and whether he should begin attending school. When Rumsey counseled them to hold Joshua from school, Kirby and her husband made what she calls a “heart-wrenching” decision: They went against the advice and enrolled Joshua in preschool.
With the aid of a behavioral therapist, Joshua now attends a typical preschool. Kirby is happy with what she has seen in her son’s interaction with other kids, most of whom are a year or two younger than him. Last week, Joshua was successful as the “line leader,” taking the class out for recess time.
Through years of in-home treatment, Kirby watched Joshua evolve. She describes the young Joshua as “a body without a soul,” who wandered the room aimlessly and fiddled with a piece of paper. Within months of treatment, he was responding to his name and beginning to label objects. Today, Joshua speaks in broken sentences — “Mom, come play,” “Go, car” — to communicate his desires. These clipped phrases are a first step and a source of pride for his mother.
Kirby sees Joshua’s aided transition to preschool as an intermediate step. She did not want to enroll him in a class of autistic children and try to toss him into a typical elementary school several years from now.
Joshua’s transition to preschool has had rough spots, but Kirby is happy with her decision.
“To me, it’s rather like he’s learned Russian all his life and we’re asking him to be dropped into the middle of English-speaking U.S.A.,” Kirby said. “And it’s quite a culture shock.”
In Kirby’s district, public schools do not allow a behavioral therapist in the classroom. If Joshua is deemed unready to enter first grade without a therapist, he will need to attend special education classes.
Kirby wants Joshua to enter first grade and, like Kramer, has envisioned an ideal future.
She dreams that Joshua can “be functional, and I know this sounds corny, but to be happy and to have a friend.”
‘Part of who we are’
After his early advances, Elliott leveled off for a time. His development happens slower now. On a recent day, he and his mother went through the seasons, with Kramer asking which seasons are best for trimming and harvesting.
“You pick them when they’re all done growing,” Elliott said.
In a recent conversation with a stranger, Elliott had trouble maintaining eye contact and preferred to face the other direction. He was respectful and enthusiastic, but his therapist needed to remind him to stay on topic.
At the moment, Elliott’s preferred topics of conversation are traffic lights and his weekly trips to the bank, where he deposits his allowance. For a while, it was garage door codes. Before that it was elevators.
But Elliott will also talk about his little brother Henry and how he and Henry now have shoeboxes in their bedrooms, which they call their “offices.” The shoeboxes are their “mailboxes,” and the brothers write each other letters back and forth.
Kramer has not yet told Henry about Elliott’s aggression toward him. She said she might some day, though she will probably spare him the worst details.
When Elliott’s aggression was at its worst, Kramer was scared to leave her boys in a room together. She and her husband couldn’t sleep at night.
One day Elliott slammed his brother’s head into a puzzle, drawing blood. Kramer put Henry into her van and drove around to clear her head. She wondered whether she and her husband should separate, each taking one child, for Henry’s safety and their own sanity.
Not long after that, Elliott was communicating with his parents for the first time and playing safely with his little brother. Kramer realized that her son’s autism would no longer dominate their family life.
Recalling her thoughts then, Kramer said, “This is going to be a part of who we are. It’s not going to define us.”

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