Elisa Roiko right a therapist helps twins Elijah (middle) and Seth 4, Fernandez as they worked with shaving cream. The cream helps the children with sensitivity.
Jerry Holt, Star Tribune
Autism's $100,000 question
- Article by: MAURA LERNER
- Star Tribune
- April 4, 2011 - 8:46 AM
It all started with a scientist and 19 autistic children.
Ole Ivar Lovaas, a psychologist at the University of California, wanted to see if he could change the way the children behaved, given enough time and effort. So he lavished them with intensive therapy for 40 hours a week for two years or more.
At the end of the experiment, Lovaas reported that nine children -- 47 percent -- had no visible sign of autism by first grade.
Today, almost 25 years later, therapists in Minnesota are charging up to $100,000 per year for the treatment Lovaas pioneered, and some parents believe it is the answer to their prayers. Now a battle is raging in Minnesota about whether taxpayers and health insurers should be forced to pay for the treatment, known as Applied Behavior Analysis (ABA).
At a time when autism diagnoses are soaring nationwide, many parents and professionals insist that ABA therapy is the best way to help these children live normal lives.
Eric Larsson, a Minneapolis psychologist and leading advocate, says ABA is more than just a treatment -- it's a way to rescue children "from the ravages of autism." He tells parents that nearly half of children can recover if they start ABA soon enough. "They're coming to us because they want to cure their child," he said. "Just like you or I would do if we had cancer."
But other autism experts say the benefits of ABA treatment have been blown out of proportion. They say there is scarce evidence that it's really better than less costly alternatives.
"A lot of claims out there are inflated," said Barbara Luskin, a psychologist with the Autism Society of Minnesota. "Autism is a difference in the way your brain is. You're not going to cure it."
This year, for the third year in a row, the Minnesota Legislature is debating whether to require the state's health insurance plans to cover ABA treatment for autism, a speech and behavior disorder that is said to affect 1 in 110 children nationally.
More than 20 states have adopted such mandates since 2007, says Lorri Unumb of Autism Speaks, a national advocacy group. Ultimately, she hopes it will become the law of the land as part of national health reform.
"There is no controversy at all about whether ABA is the gold-standard treatment," says Unumb, a lawyer and senior policy adviser. "The only discussion is whether we can afford it."
But among medical experts, there is no consensus that ABA is necessarily the best, says Dr. James Moore, an autism specialist at Children's Hospitals and Clinics of Minnesota.
"If we all believed it, then we wouldn't recommend anything else," Moore said.
In Minnesota, health plans typically pay for certain types of autism treatment, such as speech and occupational therapy. But most draw the line at ABA, calling it costly and unproven.
"The concern is that you've got desperate parents," said Glenn Andis, a psychologist and senior vice president of Medica Health Plans, which opposes the mandate. "You've got a provider who says they've got all the answers, and they're going to cure their kids? Need I say more?"
Even before Lovaas began his famous study at UCLA, he was intrigued by the idea of changing behavior with an elaborate system of rewards and punishment. In the 1970s, he took part in a controversial study known as the "Feminine Boy Project," which used some of the same techniques to train boys to suppress effeminate behavior.
In the autism experiment, he sought to teach his young patients, all diagnosed by age 4, the skills that come so naturally to others but seem to elude kids with autism: how to talk, play, interact with other people. He assigned graduate students to work with each child full time, and to teach parents to help -- essentially covering "all of their waking hours."
In 1987, Lovaas published his results: Nine out of 19 children shed their autistic behaviors and had significant IQ gains by first grade, compared with 2 percent in comparison groups that got little or no treatment. In a follow-up study in 1993, Lovaas reported that eight of the original nine remained essentially normal by sixth grade. He later told the New York Times: "If you met them now that they are teenagers, you would never know anything had been wrong with them."
The first study came out a year before the movie "Rainman" made autism a household word. Lovaas' findings had a profound effect.
"People just thought much more in the dark ages back then," said Larsson, who founded the Lovaas Institute Midwest, an autism treatment center. "Psychiatrists would tell you: Put your son in a hospital and don't tell anybody they exist."
Lovaas, he said, showed the power of early intervention: "If you work with the parents, these kids do a lot better."
Larsson, who also teaches at the University of Minnesota, adopted the same model. He likens his treatment to a "home invasion," with therapists descending on patients' homes for up to 56 hours a week, including time for supervision and parent training.
Larsson admits it has been a struggle to get paid for all that time and effort; most of his revenue comes from Medicaid, a state-federal program for the poor and disabled. At least twice over the years, the state of Minnesota has threatened to cut off payments to Larsson's programs because of billing disputes. Yet from 2005 to 2010, it paid the Lovaas Institute an average of $59,000 to $72,000 a year, per child.
Larsson acknowledges the treatment is expensive, but only in the short run. "If our kids actually recover, and some of them do, then the state's saving a lot of money," he said.
In a 2007 affidavit, he stated that his program's success rate "is currently at 47 percent, and we are optimistic that we can increase that rate to 75 percent or better."
The national research has been less optimistic.
Some scientists have challenged Lovaas' original results, in part because it wasn't a randomized study -- meaning he didn't ensure that all children started out at the same level.
Since then, attempts to repeat his work have been inconclusive, according to a 2010 review by the Technology Evaluation Center, a joint project of Kaiser Permanente and the Blue Cross and Blue Shield Association. The group identified 16 studies comparing ABA to other autism therapies and concluded: "Overall, the quality and consistency of results of this body of evidence are weak."
Some studies have shown that ABA programs result in bigger gains in language and social skills, while other studies have found little or no difference. The National Institute of Mental Health says simply: "There is no single best treatment package for all children with ASD [autism spectrum disorder]."
In fact, dozens of treatments -- from exercise to language to behavior therapies -- are used for autism, according to a government umbrella group, the Interagency Autism Coordinating Committee. "For all of these interventions, there is a range of improvement, with some people making profound gains and others showing little response," it reported in February.
Among those who treat children in Minnesota, however, opinions are split.
Amy Esler, a University of Minnesota psychologist, said she doesn't hesitate to recommend ABA for severely autistic children. "It's well accepted that kids who receive a couple of years of intensive, behaviorally based intervention before they turn 5 do better than kids who don't," she said. "Does that mean all kids are going to respond to that? No."
Kathryn Marshall, executive director of the Minnesota Autism Center, says ABA can help children who fail in less intensive programs. ABA is "the only effective long-term treatment for children with autism," says Marshall, who is also the mother of an autistic child. "Do it right and do it well, and you will see the benefits."
But Moore, of Children's Hospital, says most good treatment programs have similar success rates: On average, "50 to 60 percent of the kids are much improved."
Luskin, of the Autism Society of Minnesota, says everything depends on the severity of the child's condition, which can vary dramatically. If you measure success by how many children are mainstreamed in school, she said, "a lot of kids can do that, regardless of what therapy you do."
David Mandell, of the Center for Autism Research in Philadelphia, calls ABA the "most evidence-based treatment." But even so, he said, the idea that every autistic child needs 40 hours a week of therapy "is both a fantasy and a fallacy. I don't think it's sustainable."
On that, most in the health insurance industry would agree. "I don't blame these parents," said Andis, of Medica. "Who doesn't want to make sure that these kids get better?" But health plans have limited resources, he said, and need to make sure that treatments are cost-effective as well. "There's not enough evidence to support the idea that this should be covered."
Blue Cross and Blue Shield of Minnesota is one of the few insurers that opted to pay for ABA. But even there, a growing number of employers are asking to drop the coverage, for fear of the ballooning costs, said Peter Brodrick, the organization's mental health director.
"We all want the very best for our kids," said Julie Brunner, executive director of the Minnesota Council of Health Plans. But if ABA were truly the answer some say it is, she said, "there wouldn't be this ongoing debate."
Maura Lerner • 612-673-7384
© 2014 Star Tribune