Wisconsin autism activists felt years of effort pay off last year when Gov. Jim Doyle issued an emergency rule requiring insurance coverage of autism spectrum disorders.
The emergency rule, which went into effect Nov. 1, mandates autism coverage for health insurance policies issued by an insurer. The rule does not apply to employers with self-funded health plans. The rule lasts for a year while the Office of the Commissioner of Insurance comes up with a permanent rule.
The law requires a minimum of $50,000 a year for intensive evidence-based treatment, and $25,000 annually for non-intensive services.
As autism diagnoses grew in the 1990s and first decade of this century, so did the variety of treatments, everything from diet change to psycho-educational interventions. But “evidence-based treatment” at the moment refers to Applied Behavioral Analysis, an intensive intervention method developed by clinical psychologist Dr. O. Ivar Lovaas.
Lovaas, his staff and students trained in his method worked one-on-one with autistic children aged two to four. The work – 40 hours a week of structured training – was conducted in the children’s homes, with parents participating so they could continue the behavioral training on their own.
After studying three groups of children through age 7 – the experimental group receiving the Lovaas Technique, a control group that received some behavioral training and other treatments, and a third group that received no behavioral treatment – Lovaas published his results in 1987 and reported that 47% of the children in the group that received intensive behavioral therapy were functioning normally.
His results caused a stir in the then relatively small autism community, especially when other studies were unable to replicate Lovaas’ results.
“People were starting to say about Lovaas’ treatment, ‘It can’t be true. He’s faking his data.’ That caused a war in literature between camps for years,” said Dr. Glen Sallows, president and co-founder of the Wisconsin Early Autism Project, a program and clinic with treatment based on Lovaas’ work.
“Lovaas’ study came out in ’87 and he updated it in ’93, but no was ever been able to replicate it,” Sallows said. “There were several attempts to replicate it. In my mind, there were good reasons why those didn’t work as well. They didn’t have enough hours. By and large they were at universities and didn’t have access to much money so they didn’t have the hours. They didn’t do it long enough to bring about the changes. And I don’t think people understood how much supervision and training you have to give your line staff.”
Sallows, originally from Los Angeles, had Lovaas as an instructor when he was an undergraduate at UCLA in the 1960s. He went on to the behavior-oriented graduate school at the University of Oregon. Upon graduation, Sallows’ first job was as a psychologist for a children’s mental health clinic in New Jersey. In 1979 he joined the staff at the Mendota Mental Health Institute in Madison, and in 1981 led the autism unit there.
Sallows had read about Lovaas’ treatment methods. Following those methods, Sallows treated an autistic boy who responded.
“He did quite well,” Sallows said. “I decided that was pretty fun. I called up Lovaas and said I wanted to be trained in his way of doing it. He said, ‘OK, I’ll train you if you run a replication site for me.’”
Sallows studied with Lovaas in 1994-95, and then left Mendota to start the Wisconsin Early Autism Project.
“I started hiring staff and it grew from there,” he said. “I m just a dyed-in-the-wool clinician. You want to help everybody. At that time there was no funding. There were no providers living in Wisconsin. There was a provider in Chicago who was working with people in Milwaukee, but they were charging some high prices.”
Being a startup operation with a promise to keep about replicating Lovaas’ study, WEAP needed funding.
“I had to have enough money to run 40 hours a week,” he said.
He sent a funding request to the state Department of Health and Families Services (now known as the Department of Health Services).
“They rejected it on the grounds that this treatment was experimental,” Sallows said. “I called Lovaas and he gave me names of people all across the country to write letters. One of them, Bernard Rimland, he’s sort of famous being one of the founders of the Autism Society of America, he wrote this funny letter, two sentences, ‘You asked if behavior treatment for autism is experimental. Absolutely not.’”
The letters helped win a hearing for the program.
“We won the hearing,” he said. “After that my wife (Tamlynn Graupner, WEAP co-founder, CEO and clinician) and I met with people at DHFS. There were no codes for this. There was no protocol for what should and should not be funded. We hammered it all out. That took until March of ’95 to get that all done.”
WEAP opened an office in Madison.
“But we were getting referrals from all over the state,” he said. “We were the only ones certified to do it in Wisconsin.”
Today WEAP operates the original Madison clinic as well as offices in Milwaukee, Eau Claire and Green Bay.
And in 2005 Sallows kept his promise to Lovaas when he and his wife published a paper replicating his findings.
“The thing that’s really important about our study, we’re really the first ones in the world to actually replicate with a similar population,” Sallows said. “Actually, our population was somewhat lower functioning than his. His average IQ for kids beginning treatment was 60 and ours was 51. Lovaas got 47% of his kids to reach best outcome; we got 48%. You couldn’t replicate it much closer than that.”
Sallows said the WEAP study put an end to doubts about ABA, at least among serious researchers in the field.
“Cathy Lord, who is very famous in autism – she’s the main author of the two most famous diagnostic tools, ADIR (Autism Diagnostic Interview-Revised ) and ADOS (Autism Diagnostic Observation Schedule) – before our study came out, she was saying, ‘OK, we agree that Lovaas’ method works. But we don’t know why. It was a fluke.’ Then our study came out and that really put a stop to all that talk. Geraldine Dawson at Washington State in Seattle has published a couple of really big studies. She’s into brain imaging. She wanted a copy of our paper and quoted it. We’re one of only a couple of autism programs across the country she put in her reference list. Everybody now kind of agrees this treatment does work.”
Still, Sallows knows ABA treatment is competing with a host of other treatments.
“There are things on the internet that I don’t think are supported by research. We pretty much stick to what’s been researched by us or by somebody else,” he said. “So many parents are trying gluten- and casein-free diets and supplements. There are more and more doctors that follow the DAN protocol (Defeat Autism Now!, a project of the Autism Research Institute), but there’s no data to support that. For the most part, I feel it’s kind of harmless. But chelation (a method to remove heavy metals from the body) is not harmless. There’s only been one death and most parents don’t believe it will happen to their child. But, again, there’s no data. The problem I have sometimes if a kid is on a bunch of supplements or on chelation and he gets upset, I tell the parents, I don’t know what I’m seeing now. I’ve given up trying to argue them out of using biomedical stuff. It’s all over. Everybody’s talking about it, but it does very little. It might do a little bit, but it’s certainly not the cure for autism.”
If parents want to research treatments online, Sallows suggests they stick with proven data.