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