Longform

Communication Breakdown

Page 5 of 11

Meanwhile, Jack was continuing his education at home, at his parents' expense. But their home was becoming a madhouse, with between 20 and 35 people coming and going each week. Jones jokes that he is president and CEO of Jack, Inc., and he often wears a navy-blue baseball cap with the words "Team Jack" etched on the front. He ordered the same hat for all of the people who care for Jack: five tutors who take turns administering ABA, two program consultants who design Jack's curriculum, various therapists and several nurses and doctors, including a cardiologist and an endocrinologist, who treat Jack's many ailments. "We are a team," Jones says. "Jack requires a team."

At 2 a.m. one morning, the Joneses' burglar alarm sounded. When Jones went downstairs to investigate, he found a door ajar. There was no sign of forced entry. "I know I had locked all the doors; it's my nightly routine," he says. Many times before that night, his wife had noticed that small items, such as rings, were missing, and she had torn apart the house looking for them. Their home no longer felt private. "We decided to call it quits then," Jones says. "We were going crazy."

So they rented a small house across the street from theirs and made it the new headquarters for Jack, Inc. The classroom in the "cottage," as Jones calls it, is equipped with a camera that's wired to the living-room television. Jones can tune in any time and observe his son's lessons without distracting him. Most of his tutors were and continue to be University of Colorado students majoring in psychology, speech therapy, kinesiology or early childhood education.

Jack's parents and tutors make a point of taking him out into the community at least once a day. Sometimes they go to a nearby playground where Jack no longer is afraid to meet other children; sometimes they go to the library, where he no longer tears apart books or throws screaming fits; and sometimes they just go on errands.

At the time the cottage was set up, Jack was receiving forty hours of ABA per week, but a member of the school district's IEP team said that "forty hours a week of ABA was too much for a four-year-old -- that it's inhumane," Jones says. "It's not inhumane; it's the one thing that will allow Jack to be human instead of a caged animal."

ABA in some form has been around for more than fifty years and has evolved with research. But it has been criticized for being a form of conditioning; by repeatedly prompting tasks, opponents charge, kids are being turned into little robots who can't think for themselves. And early researchers not only reinforced proper behavior with rewards, they punished improper behavior.

In 1974, UCLA researcher Ivar Lovaas studied the effects of ABA on three groups of autistic children: One group received no ABA; one received ten hours of ABA per week and the other received forty hours per week. The latter group made the most progress in developing social and academic skills. But at the time, Lovaas used a system of punishments. For instance, some of the children in his study who were prone to chewing on their wrists were deterred by having Tabasco sauce rubbed on their skin. After much criticism, Lovaas repeated his study in 1987 without using the punishments. Again, the results favored intensive ABA.

There are hundreds of treatment methods for people with autism. "Until recently, however, none of those treatments has offered any solid, realistic basis for changing the view that autism is a permanent disability," according to the editors of Behavioral Intervention for Young Children With Autism. "Several studies have now shown that one treatment approach -- early, intensive instruction using the methods of Applied Behavior Analysis -- can result in dramatic improvements for children with autism: successful integration in regular schools for many, completely normal functioning for some. In fact, there is abundant scientific evidence that Applied Behavior Analysis methods can produce comprehensive and lasting improvements in many important skill areas for people with autism, regardless of their age. No other treatment for autism offers comparable evidence of effectiveness."

The Joneses presented this evidence, as well as binders full of other journal articles documenting ABA's success, testimony submitted by national experts on behalf of ABA, reports charting Jack's progress, hours of videotapes and even Jack himself -- but special-education administrators refused to consider the technique, Jones says. "The school district never proposed a program based on replicable research or one that even had some semblance of yielding a promising outcome." Jones also claims the school district's attorneys tried to discredit him. "They accused me of doctoring the videos to leave out parts where he regressed. Let's be honest: Of course I edited them. If they wanted to sit through sixteen hours of tape, they were welcome to, and they would have seen no instances of regression."

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Julie Jargon
Contact: Julie Jargon