Wednesday, April 20 — Three years ago, Stacie Rulison’s son Ryder was diagnosed with an autism spectrum disorder. Ryder was three years old at the time.
A specialist at the University of Michigan told her: “Consider spending your resources on empirically proven interventions.”
Rulison did and put her stock in Applied Behavior Analysis, or ABA. It’s one of many intervention treatments for autism spectrum disorders. The earlier it’s used, the more effective it is, Rulison said.
The Center for Autism and Related Disorders defines ABA as “the application of the principles of learning and motivation” from the scientific study of behavior. The basic formula is encouraging socially acceptable behavior with rewards like a simple “good job,” high-five or smile. It doesn’t involve pills, hyperbaric chambers or complicated diets.
“Had we not done tons of ABA when he was young, when he was 3, right out of the chute, I honestly don’t know where he would be today — he definitely would not be thriving where he’s at,” Rulison, whose family lives in St. Johns, said.
But ABA is expensive. Rulison said it can cost a family tens of thousands of dollars a year. And although proven effective, the treatment is less accessible because it’s not covered by insurance in about half of the United States. Michigan is one of those states.
In late 2009, the Centers for Disease Control concluded that the prevalence of autism reached one in every 110 births in the U.S. and one in 70 male births. The nationwide Autism Society advocacy group estimates that the lifetime cost of caring for a child on the autism spectrum ranges from $3.5 million to $5 million.
April is Autism Awareness Month, and in about half of the states in this country, legislation is afoot to expand health insurance policies to cover autism treatments, allowing families easier access to ABA.
In December, two proposed state House bills would have required insurance providers to cover treatments for those on the autism spectrum — autism, Asperger and Rett’s syndromes. While the bills would have covered speech, occupational and physical therapies, they also would have required insurance companies to cover up to $50,000 for ABA therapy. But those bills never made it to the Senate.
One of the arguments against the legislation is that it drives up the cost of premiums. The Council for Affordable Health Insurance reported in 2009 that mandated autism coverage would raise premiums by 1 to 3 percent per family. The council argues that health insurance “does and should cover physical medical conditions faced by those with autism,” but says “autism advocates want to require health insurance to cover therapies more accurately described as educational.”
Advocates of the legislation say while a treatment like ABA is inaccessible because it is expensive and not covered by insurance, societal costs tend upwards in the millions if autism goes untreated.
Lt. Gov. Brian Calley, whose daughter was diagnosed with an autism spectrum disorder, is a strong advocate for the legislation.
“When we make a choice in our insurance code to say that we’re not going to cover autism services, not only are we choosing to condemn people — real people — to a life of dependence, but we’re also obligating taxpayers to just an incredible amount of expense,” he says in a video posted on the Autism Speaks website.
Rulison agrees and wonders: Why is ABA left out?
“You would just assume the needed treatment would be available to you,” she said. “It makes no sense to me. As a parent it’s crushing to know there’s something out there to help my kid and I can’t get to it.”
However, Rulison said she’d be “surprised” if the legislation doesn’t pass this year: “It’s not about driving a change, it’s getting it right. It’s not a mandate, it’s a reform.”
Western Michigan University, in Kalamazoo, has one of the leading ABA training programs in the nation.
“This university is sort of recognized in our field as being the home of ABA. It’s very highly regarded in our profession,” said Stephanie Peterson, a psychology professor at Western and board certified behavior analyst. Peterson has been a professor for 15 years, the past two of which have been at Western.
Peterson describes ABA as the “application of a set of behavioral principals,” first developed by behaviorist and philosopher B.F. Skinner in the mid-1900s. Specific cues and prompts lead to a behavior and if the result of that behavior is desirable, you reinforce it. It’s about “spanning that reinforcement over time,” Peterson said.
These basic principals were first applied to animals and Skinner started applying them to human social problems in the 1960s, she said. Peterson added that a study published a few years ago by the National Autism Center concluded that about 80 percent of “evidence-based” treatments had principals of behavior analysis to them.
“It (the study) supports the work we’ve always sort of felt in our hearts,” she said.
ABA finds itself among a host of intervention treatments that Peterson refers to as “pseudo-science fad therapies” lacking significant research.
“It’s probably not possible to quantify (the number of different interventions for autism),” she said. “They’re popping up everyday. We (behavior analysts) find it amusing and frustrating at the same time. It’s like, what’s online today?”
Frustrating, she said, because the public quickly latches on to these new therapies. On top of that: “Behavior analysis isn’t recognized as a billable service through insurance companies or Medicaid. If families want it, they are often paying out of their own pocket.”
Peterson said ABA is often misinterpreted as a “rigid, routine, inflexible and aversive treatment” that punishes children for not acting a certain way. “I think we have a little bit to overcome with that cultural misunderstanding.”
While Rulison said there seems to be a gap in the availability of board certified behavior analysts in Mid-Michigan, they are here. The Behavior Analyst Certification Board has a searchable database of certified behavior analysts throughout the state.
Rulison talks enthusiastically about ABA’s potential, especially if it becomes more cost effective for families. Ryder interacts “great” with his older brother Mason, she said. He is integrated into the Ovid-Elsie public school system. Rulison said ABA’s proven track record and early application makes all the difference.
“I tend to focus on things that have data supporting them,” she said.