O'HANLON and SPELMAN: Autism agenda beckons
Michael O'Hanlon and Stuart Spelman
Wednesday, October 29, 2008
In their last debate, Barack Obama and John McCain both graciously expressed concern about children with autism.
Mr. Obama in particular then spoke about the need for more research funding to understand the causes of this prevalent handicap. We concur. But that is hardly the extent of what the candidates need to understand about the state of autism in the United States today. Preventing future cases is crucial, but so is addressing the huge unmet needs of the more than 1 million Americans already afflicted.
Here's an example. At age 2, little Olivia was diagnosed with an autism disorder. Unable to speak, she preferred to sit in the corner of the room and repeatedly push her mini-Ferris Wheel hundreds of times in a row. She did not look people in the eye; she did not try to attract their attention by pointing with her index finger like normal toddlers. She was largely oblivious to, and uninterested in, other kids around her. She even lost the three or four words that she had learned the year before.
Four years later, after 30 hours a week of a type of intensive intervention that resembles speech or occupational therapy, Olivia was in regular kindergarten, following class discussions and interacting with her peers. She still was limited in her use of language, and had trouble keeping up with peers socially - but at least she was imitating and learning from her peers. Her future was still very uncertain. But her prospects for graduating from school, holding a job and having at least some real friendships had gone from nil to rather promising.
Those four years of preschool intervention came at a high price - about $75,000 a year. Medical insurance paid for none of it. Claiming that the therapies, which fell under the general billing of applied behavior analysis or ABA, were still "experimental," Olivia's insurance plan flatly denied coverage. Counting on the fact that mental and cognitive ailments have often been viewed as second-class issues by America's health care system, the insurer was confident it could escape with this bogus excuse. That was the case even though the National Academy of Sciences, American Academy of Pediatrics, and other key organizations endorse precisely the therapy regimen that Olivia followed - and even though ABA has been repeatedly shown to help up to half of all children with autism wind up mainstreamed in school, with the other half showing major progress as well.
It is time for this to change. We still don't know what causes autism. There are probably multiple causes, mixes of genes and environmental factors expressed in unique ways. Autism often is related to a number of other specific medical issues such as major digestion-system difficulties and seizure disorders. Whether Olivia's problem is viewed as mental or medical or both, any treatment addressing it and meeting scientific standards for effectiveness should qualify for insurance coverage - no less than for someone whose brain had been injured by a car accident or stroke or brain tumor.
To be sure, ABA is expensive. But the $300,000 that Olivia's treatment required compares to the expected tab to government of well more than $1 million for a lifetime of unemployment - or several million for a lifetime of institutionalization. Given that 25,000 American kids a year are diagnosed with an autism disorder, such treatments could add hundreds of millions of dollars a year to the costs of insurers - real money, but by any estimate well under half a percent of current U.S. health-care expenditures.
Look at it a different way. If parents of a kid like Olivia are working-class, and also committed to do the best for their kid like most parents, an autism diagnosis will present them with a Hobson's choice: go deeply into debt to fund that $300,000 themselves or deprive their child of most therapy until she becomes the ward of the state educational system at around age 6. Unfortunately, the latter course is probably a prescription for abandoning most hope for Olivia's improvement, since the early intervention years are so crucial and since autism requires tailored, special therapies rather than the general special education that most school districts provide.
No doubt, ABA and other autism therapies have their limitations. But who would deny treatment to a cancer patient just because the prospects for survival are no better than 50 percent? And who would deny an accident victim intensive therapies just because he or she may never recover fully?
To date, only seven states - Indiana, Texas, South Carolina, Arizona, Florida, Louisiana and Pennsylvania - have mandated that ABA be reimbursed under private health insurance plans within their jurisdictions. It is time for that to change. It is also time for the federal government to do its part by way of setting a good example. Specifically, the Office of Personnel Management should follow the military's lead in insisting that federal health plans reimburse for autism therapy. If our nation's armed forces can, at a time of war, find the compassion and the means to take care of children with autism, so should the rest of us.
Mr. Obama and Mr. McCain are right about the importance of research, but we need not wait for more investigations to do right by those already suffering from this severe yet treatable challenge.
Michael O'Hanlon is a senior fellow at the Brookings Institution. Stuart Spielman is an analyst at Autism Speaks. Both men have children on the autism spectrum.