The High Cost of Autism: One Parent's Tale

Having an autistic child can be as big a challenge financially as it can be psychologically.

Parents often spend thousands of dollars in the hopes, fleeting as they may be, of finding a cure for the exasperating illness. Autism Spectrum Disorders are developmental disabilities that affect one out of 110 children -- a number that includes my four-year-old son, Jacob.

My wife and I are lucky that Jacob is defined in the autism world as "high functioning." That's medical jargon for "not too bad, all things considered." But like all autistic kids, he can have issues with change. Transitions from one activity to another can be problematic, particularly when things go awry.

Jacob once nearly had a meltdown when my wife said she might have to drive him to school because his bus was late. That "crisis" was averted when the bus eventually showed up. Turns out it was driven by a substitute, and that change freaked out other autistic children -- who refused to board the bus. Scientists are trying to figure out why autistic people are so rigid in their thinking and why the disease affects mostly boys.

Taking Out Second Mortgages

Having an autistic child can present seemingly nonstop challenges for families as the constant stress takes its toll. But the notion that parents of autistic children have a divorce rate of 80% was proven to be a myth in research released last year.

Still, I can understand why families take out second mortgages to pay for costly and controversial therapies and diets, even though many experts are skeptical that treatments like chelation and hyperbaric chambers truly work. I can even sympathize with those who cling to the now-discredited notion that autism is somehow connected to vaccines. However, not vaccinating your children against childhood diseases is about as reckless an act that a parent can undertake.

Jacob's quirks and obsessions are manageable, most of the time. Nonetheless, he needs assistance beyond what he already gets from his excellent public school program -- and that assistance can come at a steep price. A weekly series of $160-an-hour, private occupational therapy sessions have done wonders for Jacob, but they're not covered by our health insurance.

We are lucky, however, because we live in New Jersey -- one of the leading states when it comes to autism services. Many parents elsewhere in the U.S. wind up paying out of their own pockets for programs we get for free.

An Unmet Demand for More Doctors

And the costs associated with autism continue to grow. "The lifetime health care costs for a person with autism have been estimated to be more than $1.6 million, and the estimated total expense burden to the health care system associated with ASD [Autism Spectrum Disorders] rose 142% from 2000 to 2004," according to a 2009 study published in the journal Pediatrics.

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Given the huge spike in autism diagnoses over the past few years, demand for doctors who work with the illness is surging. Our school district suggested we hire a specialist to monitor Jacob's progress. But in our region the wait times for such doctors now approaches three years at some hospitals.

"It's awful," says Dr. Susan Hyman, division chief of neurodevelopmental and behavioral pediatrics at Golisano Children's Hospital at the University of Rochester Medical Center. She's one of several hundred doctors in the U.S. who are experts in autism. The wait time for appointments at her office is several months, but she notes her specialty attracts few residents. "What we do is not glamorous, but l sure have talked a lot of parents thorough toilet training," she says. "My product is my time and my expertise. I can't make more of that."

Jacob's overall prognosis is excellent. His teachers are optimistic that he'll eventually be mainstreamed into the public school system. Several days ago, Philadelphia's NBC-10 used the term, "a lifetime of misery" to describe autism in a promo for a news report. That TV station couldn't have been more wrong. My son is pretty happy, as are many of the autistic children I have met.

But they can easily be misunderstood and in turn misunderstand the world around them. Making sure he has the tools he needs to be a success in life is a cost my wife and I will gladly shoulder.