An article in the December Pediatrics examines the health care experiences of families with autistic children in the US. Researchers looked at a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs; the children’s needs were “physical and mental,” and required medical care that was more than usual, yesterday’s Associated Press (via AZ Central) reports. 2,088 children of those children had autism.

The article is entitled A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006, by Michael D. Kogan, Bonnie B. Strickland, Stephen J. Blumberg, Gopal K. Singh, James M. Perrin, Peter C. van Dyck. The Associated Press notes that

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids’ health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

Jacquie Mace, the mother of a 12-year-old autistic son, Austin, is quoted as saying that she spends “‘easily $15,000 to $20,000 out of pocket’” for her son; she’s still “working to pay off a $7,000 bill” for dental work for Austin, who required sedation and hospitalization as he is not able to sit in the dentist’s chair.

The topic of the “financial strain” on families to take care of an autistic child or relative is frequently noted, and perhaps even more in a time of economic uncertainty. A 2006 book, Understanding Autism: From Basic Neuroscience to Treatment by Michael Ganz, Adjunct Assistant Professor of Society, Human Development, and Health at the Harvard School of Public Health, estimated that it costs $32 million to take care of an autistic person over the course of her or his lifetime; some $29,000 plus for “direct medical costs, such as physician and outpatient services, prescription medication, and behavioral therapies” for an autistic person per year; some $38,000 to $43,000 for “direct non-medical costs, such as special education, camps, and child care” per year.

Those are big, and scary numbers. We’ve certainly spent a lot on Charlie’s education and medical needs. The dentist who Charlie’s grown familiar with is not covered by our insurance plan. When Charlie was younger, he did a lot of in-home ABA, verbal behavior, and speech therapy and we’ve always paid babysitters extra. And then there’s the lawyer, and more, and the reality that the jobs that Charlie will work at when he’s older are most likely not going to be high-paying.

And yet: If Charlie had not been autistic, I suspect there’d still have been plenty of “costs,” from childcare to camp to college to who knows what. According to 2007 USDA figures on Expeditures on Children by Families, families spend almost $300,000 from when a child is born to when he or she turns 17.

Talk about costs, while inevitable, can veer into talking about the “burden” of taking care of a disabled child, of a child who has “extra” needs and who may need care and support for much longer than a child who’s not disabled. While we’ve had our full share of difficult moments in trying to do our best by Charlie, taking care of him’s no burden. Sure we’ve had to give some things up, but the gains continue to outweigh any losses. We’ve gained much much more than we’ve ever spent, in dollars or in energy, in being Charlie’s parents—-life with Charlie is, simply, priceless.

I’ve a couple of ideas for posts about topics like prenatal genetic testing, vaccines and more about vaccines, gestation and future health problems and the like but since it’s getting later in the evening (out here on the East Coast) I’m just going to reference an article from no less august a body than the Style section of last Sunday’s New York Times and specifically an article on how the economic crisis is affecting teens whose parents have never been able to say, no, you don’t need more Abercrombie. Given the near-constant talk about the “cost” of raising a special needs and specifically an autistic child, I just wanted to note that Charlie’s never been one for having anything that’s “the latest,” whether it’s clothing, electronics, tsotchkes to hang on his backpack, a particular style of sneaker. He’s easy-going about whatever he wears (not that my mom doesn’t make sure he’s well-attired) and honestly asks for little—ok, some Vietnamese spring rolls and a swim in the ocean but the former is good cheap eats and the latter, well, believe it or not, if you know where to go the ocean is still, indeed, free.

And watching Charlie swim in it beats all the razzle-dazzle fireworks of any gizmo peddled at the mall.

Said NBC’s chief medical editor, Dr. Nancy Snyderman, during a recent Today show segment on Missouri families seeking insurance coverage for autism treatments:

“The burden right now is on the parents and I think most Americans would say that’s not fair because the goal has to be intensive treatment early and get these kids into mainstream school.”

Certainly many families struggle (and then some) to pay for therapies for their children (though thinking about autistic children solely in terms of the “cost to society” emphasizes that they are “burdens” and overlooks all they can contribute, if given the chance). But while integrating and including autistic and special needs kids in classes and schools are essential, mainstreaming is not necessarily a goal in and of itself for every child all the time. I wish my son could attend classes with the middle school students his age: He’s currently in a self-contained autism classroom located in our town’s middle school. His academic skills are not at the same “level” as his same-aged peers and, at this point, his time in school seems best spent teaching him in the individualized and highly structured ways that he best learns with.

But Charlie and his classmates’ presence in a local public school and efforts to make sure they are fully part of the community—-that’s more than a goal. That’s the way it needs to be.

The April 14th St. Louis Post-Dispatch makes a case for the need for insurance coverage for autism treatment. SB 1122 would allow for insurance coverage “for the treatment of autism under certain conditions”: Autistic children who are “less than 16 years of age” would qualify for up to $50,000 per year of behavior therapy. St. Louis Post-Dispatch notes that one family, Molly and Steve Schad whose 7-year-old son Harry is autistic, have spent about $60,000 in treatments over the past 5 years. They have refinanced their home “several times,” borrowed from Molly Schad’s parents, and may have to sell her engagement ring.

Dr. Wayne Meyer, medical director of Anthem Blue Cross Blue Shield of Missouri, is interviewed:

…….Studies that show benefit from these therapies have flaws, Meyer said. He doesn’t see enough research that show more intensive therapies working better than less intensive ones.

Still he understands parents’ frustration. “If I had a child with this, I might feel the same way,” Meyer said.

“If we could, we’d pay for everything,” he said. “We’re paying for what we can.”

I can’t of course speak for Meyer, but I kind of suspect that most parents of autistic children do feel they have to do everything they can to help their child do the best she or he can, whatever it costs and the general effect on one’s finances and income.

Here’s a Missouri Autism Legislation Overview by G. K. Luetkemeyer, who includes a list of all the Missouri bills concerning autism. And here’s more about autism legislation in some other states:

• Florida
• Arizona
• California
• Wisconsin
• New Jersey
• Oklahoma
• Colorado 9and Gov. Bill Ritter signed SB 163 into law on April 14, to establish a 24-member Colorado Autism Commission)