Insurance, Uncertainty, Acceptance

The optometrist that Charlie saw this week—and many of the doctors and the dentist that we have taken Charlie to over the years—was not covered by our insurance. We’ve filed claims, we’ve refiled, we’ve written cheques. An article in yesterday’s Washington Post describes how families of autistic children in Virginia—as families throughout the US—are seeking to get insurance coverage for treatments for autism, and specifically for ABA. The article notes that “the recommended 40 hours a week of therapy would cost about $14,000 a month” for a family with an autistic 3-year-old and an autistic 2-year-old.

My son did that many hours of home ABA therapy in 1999-2000. Family and our savings account paid for it, and Charlie’s therapy did not cost as much as the figures quoted in the previous paragraph. We could probably have spent that much, but chose to hire college students and a graduate student who were trained and did most of the therapy hours (and were paid much less than the average ABA therapist makes today). We also decided that it was imperative to find a school that could provide Charlie with ABA; it had well-established that Charlie could not attend regular daycare and I wanted to be able to work, at least part-time. Since 2001 when we moved back from the Midwest to New Jersey, Charlie has received most of his ABA in a school setting.

ABA has been a good teaching method for Charlie. That said, I think this is at least in part because we understand ABA’s limits—it’s not about recovery and ABA has a troubled history that continues in some places. When Charlie has struggled to get some skill—speaking in sentences, reading words let alone sentences, doing addition—we’ve come to realize, some big challenges here.

The Washington Post also notes that some parents have tried “experimental — and expensive — treatments” and, anecdotally, seen results. This combination of limited results—what are referred to as “slight improvements,” in some cases, by the Washington Post—and parent accounts of miraculous improvements from alternative treatments can be enough to encourage parents to try the latter:

But families like the Oldhams also say that one of the most frustrating aspects of autism is the lack of proven therapies. Even the applied behavior analysis approved by the surgeon general guarantees only slight improvements.

The Oldhams said they cannot help but wonder whether other, more experimental techniques could improve their sons’ lives. At the end of the summer, the family will explore that option by visiting a group of doctors in New York, paying $1,500 for testing

We’ve known plenty of families who’ve traveled across the country to consult “some particular” doctor about alternative treatments (after the inevitable “testing”), and then made repeated trips back to this one particular doctor over a couple of years; those costs add up. A weblog named “Lend 4 Health” says that its aims is to “facilitate the biomedical treatment of children and adults with autism spectrum disorders (or other related issues) through community-based, interest-free ‘micro-loans,’” and cites as a model Kiva, “the world’s first person-to-person micro-lending website, empowering individuals to lend directly to unique entrepreneurs in the developing world.”

I know now that much of the vitamin goo, and woo, that tried for Charlie was well-intentioned, but minimally (if at all) effective. And I also have a sense of some of the emotions fueling these sorts of choices—to have one’s disabled child undergo experimental treatments: You really do feel, you have to try everything.

But I really have learned that hope starts with acceptance and sometimes all the trying of this that and every sort of treatment is a kind of denial of the reality of the disabled, different child one has pacing the living room carpet. I’ve learned that pacing calms Charlie down and is one of the ways he tries to allay the anxiety that he can’t, so often, communicate to us. I’ve learned that, I don’t need to prove that I’m an authentic autism mom by trying every last treatment ever known to humankind, I need to be a good mother to my own boy, and that starts with the priceless work of accepting and understanding him.

Which is, perhaps, easier said than done.