Vacation Anxiety (#57)
A bittersweet return from the beach house (#59)

Autism is Treatable and Charlie is Teachable: On Evidence of Harm by David Kirby (#58)

I have been able to read a number of books this summer--a feat that I see as evidence that Charlie has been in a good way, especially as many have been novels, which I last read a lot of when I was nursing Charlie in 1997. The first novel I picked up was Nick Hornby's How To Be Good which is told from the perspective of a doctor, Katie Carr, who first informs David, her husband, that she wants a divorce. Carr's family and professional life become thoroughly unmoored when David invites DJ Good News, a spiritual healer, into their house. David and DJ Good News plot various schemes to right society's wrongs--housing a group of homeless people with the neighbors; having the Carrs' children "befriend" two unwanted souls (an unkempt, boil-noised boy; a gaseous girl)--all the while on the lookout for conspiracy theories in which the haves keep the have-nots down. One evening, David and a bemused Katie leave their children with DJ News as a babysitter for dinner and a movie about an American woman who unearths a shocking cover-up, in which innocent citizens are unknowingly subjected to an environmental hazard caused by Big Business.

Hornby does not give the movie's title, which I suspect is the Erin Brockovich story. Here, thinks Dr. Katie as she plods through her days in a health clinic, is a woman who is clearly doing good, saving people's lives, making a difference.

"Erin Brockovich" has become synonymous with a kind of populist whistle-blower who discovers that some large entity--corporate; government--is harming the lives of innocent citizens and hiding the truth. I was reminded of the movie while reading another book, David Kirby's Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. (The beach house is conducive to reading a lot because--plenty tired by ocean swims and sun--Charlie has been going to sleep by 10pm.) The protagonists of Kirby's book are parents. Lyn Redwood, Sallie Bernard, Liz Birt, Albert Enayati and many others, are on a desperate and impassioned quest to discover the cause of their children's autism. They uncover evidence that mercury poisoning from thimerosal, a preservative used in vaccines, has made their children autistic and that various public and medical agencies seem suspiciously unwilling to acknowledge a connection between thimerosal and an epidemic increase in autism.

Kirby's book puts into narrative a string of events that Jim and I have been aware of since Charlie was diagnosed with autism on July 22, 1999. We were at the Unlocking Autism rally held on the National Mall in April 2000 (pages 106-107). We were still living in St. Paul then and cancelled a few days of Charlie's ABA therapy to fly to Washington, D.C.; I sent in a photo of a not-yet-two-old Charlie, sitting up straight and smiling. The rally coincided with the 2000 Congressional Hearings about the possibility of a mercury/autism connection. Thanks to the Internet, we have been constantly informed about the events in Kirby's book, including the publication of Sallie Bernard et al.'s 2001 Medical Hypothesis article on mercury poisoning and autism, the insertion of the "furtive Lilly rider" (page 441) in which thimerosal was classified as a "component of vaccines, and not an additive or contaminant" (page 235) into the 2002 Homeland Security Act, and the Institute of Medicine's 2004 report on "Vaccines and Autism."

Like the children in Kirby's book, Charlie has had more than his share of gastrointestinal trouble, leading us to think that there is a close connection between the gut and the brain. We have, like the parents in Kirby's book, researched every autism treatment imaginable, including many biomedical therapies from both alternative and traditional medicine. And we have spent a lot of time, energy, and, yes, money on Arielah, Stella, Tara, Kristy, Andrea, Lindsay, Beth, Christie, Kelly, Alecia, Versha, Shiri, Claudette, Alli, Elizabeth, Peggy, Julie, Sara, Kristen, Annemarie, Megan, Holly, Mike, Danielle, Jackie, Miss Greene, Lauren, Sam, our home ABA therapists, speech therapists, and babysitters, who have become part of our family. They and Charlie's teachers have been his magic pill.

No one can definitively claim to know what causes autism. The claim that mercury poisoning from thimerosal makes children become autistic is one theory. Other scientists (at Mt. Sinai School of Medicine and the Autism Research Centre) are investigating the genetics of autism, while others (at the Courchesne Research Lab) conduct research on the unusual neurological wiring of autistic persons. While it is commendable that Kirby takes the experience of parents so much into account, Evidence of Harm displays a limited understanding of what autism is. According to Kirby, the "classic autism" (that Charlie would seem to evince) is one of "a constellation of diseases known as autism spectrum disorder, or ASD" (page 17). Kirby describes some of the children in his book as having "ASD symptoms" other than those of "the most notable cases of classic autism" (page 17). But people speak of autism as a spectrum disorder because ASD individuals present with varied levels of similar social and communicative impairments. It is misleading to make a distinction such as Kirby does.

Kirby distinguishes the traits of those "most notable cases of classic autism" ("children flap their arms, bang their heads, walk on their toes, line things up in rows, or spin in endless circles") from many "other ASD symptoms": "severe social impairment, verbal and nonverbal communication problems, repetitive behaviors, movement disorder, sensory dysfunction, and cognitive impairments" (page 17). As Tara and other autism professionals have pointed out to us, Charlie's head-banging is precisely a sign of his "verbal and nonverbal communication problems"; his lining up of CD's according to the floorboards is one of various "repetitive behaviors" that he engages in instead of the play of typical children. Charlie may hum or flap his arms or run rapidly back and forth in a social situation--when meeting a new person, or seeing someone he likes--as a way of expressing his excitement and joy. He spins and sometimes head-bangs because of his neurological wiring that causes "sensory dysfunction"; he hears things (whistling, a high-pitched tone of voice) louder and more painfully. He has difficulties getting his body to move as his mind directs, as when he raises his hands to catch a ball seconds too late, although his eyes are carefully tracking its movement. Charlie knows he "should not" head-bang but he still does and sometimes seems unable to stop himself. "I've never seen a more remorseful child," Miss Greene once said to me, as we talked about how to teach Charlie not to head-bang.

While I more than identify with the passionate efforts of parents like Lyn Redwood to help their children, Evidence of Harm does not present Charlie's story. According to Kirby, autism is a "hellish, lost world" (page xii) and a "befuddling life" (page xiii) for a "damaged" child (page 180) and for her or his family (e.g., page 76). Charlie is not "damaged." He has always been our perfect child. He is not only able to learn, but more than deserves to be educated to reach his full potential. Charlie learns best in a program that uses ABA, which Kirby briefly discusses. He notes that ABA's critics (not further identified in Kirby's text) "say that it is little better than training a dog" (page 15) and suggests that, in an ABA program, the focus is "on stopping 'bad' behavior more than on academic pursuits" (page 22). While Kirby's opening "Author's Note" states that he does not "endorse the biomedical treatments described in this book" (due to not "enough evidence"), the crucial role of education in treating autism is not sufficiently addressed (and there is significant evidence that ABA's effectiveness teaching many autistic children). The main characters in Evidence of Harm beside the autism parents are medical researchers, scientists, and public health and government officials, but not the autistic children and certainly not the Stellas and the Miss Kathys who have been there for Charlie and us over these past six years.

Jim and I are both "in the education business" and, in our experience, teaching is a slow process. A student learns to write a good essay with a clear thesis statement, thoughtful use of evidence, and carefully-honed argument over the course of several weeks and months (at least). A student arrives at certain insights into the place of John Coltrane or The Honeymooners in 20th century American culture after reading books, listening to lectures, speaking up in discussion sections, gabbing at 3:33am with a roommate instead of studying for an economics test. I have yet to meet a student who has not sighed that they could not just swallow some magic potion that would enable them to, lickety split, memorize a list of vocabulary words, or write the A+ paper, or explain Plato's epistemology in relation to ancient Greek society. While the subject matter of Charlie's sessions is saying "baby sits" vs. "mommy stands" and taking his turn in Candyland, his learning process takes place at a similarly gradual, day-by-day, moment-by-moment rate. How often have I counseled a worried twentysomething-year-old as she or he worried that they are "not really helping Charlie": It's the time you spend, and how hard you're trying, I say. Charlie knows you are trying, and how much you care. Teaching happens over time and, due to the neurological make-up he was born with, some things--reading; using verbs in complete sentences; saying "I'm fine" clearly and at the right time--are colossal challenges for Charlie. His best teachers and therapists have always been willing to hold his hand and teach and try again.

As I have written here, life with autism is certainly not easy and very often painful and sad. Charlie is not the "typical" 8-year-old boy on the beach. But there is no controversy about one thing: However neurologically disabled, however different, Charlie is not flawed. Charlie always bring good news into our lives. His story is a book that keeps getting written every day, and one that I always have time to read.


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