Autism Vox

Happy Father’s Day: On biological and genetic research

by Kristina Chew, PhD on June 17th, 2007

June 18th is Autistic Pride Day and we were invited to a picnic to celebrate in Central Park. Jim had gone in to work in his office and Charlie and I—in contrast to last Saturday’s travel adventure—took the train and subway up to meet him, and made every connection (except that, walking north on 6th Avenue, we wallked past Jim—on the other side of the street—-without realizing it). The picnic was up around 97th street and we took the subway up to Museum Mile and made our way into the park. The sky had gone grey and, as Charlie ran to climb up on some rocks, the sky crackled thunder—-and Jim hastily got Charlie down from the rocks and went farther into the park, but we could not find the picnic, and the thunder kept sounding and we made our way back to the subway, Charlie rubbing his ever-wetter head. We ended up at his favorite dinner spot, where Charlie became very anxious, scooped himself a large portion of edamame salad and chose a cupcake, and stayed nervous until he dug into his dinner, the plastic dish nicely balanced on his knees.

“I think he must have been hungry,” Jim said.

“You’d think we’d know by now,” I said.

Afterwards, Charlie running ahead to look at the Hudson and west to New Jersey, we walked south to Penn station, and, seeing his pleased and peaceful expression, I noted how he had looked just the same when he was 18 months old walking on the stone floors of the Cathedral of St. Paul in Minnesota. Charlie had been delighted by the sound of his little boots tapping on the floor and I remembered how glad I had been to see him smile as, in those days—-prior to us knowing that Charlie had autism and with each day full of more crying, tantrums, and general unhappiness in our boy, who made no sounds beyond a bit of babble—that smile was rare.

I look back on my worried self—-in December of 1998 we had recently met with Charlie’s daycare teachers and they were both strangely reticent, and edgy, and talked vaguely—I remember feelings of dread and fear: What if there is something wrong with Charlie?. Reading Katie Wright’s statement in the wake of her interview with David Kirby on F.A.I.R. Autism Media made me recall how, when Charlie was younger and we were just learning about biomedical treatments for autism, I remember how, after saying for the first time “Charlie has autism,” I was in such a rush to figure out “what to do.”

In the interview, Katie Wright said that “it is time for them to step aside”—”them” being those familes whose “children have grown.” In her statement, which is currently posted on the National Autism Association (NAA) website, Wright distinguishes between research and resources that are specifically “directed towards helping the children and families living with autism TODAY”; she characterizes these as “therapeutic services and bio-medical interventions.” The pace of research in genetics, she suggests, is slower, and—especially because there are what she refers to as the current “catastrophic numbers” of children with autism—-”the first priority must be investigating therapies and treatment for improving the outcomes for individuals living with autism today.” I quote more fully from her statement:

Despite receiving high quality early intervention, my son lost every word, every skill he ever had within a year of his diagnosis. Christian lived in constant pain for the following two years with a destroyed immune system and endured bouts of severe colitis, pnuemonia, staph, strep and cellulitis, while hardly eating, barely sleeping, only screaming. Tens of thousands of parents are living this nightmare along with me. We are understandably angry at the glacial pace and narrow focus of autism research.

I, like most other parents of autistic children, want to see far greater resources directed towards helping the children and families living with autism TODAY. We immediately need research and assistance on providing therapeutic services and bio-medical interventions. While research into the role of genetics in the development of autism should be continued, this should not occur at the expense of crucial research into environmental factors that are so obviously triggering this epidemic.

A parent cannot disagree with Wright’s wish for “greater resources” to help families today; I write often here of such, though the resources I tend to wish for are in education, in afterschool programs, in babysitting: More than finding out the cause of autism, sometimes one just wants to be able to sit down with a cup of coffee and a book and not have to keep an ear constantly alert to what one’s child might be up too (in my own child’s case, this would mostly be pacing the driveway and roaming under the trees on the front lawn). This wish is not because our life with our autistic son is a “nightmare”; my description of our afternoon in New York City is a quite standard day for us, and I have documented many more on my Autismland weblog.

Wright’s reference that families with older children ought to “step aside” was sadly divisive to me, now the parent of an older child who still has a lot of needs and learning challenges. A child in preschool and in early intervention is going to grow up and become, as Charlie is, an older child with autism (and, too, an adult with autism, one day). Some practitioners of biomedical treatments of autism make claims to the contrary when they say that a child can “recover” from autism and be “cured,” as if autism is some disease of childhood that one can (when properly treated) “get over”; perhaps such a view is coloring Wright’s wish for environmental research that occurs at a less “glacial pace” than genetics research.

Wright’s wish for an accelerated pace of autism research would seem to be borne out by recent developments: At the Eden/Princeton Lecture Series last Friday (June 8th), Dr. Martha Herbert noted that, in the past few years, the number of articles on “biological measures in autism” has increased to the point that it is equal with that in genetics. It does seem to be the case that many parents choose not to wait for research in various autism treatments and causes to occur, and seek out various biomedical treatments, such as chelation, for their children (as it seems Wright has done). While I have found genetics to be a scientific field that my “I’m not a scientist” brain has a harder time grasping, friends like Dr. Hsien-Hsien Lei have helped me to understand genetic research; Hsien’s blog, Eye on DNA, is an excellent source of information (written in layperson’s language) in daily advances in genetics research and in the genomic revolution. Learning about genetics has shed light on what in Charlie is like some aspects of Jim and some aspects of me; has helped me to see the big picture of Charlie as a distinct and unique member of our two families; as very much connected to our families.

Do some express hesitance about genetics research because they prefer not to see autism as something “in the family” but the result of an external, environmental “insult”?

Charlie could not more be one of us.

In wishing all the fathers out there—-and in particular the fathers of autistic children, and the father who are themselves autistic (and my own dad: one of our Charlie’s latest favorite photos to admire is of him, my dad (”Gong Gong”) and Charlie)—a Happy Father’s Day, I also have to salute my lovely boy, as good a son and grandson as ever walked round Manhattan. “Hey sonny boy!” Jim said this evening: Charlie was now holding hands with him, now running ahead and turning to look back at us and, thus reassured, moving forward.

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POSTED IN: Charlisms, Environment, Epidemic, Family, Genetics, Treatment