• Wed, Mar 21 2007

It is what it is: Autism Not Just in the Head

Autism as represented in “Autism: It’s Not Just in the Head,” an April 2007 Discover Magazine article by Jill Neimark is a strictly biomedical disorder:

The condition, traditionally seen as genetic and originating in the brain, is starting to be viewed in a broader and verydifferent light, as a possible immune and neuroinflammatory disorder. As a result, autism is beginning to look like a condition that can, in some and perhaps many cases, be successfully treated.

The treatments mentioned in the course of the article include chelation, supplements such as trimethylglycine, “unconventional nutritional therapies” and “drugs to fight viruses and quell inflammation.” Aside from some brief references to speech and occupational therapy, barely any mention is made of educational approaches for autistic children and the word “special education” is not used. “The devastating derangements of autism also show up in the gut and in the immune system. That unexpected discovery is sparking new treatments that target the body in addition to the brain” proclaims the lead-in sentences to the article. These two sentences indeed provide the reader with a clear and simple sense of how “autism” will be represented in what follows: It is “devastating” and is characterized by some sorts of “derangements,” which are not only of the kind “in the head” but are “gut and immune system derangements” as well. These additional derangements in the rest of the body are an “unexpected discovery” that has led the way to “new treatments.”

Notable is the contrasting portrayal of parents, desperate and despondent (Erin Griffin of Colorado is quoted as saying “‘When your child gets a diagnosis of autism, you lose the child you were dreaming about, the one who will go to college, get married, become a parent’”) with that of medical practitioners who, in the manner of revolutionaries, are going against mainstream medicine and indeed daring to research “novel strategies to help autistic patients” and even to reconceptualize what autism is. The Discover Magazine article opens with Griffin noting days when she wanted to kill herself in her own garage with the car running; later, the sad case of another mother who “killed herself after seeking every possible treatment for her autistic daughter to no avail” is cited. In contrast, practitioners who offer alternative treatments and views of autism are compassionate and capable, and are depicted as wholly responsive to the needs (the biomedical ones) of autistic children. Neimark writes of “highly unconventional molecular biologist and naturopath” Amy Yasko:

Her program is intensive and steeped in molecular biology; her twice-yearly conferences are extremely dense, scientific, and intended to help parents become at least semiproficient in the biology and chemistry themselves. It is a far cry from the old doctor-patient model–Yasko works primarily on the internet now — with phone consultations, to interpret test results. She decided to do this when her waiting list for individuals stretched to five years, and, she says, she felt she was not helping enough children.

(It is not clear from the Discover Magazine article how often patients are actually seen by Yasko. Some families, as I understand it, consult primarily via phone and the internet with their practitioners regarding their children’s biomedical treatment protocols, with twice-a-year or so in-person appointments.)

The Discover Magazine article highlights the research of Harvard pediatric neurologist Martha Herbert, who reconceptualizes autism not “as a disorder of the brain but as a disorder that affects the brain” and in terms of a “full-body perspective.” She says:

“What I believe is happening is that genes and environment interact, either in a fetus or young child, changing cellular function allover the body, which then affects tissue and metabolism in many vulnerable organs. And its the interaction of this collection of troubles that leads to altered sensory processing and impaired coordination in the brain. A brain with these kinds of problems produces the abnormal behaviors that we call autism.”

As Neimark writes (using something of a militaristic metaphor such as one sees often in descriptions of autism), “a vivid analogy is that genes load the gun, but environment pulls the trigger.” Herbert, who also holds a Ph.D. from the program in the History of Consciousness from the University of California-Santa Cruz, also compares autism to a hologram: “‘Everything that fascinates me is in it. It’s got epidemiology, toxicology, philosophy of science, biochemistry, genetics, systems theory, the collapse of the medical system, and the failure of managed care.’” The Discover Magazine article indeed summarizes research studies from a number of these fields—Herbert’s own research in morphometric brain imaging, neurologist Carlos Pardo’s research on inflammation in immune-responsive brain cells of autistic patients, neuroscientist Pat Levitt noting that a “common variant of a gene called MET double the risk of autism”—-and builds up to the “provocative research” of Jill James on autistic children having a glutathione deficiency.

Glutathione infusions via IV are one of the “novel” biomedical treatment strategies administed to autistic children. Of the three children mentioned in the Discover Magazine article, one, Joshua Beck, is said to no longer meet the criteria for autism as (thanks to chelation and other unspecified biomedical remedies) he is “responsive, curious, and active, able to engage in the test without a problem, able to express himself clearly.” Erin Griffin’s two autistic sons, Brendan and Kyle, are not cured but, thanks to a combination of biomedical methods and “mainstream treatments” (speech and occupational therapy), “the incessant tantrums, digestive problems, and infections have vanished.” Writer Neimark describes her own meeting with the family:

Kyle, who stopped speaking entirely at age 2, is now a font of creative language. I know this because Erin and the boys spent a weekend at my house. At lunch, Kyle poured a Vesuvius of ketchup onto his plate and began transforming his french fries into boats that sailed across the ketchup before they were disposed of in his mouth; he then began to entertain us by pretending he was an announcer at a regatta, where he, of course, was winning the race. What had once been autism had erupted into a geyser of quirky creativity.

The allaying of the Griffin brothers’ digestive issues can only have increased their health and physical well-being but this out-of-the-box creativity—far from suggesting that someone is not autistic—says much about what autism is, and indeed much more than descriptions of “the latest” research and treatments can. (Thus do teachers and therapists who work for many hours one-on-one with a child know them well.) Tantrums per se are no hallmark of autism (but perhaps of childhood) and I am not so sure that the “geyser of quirky creativity” that Neimark describes Kyle exhibiting is, rather than a sign of “what once was autism,” but rather a cheerful scene of an autistic child, “quirky” and “creative” indeed, eating french fries drawn through a pool of ketchup. Far from needing to cajole a “mysteriously shuttered brain and body back toward normal” as Neimark notes at the end of the Discover Magazine, why not, biomedical and health issues ameliorated, foster that “quirky creativity”?

Autism is indeed “not just in the head.” It is what it is.

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  • MARIA LUJAN

    Hi Kristina
    You say
    Autism is indeed “not just in the head.” It is what it is.

    Yes, by far more complex genetically, epigenetically, transcriptionally, metabolically and biochemicaaly than previous thought.
    I would not say, from what you posted, that the article said that is a strictly biomedical disorder for all. From what I read, again there is some use of the words that is confusing, but it does not change the things.

    The treatment of the concomitant medical problems (CMP) to a diagnosis of ASD is important because it involves the life´s quality. How these treatments that ameliorate CMP are related to the autism itself it will be matter of research the next 30 years? BUT when you have concomitant biochemical/ metabolic changes with behavioral changes- many times- this is not coincidence everytime everywhere-internationally- even when it can be anecdotical. And the sum of the anecdotes, matter, at least as to consider the proper research of the why/how. And this is unfortunately lacking.

    What I have problems with is in the discussion of all these as treatments of “autism” and I agree-FOR NOW;-; but it is the same problem I have with ABA,IBI, tEACH, etc.These are educational tools.
    Biomedical treatments are for me, for now, treatments of CMP (when safe and properly tested/diagnosed) that impact autism in a very individual way many times with changes in behavior/well being/happiness (yes, first hand unexpected experience; unexpected because there were no scientific reports about).

  • http://www.freespaces.com/abc123/1/SaveMyFamily.html Donna Vallone

    Check into bio chemical, like thimersol 50% mercury given in infant & youth shots from 1989 to 2003 and unsed before for other things unknown.

  • http://spanglishlife.blogspot.com/ natalia

    ok the best thing i got out of this article is that next time i call in sick for work i will have a sonorous and accurate description to provide: “Devastating Digestive Derangements”.

  • Marcie

    “I am not so sure that the “geyser of quirky creativity” that Neimark describes Kyle exhibiting is, rather than a sign of “what once was autism,” but rather a cheerful scene of an autistic child, “quirky” and “creative” indeed, eating french fries drawn through a pool of ketchup”

    Oh on, autistic children are *never* quirky. ;-)

    Of course, if it’s “bad” then it’s considered autism; if it’s “good” then it’s not autism.

    On a slightly different note: Kristina, this reminds me of Charlie’s “Plate Full of Ketchups”

  • C

    What’s with these Moms wanting to end their lives?!? Do parents of children with other special needs entertain suicide? Having a daughter with autism I too sometimes fear for my child’s future but plotting my own demise is not on my to do list. That poor woman needs some help!

  • http://usal-muaddib.livejournal.com Usal

    Wow, I must say she got it very wrong on thinking Kyle is no longer autistic. I’d be willing to bet that the changes in him have NOTHING to do with the treatment, but is just him growing up. The description of the conversation and the ketchup could very easily have come from my own past.

    This smells like junk science to me.

  • http://usal-muaddib.livejournal.com Usal

    Donna,

    I was long done with my shots before thimersol was used. I also showed signs of being autistic before I’d had enough shots to suspect those as the cause of my autism.

    Then when you look at the father, grand father and great grandfather that I am very similar to, it’s hard to believe that something recent is the cause of autism.

  • http://www.autismvox.com Kristina Chew, PhD

    Marcie, I did really think of Charlie at the thought of enough ketchup for “fry boats” to swim through in a regatta…… For some reason, the notion of Charlie doing better simply as a result of “just him growing up” always seemed hard to believe. I guess a parent can’t help but to feel he or she has always to do something…..

    The opening of the article really troubled me and the mention of other mother later. Why discuss this?

    María, yes, my sense was that the article describes autism as genetic and biomedical; the treatments mentioned are biomedical. There’s plenty of contention about teaching methodologies I suppose one can hardly be surprised there are, too, regarding biomedical treatments—-It often seems to me that there is a spectrum here not unlike the notion of the “autism spectrum.”

    “Devastating Digestive Derangements” would be DDD days then………………

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  • http://www.vanmechelen.net Rod Van Mechelen

    Being 54 I was far removed from a time when an accurate diagnosis could have been made of my condition. Do I have Autism of Asperger’s? Hard to tell when the diagnosis depends primarily on childhood behaviors. My psychologist and psychiatrist watched me in session for months before concluding I have an ASD, most probably Asperger’s. Whatever, this I can tell you, most of my life I have spent in a hot flash. Never comfortable, always burning up. I was awash with inflammation. For years I took antioxidants. The only time I felt half okay was after a 90 minute work out when, briefly, the endorphins offered respite. Then a month ago I started eradicating gluten from my diet. I now feel not bad. No more pervasive inflammation. Have the brain issues magically vanished as a result? No, nor would it be realistic to expect that they would unless you believe it’s a simple pathology. Protracted application of an irritant has enduring consequences. Scar tissue accumulates or the flesh in other ways responds. Has my amygdala shrunk? In the absence of the irritant will it now resurge? Do my prefrontal cortices still have communication issues or are they now able to function together in a more typical fashion? Time will tell if the physiological problems correct themselves. In the meantime I am continuing to have my amalgam fillings replaced, I avoid flourine and other neurotoxins, and people around me are responding very positively to the changes in me. I’m more relaxed and my expression and mannerisms now seem inviting rather than threatening to them. That’s nice. I’ve been tired of being alone for a very long time.

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