Well Being

David Kirby on “there is no autism epidemic” and Autism Vox on his rhetoric

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“Columbus was not in the Indies, mercury doesn't cause autism, and there is no autism epidemic.”

David Kirby, author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic – A Medical Controversy, wrote that in the provocatively titled There is no autism epidemic in today's Huffington Post. Kirby, noting that he has been “vilified” by those who “insist that mercury does not cause autism, that autism is a stable genetic condition, and that it cannot be an ‘epidemic,'” proclaims that he wishes to start the New Year with a “truce” in the form of acknowledging “a movement that refers to itself as the ‘neurodiversity' community” (the quotation marks around “neurodiversity” are Kirby's).

Kirby defines this “movement” as composed of adults with autism and primarily with Asperger's syndrome who “argue passionately that autism is neither a disease nor a disorder, but rather a natural and special variation of the chance genetic imprint left upon human behavior.” Further, Kirby states, the members of this “movement” of the “neurodiverse” (on which neologism neologism see Left Brain/Right Brain) have high-functioning autism; those with Asperger's have “very high functioning autism.”

Kirby then contrasts these high-functioning neurodiverse autistic adults with autistic children who rather (says Kirby) “suffer from some other condition entirely.” The particular challenges of these children are detailed in a list of increasingly severe symptoms and behaviors: These are kids who “may never learn to read, write, tie their shoes or fall in love”; who “have bitten their mother so hard and so often, they are on a first name basis at the emergency room”; who “spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don't even realize it when their dad comes home from work.” These are the kids whom Kirby “wants” to see cured, but not from autism—–Kirby suggests that these kids do not have autism, if this word refers to what those high functioning “neurodiverse” have. (He even proposes, only half-jokingly, that this new non-autism disorder be called “Environmentally-acquired Neuroimmune Disorder” or “E.N.D.,” an acronym that he proceeds to pun on.)

Kirby's distinction between “high functioning” autistic adults and adults with Asperger's syndrome as thoroughly different—in their abilities if not in their diagnosis—and those with “low functioning” or “severe” autism (especially those who are non-verbal children with aggressive and self-injurious behaviors) is one that I have been hearing a lot of. Autism Speaks Senior Vice President Alison Singer made the same distinction in her article, ‘Cure' is Not a Four-Letter Word; Portia Iversen makes it on p. 376 (in the last few pages) of her book Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism:

“We didn't come out for the [CAN fundraising] walk to show our pride, there was no upside to having autism unless you were the very highest functioning type.”

[Update: Portia Iversen will be speaking on “Air Talk” with Larry Mantle today from 11:30AM – 12noon (89.3 KPCC, Pasadena)]

It seems that Iversen, Singer, and Kirby are presenting arguments for the dismantling of the notion of the “autism spectrum,” in which those with autism are seen as having certain similar impairments (in communication, social ability, and behavior) but at different levels of severity. Iversen hypothesizes that there are two types of autism, one auditory (and found among those who are “low functioning”) and one visual (and found among those who are “high-functioning”). Singer writes that “classic autism” is at the end of a “too wide” spectrum, at the far end of which is Asperger's. Kirby cordons off “the neurodiverse” from those children suffering from “E.N.D.”

I see why some feel a need to divide—to splinter—up autism into different types, chiefly through the notions of those who are “high functioning” vs. “low functioning.” My autistic son Charlie has minimal speech and I do not doubt that, had he been born in a previous generation, he would have been non-verbal; years of ABA, speech, and other therapies have helped him to talk. Charlie's academic skills point to him having a below-than-average I.Q.. Charlie, as I have written on my weblog Autismland, has self-injurious behaviors in the form of head-banging that became frequent enough in past years that various professionals wanted him to wear a helmet. If I may borrow Kirby's rather graphic language, Charlie sometimes “winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet” (not entirely true, as we do not have a pet, and for reasons mentioned later).

With each passing day I spend with Charlie, I find the terms “high functioning” and “low functioning” less useful and, morever, less relevant to the person who Charlie is growing up to be. These terms position those with Asperger's Syndrome and those with “severe” autism as being at the extreme and opposing ends of the “autism spectrum,” but I think Kirby reveals his limited understanding of autism by focusing on these extremes and making such black and white distinctions between those he deems “high functioning” and those “low functioning.” My son Charlie functions incredibly well if you put him on a bike on hilly trails (he does have to ride with his dad, it is true) or, even more, if he jumps into rough ocean waves—-and put me (I'll say I am a moderately “high functioning” adult in certain settings) on a bike or into those waves, and I will seem “low functioning” indeed. I read and write; Charlie struggles with these immensely. Charlie sings in tune and tells me “all done” as my voice cracks.

It is the case that we have already begun to plan for Charlie not being able to lead an “independent” life, in terms of being able to live on his own and take care of his own affairs. Yet I can see the day (I try to see the day) when Charlie might be able to live in a supported living community such as is run by Friends of Special Needs Children in Fremont, California (and which we visited during a trip to the West Coast). I can see how the simple chores he performs around the house—taking out the garbage, carrying and lifting increasingly heavier loads—might lead to a job someday. I cannot say if he will get married or have children—who can say that of any child, neurodiverse or not?. I know that it would be good for him to live near our extended family; Charlie is my husband Jim's and my only child and being part of a family with its traditions and community will be important for him throughout his life—as it is for any child, whether they wish to embrace those traditions or not. Once upon a time, I bought a sweater with a big orange P for my alma mater and smiled when people teased “maybe he'll go there in your footsteps”: As I wrote more than three years ago in Princeton Alumni Weekly:

As the parent of a child with special needs, my hopes for my son’s future have been rewritten. Charlie will require special education services through his school years. College, driving a car, marriage, grandchildren – these are all uncertainties. In the lives of children like Charlie and Felice, graduation from high school, having friends, and saying “I’m thirsty” are cause for joyous celebration.

What is achievement? What makes a child “perfect”?

Autism, and what an autistic person—even a child who does a number of the “severe behaviors” that Kirby lists in There is no autism epidemic—can do, is a lot more varied than Kirby suggests in his either “high functioning” or “low functioning” portrayal of autism. But, having read Evidence of Harm and some other writing by Kirby on autism, I am not surprised that he writes about autism as being this or that, or that he is now saying (with whatever amounts of irony) that “there is no epidemic.”

In his There is no autism epidemic, Kirby cites the figure of “1 in 104 American boys” being “currently diagnosed with some form of autism spectrum disorder.” This is not quite correct, just as it is not correct to say (as Iversen writes in Strange Son) that “by the time CAN was ten years old [in 2005], 1 in 166 children was being diagnosed with autism” (p. 38): 1 in 166 is the prevalence rate estimated for children who have an autism spectrum disorder, not the number of children actually diagnosed with autism. According to the Autism Speaks website, “in the United States alone, 1 out of 104 boys are suspected of being on the spectrum.” These might seem overly precise distinctions—but it is very different to say that “1 out of 104” boys have autism than to say that those same boys are “suspecting of being on the spectrum.” Saying “1 in 104 American boys” have autism presents a much simpler, and partial, story, but it sure sounds scarey, just like the word “epidemic.”

I quoted Kirby's writing above regarding Charlie sometimes ending “up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet,” and noted that Kirby's example is “not entirely true” for us, because we do not have a pet and I have no favorite carpet. Even more, Kirby's rather purple prose does not really capture what it is like to be finding such “rivers” and “swirls” upon one's own person and one's best work clothes, not to mention everywhere on one's child, toilet, sink, walls, the child's clothes—-and to be laughing and praising one's child because some of the swirl got where it should have and because he has grabbed a Kleenex and is trying to wipe up the mess.

What autism is, and how many persons are autistic, are far more complicated—composed of muddier waters—than rhetoric like Kirby's can express.