Subscribe
Previous Post
“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.
I have a problem subscribing to your RSS Feed… It says feed is active, however I never get updates in my feed reader… Any Thoughts?
1391 days ago
[...] rhetorical techniques in contemporary culture, I would offer up many (if not most) of his pieces (like this one); I supposed I could also include some writings by Dan Olmsted. Is it possible that there’s a [...]
1474 days ago
[...] Medical Controversy,” has been offering a number of new monikers for autism, including “Environmentally-acquired Neuroimmune Disorder” (”E.N.D.”) over a year ago and, more recently, “vaccine-aggravated [...]
1501 days ago
[...] “Environmentally-acquired Neuroimmune Disorder” or “E.N.D.”: That was a new term that journalist David Kirby suggested that should be used for autistic children with numerous gastrointestinal problems, over a year ago. [...]
1536 days ago
[...] aggravated mitochondrial disorder” is “mimicking” autism—just as, a year ago, Kirby speculated that what we call “autism” in children with various gastrointestinal [...]
1638 days ago
[...] out, and a plastic bag. Journalist David Kirby has written about autistic kids who leave “rivers of diarrhea” on a favorite carpet: I have, after 10 1/2 years of motherhood, figured about some more [...]
1641 days ago
[...] this in the “autism horror story” existence suggested by journalist David Kirby in a piece last year in the Huffington Post, in which he characterized the experience of autism as that of “kids who may never learn to [...]
I have a severe autistic son named Ryan he is 9 years of age. And as every parent should know there is a difference in every autistic child they are like snowflakes not one is alike. And aspergers syndrome and low functioning autism are different forms of autism. My son has the low functioning autism but is a happy child. And when Ryan was born he was completely healthy his lot number of shots of found to have too much mercury in the MMR and DTaPs and until he received the last batch with that lot number he was growing and developing just like any other child. So i do consider his condition to be from mercury poisoning he has 2 older siblings that are perfectly healthy. So you cant compare one autistic child to the other the only way you can distinguish is if your child has the aspergers syndrome or the low functioning and still then there are different levels mild, moderate, and severe. So its very difficult to advice only can state what you have tried for yourself. As for me i have tried gluten-free, hypobaric chamber (which is 100 percent oxygen stated to improve some of the symptoms of autism) but have no success at the hundreds of things i have tried. Just mainly my son does repetitive not learning to do without commands. But YES AUTISM IS AN EPIDEMIC and no one thing works for all and like i said and the beginning of my long winded comment…lol AUTISTIC PEOPLE KIDS UP INTO ADULTHOOD ARE LIKE A SNOWFLAKE THERE ARE NO 2 PEOPLE WITH THIS DISEASE ALIKE. EVERYONE HAS DIFFERENT THINGS THAT EFFECT THERE CHILD. BUT I HAVE BEEN FIGHTING FOR MY CHILD AND TO KEEP HIM, HAPPY, FED, AND WARM AND MOST OF ALL LOVED!!!!!!!!!! GOD BLESS YOU ALL IN THIS STRUGGLE WE CALL AUTISM. IN MY SONS CASE I LIKE TO CONSIDER HIS DISEASE MERCURY POISONING THAT EFFECTED HIS BRAIN. AS WE ALL KNOW HOW DANGEROUS MECURY IS. PLEASE FOR GOD SAKES GET NON-THERMASOL SHOTS FOR YOUR BABIES TO AT LEAST AVOID THIS HORRIBLE DISEASE. THANKS FOR LISTENING
Ear infections and diarrhea are complications of measles.
1837 days ago
[...] who, back in January of this year, declared, in very tongue in cheek fashion, that there is “no autism epidemic” (vs. this article which says “there is no autism epidemic,” and means [...]
1902 days ago
[...] Dachel structures her op-ed in the usual way that advocates of the mercury-autism theory (such as David Kirby and Dan Olmsted) use: After briefly mentioning an opposing theory in the opening paragraphs, Dachel attempts to show the theory’s “illogical” nature, incorrectness and just plain falseness by presenting an array of statistics and other numbers from an array of sources, and by appealing to our common sense: Surely we are not so….stupid…..not to see the evidence before our eyes, so many—-an epidemic—-of autistic children. [...]
1912 days ago
[...] Unfortunately, one does not usually such a fast, and such a courteous and open-minded, response when trying to point out and expose autism myths. One rather meets some amount of contention, some vilification of various parties, and more than a little strife. When I posted on autism mythology a few days ago, the myths I highlighted were the vaccine-autism connection myth (with Dr. Andrew Wakefield being one of this myth’s key supporters) and the epidemic of autism myth, not to mention the much older myth of the refrigerator mother. Discussion (with opinions strongly expressed) ensued in the comments to my post about something that I do not believe is a myth, and which I will hazard to describe as the “neurodiversity myth” or (as some might rather phrase it) the “neurodiverse” or “ND” “movement.” As I understand it, “neurodiversity” is considered by some (not by me) to be a “myth” because of notions such as (1) autism is a difference and not a disability or disorder and (2) there are many similarities between autistic adults who are “high-functioning” enough so that they can speak, write blogs and books, work, etc. and autistic children who are considered “severe” and “low-functioning” and cannot talk, have many difficult behaviors, etc.. Broadly speaking, those who belief that “neurodiversity is a myth” seek to separate the hfa from the lfa and sometimes claim that these are completely different entities. [...]
Jannalou:
Interesting question. NIDS never merged with DAN and never agreed with the DAN hypothesis. Some old NIDS families are now part of the Neurodiverse moevement, whereas some others moved to DAN. DAN now will give the meds the NIDS docs prescribe, but they don’t follow the “NIDS” protocol (which was simply based on standard protocols for chronic fatigue syndrome). As for NIDS docs, they’ve never been on the DAN bandwagon and seriously doubt they’ll ever go there. NIDS is still around, but their dictator got more difficult for people to deal with and since that procotol was already a known protocol, patients were able to move on, to other docs, if they felt that kind of treatment was helpful. Oh, and the term NIDS, or NEIDS (Neuro-Endocrine-Immune Dysfunction Syndrome), was a term coined by chronic fatigue researchers who worked within a CDC group involved in looking at changing the name of CFS. So, Kirby, ironically and inadvertently took a page from the CDC in using the term “END”.
Signed,
CFS and Neurodiverse
PS Oh, and you can get better from CFS-related illnesses and still be all-the-autie-you-can-be!
I agree, Kyra and Kristina, with that last statement in theory. But…
1) Ammo. Backup. Whatever you want to call it. I don’t want my son’s attention issues treated the same way as a child who has ADD. They don’t come from the same place, they aren’t the same animal. This forces the districts to educate their people appropriately – otherwise, they can lump them all together.
2) One other good thing about having a name for this crap that is going on with our kids is that we have more ability to get proper services. The government has to ante up. The money has to come from somewhere. The taxpayers can’t stand any more burden (not in our rural district) and
To that effect, I was really REALLY glad to see that NJ is making the state pay for autistic kids’ speech and other therapies. That will set a precedent and other states WILL fall in line! :D
wow. right on, kristina. i especially cheer at your last comment!! i too, WISH THERE WOULD BE LESS BICKERING ABOUT WHAT TO CALL AUTISM AND MORE FOCUS ON HOW TO EDUCATE AND TEACH OUR KIDS.
amen, sister. that is it.
I think I remember that—-one wishes there could be less bickering about what to call autism, or what looks like it, and more focus on how to educate and teach our kids.
I wanted to comment on the “END”.
Does nobody remember the kerfuffle there was back about 4/5 years ago, about how autism was a misnomer for “NIDS”? (NIDS=NeuroImmunoDeficiency Syndrome)
There were all kinds of biomedical things you could do to fix it. Quite DAN!ish if you got right into the protocols and such. I do wonder, now, if those theorists gradually merged with the curebies and are a part of the overall problem we’re now dealing with?
Ah, I guess I am in the latter category of Lao Tzu’s words—and hope to keep on learning!
Well, y’know as always there are people who talk the talk and people who walk the walk. If David KIrby wants to position himself as an expert on autism, he really needs to do more than pontificate (which is very good at).
However, I don’t see him as doing ANY good, providing ANY service, adding to ANY research, improving the day to day of one autistic child. Now if he COULD do something besides talk, he WOULD do it, wouldn’t he??
The very fact that he has contributed absolutely nothing but rhetoric is proof of the failure, the absolute fault in both his reasoning and theory.
Things to think about:
Those who know, do not speak. Those who speak, do not know -Lao Tzu
Charlie gets his through all the oranges and fruits and vegetables he eats——his head-banging has gotten better as he has gotten older. He has been able to learn ways to cope and to handle anxiety and frustration, though there are plenty more lessons many of us (myself included) have in those areas, I would hazard.