David kirby plays the segregation game

3 Jan

A truly fascinating start to 2007. David Kirby writes a blog entry entitled ‘There is no autism epidemic’. Why is it fascinating? Two reasons. Firstly, it reveals the lengths David Kirby is willing to go to shift goalposts even further. The entire entry is replete with strawmen arguments. An example – in his opening paragraph, Kirby talks about being vilified by people who who believe that autism is a stable genetic condition and then names the neurodiversity community as amongst his most spirited detractors.

Nobody I know who shares the opinion of neurodiversity believes autism is *only* a stable genetic condition. However, unless we want to throw out what we know about Rett Syndrome then we do have to accept that some of the spectrum of autism is indeed a genetically based condition.

He further describes neurodiversity as a ‘group of adults with autism’. Again, nowhere near accurate. As I wrote about only yesterday, neurodiversity is not specifically associated with autism, neither is it anything other than a fairly nebulous opinion shared by people who think respect and equality matters. Neither is it an opinion not shared by people who are parents of autistic children.

Here’s how Kirby sums up ‘the neurodiverse’:

Most of them, I believe, have what science calls “Asperger’s Syndrome,” or very high functioning autism. From their eloquent and well reasoned point of view, autism has no “cause,” and it certainly requires no “cure.” To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.

No.

Time and time again, the people I speak to who are autistic and who are sharers of the opinion neurodiversity expounds tell me that as children they either were not diagnosed at all and left to rot or diagnosed with low functioning autism. How do I know this? I asked, Mr Kirby, and then I listened to the answer. I didn’t make up any old opinion that suits my argument better. Some, like Amanda Baggs, still _are_ considered low functioning. My Great Uncle was ‘low functioning’ and my Great Aunt was ‘high functioning’ – both were born way before thiomersal was ever around by the way. My Grandma said that her brother-in-law was ‘much worse’ as a child than as an adult. As adults they were able to converse.

The first part of Kirby’s post sets up the second. He is attempting to dismantle the idea of the autistic spectrum and at the same time, corral all ‘the neurodiverse’ into a place where they cannot speak about autism. Here’s the filibuster part of his post in full:

But if that’s autism, then the kids that I have met suffer from some other condition entirely. When I talk about “curing” autism, I am not talking about curing the “neurodiverse.”

I am talking about kids who begin talking and then, suddenly, never say another word.

I’m talking about kids who may never learn to read, write, tie their shoes or fall in love.

I’m talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can’t say what or where it is.

I’m talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of “autism” was pretty).

I’m talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.

I’m talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.

I’m talking about kids 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 I want to see cured. And I don’t believe they have “autism.”

Woah! My daughter very rarely speaks, she’s just on the cusp of learning to write, she can’t tie her shoes, she wakes up regularly in the night (on New Years Eve she got up at half past midnight – not 3am) but she is distinctly burning coal free, she tolerates certain foods very well and refuses to touch other foods, she used to smear faeces regularly on both the carpet, the walls, her bed, us, the cat and she’s had the odd bout of diarrhoea (no one said autism was pretty, right?) – she’s pulled out of my hand on occasion and ran and I’ve followed, heart in mouth, she sometimes has the odd pinch or smack at me if I’ve told her she can’t have something, or I’m not getting what it is she wants, she loves to spin – and bounce (have you see my video Mr Kirby?) and she used to be non-social completely.

So yeah, I know what you’re talking about. Guess what? Its still autism. I still love her just the way she is. I still don’t want to change anything about who she is. I’m happy for her to be autistic.

Here’s what *I* think.

I think you’re goalpost shifting again Mr Kirby. You don’t believe they have autism? So what was the last two years about? Why the constant harping on about the CDDS until it stopped showing you what you wanted it to? Why the sudden panicky need to dismantle the idea of a spectrum of autism? Why redefine? Is redefining easier than explaining why your hypothesis isn’t panning out?

And what’s this about?

Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers

Sounds suitably scary but a) has nothing to do with autism and b) would appear to be partly wrong. And what about this:

There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.

Wow, is this an admission of error? From stating a belief that thiomersal caused autism you are now suggesting that ‘some things’ are making ‘children sick’ – that’s quite a change of heart. Why? Is it so hard for you to say – ‘guys, I was wrong. Back to the drawing board and I’m sorry you wasted your hard earned dosh on my book’.

Here’s something for you to read on the subject of neurodiversity Mr Kirby, I hope the point doesn’t escape you.

On May 19, a small group of people with Down Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents College in London. This is the first time that people with disabilities have spoken out publicly about prenatal screening. Their protest opens up the debate about genetics, eugenics, and the rights of disabled people.

As a result of the protest, the conference organizers allowed Anya Souza to speak from the podium, a platform her group had previously been denied. Ms. Souza, a trustee of the Down Syndrome Association who is labeled as “suffering” from the condition herself, told the doctors why she opposes the screenings.

The protesters found it unacceptable that doctors would discuss better ways of preventing the birth of people with Down Syndrome while excluding the voices of people with that label from the debate. That runs, they said, directly counter to one of the main demands of the disability rights movement: Nothing about us without us.

“We are what we are,” Gilbert [another protester] concluded. “Ask our opinion.”

Do you get the point(s) Mr Kirby? What you are doing by pretending that AS and autism are two different things is taking away the opinion of autistic people. You are doing it without evidence that you are right, without anything other than a ‘hunch’. An MO that is becoming more than a little familiar. You are following the proud tradition of Lenny Schafer and Rick Rollens, who also want to stop autistic adults talking about autistic children being OK just as they are.

Be brighter than them Mr Kirby. Try and understand that no one advocates letting kids suffer painful medical issues but that these things do not, and never did, equate to autism. What you’ve taken away over the last two years from both these adults and the kids of those you call friends and those you don’t is dignity. Nothing about us without us.

Update: Kristina weighs in too and Joel writes a first class piece on proving one is broken. Diva gives us good instructions and spotting autistic people and Do’C and Jospeh ferries across a river of shit.

21 Responses to “David kirby plays the segregation game”

  1. anonimouse January 3, 2007 at 14:20 #

    Kirby needs to send that piece to Salon, so they can publish it as a companion to Robert F. Kennedy Jr’.s treatise on the horrors of autism.

    I wonder when unbiased journalist David Kirby is going to comment on Dr. Wakefield’s foibles – after all, he spoke so glowingly of Andy in his book. You know he’d want to set the record straight….

    BWAHAHAHAHAHA!

    Sorry, had a fit of laughter.

  2. notmercury January 3, 2007 at 14:24 #

    What a blockhead.

    “Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers

    So asthma, diabetes, allergies and arthritis are now part of the spectrum of autism? I guess they’ll include that in DSM-V

    If there is any siginificant association between asthma, arthritis and ASD it is most visible in family members, especially mothers of autistic children. Unless thimerosal is so powerful it travels back in time to cause problems in family members before the chhild is born, it’s probably not the smoking gun Kirby imagines. As for diabetes and autism:

    http://care.diabetesjournals.org/cgi/content/full/29/8/1985-a

    Type 1 Diabetes and Autism Association Seems to Be Linked to the Incidence of Diabetes

    We read with interest the article of Freeman et al. (1) reporting a higher prevalence of autism spectrum disorder in pediatric patients with type 1 diabetes in Toronto than in the general population (0.9% [95% CI 0.3–1.5 vs. 0.34–0.67]).

    The finding was, however, not confirmed by Harijutsalo and Tuomilehto (2), who reported a prevalence of autism spectrum disorders in type 1 diabetic patients similar to that in the population aged Our data seem to confirm the observation that the prevalence of autism in patients with type 1 diabetes is inversely associated to the incidence trends of diabetes in the observed areas. According to Daneman (4), if the relationship between autism and diabetes is based on shared genetic influences, this finding could be explained by the fact that, in areas with higher and rising incidence of type 1 diabetes without a parallel increase of the prevalence of autism, the rise in incidence of diabetes is due to a reduced contribution of high-risk HLA haplotypes (5).

  3. Richard January 3, 2007 at 14:35 #

    Thanks for this moving and accurate reply to Kirby’s never-ending naivete and simplicity. One thing you allude to needs to be appreciated more broadly: just how much people change from childhood to adulthood. This is why, so often, people like Kirby say “Where are all the adults with autism?” It’s because they assume that someone who is “low functioning” as a 3 year old stays that way. Thanks for always offering such clarification. Unfortunately, many readers — like the dozens who thank Kirby after every one of his posts — want the simplist possible answer, and autism, as your blogs continue to show, is extraordinarily complex, both as a genetic/biological and social issue.

    Also, Kirby just has a set image in his mind of what autism is (what he sees as horror — though who knows what his own experience is with the daily life of autism — probably nil). Assuming that autism can be called a “disorder,” what sort of complex “disorder” has just one manifestation? There isn’t one. High blood pressure, asthma, heart disease, cancers, depression, schizophrenia, etc. They all have so many different levels of severity and symptomatology that change over time. So why not autism?

  4. kristina January 3, 2007 at 15:16 #

    It seems that Kirby feels his own dignity is suffering a bit (hence his noting that he has been “vilified”). If he is going to stand by his new pronouncement (“there is no autism epidemic”), something must needs be done about the subtitle of EoH (“mercury in vaccines and the autism epidemic”), one would think…….. This latest piece by him adds to the evidence of the harm his own work has done.

  5. Joseph January 3, 2007 at 21:45 #

    I think Kirby knows he’s going down in flames in a week or so. He’s been posting more lately, and each post is more disturbing and nonsensical that the previous one. Truce? My ass. Here’s my take.

  6. Ms. Clark January 3, 2007 at 22:06 #

    I sent a couple of pdf files of papers showing where the autistic adults, the ones he said did not exist, are, to him a year and a half ago. I tried to tell him that he was abusing autistic adults by saying they didn’t exist. I said, “why don’t you contact some of them?” He replied

    “I will contact some of these adults. Do you think the adult rate might actually be 1-166, with most of them largely now pretty typical? I guess that is possible.”

    I never said that they were largely “now pretty typical.” What do you want to bet that he’s never contacted any autistic adult advocate.

    He’s playing an ugly game, and he knows it.

    I think this is all his little vendetta against the CDC. He may think that Hep B caused the AIDS epidemic, though he says he doesn’t think that. He may just think that the CDC sat on their hands and let the AIDS epidemic take off or maybe he wanted to be hired by them as an AIDS expert and wasn’t… but I sense that he gets a real charge out of sniping at the CDC… he fairly giggles with glee as he jabs them again and again… in my opinion. I could be wrong of course, but he told me he had no personal connection to autism, it wasn’t his “crusade” (his word) and when this gig was up he was moving on.

    Maybe his “crusade” is against the CDC, period.

    He may know about Dr. Grinker’s book and know that there’s no more evidence for an epidemic, never was any, for a fact. But his book states it as a fact and Kirby has smirked publicly at the idea of the “hidden horde” of adults.

  7. Ian Parker January 4, 2007 at 00:19 #

    Just a quick clarification on the asthma point. I’m not suggesting Kev that you’ve said otherwise, but for clarity, the asthma link indicates not that childhood asthma in the U.S. is declining, but rather, that the childhood asthma mortality rate is declining. The CDC report underlying the article indicates that the prevalence of asthma has plateaued, but the “prevalence rates among children remain at historically high levels”. It seems like we’ve just gotten a bit better at managing it, but it definitely ain’t on the decline.

    To be clear, I’m NOT saying that this has any connection whatsoever with autism. It’s just that asthma is an important issue in its own right – and it can be lethal – so it is important that the trends are known and clearly stated.

    Signed,

    Just another (pedantic) asthmatic

  8. Ms. Clark January 4, 2007 at 02:07 #

    As an asthmatic myself, for the last few years and when I was a big headed baby… I say “Cure Asthma Now!” Just because there are increases in some disease doesn’t mean that any disorder one wants to name is also increasing.

  9. bethduckie January 4, 2007 at 10:43 #

    Yeah, my kid has done all those Real Autism (!) things too. Some of them he still does. I just read a similar comment in ‘Daniel Isnt Talking’ saying those who accept autism have never cleaned poop off their carpets. Made me smile wryly, that one.

    ‘Daniel…’ also says that autism acceptance parents like to wear autism as a badge. I suspect more than a few parents like to wear some of their childs more difficult behaviours like a badge. smearing faeces seems to be a big one.

  10. Ballastexistenz January 4, 2007 at 14:46 #

    I haven’t done all of them, but I’ve done a lot of them. And not all of them are attributable to autism at all.

  11. Ruth January 4, 2007 at 18:18 #

    We bought one of those home carpet cleaners about 7 years ago-ASD child is ten. Carpet is nothing, smearing in parents closet, washing nearly every item of clothing you own, will test your patience.

    She now spends most of her day in a regular 4th grade class. Kids grow, they learn. Now she borrows my makeup and fusses with her hair-

  12. Brian Deer January 14, 2007 at 20:31 #

    In case anybody misses it, here’s the key part one of the mercury crowd’s summary report on the Arthur Allen – Kirby debate this weekend. This is their people explaining why the removal of thimerosal from virtually all US vaccines hasn’t been accompanied by any decline in the increasing number of autism diagnoses.

    quote begins:

    “Kirby spent a lot of time explaining the worthlessness of the epidemiologicial studies like Verstaten et. al. The main point that Allen brought up to refute David was that at the end of the day — ASD numbers in California should be going down — and sadly they are not. David brought in the following factors that explain why the numbers have not plummetted in 2007 as he had publically predicted they would.

    1. California has a lot of HMOs (50% of population) who probably continued to use mercury vaccines longer than average.
    2. We do not know when 25 mcg infant vaccines really made it off the shelves. When the CDC says the supply was down to 2% in 2003 (I think that was the stat) it was not official. They called vaccine providers and asked what was in the fridge — not a definitive answer.
    3. Calif has had horrendous forest fires over the last 5 years (much more so than the previous 20), and pregnant women are breathing the fumes. Forrest fires release a lot more mercury than even coal fired power plants.
    4. The horrific coal generated mercury pollution from China (as we have been reading) is getting worse and the mercury by-product is brought into CA (particularly So Cal) from the jet stream. These coal fired power plants have expontially increased since 2000.
    5. The CDC recommended flu shots for pregnant women and infants. As Kirby pointed out, that mercury exposure to an in-utero infant from a flu shot could be as devasting (paraphrasing here) as the entire US vaccine schedule of the 1990s given that an in-utero baby
    is a fraction the size of an infant. Allen refuted this argument that only 25% of California infants get the flu vaccine and only 13% of pregnant women get it.”

    : quote ends.

    Does anybody smell desperation?

  13. Mike Miller January 14, 2007 at 20:57 #

    R u desperate? (or disparate!)

    Do u feel like the fisherman with a biggy on the line?

    mickey

  14. Kev January 14, 2007 at 21:13 #

    Yeah Brian, I read that too. It’s very, very odd. I can’t wait to see the video and I really hope its not been edited in any way but if that’s really what Kirby said then he’s just parading his ignorance.

    Points 1 and 2 can and will be refuted. I don’t want to get into it just yet – wait until the video is released and we can see for sure what Kirby said.

    I have absolutely no idea what points 4 or 5 have to do with thimerosal and/or vaccines. Wasn’t this debate sold as a look at the autism/ _vaccine_ hypothesis?

    Point 5 Mr Allen seems to have taken on already.

    The pre-debate interview on Fox carried a very amusing moment – when Mr Allen mentioned the 2% figure, Kirby was visibly shocked. I’m not surprised he tried to blag it in the actual debate.

  15. Ian Parker January 19, 2007 at 20:43 #

    FWIW, here’s another way to look at talk about ‘crap’, GI issues, and autism.

  16. Kev January 20, 2007 at 00:58 #

    Good points in your post Ian. I must admit that I find the whole thing disconcerting on the level that we are forced by Kirby et al to ‘rate’ the ‘autismness’ of our kids (or ourselves) based on crap, its amount, texture and destination.

  17. Ian Parker January 20, 2007 at 03:47 #

    Thanks Kev.

    I agree with your ‘disconcerting’ point. It’s a funny world when the value of one’s insight is supposed to be directly related to the degree to which they’re full of crap.

    I’m sure there’s a metaphor in there somewhere…

Trackbacks/Pingbacks

  1. Autism Vox » David Kirby on “there is no autism epidemic” and Autism Vox on his rhetoric - January 3, 2007

    […] 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.” […]

  2. Autism Street » Shitstorm 2007 - January 4, 2007

    […] David Kirby and Kim Stagliano have shown their true colors at the Huffington Post blog, and those colors are various shades of feces brown. […]

  3. David Kirby recants? « Action For Autism - January 4, 2007

    […] 4th, 2007 · No Comments Kev, Kristina, Autism Street, Joseph and Autism Diva have already weighed in with comments onDavid Kirby’s latest blog on the Huffington Post. […]

  4. Autism Vox » Diversity, Neurodiversity, and Dictee - January 5, 2007

    […] Strong, and indeed acrimonious, words were leveled at the “movement” of “the neurodiverse,” in the words of David Kirby and of autism mother Kim Stagliano this week, with responses from many a blogger. Among the points of contention is that the notion of the neurodiversity is all well and fine if you are an adult with (as another autism mother puts it) “very high functioning autism”—indeed with Asperger’s Syndrome, specifically—rather than “severe autism” which seems to mean a “low functioning” and non-verbal child (with numerous other challenges, messiest of which are kaka). […]

Comments are closed.

%d bloggers like this: