David Kirby: No friend to my autistic kid

27 Oct

David Kirby is certainly no friend to my autistic child.

I don’t know why I let David Kirby annoy me. It is a pretty safe bet that whenever he blogs he will write something that rubs me the wrong way. Whether it is his clear lack of science acumen or his faux fence sitting “I’m just trying to spark a national debate” ruse, he never fails to write something offensive.

Recently he responded to the very strong possibility that the number of autistic adults is much higher than previously thought with what amounts to essentially, “Autistic adults? Nope, I’ve never seen ’em. They must not exist”.

The right answer in my view would be, “We need to confirm this right now and find out who may be getting no support or the wrong support.” That’s what a friend to my kid would say. By denying the existence of autistic adults Mr. Kirby has shown himself to be about as far from a friend as I could imagine.

In his recent interview with Sharyl Attkisson Mr. Kirby noted that he didn’t see any autistics on the subway or in his neighborhood, therefore there can’t be 1 in 100 autistic adults. Therefore, according to his logic, there is an autism epidemic. Of course he says this is to support the idea that we need to take the vaccine issue seriously.

It was nonsense when he first said it and I pointed it out. I thought that having embarrassed himself on national TV, Mr. Kirby would quietly drop the idea that somehow “I know ’em when I see ’em” is either valid or respectful. I’ve watched Mr. Kirby for too long to even hope that he would apologize or do a real retraction without real pressure but I will say I was surprised to see him write a blog post basically defending his autistic-radar.

In a recent blog post Mr. Kirby has expanded his scope of not-finding autistics. It isn’t just his recent subway ride that was devoid of adult autistics, it is his entire life:

I have lived in many different cities, worked at nine different jobs, and met thousands of men and women throughout my years. I cannot recall people who showed the characteristics of high-functioning autism, though I must have met some along the way, at least in passing. But there were not 1-in-60 boys with ASD in my schools and there are not 1-in-60 men with ASD in my area. I think I would have noticed them by now.

Repeated for emphasis:

I cannot recall people who showed the characteristics of high-functioning autism

In an entire lifetime, no one who might be high-functioning autistic?

David Kirby has been around the autism community for a while now. Somehow I think he must have seen some adult with high functioning autism. Are we to believe that no autistic adults attend the DAN conferences, the Autism One conferences, or the myriad other alternative medicine conferences that hold David Kirby as a hero? Are we to believe that no autistic adult parents of autistic children attend these conferences?

One specific question that popped into my mind: Has Mr. Kirby never been to a conference with Teresa Binstock? Ms. Binstock is one of the authors of Autism: a novel form of mercury poisoning (a faux-journal paper in Medical Hypotheses). Ms. Binstock is also reported to be an autistic adult (Asperger syndrome). Mr. Kirby has never met her? Possible, but unlikely.

According to his interview Mr. Kirby’s criteria for Asperger syndrome are:

“restrictive, repetitive and stereotypical patterns”

“interests and behaviors that are abnormal”

“Repetive motor mannerisms such as hand or finger flapping”

“Significant impairment in social, occupational and other important fuctions”

I guess as Mr. Kirby was passing people on the subway platform he had some test of social functions? He can tell what your interests are (and somehow label them abnormal) just by looking at you?

For Mr. Kirby’s edification, here are the DSM-IV criteria:

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”

Here’s another hint: if diagnosing ASD’s was as simple as a checklist there wouldn’t be tests like the ADOS.

Mr. Kirby continues the old ruse that autistics are so obvious that one couldn’t possibly miss them, even in passing. Contrary to Mr. Kirby’s assertion, it is possible that he could have missed some autsitics in his subway travels. When the autism rate for children in Cambridgeshire was recently reported, the researchers noted that a large fraction (1/5 to 1/3) of autistic students were undiagnosed. Yes, even educational professionals who spend every day with a kid can miss the fact that the child has an ASD.

In his blog post Mr. Kirby bolsters his argument with a quote from Anne Dachel, probably best known to readers here as an blogger at the Age of Autism. Ms. Dachel states:

“an insult to thousands of teachers and counselors and doctors – who apparently ‘stupidly’ ignored these kids in the past. If they were always here, but we just called them something else, then what did we do with them?”

I am always saddened when an educator like Ms. Dachel confuses intelligence with knowledge. Intelligence (smart/stupid) is not the same thing as knowledge (or ignorance). When previous generations didn’t diagnose a child with an ASD there were many reasons. One big reason–the diagnostic criteria were different then. That is and example of ignorance. I feel silly pointing this out to an educator, but in 1980 they didn’t know (in fact couldn’t know) that the diagnostic criteria would be different in 2000. How many times have we heard, “autism wasn’t covered in medical school back then”? This is used to “show” that autism was rare then. Well, if they didn’t get the training, they were very likely ignorant of the differences between autism and other disabilities. They were certainly unlikely to know the diagnositic criteria for Asperger syndrome, since it didn’t exist at the time.

To answer Ms. Dachel’s question, “what did we do with them”: many autistics services were served under the label of mental retardation. This isn’t even speculation. In a recent study King and Bearman showed that a large number of autistics in California were diagnosed as having mental retardation before 1987. As the criteria changed and awareness grew, these individuals (both children and adults) were also given autism diagnoses. They checked the actual records of actual people and documented it.

To further answer Ms. Dachel’s question, “what did we do with them”: many of “them” were unserved–just like today. Remember that study in Cambridgeshire we just mentioned?

Back to David Kirby’s blog post: he shows us that he is truly “concerned”:

In my opinion, to shrug and treat this story as if things have probably always been this way is, frankly, wishful thinking and unsettling.

It is Mr. Kirby’s response that is unsettling. Heck, it is beyond unsettling. Way beyond.

I think his response the NHS report (that there are 1 in 100 autistic adults) by claiming that since he can’t see “them”, “they” don’t exist is beyond wishful thinking and unsettling. Mr. Kirby acts as though the study doesn’t exist. Worse, he acts as though it shouldn’t exist.

I usually try to avoid speculating on motivations. But, I can’t help myself with these latest comments by Mr. Kirby. Why did he feel the need to downplay the existence of adult autistics in high numbers? The report that there is a high number of unidentified autistic adults is a direct threat the the idea that vaccines caused an epidemic of autism. How does that play to someone who has made a career out of “Evidence of Harm. Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

Consider, if you will, what happened when people like Mr. Kirby pushed the idea of an epidemic of vaccine-induced autism. When the ideas came forward that the MMR vaccine or the vaccine preservative thimerosal could be causing autism, the scientific community took it seriously and responded with multiple studies looking for better evidence. But now that there is evidence of a large contingent of adult autistics, Mr. Kirby joins the denialists and defends the old-guard thinking. Ironic, that.

It has always been a reasonable assumption that there is a large contingent of unidentified autistic adults. The active denial of this possibility has long bothered me. The denial in response to the UK survey of autistic adults is just beyond the pale.

Mr. Kirby is just no friend to my kid. My kid needs advocates who will fight to make a better world for autistics. How can we do that if we deny their existence? How can we prepare for the kids of today to become adults if we don’t start supporting autistic adults now?

18 Responses to “David Kirby: No friend to my autistic kid”

  1. David N. Brown October 27, 2009 at 08:57 #

    Actually, the autistic adult population doesn’t HAVE to be a threat to the vaccine causation theory. Granting that premise, there could have been an “epidemic” by ca. 1950. I think the issue is that vaccine critics don’t understand the history of the technology, and/or want to believe in some “golden age” within living memory.
    Also note the irony that Kirby claims he can diagnose autistics, while Offit gets blasted for lacking clinical experience with autism.

  2. Joseph October 27, 2009 at 16:04 #

    There’s a reason why autism prevalence studies don’t consist of sending a guy with a notebook to walk around town to see if he can spot any autistic people.

    Case-finding is difficult. Diagnosis is difficult. Prevalence studies are expensive. Individual evaluations take a long time. They are generally done by experienced professionals, not some random dude.

    Consider what a reader of Mr. Kirby’s blog (dearlizzie) wrote, in response to a different post on the prevalence of ASD among children:

    What is the basis for this 1 in 60 number? My own experience doesn’t correlate to this. I happen to have a 13 yo. Putting pen to paper and counting it up, I’ve spent time with perhaps 500 or more boys & girls since my son was an infant through various mommy & me classes, pediatric groups, nursery & school, camps, church, community groups, charities, kid’s museum groups, sports, friends’ kids, younger siblings of my older kids’ friends, etc. Yet we only know of one child with an autism spectrum disorder or even symptoms of one. Admittedly not a scientific sampling, but why doesn’t my reality come close to mirroring this 1 in 60 estimate? According to this, I should know maybe 8 kids with an autism spectrum disorder, but it’s only one lone Asperger’s boy.

  3. Kwombles October 27, 2009 at 16:26 #

    Perhaps Kirby doesn’t read AoA, either the other bloggers or the commenters. I mean, how is he forgetting Jake or Roger. Now,they have perhaps around 100 routine, regular commenters there. And here’s 2 bloggers/commenters on the spectrum. How come they don’t figure into his count?

  4. Emily October 27, 2009 at 17:06 #

    Autistic people from previous generations weren’t just allocated in the educational setting to special classes. They often stayed in general education classes where they were bullied, villified, teased, taunted, ridiculed, and abused by teachers and classmates. Teachers who thought their behaviors were willful disobedience. Classmates who knew an easy target when they saw one, who couldn’t understand the noises or the emotional responses or the compulsions or the awkwardness or the social inhibitions. They’re not hiding or hidden and they never have been. If David Kirby is incapable of picking up on this in his attendance at autism conferences, riding the subway, or interactions in any number of other situations, then I’d say that there’s at least one adult out there named David Kirby who appears to have a bit of a problem distinguishing social cues himself.

  5. Science Mom October 27, 2009 at 17:25 #

    I usually try to avoid speculating on motivations. But, I can’t help myself with these latest comments by Mr. Kirby. Why did he feel the need to downplay the existence of adult autistics in high numbers? The report that there is a high number of unidentified autistic adults is a direct threat the the idea that vaccines caused an epidemic of autism.

    I don’t think there is any problem speculating along those lines in this case. That is absolutely the case; Kirby et al. doesn’t seem to have any problem throwing autistic adults under the bus in order to propagate their vaccine-autism epidemic causation rhetoric and agenda. Perhaps Kirby would benefit by being introduced to group homes and institutions that house autistic adults, much in the same way that his mate, Dan Olmstead should have asked directions to the Strasburg Clinic for Special Children.

  6. stefanie October 27, 2009 at 18:36 #

    this guy is nuts im an adult with autism dose he think we maglicy dispare ,if he spent some time with me an my friends he see the good an bad days .what a moron

  7. Dedj October 27, 2009 at 18:38 #

    I find it utterly strange that Kirby claimed he didn’t see anyone – not a single person – on the tube who didn’t refrain from or avoid eye-contact, not a single person that was engrossed in a paper/magazine/report to the exclusion of anything bar their immediate area, that he didn’t find a single person who refrained from or avoided small talk with thier neighbour, that he didn’t find a single person that spoke only about work work and work to the immense and obvious boredom of their coworker during the morning commute, that he didn’t see any person show immense discomfort at mere physical contact……

    I find it strange that Kirbys tube commute seems to be totally unlike the archetypal tube commute that appears in the general literature.

    As for never even seeing a person with autism in his career, even though he’s in an admittedly autistic unfriendly vocation and his publication history is unlikely to have involved any form of contact with people identified as autistic, that sounds extremely unlikely.

    pre-EoH of course.

  8. Patrick October 27, 2009 at 18:59 #

    In addition to what Emily wrote, some ASD kids were also sent to the gifted classes, where they (and perhaps more in the class) were subjected to similar treatment.

  9. Ringside Seat October 27, 2009 at 19:04 #

    I find it incredible (nah, that’s just rhetoric) that David Kirby doesn’t know what Asperger’s syndrome/disorder is. I mean, man, what a clown.

  10. Emily October 27, 2009 at 19:08 #

    Patrick, sadly my experiences predated the existence of “gifted” classes. We didn’t have the G&T option in those days. But you’re correct…

  11. daedalus2u October 27, 2009 at 22:40 #

    People with autism who are now adults have had a lifetime to try and make themselves invisible. Some of them have succeeded all too well.

  12. David N. Brown October 28, 2009 at 07:34 #

    A couple more things I was thinking about: One is how rarely people in an animal’s territory (esp. predators like big cats and wolves) actually see the animal. The other is my personal experience with not being noticed. For reasons I don’t understand, I seem to be able to walk right up to someone and take him/her completely by surprise. I do this now without even trying, but I wonder if it’s a “skill” carried over from elementary school, when I believed that the only way to avoid abuse was to do absolutely nothing to attract attention. How many adults might be doing this?

  13. Stan November 13, 2009 at 22:03 #

    Sorry that I’ve come across this thread so late in the ‘day’. I would have liked to have been part of a dialogue on this issue. But better late than never.

    If we just stay with the main issue – about the incidence of ASD rising or not in the last 20 years or so – I feel that the clear potential answer was, indeed, clouded by a change in the criteria; extending it to include a larger range of PDDs. Not helpful in scientific terms. But in following this issue for some years now, I have been struck with the ‘anecdotal evidence’ from many long-time teachers around the country that they never saw the number of ‘developmentally disabled’ kids coming through years ago that they have been seeing these days. And I know when I was in high school, in the early 50s, there was nowhere’s near the incidence of such kids as there are these days – an incidence that is breaking many school systems’ budgets, and making it difficult to find sufficient teachers trained to deal with the ‘developmentally challenged’ now coming through.

    So something has happened. The question is what. What has changed?

    Any manner of things have changed. But in terms of brain damage, there are few likely culprits. And since brain damage HAS been sourced back to vaccines in the early days (50s-60s-70s), there is every good reason to believe that the increase in the vaccine schedule in the late 80s/early 90s – and the change in ingredients in the vaccines – is a major suspect in a true increase of ASD, not just due to a change in the official profile.

    Yes, pesticides can be involved. Yes, mercury in the environment other than in vaccines can be involved. Yes, EMFs can be involved. Even pre-natal ultrasounds can be involved. (All of these factors have increased over the years.) But it is not far-fetched to suspect the role of vaccines in this tragedy – in this tragedy for the adults affected and children alike. So the whole range of causal possibilities needs to be addressed. And contrary to reports, the studies ruling out the vaccine line are not all that strong; and some have been so obviously ‘methodologically flawed’ as to make it appear that it was on purpose. Not helpful in scientific terms either.

    • Sullivan November 13, 2009 at 22:18 #

      Stan,

      and I know when I was in high school, in the early 50s, there was nowhere’s near the incidence of such kids as there are these days

      Do you realize that in the 1950’s, there was no mandate that the schools had to accept and teach disabled children?

  14. Joseph November 13, 2009 at 22:32 #

    But in following this issue for some years now, I have been struck with the ‘anecdotal evidence’ from many long-time teachers around the country that they never saw the number of ‘developmentally disabled’ kids coming through years ago that they have been seeing these days. And I know when I was in high school, in the early 50s, there was nowhere’s near the incidence of such kids as there are these days – an incidence that is breaking many school systems’ budgets, and making it difficult to find sufficient teachers trained to deal with the ‘developmentally challenged’ now coming through.

    @Stan: Do you have a reference supporting this claim that special education is breaking school systems’ budgets?

    Even if it’s true for some school here or there, if this were a widespread issue, then we’d be able to clearly see that in IDEA statistics, for example, wouldn’t we?

    What we see instead is that the total population of students in special education has been roughly stable, relative to population growth.

    The “anecdotal” evidence you claim exists (is it documented anywhere?) does not tell us much either. Teachers would have to recall back one generation and try to diagnose or rediagnose children from memory. Would they even be qualified to do that if they had perfect recollection?

    And contrary to reports, the studies ruling out the vaccine line are not all that strong; and some have been so obviously ‘methodologically flawed’ as to make it appear that it was on purpose. Not helpful in scientific terms either.

    In my experience, anti-vax critiques of papers are typically just laundry lists of (known) limitations that don’t explain away the results.

    For a paper critique to be worthwhile, in my view, it should point out something the authors overlooked that could completely change the interpretation of the results.

    You’re welcome to provide examples, though.

  15. Dedj November 13, 2009 at 23:18 #

    Indeed, even in my own education back in the 80’s , disabled children were not seen at school at all. My first contact with a disabled pupil was not until I moved across town to the new technology college, which had one visibly disabled pupil out of 800 pupils, well below what could be expected on random chance alone.

    Subsequent meet-ups, reunions, newspaper articles and facebook profiles indicate that the a sizeable number of the people I went to school with have since recieved significant diagnosis, even though the traits they were diagnosed for were in existance at school. In some cases these traits would often result in detention. Very few were in the Special Ed class like they would be now.

    Even now, I’ve came across professionals who absolutely refuse to have their officially diagnosed children statemented, even though they know it’s probably the best way for their child.

  16. Stan November 15, 2009 at 17:57 #

    Joseph:
    Thks for your openness to look at critiques of some of the studies cited by the Powers That Be to exonerate vaccines from the autism debacle. I have been going though my files (read, more accurately:piles) of material to look for one, as an example, that I had downloaded, from Dr. F.E. Yazbak on the ‘Denmark’ study. I couldn’t find it right now, but in googling ‘Yazbak autism Denmark study analysis’ or some such, I came across a reference to that critique – by him and Dr Gary Goldman – at:whaleto.a/mmry Also: autismimmunityproject.org/yazbak.doc
    In critiquing the original, ‘Masden’ study (there was a question of the cohorts he used) they concluded that in point of fact “there has been a serious increase in autism in children under 14 in Denmark in the last few years” [this was published in ’04) “in connection with the introduction of the MMR in 1987…The present rise in autism in Denmark has clearly started 4 to 5 years after the introduction of the MMR vaccine and [furthermore] it appears to correspond with the percentage of children who received the MMR.”

    Dr Yazbak also figured in the critique of the Eric Fombonne study out of Canada, with its moving of the goal posts as well (from one town to another): prnewswire.com/news-releases/newly-released-canadian-study-links-vaccine-with-[PDD].

    Also a good source: fourteenstudies.org

    Joseph and Sullivan: Re increase:
    (1) A recent study out of California found it was not just due to better or wider diagnosing:
    ucdmc.ucdavis.edu/news
    This study seems to date to 2002; I think there has been a more recent one out of the M.I.N.D. Institute of U of Cal at Davis, but I haven’t been able to source it right now.

    As for reports of school districts being stretched terribly for special needs ed, Anne Dachel has researched this matter quite a bit. Her email address: adachel06@yahoo.com.

    Good luck – and thanks to both of you for your interest in this matter.

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - David Kirby: No friend to my autistic kid « Left Brain/Right Brain -- Topsy.com - October 27, 2009

    […] This post was mentioned on Twitter by Merryn Affleck, Peter Brown. Peter Brown said: Autism Blog – David Kirby: No friend to my autistic kid « Left … http://bit.ly/hvzVR #autism […]

Leave a Reply to Stan Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: