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?