• Thu, Mar 13 2008

Further Questions about the Case of Hannah Poling

More commentary on the case of Hannah Poling by pediatrician Rahul Parikh, M.D., on Salon (March 13). As Dr. Parikh clearly states, the government’s concession does not say that vaccines caused Hannah to become autistic, but that her “underlying mitochondrial disorder” was “aggravated” by vaccines and “manifested as a regressive encephalopathy with features of autistic spectrum disorder.” Dr. Parikh continues:

Mitochondrial disorder does not equal autism [my emphasis]. Generally speaking, mitochondria are the parts of our cells that help generate energy. When they fail, the body’s cells go awry, which can lead to failures in any number of normal body functions. There are at least 40 known mitochondrial disorders, and probably many more we haven’t yet found. But it’s clear from the transcript of the court’s decision that this was not a case of vaccines causing autism. Rather, this is a case where the court deemed it plausible that vaccines aggravated an underlying disease caused by bad mitochondria, and that some of the symptoms Hannah showed were similar to autism. As you’ll see below, there are even questions about that conclusion.

Noting that “clinicians Alice Kau and Kelley Duff believed Hannah was ‘developmentally delayed and demonstrated features of autistic disorder,’” Dr. Parikh asks: What kind of “clinicians” specifically are “these two individuals.” The document about the case does not specify this. As Dr. Parikh continues:

Were they expert enough to consider a metabolic disorder like mitochondrial diseases when they evaluated Hannah? That’s a fundamental question: Clinicians (doctors or otherwise) must consider not just the obvious diagnosis, but a differential set of diagnoses as well. Because the government has not released details of the case, which remain sealed according to court rules, we do not know what evidence Kau and Duff relied upon to reach their conclusion.

Dr. Parikh then considers the other diseases that Hannah had between being diagnosed with mitochondrial disorder and receiving her vaccines.

Two of these events occurred within the expected timeline for a vaccine reaction. One — fever and irritability — seemed to be a reaction to the diphtheria, tetanus and pertussis vaccine. This is a rare but well-known side effect of that vaccine. The second was a fever and a rash that were diagnosed as a reaction to the chickenpox vaccine.

But Hannah had other many other infectious illnesses in that interval, which were well beyond the timeline of vaccine side effects. Could these subsequent illnesses have been the culprit, the aggravating factor, that tipped her into her disorder, instead of vaccines? It wouldn’t be unreasonable to conclude this.

As Dr. Jon Poling, Hannah’s father noted in a comment on the Neurologica blog, her case has raised “many intelligent discussions and questions.” As Dr. Parikh, Hannah’s case raises more than a few questions about the diagnosis of autism; about what we understand autism to be.

And I’ll once again suggest that—while I myself find these questions of diagnosis and aetiology of, indeed, intellectual interest, I’m just as much and maybe even more thinking constantly about some really basic questions, of education, of teaching Charlie and kids like him in ways that enable them to meet their full potential, and have rich and fulfilling lives.

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  • Leila

    Count me in as another parent who is NOT emotionally invested in this crusade to “prove” that vaccines cause autism. Even in the improbable event that I ever find out the exact cause of my son’s autism, it won’t change our most pressing need, which is the development of effective TREATMENTS to develop his intellect, speech and executive functioning.

    And by the way I have more faith on Big Pharma and mainstream scientists to find the answers I’m looking for, than on opportunistic DAN doctors.

  • Regan

    FWIW,
    Alice Kau, Ph.D. is a developmental Psychologist, and
    Kelley Duff, SLP-CCC is a speech pathologist.

    Given the medical nature of the Poling case, their particular training might be relevant.

  • http://www.autismvox.com Kristina Chew, PhD

    I thought that one of the clinicians might be an SLP—interesting.

  • http://autismtwins.blogspot.com kal

    I think the clinicians cited above were simply noting Hannah’s autism. In fact they are or were clinicians at CARD at the time– the Center for Autism and Related Disorders at the Kennedy Krieger Institute (http://www.kennedykrieger.org/kki_cp.jsp?pid=1394) — arguably one of the biggest autism research centers in the world (and not at the other “CARD” link that was provided by Dr. Parikh on his blog). It’s quite possible that the clinicians at KKI CARD worked alongside Dr. Richard Kelley, one of the top three metabolic disease specialists in the U.S. who also is at KKI (one of the doctors Dr. Poling mentions in his response to the Neurologica blog post, #6).

    (also, for the full text of the Autism Vaccine case, see: http://www.ageofautism.com/2008/02/full-text-autis.html )

    I think there are many kids like Hannah Poling whose mitochondria are easily stressed as infants, whether it’s through the stress of vaccines or some other environmental factor or even infection. I don’t think that means you stop vaccinating, I think it means taking a more conservative approach to the timing of them perhaps. I think there should be a way to screen for kids who might have an underlying mito disorder.

    My boys have both autism as well as a mitochondrial disorder, and while I don’t blame vaccines for either, I do think it’s important to recognize that there are children for whom our current vaccine schedule is potentially harmful.

  • http://www.autismvox.com Kristina Chew, PhD

    David Kirby posted the full text of the vaccine court’s decision here on the Huffington Post; there are some questions as to how he got this particular document.

    kal, if I may ask: when did you suspect that your boys had a mitocondrial disorder?

  • http://autismtwins.blogspot.com kal

    I didn’t suspect it. I wasn’t even aware of mito disease. Our mito was suspected by our developmental pediatrician after our first autism diagnosis and after some of the standard blood tests they recommend came back abnormal. That led us to further testing and ultimately our mito diagnosis, and yet interestingly enough, further testing ruled out what is called “mito autism”. So my boys have autism. They have a mito disorder. They appear to be unrelated. And yet vitamin therapy to treat their mito has made both of them more stable on their feet and has made a huge difference in their ability to focus and in the case of my more verbal child, has helped him organize his thoughts and express them. I know this because we went off of the vitamins for two weeks and both of them regressed.

    I find it all fascinating. I’m not familiar with the David Kirby post, I’ll have to go read it. I only posted the link to the ageofautism site because it better outlined the professionals involved and where they gave their diagnoses.

  • http://www.autismvox.com Kristina Chew, PhD

    Thanks, kal—that is really interesting. I’ve been reflecting on my own son’s blood work and (I have to check) but I think everything came back normal, such as it is……. Kirby got the whole story rolling with his first post back in February.

  • RAJ

    How autism is defined and how it has changed over the decades can be made by examining the many changes in the DSM definitions:

    http://www.unstrange.com/dsm1.html

    The major change occurred with the introduction of DSM-IV in 1994 and a less major change was introduced with DSM-III-R in 1987.

    Leo Kanner defined the sui generis of infantile autism as a profound indifference to the existence of other people most observable in the toddler years and most remarkable in their relationships to parents and siblings.

    Kanner also noted in the early 1960′s that too many clinicians were over diagnosing autism, that children who did not meet the definition but who shared some isolated symptoms that are not specific to autism but are shared with many other developmental disorders (mental retardation, personality disorders, language impairments, developmental delays, sensory impairments etc) were being given the fashionable label of ‘autism’.

    DSM-III-R did include ‘marked indifference to others’ but only as one of many items in an expanded checklist, but this definition (Kanner’s definition) was dropped with the introduction of DSM-IV in 1994. All items on the checklist are given the same weight even though over 90% of the items are not autism specific. Autism rates also began to climb with the introduction of DSM-III-R in 1987 but not as dramatically as what happened with the introduction of DSM-IV in 1994.

    It was in 1994 that the so-called autism epidemic began and that entirely coincides with the introduction of DSM-IV.

    Population studies are useless exercises as DSM-IV began to be ever more widely accepted and prevalence rates continued to grow as acceptance continued to grow and are apparently headed to a 1 in 10 prevalence if you include the autistic-like traits in the general population, now defined as between 5 and 10%.

    According to DSM-IV any child who who may be socially anxious but is affectionate and sociable at home qualifies for an ASD diagnosis as long as the child has enough other items on the vastly expanded checklist that are part features of a multitude of unrelated neurospychiatric conditions, neurological impairments, emotional problems or developmental delays.

    Autism Spectrum Disorder is now a meaningless label and the previous label of Pervasive Developmental Disorder is more explanatory if it is to include a variety of unrelated conditions who may display social problems, language impairments and unusual play behaviors but who do not meet Kanner’s concept of autism.

    Schopler and Rutter had a discussion about ‘lumpers’ vs ‘splitters’ when it comes to diagnostic issues in autism. ‘Lumpers’ tend to offer a passport to special services to children with developmental problems who may not be truly autistic and that is certainly very positive with respect to treatment and educational opportunites, but ‘lumping’ is disastrous to research strategies because no one can say with authority, who are the recruited samples that are being used by research institutes throughout the world.

    That would explain the glacial pace of ‘autism’ research over the past two decades

  • http://ppdnos.blogspot.com/ Laura

    Speaking of mito, I’ve been having google-induced vicarious hypochondria ever since I read the Poling case. My son had a similar reaction to his 18 month shots – fever and the rash on the belly. Also, the injection site swelled up and was hot to touch. But my son’s bloodwork didn’t show anything abnormal, as far as I know.