• Tue, Apr 1 2008

The Rebranding of Autism

“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.

More recently—in writing about the case of Hannah Poling—Kirby has suggested that some type of “vaccine aggravated mitochondrial disorder” is “mimicking” autism. And then there’s the autism organizations such as Safe Minds and Generation Rescue who would suggest that autism is “mercury poisoning” or a “mercury-induced neurological disorder.”

And now today in the Huffington Post, Kirby uses the term “autistic encephalopathy” to describe what Hannah Poling has.

Orac at Respectful Insolence has referred to Kirby’s new “terms” for autism as rebranding.” Kirby does seem to be playing the chameleon with each “rebranding,” changing how he describes autism and its causes as the latest news and developments in autism research suit him.

Contrast these creative diagnostic slights-of-words with the often-expressed relief of parents to get a diagnosis, to know that “it’s autism” so they start figuring out services and therapies for a child, and Kirby’s repeated attempts to rebrand “autism” as something-or-other biologically based disorder seem to be so much playing with words.

And saying “it’s autism” or whatever—that’s just the beginning to helping a child achieve all that she or he can and will.

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  • http://incipientturvy.blogspot.com M

    His next bogus term will probably be something like…I don’t know. Environmentally re-mercurified aggravationism? Leprechaun-induced snake-oil deprivation?

    My guess is that Kirby has some sort of logic-resistant, mitochondrial-induced language disorder. (no wonder he does this…it’s fun!)

  • http://autismnaturalvariation.blogspot.com Joseph

    And then there’s the autism organizations such as Safe Minds and Generation Rescue who would suggest that autism is “mercury poisoning” or a “mercury-induced neurological disorder.”

    Well, that’s really only true of SafeMinds anymore. They can’t get away from their unfortunate name choice, although I guess they could say it now stands for “Sensible Action for Ending Mitochondrial Initiated Neurological Disorders.”

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

    I’m waiting for the next metamorphosis of autism—from mercury to mitochondrial to (and previously, it was mother-blame…..).

  • http://wrongplanet.net Wrong Planet

    I really don’t understand how the Huffington Post continues to let Kirby have a column there.

  • http://daisymayfattypants.blogspot.com Emily

    Ahem. I think I’m going to do a piece on SIFOs…standard-issue family oddities. I’m sure it’s going to find its way into the DSM-V…

    Kristina, I’m waiting for someone to figure out what the environmental trigger is for morphing into a conspiracy theorist and leaving one’s critical-thinking skills behind. Is it Google?

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

    I think it might be yeast.

  • http://daisymayfattypants.blogspot.com Emily

    Ah, so there’s a fungus among us?

  • dura mater

    Hi, all. I am a relatively new reader of this blog, and I enjoy it. I am a neurologist who sees a lot of autistic kids (and adults), and over the years I have developed a lot of love and respect for autistic kids & their families. I agree with you about all the foolish “rebranding” of autism, and especially take exception with the names that purport to explain the etiology, like “mercury-induced neurologic disorder.” However,
    I think “autistic encephalopathy” is just fine. It’s descriptive. “Encephalopathy” just means “brain problem” in doctor-speak, and that is what autism is. Sure, “autistic encephalopathy” is a bit wordy, and maybe even redundant, but, gosh, doesn’t it sound fancy?

    Regardless of what we call it, it is what it is, and the kids are who they are.

  • B

    To be clear: I’m not defending Kirby here. But, can’t illness cause autism-like symptoms? I mean like having rubella as a child– or even fetal alcohol syndrome.
    I say this because my daughter is in a group with several children with ‘autism-like conditions’ but they suffer from genetic problems (1 with VCFS) and one seems to be fetal-alcohol as he is adopted from Russia (that’s what they think, anyway). The fascinating thing to me is these kids do have similar troubles; however, they do manifest differently than the ‘classic autism’ children in the class.

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

    Something rotten in the state of Danmark?

  • Regan

    The point to me is that David Kirby, a journalist, is attempting to leap-frog on the basis of a few documents, a phone conference of anonymous sources and a settlement into synthesizing a new syndrome and even extrapolating etiology and incidence.

    Since much of this is anonymous, or from documents that are not yet public, it just seems real speculative and premature.

    Can kids have disorders which manifest with behaviors falling in the autism diagnostic criteria–well, yeah, I believe it is possible.

    Do I think that David Kirby is the man with the scientific chops to sum up and interpret the evidence? Well, uh, no.

  • Chuck

    Re-branding / re-naming are nothing new and are taken from the professional who routinely use it. What do you think the diagnostic change in the DSM-IV was?

  • http://autismnaturalvariation.blogspot.com Joseph

    But, can’t illness cause autism-like symptoms? I mean like having rubella as a child– or even fetal alcohol syndrome.

    The way I see it, illness can be associated with autism. I’m not sure if it can be said to cause it. Maybe it can. Some people with certain illnesses will be autistic. Some people without them will also be autistic.

    As an example, certain illnesses might be associated with left-handedness. It’s unclear if they cause left-handedness, though. We can only talk about what are called “risk factors”. So, yes, some left-handed people have various illnesses, but there’s no reason to think left-handedness itself is an illness.

  • http://daisymayfattypants.blogspot.com Emily

    @Kristina–LOL

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

    One reason we have even “rebranded” certain things (for lack of a more precise word, which seems as well) is that we live in a culture that is (consciously, unconsciously) influenced by psychology. And it might actually be helpful that we think of “autism” under such a framework.

  • Chuck

    Is “autism” a psychological framework or a biological framework? Nature or nurture? Genes or environment? If a little of the “either or” then how much should be contributed to each side?

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  • http://daisymayfattypants.blogspot.com Emily

    Biological. Nature. Genes are always under the influence of environment. No cell is an island.

  • Chuck

    Emily,
    Biological
    Then it should be dropped in the DSM-V as this book only defines psychological disorders. Dropping homosexuality from the DSM is proof of that. All previous publications fail to mention any biological connection and fail to accurately define what “autism” really is so they have to keep updating it, so it should be moved to a medical context.

    If it is a biological disorder then there is obviously a huge disconnect in the institutions that educate medical professionals about biological disorders or there would not be “better awareness“ about something that affects 1 out of every 150 patients and it shouldn’t have taken years to educate them.

    Nature
    From a psychological perspective, “Nature” is defined as genetics, “Nuture” is all exposures one has over the course of their live. So “Nature” and “Genes are always under the influence of environment.” is contradictory as the environment is “Nuture”.

    If genes are always under the influence of the environment, then what is driving the current continued growth in the ASD population? Genetics cannot scientifically prove what is contributing to the rise. Has there ever been a large global change in the rate of any documented genetic disorder in one generation? What other environmental stimuli are adversely effecting our genes or potentially causing de nuvo mutations?

  • http://daisymayfattypants.blogspot.com Emily

    Chuck, I couldn’t agree more on your comments about biological. I actually think that most things in the DSM should be dropped. It would be laughable how out-of-date much of that stuff is if it weren’t so very seriously real.

    I’m a biologist. I don’t look at things from a psychological perspective, ever, for the primary reason that I cannot stand psychology as a field. Genes are always under the influence of environment, and that’s simply the way it is. As you well know, there is dispute over the assertion that ASD is “growing” in the population. And since no one has claimed that “genetics” (which is a very general term) *can* “scientifically” prove what is contributing to the rise, I’m not sure why you’re saying that. First of all, autism is not a “documented genetic disorder.” Second of all, even if the cause were an environmental trigger, genes are usually what will be involved in the response.

    It is a false construct to counterbalance what you are calling “nature” and “nurture.” Biologically, it simply is not reality. And even reducing “Nature” to “genes” is simplistic in the extreme and does not reflect all of the fundamental biological pathways beyond the gene that lead to who we are.

    Yes, there are environmental stimuli that are adversely affecting our genes and “potentially” causing de novo mutations…the most obvious example that comes to mind is cancer, which is pretty much exactly what you describe in that sentence. But other, less-obvious ones include endocrine-disrupting compounds and their association with testicular problems (nondescent, cancer, infertility) and hypospadias, a genetically associated congenital malformation under influence from environmental factors (we call it a multifactorial anomaly) that some researchers have said is *on the rise* just in the last couple of decades. It is the most common congenital anomaly among boys worldwide.

    There is a nice example of the power of environmental influence on genes in the compound DES, which was a powerful estrogen given to women a few decades ago to prevent miscarriage. It proved to be strongly linked to the development of reproductive abnormalities in the offspring of these women, especially the daughters, who developed rare forms of cervical cancer, among other things. And it’s been proven that these effects were so profound in the grandparental generation that now the granddaughters and grandsons exhibit problems related to the exposure of their PARENTS to DES IN UTERO. In other words, the alterations in their parental genes because of that exposure were transmitted to the offspring, even though the offspring themselves were never exposed and the parents hadn’t been exposed since very early in their fetal development. How do ya think a “nature vs. nurture” person would run with that one?

    Genes and environment are not and are never mutually exclusive. This viewpoint has long been considered a false construct and a false dichotomy among people who actually work with genes. No cell is an island.

  • http://daisymayfattypants.blogspot.com Emily

    Chuck, I couldn’t agree more on your comments about biological. I actually think that most things in the DSM should be dropped. It would be laughable how out-of-date much of that stuff is if it weren’t so very seriously real.

    I’m a biologist. I don’t look at things from a psychological perspective, ever, for the primary reason that I cannot stand psychology as a field. Genes are always under the influence of environment, and that’s simply the way it is. As you well know, there is dispute over the assertion that ASD is “growing” in the population. And since no one has claimed that “genetics” (which is a very general term) *can* “scientifically” prove what is contributing to the rise, I’m not sure why you’re saying that. First of all, autism is not a “documented genetic disorder.” Second of all, even if the cause were an environmental trigger, genes are usually what will be involved in the response.

    It is a false construct to counterbalance what you are calling “nature” and “nurture.” Biologically, it simply is not reality. And even reducing “Nature” to “genes” is simplistic in the extreme and does not reflect all of the fundamental biological pathways beyond the gene that lead to who we are.

    Yes, there are environmental stimuli that are adversely affecting our genes and “potentially” causing de novo mutations…the most obvious example that comes to mind is cancer, which is pretty much exactly what you describe in that sentence. But other, less-obvious ones include endocrine-disrupting compounds and their association with testicular problems (nondescent, cancer, infertility) and hypospadias, a genetically associated congenital malformation under influence from environmental factors (we call it a multifactorial anomaly) that some researchers have said is *on the rise* just in the last couple of decades. It is the most common congenital anomaly among boys worldwide.

    There is a nice example of the power of environmental influence on genes in the compound DES, which was a powerful estrogen given to women a few decades ago to prevent miscarriage. It proved to be strongly linked to the development of reproductive abnormalities in the offspring of these women, especially the daughters, who developed rare forms of cervical cancer, among other things. And it’s been proven that these effects were so profound in the grandparental generation that now the granddaughters and grandsons exhibit problems related to the exposure of their PARENTS to DES IN UTERO. In other words, the alterations in their parental genes because of that exposure were transmitted to the offspring, even though the offspring themselves were never exposed and the parents hadn’t been exposed since very early in their fetal development. How do ya think a “nature vs. nurture” person would run with that one?

    Genes and environment are not and are never mutually exclusive. This viewpoint has long been considered a false construct and a false dichotomy among people who actually work with genes. No cell is an island.

  • Regan

    “Genes and environment are not and are never mutually exclusive.”

    I agree. I also include environment to include beyond that that we think of ala environmentalism although those are factors; to include the processes involved in learning and experience/interaction with the physical and social worlds. Ontogeny and Phylology.

  • Chuck

    Ontogeny would be “Nature” and Philology would be ‘Nuture” from a psychological perspective.

  • Regan

    Yep. Actually I took “ontogeny and phylology” from psychology–behaviorism to be exact.

    However the significant clause is the “and”, which is not inconsistent with Emily’s description of the above, although I guess that one could argue that in some circumstances phylology could become part of ontogeny, given the example of the DES.
    Actually there are examples in the animal kingdom (although we generally hate being compared to animals), of genes being switched on and off with pretty dramatic effects on phenotype (changing from one sex to another in response to relative population distribution) within much shorter than a generation. However the ability to do so was probably part of a much larger and long term process.

    Sorry, Kristina, kind of drifting far afield from the original post.

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