On "Unstrange Minds" & the "Autism Epidemic" · 2007-01-18 22:17

The following was submitted in response to Autism Speaks’ request for feedback on Roy Grinker’s book, Unstrange Minds, and the question, “Is there an epidemic of autism?”

I have read and highly recommend this evocative, well-researched and thought-provoking book. Professor Grinker explores the historical and cultural context within which autism is defined and experienced, alternating accounts of the lives of autistic individuals and their families in Africa, India and Korea with stories from his own family life. The end result is a thoughtful exploration of the challenges faced by autistic individuals and their families, putting the phenomenon of autism in global perspective.

Just as autism is described and experienced differently from one culture to another, so too is it described and experienced differently from one family to another. Some are inclined to attribute difference and disability to malevolent external influences; others are inspired to look in the mirror, and up and down the family tree. There are many parents for whom a child’s diagnosis opens a path to understanding themselves or other family members, young and old.

I am not convinced that there is an epidemic of autism, and Professor Grinker’s book goes a long way to support my skepticism. However, I do believe that there is an epidemic of parental trauma induced by worst-case descriptions of autism, offered by clinicians whose familiarity with widened diagnostic criteria is unaccompanied by any sense of realistic optimism, or any educated understanding that the prognosis picture (formerly a forbidding prediction that all autistics must be “institutionalized”) should be widened, too. I also believe that there is an epidemic of retrospective parental conviction that children were made autistic by vaccines, and determination to ensure that either pharmaceutical companies or the government will pay for their supposed wrongdoing. This second “epidemic” is the result of the assiduous efforts of personal injury lawyers, validation-seeking clients and their publicists, perpetuates suspicion and blame as a response to developmental disability, and has been eagerly facilitated by those with a wholesale opposition to vaccination, and/or who oppose government involvement in health care policy development, licensing and health care provision. Efforts to cultivate popular sympathy for and agreement with autism-vaccine injury plaintiffs have grown considerably as the June 2007 date for causation hearings in the Omnibus Autism Proceeding approaches.

The campaign moves forward through the energies of activists such as lawyer and Autism Speaks consultant Kevin Barry, former President of Generation Rescue, known for its full-page newspaper ads and glossy websites trumpeting the existence of an iatrogenic autism “epidemic.” This morning, shortly after Autism Speaks published its call for feedback on Professor Grinker’s book, Mr. Barry emailed fellow autism=poisoning crusader Heidi Roger, requesting comments on the epidemic “debate,” stating that, “it would not hurt if Autism Speaks heard more feedback from EOH parents” — that is, members of the Evidence of Harm list, the nerve center of the vaccine-injury plaintiffs’ advocacy campaign. Mrs. Roger — treasurer of the organization SafeMinds — promptly complied with a post urging list members to tell “our side of the story.” How useful for the “epidemic” crusaders to have Mr. Barry “on the inside” at Autism Speaks, soliciting vox populi from activists guaranteed to be reflexively unsympathetic to Professor Grinker’s analysis. And how ironic that Professor Grinker’s nuanced analysis was given no more than a brief description on the Autism Speaks page inviting feedback on his work; his research in Korea was supported by NAAR, now merged with Autism Speaks.

Even without Mr. Barry’s strategically-issued invitation, Autism Speaks would no doubt find itself inundated with angry emails from activists outraged that anyone would have the audacity to question the concept of an “autism epidemic.” This is the fate of researchers who present conclusions that might undermine the scientific arguments of plaintiffs in thimerosal litigation: to be demonized, verbally abused, accused of deliberately deceiving the public, accused of being “holocaust deniers,” “revisionists” or paid agents for pharmaceutical companies, the American Academy of Pediatrics, the CDC, or other nameless dark forces. For instance, last year, when Professor Paul Shattuck of the University of Wisconsin published an analysis of autism diagnostic trends and concluded that recent increases in rates of diagnosis are largely attributable to diagnostic shift and changes in educational record-keeping practices, he received an avalanche of hostile correspondence, and was targeted in press releases issued by the Autism Society of America and the National Autism Association. The NAA press release (which remains online) inaccurately suggested that Shattuck was beholden to the Merck Corporation and the CDC, and that he was possibly involved with falsification of scientific information.

It is unscientific and inhumane to sensationalistically describe recent increases in the incidence of autism diagnoses as signs of an “epidemic,” and unnecessary to do so when advocating for the needs of autistic citizens. To describe autism as “epidemic,” one must insist that autism is a recent phenomenon and deny the existence of adults whose cognitive traits and developmental trajectory are similar to those of children now diagnosed with autistic spectrum conditions. Such denial cannot possibly benefit autistic citizens as a group. The histrionic rhetoric that goes along with the idea of an “autism epidemic” does not serve the interests of the larger community of autistic citizens and their families.

Comments


  1. You said it, baby!

    — brockton    2007-01-18 23:25    #

  2. Amazing stuff. I think it’s time for a whole generation of parents of autistic children to grow up, Autism Speaks needs to grow up, too. Their request was for parents who believe in the autism epidemic to reply to a book with a wonderful selection of reasons not to believe in the faux epidemic, BEFORE they could have read it!

    Bob Wright, you’re a grandfather… maybe you could show some maturity here?

    — Ms Clark    2007-01-19 00:34    #

  3. Sounds like there’s a “stay on message” problem. Or maybe it’s a “I don’t think you believe in the Autism-mercury link as much as I do” problem. Or maybe it’s a “Grinker’s book really pulls the rug out from a lot of our constituents’ rhetoric” problem. In any case, AS has got a real problem.

    — Bartholomew Cubbins    2007-01-19 01:44    #

  4. I agree with all of this and know from personal experience about the, “epidemic of parental trauma induced by worst-case descriptions of autism, offered by clinicians whose familiarity with widened diagnostic criteria is unaccompanied by any sense of realistic optimism, or any educated understanding that the prognosis picture…”

    What I heard when I 1st learned of my son’s autism, was a litany of doom and gloom, broken families, shattered dreams, better act fast or the window of opportunity will be passed etc. I am just SO GLAD I somehow got passed all that and could find the joy of autism.

    — sharon    2007-01-19 03:36    #

  5. Kevin can wear a moderate mask but one look behind it reveals the true man.

    Here I thought he realized the thimerosal hypothesis was doomed and jumped the Handley ship before it went under. Now it looks more like he wants to spread the GR message from a higher hilltop.

    Say, wasn’t Kevin the guy JB’s kid talked to on the phone after making a full recovery with nasal B12 and Valtrex or something?

    Can I get a witness???

    — Not Mercury    2007-01-19 08:29    #

  6. “Their request was for parents who believe in the autism epidemic to reply to a book with a wonderful selection of reasons not to believe in the faux epidemic, BEFORE they could have read it!”

    You mean this book isn’t even out yet?

    — Do'C    2007-01-19 10:02    #

  7. The book was published on January 1, less than three weeks ago.

    — Kathleen Seidel    2007-01-19 10:38    #

  8. The publication date of Unstrange Minds is January 22. Amazon confirmed it shipped yesterday.

    — Joyce    2007-01-19 13:12    #

  9. Thanks for the more accurate info; I based my statement on the date provided on the Amazon listing.

    — Kathleen Seidel    2007-01-19 13:14    #

  10. I was at a Barnes and Noble in Baltimore, MD. They said they have the book in the back but that they are not allowed to put the book on the shelves until the 22nd.

    — Joyce    2007-01-19 13:22    #

  11. Amazon – how did we survive before?
    Cheers

    — mcewen    2007-01-19 13:55    #

  12. I just got mine from the UPS guy… Amazon.com.

    The release date is January 22nd. I guess Amazon was able to jump that by three days.

    — Ms Clark    2007-01-19 18:00    #

  13. So, Autism Speaks wants to “stay the course”. That could be the second time that it is failed policy.

    I sent them email. I wonder if they will post it.

    — TheProbe    2007-01-20 16:13    #

  14. I have my copy on on order – waiting for shipping to Australia. I actually cried when I read the promotional site for Unstrange Minds – and although I haven;t read the book it looks as thought it goes right to the heart of the matter.

    — ythan    2007-01-30 19:03    #

  15. Everyday at work I have at least one angry parent demanding that I find their (neurotypical) child to be autistic and recommend harmful treatments, like 40 hours a week of ABA.

    There’s a lot of hysteria in the air.

    I’m all for helpful, respectful early intervention, and there are plenty of kids who need it. For the others, this book might be a good reality check.

    — School Psych    2007-02-24 12:42    #

  16. I am not surprised at the intransigence of the autism = poisoning crowd. If a parent has been operating on the assumption that there was a child who was their child, and that child was hidden or kidnapped or whatever as the result of poisoning, I can see that parent developing a dichotomous view of their child. They might tend to see a “real” part and a “poisoned” part. Not only would the poisoned part tend not to be accepted, but the poisoned part is actually someone else’s fault.

    With that setup, to be told that autism is a cluster of characteristics, which are fundamental to who that parent’s child actually is, could be very hard to take. It would require forging a new relationship with what the parent saw as the poisoned part. I could see how I might be resistant to that sort of change.

    What that means for me is that the sooner these myths are publicly debunked, the fewer new parents will have to make that uncomfortable readjustment.

    And if the psychological difficulties for parents seem hard, just imagine what it must be like for children who have been told that they have been poisoned and that their “real” selves have been unfairly taken away.

    — VAB    2007-03-13 12:58    #

  17. What I find interesting is that all this discussion of the “autism” increase in the popular media does not distinguish between educational labels and medical diagnosis.

    It’s harder to get a medical diagnosis than an educational label. And the Good Lord only knows it’s hard enough to get that educational label when you need it!

    As a special ed teacher and parent of an Aspie kid who’s now an adult, there’s times when the label is effective educationally—and when it is not. It took me four years to get the label for my son. It might have helped him through his tough middle school years.

    But I sure don’t blame vaccines for his Aspieness… all we have to do is look at the family tree and see the traits all over the place there.

    — joycemocha    2007-03-14 22:38    #

  18. Re. VAB’s comment #16: Jim Sinclair first wrote about this 15 years ago: http://www.ani.ac/dont_mourn.html.

    — Phil Schwarz    2007-03-30 18:10    #

  19. Just finished the book. Loved your words!!!

    — Laura Cottington    2007-04-06 01:57    #

  20. I am interested in gaining more information on the possible link between child survivors of shaken baby syndrome (SBS) and their display of a variety of autistic behaviors and cognition.

    Traumatic injury to infants could produce an autism-like set of deficits. We need to eventually make this differentiation to both understand the true nature of their disabilities and successfully treat these youngsters.

    — Waddell Robey    2007-04-24 05:39    #