The ASA misses the mark

When Dr. Shattuck's paper suggesting that US special education data neither supported nor refuted the premise that there had been an autism epidemic in the USA was published there was a predictable howl of ourage from the autism = mercury poisoning lobby. Safe Minds and the National Autism Association both rushed out press releases denouncing the research and questioning the motives of its author. Numerous blogs picked up on their objections and gave effective answers. See for example Kevin Leitch, Prometheus and Orac.

Then the Autism Society of America issued its response entitled "Study Denouncing Autism Epidemic Misses the Mark" by Kate Ranta.

Now I expect the mercury lobby to put their own spin on anything to do with autism. But the ASA claims to be "the Voice of Autism." We look for authoritative statements from them. So it is with great regret that I have to report that their response to Dr. Shattuck's paper was sadly lacking.

For a start, contrary to the ASA headline, Dr. Shattuck's paper denounced nothing. It stated that special education data neither supported nor refuted the idea of an autism epidemic. It went on to suggest that diagnistic substitution might explain the growth in autism diagnoses in recent years. But it did not rule out the possibility of environmental triggers contributing to the growth in diagnoses of autism.

Here is the ASA report in full in italics, with my comments in plain text.

ASA Calls for Studies Benefiting Families Now

Bethesda, MD — April 5, 2006 — The Autism Society of America (ASA), the oldest and largest grassroots organization serving the entire autism community, in response to a study by Dr. Paul Shattuck appearing in next week’s edition of Pediatrics entitled “Diagnostic Substitution and Changing Autism Prevalence,” says the study takes the focus away from the real issue: autism is affecting millions of people and families who need help today.

The study would probably have gone unnoticed but for the antics of Safe Minds and NAA in denouncing it and its author because his conclusions do not support their claims of an autism epidemic. It is groups like these and Generation Rescue who have shifted focus away from the real issue. It is a shame that the ASA feels obliged to respond to their agenda. If the ASA felt it had to respond why didn't it defend the report against the lies and distortions.

The real story behind Shattuck's report is that special ed services are missing loads of autistic kids who may be struggling in school because they have not been identified and their needs are going unmet.

“We need to move away from a dialogue about prevalence,” said ASA President & CEO Lee Grossman. “Whether it’s 1 in 166 children or 1 in 1,166 being diagnosed with autism, each and every one of those affected today and in the future must be helped.”

This misses the point entirely. Shattuck's paper does not question current estimates for the prevalence of autism. There is broad agreement by researchers in the USA, Canada and the UK that prevalence is around 60 in 10,000 or 1 in 166.

According to the study, the rise in number of autism diagnoses is not evidence of an epidemic, but shows that schools are diagnosing autism more often. Shattuck claims that autism rates have not increased over the last two decades, and children identified by U.S. school special education programs as mentally retarded or learning disabled have declined with the rise in autism cases between 1994 and 2003, suggesting a diagnostic substitution. Shattuck says there may be unknown environmental triggers behind autism, and his research suggests the past decade's rise in autism cases is a result of poor labeling.

Wrong again! According to Dr Shattuck (and thankyou Orac for your excellent defence of Dr Shattuck which elicited this response)
I was quite explicit in the article that A) my work does not prove or disprove the existence of an epidemic and I think that is still an open issue, and B) my study is not to be taken as supporting or refuting a putative link between autism and vaccines. My number one goal was to raise awareness about the limitations of the special ed. data.

All he is saying is that the special ed data is not up to the job.

ASA Board of Directors Chair Cathy Pratt, Ph.D. said that “in 30 years of working in the autism community, certain realities have become increasingly clear. More individuals are receiving a diagnosis on the spectrum. The needs of these individuals and their families continue to grow. And finally, the lack of options and resources place an incredible stress on all and threaten the future of these individuals. Any study that diverts our focus or that diminishes the perception of this need hurts us all. I know of no family who has enough resources for their child, nor any adult who has all the supports he or she needs.”

Once again, Dr Shattuck's study neither diverts focus nor minimizes perception of need. It points up the fact that the special ed system in the USA is failing to identify and meet the needs of many autistic school children. If the figures are unreliable the service is unreliable. Dr Shattuck's study is a wake up call. HE IS DOING US ALL A SERVICE.
Diane Twachtman-Cullen, Ph.D., co-chair of ASA’s Panel of Professional Advisors, noted that “the findings of Dr. Shattuck's study do not support the conclusion that there is or is not an autism epidemic. If we read more into this study than the findings support, we will be doing a disservice to the significant number of individuals with autism and their families who aren't mere statistics in a study, but rather, real people with real needs.” Jim Ball, Ed.D., co-chair of ASA’s Panel of Professional Advisors, added that regardless of Shattuck’s study findings, more and more people are being diagnosed with autism and the focus must be on the services agenda.

This is amazing. the co-chair of ASA’s Panel of Professional Advisors contradicts the entire thrust of the ASA article and nobody notices. They even include her contradiction in the offending article. And Jim Ball, please note that according to Dr Shattuck, even though the number of diagnoses is growing, not enough people are being diagnosed. You've got an Ed.D. and you still do not get it. Diagnostic substitution means that kids who used to have mental retardation or learning difficulties are having their autism recognized. Kids who are of normal intelligence, whether they merit a diagnosis of high functioning autism, Asperger Syndrome or PDD-NOS are being missed.

“The fact remains that the numbers of those with autism have reached epidemic proportions, and we need to address this now,” continued Grossman. “Let’s put research into interventions, education and services for individuals with autism, not into a dispute about whether autism is being better labeled versus an epidemic.”

The fact remains that the numbers with a diagnosis of autism still lag behind the numbers who are autistic. Who inside the ASA is briefing Leo Grossman? Or is he making it up as he goes along? Read Autism Diva for evidence to support the latter conclusion. Somebody ought to tell Leo Grossman that the reason why we have to win the argument about an autism epidemic is to retake the initiative from the autism = mercury poisoning brigade.

Because if there is a mercury induced epidemic we do not need any more research. We just need the DAN! protocols. If there is no epidemic we can stop wasting money investigating vaccines and autism, cancel all the court cases and put all the time and money saved into interventions, education and services for individuals with autism.

The ASA needs to make its mind up.

I was encouraged by the open letter that the ASA, in the person of Leo Grossman, co-signed to CBS President and CEO Leslie Moonves, The Dr. Phil Show Executive Producer Carla Pennington Stewart; and Host Dr. Phil McGraw. It was especially heartening to read that,

…AS does not have to be the curse that your show portrayed it as. Not only are individuals with AS able to lead happy, productive, and often amazing lives providing they have the right supports, but also because from a medical standpoint AS is not a “mental illness” or a “disease” as the show implied. Mental illness is different than a neurological condition, and for something to be a disease it has to be something acquired, not something you’re born with. Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”

AN APPEAL TO THE ASA

What you say in your open letter is true for all people on the autistic spectrum. And if you really believe that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable”or a "disease" then stop trying to pander to the disease mongers in the mercury camp and reposition yourself within the mainstream of the autism community that includes most autistic people and their families and most researchers, clinicians and educational professionals.

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9 thoughts on “The ASA misses the mark

  1. Lee Grossman, President and CEO

    Carol Folsom, Development Director
    Tiffany Gill, Development and Events Coordinator
    Jennifer Lefever, Director of Information and Referral
    Juliet Mellow, Information and Referral Assistant
    Selena Middleton, Administrative Assistant, Volunteer Coordinator
    Ann Pulley, Controller/Office Administrator
    Kate Ranta, Managing Editor/Writer, The Advocate
    Jeff Sell, Director of Chapters & Membership
    Edward Shipley, Director of Conferences
    Pei-Ju Ting, Data Entry Associate
    Walter Winfield, Director of Information Systems
    Rochelle Zeidman, Development Counsel
    —–
    Board of Directors:
    Cathy Pratt, Ph.D., Chair
    Ruth Elaine Hane, First Vice-Chair
    John Shouse, Second Vice-Chair
    John Reedy,Treasurer
    Elizabeth Roth, Secretary

    Lee Grossman President & CEO

    Andres Filippi
    Herman T. Fishbein, Ed.D
    David Humphrey
    Artie Kempner
    Evelyne Milorin
    Stephen Shore
    Jerry Silbert
    Dean Wilson

    Honorary Board Members:
    Bernard Rimland, Ph.D.
    Eric Schopler, Ph.D.
    Ruth Christ Sullivan, Ph.D.

    —-
    There is a token advisory board of autistic adults among whom some say that they know that whatever they say will be ignored. One autistic adult who knows the situation said that the autistic adult advisors were treated like “clients” in the bad sense of the word. Unfortunately, Stephen Shore has believed the epidemic nonsense and the chelation nonsense and is or has been closely associated on some level with Bradstreet, but I think Stephen just didn’t know what was up and he was being taken advantage of. Also, if he rocks the boat too much he won’t get any more speaking “gigs”, or that’s how it looks.

    Ruth Elaine Hane seems like she won’t be rocking the boat any time soon, either. I’m pretty sure she’s autistic.

    It looks like Jeff Sell has a paid position with ASA, but maybe it’s volunteer.

    David Humphrey is CEO of Kirkman labs which promote chelation by the sale of nutrients that have “chelation” in the name of the formula… if I remember right. Anyway, they sell loads of bio-med stuff to the bio-med parents. You think with Sell and Humphrey hanging around, influencing the thinking, and with Bernie Rimland as the godfather of the organization that they are going to expose the mercury-insanity for what it is?

    “ASA Welcomes Three New Board Appointees
    New Members Bring Experience, Dedication

    The ASA Board of Directors recently appointed three new members:
    Evelyne Milorin, David K. Humphrey, and Andres Filippi.

    “I am pleased to announce that these positions have been
    filled,” said ASA Board Chair Cathy Pratt, Ph.D. “Each of
    these individuals brings gifts and talents that will help ASA continue
    to grow and expand our services. We are excited about the
    opportunities each present.”

    Evelyne Milorin immigrated to the United States from Haiti in 1971.
    She has a 33-year-old son with autism. She is involved with
    organizations such as the Massachusetts Families Organizing for Change
    and Family to Family, Statewide Family Support Advisory Council,
    Massachusetts Developmental Disabilities Council, serves on the
    National Institute for Urban School Improvements Board of Directors
    and North East ARC Board of Directors, and is an ASA member. She has
    been a Joseph P. Kennedy Public Policy Fellow, and participated in the
    reauthorization of IDEA.

    **David Humphrey, an attorney, is owner and CEO of Kirkman Laboratories.**
    Over 400,000 families with children with autism use one or more of its
    products. He is a board member of the Northwest Autism Foundation, and
    also helped form the Autism Treatment Network.

    Andres Filippi and his wife, Deb, are longtime supporters of ASA.
    Andres was brought onto the board for his professional experience in
    the areas of strategic business planning, organizational change, I/T
    portfolio management, project management, program management
    operations, and system architecture engineering and development.
    Andres has performed these duties for various government entities and
    corporations. ASA looks forward to Andres’ support and guidance
    in strategic planning.”

    Emphasis added.

  2. Jim Adams, PhD (materials science) is the president of the Phoenix chapter. See any of my posts about the SCNM chelation study (or ASU’s rejection of it) for more nonsense in Phoenix, or simply look up the mercury experts at the Autism Omnibus proceedings. Not that he might not potentially be a good advocate outside of science. It looks like this group may be more concerned with mercury litigation or other non-advocacy interests.

  3. And then… Dr Shattuck the one that ASA got all angry at, is an member (board member?) of ASA in Wisconsin. ASA is just about the only “game in town” as far as local support goes. Sacramento only has FEAT which has de-evolved into a biomed support group, and only was ever about little kids (Family for Early Autism Treatment) How about late autism support?

  4. The ASA seems to wish to be everything to everyone and therefore has — despite its aims — a limited impact. Shattuck’s study opens up a lot of questinos about how autism is misunderstood and misidentified, and hope that these points do not get lost in the general outcry.

  5. I hope that the existence of nearly a million adults on the autism spectrum many of whom are the parents of autistic kids, not kidding here, will be recognized by ASA.

    Dr. Buitelaar had the unmitigated gall (courage?) to point out that some of the difference in the outcomes of kids he sees could be due to parenting, and some of that due to the fact that the parents are on the spectrum… and he said he saw 1 in 166 but NO vast increase.

    How dare he? How dare he point out that there could be generations of spectrum people in a family? What kind of big pharma pay-off did he get? hmmm?

    How are autism spectrum kids and adults treated by the Dutch government, as far as there being programs to employ and house those who can’t take care of themselves on the open competetive job market….

    What do you bet there is something approaching civilized care for autistic adults there compared to here? Though maybe I’m romanticizing Holland (Welcome to…).

    ASA is harming all the autistic adults by their two faced stand. Period. The message to the children is that “you are a new breed” “you are a burden on our society”, “don’t look for adult mentors of your kind they are not there.”

    This is more than ineffective, this is evil.

  6. MMR is much bigger over here in the UK than mercury. There has been a TV drama with Wakefield portrayed as the dashing hero and he continues to attract support from journalists on at least two national newspapers. The National Autistic Society has managed to avoid miring itself in the MMR controversy by repeating the mantra, "We are not a medical charity." and providing references to the relevant research in its information sheet on MMR
    They have also produced a Briefing on Mercury and Autism and a press release on Chelation Therapy.

    My problem with the NAS is that our agnosticism on the subject of vaccines lends some credence to the anti-vax campaigners. Referencing people like Bernard, the Geiers and Kirby in the mercury briefing makes them seem respectable even reliable sources of information.

    The inclusion of my article in Communication which also marked the start of my blogging career did cause a stir at the time. Sooner or later I think the NAS is going to have to take a stand. It will just take a little more stirring.

  7. Judging by some of those director profiles I wonder if US not for profit laws are a lot more lax than UK charity laws when it comes to the matter of board members not profiting by connection with the organisation.

    From my perspective it looks as if “big pharma” win every way.

    The mercurians are not against big pharma at all, they are avid users of its products.

    Anyway to get onto the ASA board these days you have to have considerable business credentials, which does not exactly make it easy for autists to get on

  8. Pingback: Another window opens « Action For Autism

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