Autism “Debates”

There’s plenty to debate about regarding autism and the speech about special needs children that Vice Presidential candidate Sarah Palin is to give today in Pittsburgh —-her first about public policy—-should set off more. According to the Pittsburgh Post-Gazette, she’s to deliver the speech this morning at the morning at the Airport Marriott in Pittsburgh before an invited crowd of 350.

Update 13:00 EST: Here’s the text of Palin’s speech.Palin talks about “these beautiful children” and these are her three policy proposals: more choices for parents, fully funding IDEA, and efforts to reform and refocus. I just heard about some budget issues in my own school district that have reminded me of the need to fully fund IDEA and Palin’s noting of this is good to hear. IDEA, she notes, will be funded by “prioritizing” how money is spent, and especially funds that are “earmarks for political pet projects” such as “fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark.” “School choice” has been a central part of Senator John McCain’s educational policy throughout the campaign and Palin adapts the notion “school choice” to special needs students.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents’. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice — public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida’s McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective — because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs.


Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

The “options” Palin discusses here are only vaguely connected to the educational issues that face autistic children and their families. Being able to have one’s child attend the “school of one’s choice” is just one issue among many others that families have to consider in providing an appropriate education for their child: Training of teachers and staff, adequate teachers and staff, supervision, inclusion for special needs students with their non-classified peers are just a few that must be considered first and foremost.

Palin’s been quoted as saying that families with special needs children would “‘have a friend and an advocate in the White House’” were she and Senator John McCain to win the election; what, though, about adults with disabilities, who make up 90% of the those with disabilities in the US?

Another autism topic that is regularly the subject of heated debate is whether or not vaccines or something in vaccines can be linked to autism. But while more and more scientific studies refute a link, this particular topic is still regularly portrayed as a “debate” with two equally valid sides, and as a debate and even a disagreement that puts cold-hearted science-bound scientists against distraught parents of autistic children who are staunch and fearless advocates.

There’s a tendency, that is, to invoke a sort of symmetry principle in talking about the notion that vaccines or something in vaccines might be linked to autism. The adamantine pronouncements of scientists defending science itself are contrasted to the pained, highly emotional charges of parents trying to “get to the bottom” of whatever “made” a child to “become” autistic. An October 23rd Bergen Record article about a conference at Hackensack University Medical Center and hosted by the Deirdre Imus Environmental Center for Pediatric Oncology. Journalist David Kirby and the grandmother of an autistic child are contrasted with scientists and doctors.

Dr. Lawrence Rosen, a pediatrician and one of the speakers, told the audience that every family he treats is consumed by the issue.

“Ten years ago, I was having these discussions maybe once a week,” Rosen said “Now it’s every single family that comes in.”

While none of the speakers advocated an anti-vaccine perspective, Kirby said there are many questions that need to be resolved, adding that studying differences in the vaccinated and unvaccinated population should be a national priority.

The author of “Evidence of Harm: Mercury in Vaccines,” Kirby said he suspects that that there are children with a genetic predisposition that makes them vulnerable to an adverse reaction.

“It may be a very small percentage, but if they exist, we need to identify them, and I believe separate them out and possibly vaccinate them separately,” he said.

He also said his research showed that many of the autistic children were ill when they were vaccinated.

“You don’t vaccinate a sick child,” Kirby said. “It says so right on the label.”

Margaret Fisher, medical director of the Children’s Hospital at Monmouth Medical Center, said there are sound medical reasons for the early required immunizations.

Thos who regularly follow this topic have, too, regularly noted David Kirby’s reliance on rebranding and rhetoric to keep the notion of a vaccine-autism link alive. “‘You don’t vaccinate a sick child…..It says so right on the label’”: These short and snappy sound byte-ish phrases regularly lace the arguments of antivaccinationists, who call out “change the schedule!” and “green our vaccines.” And they are effective. As the Bergen Record notes, seemingly every family with young children is raising the question of whether or not to vaccinate.

Sound bytes stick in the mind. But surely we ought to make decisions about our children’s health based on something more substantial?

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    • Robin H. Morris

      “Sound bytes stick in the mind. But surely we ought to make decisions about our children’s health based on something more substantial?”


      Kristina, as you know David Kirby personally told me to question my own son’s autism origin, as he was the last baby born in a multiple birth. He also had surgery at 6 months of age, and yes he was vaccinated. However, his siblings were preemies as well and none of them have autism, and yes, they were vaccinated.
      Mr. Kirby’s facts do not add up. I still need substantial information.

    • autismville

      I was happy to hear Palin talking about funding IDEA in her speech just as Obama mentioned it in the debate recently.

    • Bonnie Sayers

      She did visit an adult center for autism, but still talks only about children.

    • codeman38

      Bonnie: I was about to comment on that as well! Obama’s platform actually recognizes the existence of autistic adults; I can’t recall having seen any such acknowledgement from McCain/Palin.

    • dkmnow

      Well, gee-golly-whiz, Ms. Governator, that sounds an awful lot like socialism to me!

      Oh, well. I won’t tell Joe The Plumber™ if you won’t. What he doesn’t know won’t hurt me. Yooo betcha! *wink*

    • Kristina Chew, PhD

      Regarding Palin’s comment about fruit fly research, here’s Think Progress:

      Palin did not specify what fruit fly research earmark she was referring to (presumably a grant for olive fruit fly research), but she is apparently unaware that scientific research with fruit flies has led to valuable discoveries that have boosted autism research, as a study at the University of North Carolina demonstrated last year:

      [S]cientists at the University of North Carolina at Chapel Hill School of Medicine have shown that a protein called neurexin is required for..nerve cell connections to form and function correctly.

      The discovery, made in Drosophila fruit flies may lead to advances in understanding autism spectrum disorders, as recently, human neurexins have been identified as a genetic risk factor for autism.

      The study of fruit flies has also been used for other autism research and “revolutionize[d]” the study of birth defects.

    • Regan

      I think it can be debated by the constituents of the funds whether a project is pork or not,
      such as the he referred to “fruit flies”, $742,764 by Rep. Mike Thompson (D-Calif.) for olive fruit fly research. Part of this money, $211,509, is to be spent in Paris, France.
      “The olive fruit fly has infested thousands of California olive groves [1500 producers, $66 million dollar per year industry] and is the single largest threat to the U.S. olive and olive oil industries,” he said.
      Industry desperate to control pest: Olive fruit fly attract/kill traps coming
      So they’re just “fruit flies”, but it sounds like a Main Street issue to me.

      but using the criteria for “pork” by
      Citizens against government waste
      Pork rank per capita by state
      2000 #1 Alaska Pork/Capita $636.83
      Nat’l av/person $25.92
      2001 #1 Alaska $766.11, $25.52
      2002 #1 Alaska $710.88, $32.21
      2003 #1 Alaska $610.99, $34.33
      2004 #1 Alaska $808.13, $31.17
      2005 #1 Alaska $984.85, $33.03
      2006 #1 Alaska $489.87, $30.55 primarily due to moratorium on earmarks announced and enforced by the House and Senate Appropriations Committee Chairmen in H. J. Res. 20,
      2007 No data
      2008 #1 Alaska $555.54, $33.77

      “Pork barrel” spending nationally has decreased from the high of 2006 and is somewhat less than in 2000 at the present time. According to this group, Alaska has been #1 or close to the top since 1991 through legislation via Ted Stevens-R. Funny that wasn’t mentioned.

    • Sarah

      The issue of pork money is a red herring in any case. The president will have no power to stop pork, because the federal government does not allow for line-item vetoes. Legislators will keep putting in pork barrels, and for all of McCain’s grandstanding, he won’t be able to do a thing about it. Even if all pork barrel money was eliminated, it’s still a minuscule proportion of the budget (as Obama pointed out in the last debate). The entire issue is just a way for politicians to make promises without having to mention any real cuts.

      Of course, voters can be hypocritical as well. The same people who are against pork barrel money may very well change their tune once funding for their local highways gets cut.

    • JoyMama

      I was struck at the 3rd presidential debate by a huge disconnect — when McCain injected (heh) autism into his answer from out of nowhere, but then was all in favor of educational voucher programs.

      These would be, vouchers for neurotypical kids to attend private schools that aren’t required to serve kids with special needs? Thus leaving the public schools with an increasingly disproportionate funding issue?

      I was hoping that Obama would skewer him on it. Didn’t happen.

      I hadn’t thought of the aspect of special-needs kids getting special-needs-sized vouchers, though. Would new special-needs schools spring up in response? Is this happening in this Florida situation to which Palin refers?

    • http://mayfly mayfly

      Structure 15, issue 6 June 2007

      Synaptic Arrangement of the Neuroligin/β-Neurexin Complex
      Revealed by X-Ray and Neutron Scattering


      Neuroligins are postsynaptic cell-adhesion proteins that associate with their presynaptic partners, the neurexins. Using small-angle X-ray scattering, we determined the shapes of the extracellular region of several neuroligin isoforms in solution. We conclude that the neuroligins dimerize via the characteristic four-helix bundle observed in cholinesterases, and that the connecting sequence between the globular lobes of the dimer and the cell membrane is elongated, projecting away from the dimer interface. X-ray scattering and neutron contrast variation data show that two neurexin monomers, separated by 107 Å, bind at symmetric locations on opposite sides of the long axis of the neuroligin dimer. Using these data, we developed structural models that delineate the spatial arrangements of different neuroligin domains and their partnering molecules. As mutations of neurexin and neuroligin genes appear to be linked to autism, these models provide a structural framework for understanding altered recognition by these proteins in neurodevelopmental disorders.
      Pages 693-705
      Davide Comoletti, Alexander Grishaev, Andrew E. Whitten, Igor Tsigelny, Palmer Taylor, Jill Trewhella

      Note this paper is published before the North Carolina paper and actually determined the structure of the proteins and the interaction region. It’s references.


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      I’m very much in favor of neurexin/neuroligin research, but we’ve known that neurexin and neuroligin are the proteins by which nerves communicate over synapses for some time. What was the breakthrough in the UNC study?

      Every year some very worthwhile programs are funded via earmarks. There are also those which are paybacks for monetary support, and some done to enrich the politician and his friends. Over the years the “venal” earmark has become more and more common. The last Republican-controlled Congress broke new ground in this area.

      Something needs to be done to reset the bar.

    • http://mayfly mayfly

      Regan, the senator who chairs the Appropriations Comittee tends to get the most pork. Robert Byrd, it was joked, tried to move the entire U.S government to West Virginia.

      It’s good to see some backing down from the sordid activities of the last Republican Congress, but keep in mind when originally elected that Congress forced a balance budget.

      Shows abuses on both sides of the aisle

    • Regan

      Thanks Mayfly–I have some familiarity with Senator Byrd, and also with that of Senator Inouye. To be honest, our state did pretty well in certain projects when Mark Hatfield was still in the Senate, and I think that some members of the electorate kind of banked on that.

      I agree with you about potential abuse, but sometimes what makes a catchy sound bite may not be quite so porky when studied more closely–hence the point about the fruit flies and the olive industry. It’s still interesting to me that Gov. Palin went for the easy sound bite, which preemptively steered the focus away from her own state’s rather substantial benefit from earmarks.

      Given the standing deficit and the current economic uncertainty, I believe that Sarah’s comments about what is actually doable and the relative amounts being spoken of is relevant, and somewhat eludes simple party politic dichotomy.

    • Emily

      The text of what I read quoting her leads me to believe that this is really just a backdrop for her to work in some typical policy boilerplate about “school choice” and “pork.” Nothing real there at all.

    • Kristina Chew, PhD

      And the mention, again, of “earmarks” and the sense that IDEA can be funded just by “reprioritizing” items in the budget…….

      @mayfly, still working through all the sources you cite….

    • Kristina Chew, PhD

      Response from the Democrats, as noted in the Washington Post:

      As soon as Palin spoke, Democrats issued a long list of examples in which McCain had voted against fully funding IDEA and other special education programs. They also noted that scientific studies involving fruit flies are helping further researchers’ understanding of autism, a disorder that both Palin and McCain speak of frequently while campaigning. Palin’s nephew has autism, something she mentioned in today’s speech.

      “Tragically, McCain and conservatives have spent their careers voting against the exact policies and programs Palin discussed today,” wrote Eddie Vale, a spokesman for the advocacy group Progressive Accountability, in an e-mail.

    • Wordsmith

      Regardless of the nature of Palin’s misinformed complaint regarding fruit flies, in this case related to agriculture, it will act as impetus to be used to fight funding of ALL research involving fruit flies.

    • Betty Catalina Kohanloo

      I’ve collaborated with Sudhof, Rudenko, and Deisenhofer group and personally worked on the neurexins, and yes this is the reason behind autism. This is the key, alternative splicing. Regarding who should be taking credit for this work, bring politics into the picture is rather irrelevant, as far as I know scientists are pretty free thinkers and we certainly don’t mix religion nor politics with science, that would stand in the way of progress. We all have personal opinions, we’re all human, but it is in bad taste to bring up religion, politics, or sexuality into topic, it’s actually rather tacky.

      I strong suggest that you keep up with Sudhof’s research, he’s been able to maintain his interest in neurexin and neuroligin. These are key to autism.