Committee on Oversight & Government Reform, subcommittee hearing on autism

20 May

The U.S. House of Representatives, Committee on Oversight & Government Reform, Subcommittee on Government Operations held a hearing today: Examining the Federal Response to Autism Spectrum Disorders. That hearing was live streamed and the video is now available online:



Broadcast live streaming video on Ustream

The hearing focused on a recent Government Accountability Office report: FEDERAL AUTISM ACTIVITIES: Funding and Coordination Efforts.

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25 Responses to “Committee on Oversight & Government Reform, subcommittee hearing on autism”

  1. lilady May 21, 2014 at 00:21 #

    So, I viewed the live stream broadcast and I was impressed how Dr. Insel presented the activities of the IACC, when questioned by the Congresspersons. Congressman Posey is still trying to impress us with his command of the scientific process and his command of the English language. Color me unimpressed. Potty Mouth Posey seemed to forget that he isn’t performing in front of the Autism One-Generation Rescue crowd.

    I think I spotted Jennifer Larson, Mark Blaxill and Dan Olmsted in the back row of the audience.

    • Sullivan (Matt Carey) May 21, 2014 at 01:58 #

      Congressman Posey asked if there were studies on thimerosal and autism which did not involve Poul Thorsen (who has been indicted for financial fraud).

      A minute on pubmed would show him multiple such studies. Perhaps the people who are lobbying Mr. Posey haven’t actually taken the time to do the research?

      Mr. Posey suggests that if good research on thimerosal and autism were to come out, all parents would accept it. There is so much good data out there and it hasn’t changed the minds of the hard core.

      • ML May 22, 2014 at 02:34 #

        Please let me know what good data there are out there. Thanks

  2. brian May 21, 2014 at 01:07 #

    From Dr. Insel’s testimony: “The good news is that both neuroscience and genomics together are actually helping us to begin to pinpoint where the environment must be is taking its toll [in ASD], and all the evidence right now points to midgestation, second trimester.”

    • Sullivan (Matt Carey) May 21, 2014 at 02:07 #

      He’s right. And some of those watching did not want to hear that.

      • ML May 21, 2014 at 12:43 #

        The comments of Dr Manuel Casanova about the last published work of Dr Courchesne are worth reading
        http://autismodiario.org/2014/05/09/parches-de-corteza-malformada-en-cerebros-de-individuos-con-autismo/

        The results from Courchesne may be assigned to tissue degradation…

        The postnatal contribution should be better researched.

      • lilady May 22, 2014 at 17:49 #

        SFARI has an interesting article, with citations, about the intrauterine environment and its impact on the developing fetus:

        http://sfari.org/news-and-opinion/viewpoint/2012/placenta-plays-potent-role-in-autism-risk

      • Eileen Nicole Simon May 22, 2014 at 20:14 #

        lilady, thank you for the link to the SFARI article on the placenta. I will look at the references to articles describing research with non-human primates. In the past I have contacted Dr. Amaral at the MIND institute about repeating the experiments on asphyxia at birth with monkeys. He is not interested, but brain development could now be followed via MRI without having to “sacrifice” the animals to look for neuropathology.

        Faro and Windle found abnormal maturation of the cerebral cortex in monkeys that had only brainstem injury from asphyxia (Exp Neurol 1969, 24:38). The experiments on asphyxia should be repeated to see if abnormal patches in the cortex might be the result of abnormal postnatal maturation. Heterotopia were also found in the human brains with abnormal patches. These abnormalities sound a lot like prenatal exposure to alcohol, valproic acid, etc. It is shocking that women are now being prescribed so many drugs during pregnancy.

        As for premature infants, the biggest concern is respiratory distress. All infants since the mid 1980s have been subjected to clamping of the umbilical cord immediately after birth. If clamped before the first breath, even full-term babies may need resuscitation. According the the Neonatal Resuscitation Manual, 10 percent of all newborns need some assistance to begin breathing. Ventilation of the lungs is the assistance given, but the alveoli cannot expand until their surrounding capillaries are filled with blood to receive oxygen.

        Cutting off postnatal placental circulation disrupts oxygen delivery and also a final boost of stem cells. Injury of the brain caused by asphyxia will evoke inflammation and be followed by an immune response. Clamping the umbilical cord at birth is a medical error that must be stopped.

      • Sullivan (Matt Carey) May 22, 2014 at 22:40 #

        Work is ongoing in this area, with many recent papers published:
        http://www.ncbi.nlm.nih.gov/pubmed/?term=delayed+umbilical+cord+clamping

        There are three studies ongoing exploring cord clamping or a related (cord milking) topic:

        EFFECTS OF PLACENTAL TRANSFUSION ON EARLY BRAIN DEVELOPMENT
        http://projectreporter.nih.gov/project_info_description.cfm?aid=8554794&icde=20465664&ddparam=&ddvalue=&ddsub=&cr=3&csb=default&cs=ASC

        EVALUATION OF UMBILICAL CORD MILKING ON SYSTEMIC BLOOD FLOW IN PREMATURE INFANTS
        http://projectreporter.nih.gov/project_info_description.cfm?aid=8547311&icde=20465664&ddparam=&ddvalue=&ddsub=&cr=2&csb=default&cs=ASC

        with the interesting statement: ” One possible way of improving blood flow is to allow premature infants to passively receive more blood from the umbilical cord and placenta by delaying the clamping of the umbilical cord after the infant is born. However, a delayed clamping of the umbilical cord is not usually done in extremely premature or sick babies, because it postpones their initial stabilization and contributes to neonatal hypothermia. ”

        FACILITATING THE PHYSIOLOGICAL TRANSITION AT BIRTH IN TERM AND PRETERM NEONATES
        http://projectreporter.nih.gov/project_info_description.cfm?aid=8547734&icde=20465664&ddparam=&ddvalue=&ddsub=&cr=1&csb=default&cs=ASC

        There are many papers and it appears a debate ongoing in the literature:

        A recent paper
        http://www.ncbi.nlm.nih.gov/pubmed/24756128

        CONCLUSIONS AND RELEVANCE Delayed cord clamping did not affect iron status or neurodevelopment at age 12 months in a selected population of healthy term-born infants. However, it may not be possible to demonstrate minor effects on neurodevelopment with the size of the study population and the chosen method for assessment. The current data indicate that sex may influence the effects on infant development after DCC in different directions. The magnitude and biological reason for this finding remain to be investigated.

        An ongoing trial is discussed here, including 2000 very preterm infants
        http://www.ncbi.nlm.nih.gov/pubmed/24686151

        Another RCT, checking to 4 months of age
        http://www.ncbi.nlm.nih.gov/pubmed/23336628

        Work has and continues to be done.

      • Eileen Nicole Simon May 23, 2014 at 11:50 #

        Matt, thank you for your response, and the links, especially to NIH projects. I have known Judith Mercer and followed her research for years. The paper she co-authored with R. Skovgaard on neonatal transition should be required reading for everyone (J Perinat Neonatal Nurs. 2002, 15:56).

        I am especially happy to see that Stuart Hooper’s research on lung aeration at birth is funded by NIH. I attended a presentation he made in 2006 at the Fetal and Neonatal Physiological Society meeting, a paper now free online at http://www.ncbi.nlm.nih.gov/pubmed/17536040. Now I see much more in PubMed, searching via Hooper SB.

        It is sad that randomized controlled trials are now needed to investigate current practice versus normal physiology. Use of a clamp on the umbilical cord was first described by Magennis (Lancet 1899 May 20; 153[3951]:1373), with instructions to apply the clamp after pulsations of the cord have ceased. The same instructions were given by Wechsler (Am J Obstet Dis Women Child 1912, 60:85). Until the 1930s use of a clamp, versus a piece of sterile string, raised vehement objections.

        In the 1930s collecting cord blood for transfusions first came into vogue (Starr DP, Blood: an epic history of medicine and commerce. New York, AA Knopf, 1998). I have wondered if the children described by Kanner in 1943 may have been among the first to be subjected to immediate clamping of the cord for blood donation. I just found and downloaded the Kindle ebook by Starr. Have a “look inside” on amazon.com.

        Thanks again for responding to me here. It has been so frustrating to try to initiate discussions with members of the IACC. In the report to congress, the claim is made that stakeholder input has been used to inform the Strategic Plan. This is absolutely untrue. If reauthorized, I hope the committee in the future will openly address all stakeholder concerns. Evidence is available or not, for or against, all of the issues raised by those of us with children most severely affected by “autism” of the neurologically debilitating type.

  3. Eileen Nicole Simon May 21, 2014 at 12:17 #

    Matt, where can I read the evidence implicating midgestation as the time of environmental injury?

    Exposure to substances like valproic acid (VPA) clearly have their effect during gestation. However, see the paper by Lukose et al. (Brain Res 2011, 1398:102) which reported prenatal damage in the superior olivary complex (SOC) in laboratory rats exposed to VPA during gestation. The same abnormality was reported by Kulesza et al. in 9 brains from people with autism (Brain Res 2011, 1367:360). My suggestion that these two papers be included in the Summary of Advances bibliography was ignored.

    I will continue to point out a seminal paper by Seymour Kety, free online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1804882/?tool=pubmed, which revealed that blood flow is not uniform throughout the brain, but is highest in nuclei of the brainstem auditory pathway. Blood flow was highest in the inferior colliculi, and almost as high in the SOC.

    The auditory system will thus be very vulnerable to any environmental substance that gets into the circulation during prenatal life. It is shocking to learn that VPA and other drugs are being prescribed during pregnancy.

    Difficult birth is an environmental factor that has been reported for decades as a factor predisposing to autism. Damage in the inferior colliculi caused by asphyxia at birth was first reported in 1959 by Ranck & Windle (Exp Neurol 1:130). The asphyxia was produced in monkeys by preventing breathing and clamping the umbilical cord at birth. The same damage has been reported in human infants.

    FH Gillis (J Neuropathol Exp Neurol 1963, 22:318) suggested that damage of the inferior colliculi be investigated as a possible cause of childhood aphasia or Moebius syndrome. Loss of language in infancy, or its failure to develop, should be a primary focus of research on autism.

    Since the “Autism Summit” and IACC meeting in 2003, I have been trying to be heard by members of successive IACC committees on language development and oxygen insufficiency at birth. Since the mid 1980s all infants are being subjected to a lapse in respiration at birth because of the obstetric protocol to clamp the umbilical cord immediately after birth. The long tradition had been to wait for placental circulation to cease, or at least for pulmonary respiration to be fully established.

    I am angry that my comments have at best been mentioned only briefly in passing by members of the IACC. I will continue to try to be heard…

    • lilady May 23, 2014 at 04:32 #

      In reply to Eileen Nicole Simon’s statement: “These abnormalities sound a lot like prenatal exposure to alcohol, valproic acid, etc. It is shocking that women are now being prescribed so many drugs during pregnancy.”

      As far as I know, there are far less drugs prescribed for women during pregnancy, than there were years ago. Women are cautioned about taking any OTC medications or prescribed medications, without consulting their obstetrics provider and the recommendations for vaccines from the CDC and the ACOG are here…specifically a Tdap booster ~ 37 weeks gestation during each pregnancy and a seasonal influenza vaccine shot with killed viruses, during the seasonal influenza season.

      http://www.cdc.gov/vaccines/pubs/preg-guide.htm

      It is recommended for women who are “planning a pregnancy” to start prenatal vitamins and folic acid before conception to lessen the risk of neural tube defects.

      http://www.acog.org/~/media/For%20Patients/faq056.pdf?dmc=1&ts=20140522T2311208379

      Maternal Valproic Acid (Depakene) use has been implicated in having a child diagnosed with an ASD and other developmental disabilities. Other anticonvulsants, specifically phenytoin (Dilantin) and carbamazapine (Tegretol), have also been implicated. A woman contemplating pregnancy should consult her neurologist and her obstetrician to determine if the risk of seizure activity for her and her fetus, is greater than than the risk of withdrawing anticonvulsants during her pregnancy.

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1734633/

      Are there any other prescribed medications that you have concerns about?

      • Eileen Nicole Simon May 23, 2014 at 13:02 #

        Alcohol use and addictions are often dark secrets. Autism has been reported in children with fetal alcohol syndrome (Nanson JL. Alcohol Clin Exp Res. 1992, 16:558), and prenatal cocaine exposure (Davis E et al. J Natl Med Assoc. 1992 84:315). These were just the first to come to my attention.

        Prenatal exposure to alcohol affects the same brainstem sites damaged by asphyxia at birth (Vingan RD et al. Alcohol Clin Exp Res. 1986, 10:22). Vingan et al. used the method of Sokoloff, which revealed that the brainstem sites of highest blood flow also have the highest rates of aerobic metabolism.

        The bilaterally symmetric pattern of brainstem sites damaged by asphyxia at birth are the same as in Wernicke’s encephalopathy (Thomson AD et al. Alcohol Alcohol 2008, 43:174). It is the high blood flow and metabolism in these subcortical nuclei that make them vulnerable to any toxic substance in the circulation.

        There should be concerns that any chemical substances taken during pregnancy might adversely affect the brainstem nuclei of high blood-flow and metabolic rate. Damage of nuclei in the auditory system is likely to impede language development, and impairment of the basal ganglia should be investigated as the cause of choreo-athetoid (repetitive) movement disorder in autism.

        Neurological consequences of substance use during pregnancy should be a focus of discussion among members of the IACC.

    • Science Mom May 23, 2014 at 15:01 #

      Ms. Simpson, you appear to have formed a conclusion and scraping PubMed for studies which support your conclusion rather than the other way around. You are relying upon some pretty antiquated data to support your hypothesis. Just a cursory search gave me this: http://www.bmj.com/content/343/bmj.d7157
      Effect of delayed versus early umbilical cord clamping on neonatal outcomes and iron status at 4 months: a randomised controlled trial

      Results At 4 months of age, infants showed no significant differences in haemoglobin concentration between the groups, but infants subjected to delayed cord clamping had 45% (95% confidence interval 23% to 71%) higher mean ferritin concentration (117 μg/L v 81 μg/L, P<0.001) and a lower prevalence of iron deficiency (1 (0.6%) v 10 (5.7%), P=0.01, relative risk reduction 0.90; number needed to treat=20 (17 to 67)). As for secondary outcomes, the delayed cord clamping group had lower prevalence of neonatal anaemia at 2 days of age (2 (1.2%) v 10 (6.3%), P=0.02, relative risk reduction 0.80, number needed to treat 20 (15 to 111)). There were no significant differences between groups in postnatal respiratory symptoms, polycythaemia, or hyperbilirubinaemia requiring phototherapy.

      You also don’t seem to understand ethics and science. Animal studies, particularly primates and those involving inflicting harm are not taken lightly and there must be justification for doing so. It’s not shocking at all that you are being dismissed. I would suggest taking a different tact, distancing yourself from the anti-vaxx brigade and presenting your case based upon current data.

      • Eileen Nicole Simon May 23, 2014 at 16:53 #

        Science Mom, your comment about antiquated data reflects the most serious defect in much of recent research on autism. Note the comment I made above to the reply from Matt Carey. It is appalling that randomized controlled trials are now needed to investigate what should be common knowledge about transition from placental to pulmonary respiration, and compared to the current practice of quickly using a clamp on the umbilical cord.

        I learned in 10th grade biology that the anatomy of the heart changes after birth (and not always within seconds) to redirect blood flow from the placenta to the lungs. That was back in the 1950s, and I am glad I am still breathing on this earth so that I can remind people that we weren’t less well informed back then. How is it that clamping the umbilical cord immediately after birth is now assumed to be natural?

        The brain damage found in monkeys subjected to asphyxia at birth back in the 1950s was in nuclei of the auditory pathway. This was not recognized as something that might interfere with language development in human children. Why should this clearly documented damage not be looked at again?

        Experimental asphyxia was caused by clamping the umbilical cord and preventing the onset of breathing. The animals were killed to look for neuropathology. Today the brain and its development could be looked at in MRI scans, without having to kill the animals. Back in the 1950s brainstem damage in the monkeys subjected to asphyxia was considered to be “minimal.” Cerebral palsy was caused by partial obstruction of blood flow to the placenta, and there should be no need for such drastic experimentation to be done again. See Myers RE, Am J Obstet Gynecol. 1972, 112:246. Let me know if you think something more modern on causation of cerebral palsy should be considered.

        I will continue to quote Cicero (106-43 BC): “If no use is made of the labors of past ages, the world must remain always in the infancy of knowledge.”

      • lilady May 23, 2014 at 17:03 #

        Pardon me, Ms. Simon: You made a statement about alcohol intake and prescribed medications.

        “These abnormalities sound a lot like prenatal exposure to alcohol, valproic acid, etc. It is shocking that women are now being prescribed so many drugs during pregnancy.”

        I provided you with a quick outline of medications prescribed during pregnancy and then you go off on a rant about about FAS and alcohol use. Time for you to stay on topic and provide us a basis for your “shock” about the overuse of prescribed drugs during pregnancy.

        I’ll be waiting for your (on topic) reply.

      • Eileen Nicole Simon May 23, 2014 at 17:30 #

        lilady, what I said (second to last paragraph above):

        There should be concerns that any chemical substances taken during pregnancy might adversely affect the brainstem nuclei of high blood-flow and metabolic rate. Damage of nuclei in the auditory system is likely to impede language development, and impairment of the basal ganglia should be investigated as the cause of choreo-athetoid (repetitive) movement disorder in autism.

        Discussion of drugs should focus on what effects they may have on the brain, and why. The bilaterally symmetric brainstem lesions of Wernicke’s encephalopathy have been known for more than 130 years, and this is knowledge that should not be forgotten as too old or irrelevant.

        So vitamins, especially from Whole Foods, should be OK, except maybe not the fat-soluble ones (A,D, E). Vaccines? I don’t know. I get mine because it’s required for my job. I was just surprised perusing the Nursing drug handbook we use at work about how many drugs have warnings for pregnancy, when I thought women were warned not to take anything, not Tylenol or Motrin, or blood pressure meds, etc. Too many people take too many drugs.

      • Science Mom May 23, 2014 at 17:57 #

        Experimental asphyxia was caused by clamping the umbilical cord and preventing the onset of breathing. The animals were killed to look for neuropathology. Today the brain and its development could be looked at in MRI scans, without having to kill the animals. Back in the 1950s brainstem damage in the monkeys subjected to asphyxia was considered to be “minimal.” Cerebral palsy was caused by partial obstruction of blood flow to the placenta, and there should be no need for such drastic experimentation to be done again. See Myers RE, Am J Obstet Gynecol. 1972, 112:246. Let me know if you think something more modern on causation of cerebral palsy should be considered.

        Ms. Simpson, I know this has been your idée fixe for perhaps decades but you won’t be any more successful now than you were then. The reason being, as I stated is that you are mining for data to conform with your bias. Let’s start with your monkey/asphyxiation paper. The monkeys were held anoxic, the asphyxiation was not due to cord-clamping alone. Not only does this not remotely resemble childbirth practices but does not resemble autism. You also still don’t grasp ethics; this idea may be important to you but does nothing to further our scientific knowledge of autism. MRIs do not reveal everything an autopsy would and visa versa. Not only that but primates, sentient creatures would have to be forced into anoxia and for what exactly?

        How is it that clamping the umbilical cord immediately after birth is now assumed to be natural?

        Frankly, I would like to see the practice changed for uncomplicated child births but not for the same reason you would and mine is based upon the most current evidence which has to do with iron. But immediate cord clamping does not cause asphyxiation which you are trying to claim. You can quote whomever you like, they don’t lend validity to your claims.

      • lilady May 23, 2014 at 18:39 #

        Ms. Simon: You are still off-topic and so fixated on cord clamping that you are willing to dredge ancient studies and quote mine to justify your fixation.

        You’ve been provided with current studies about cord clamping by Matt Carey and Science Mom, to update your out-of-date knowledge base.

        Why don’t you declare yourself as being anti-vaccine and anti-science? You’re not on Age of Autism now, and for every statement you make, we demand proof. Put up or shut up and stay on topic.

      • Lara Lohne May 23, 2014 at 19:31 #

        Personally, I think way too much research dollars are going into causation which would only be utilized for prevention/cure and that is in essence eugenics. Elimination of an entire culture of people who aren’t suffering and don’t wish to be cured, simply want to be accepted, listened to and understood. There are still far too few who listen and take to heart and mind what autistic adults have to say on the subject. I don’t think a definitive cause will ever be found because there are many situations and circumstances that will lead to autism manifesting. That doesn’t matter, autistics have been part of human history as far as we can remember, if one will look at the history and recognize it for what it is. We don’t need to be prevented, nor cured. We aren’t a mistake! We need acceptance. We need proper supports and accommodations for those things that are challenging for us, we need understanding rather than this hyper-focused rush to eliminate us from the world.

      • Sullivan (Matt Carey) May 23, 2014 at 20:19 #

        as always, you can submit these comments to IACCPublicInquiries@mail.nih.gov and they will be read by members of the IACC.

      • Sullivan (Matt Carey) May 23, 2014 at 23:08 #

        I don’t think we need to be so direct at this point.

      • Eileen Nicole Simon May 23, 2014 at 22:22 #

        Science Mom, if a baby does not breathe immediately after the cord is clamped, resuscitation may be needed. A lapse in respiration does not have to be more than a minute or 2 to 5 or 6 for impairment of nuclei in the auditory pathway. Persistent iron deficiency is not good, but damage in the auditory pathway is associated with impaired comprehension of spoken language. Recent references are in a presentation I made at IACC in 2008, online at http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf.

        lilady, thalidomide or alcohol early in gestation cause severe disruption of brain development, including heterotopias and possibly also “patchy abnormalities.” Nuclei in the brainstem auditory pathway are developed and functional by 29 weeks of gestation, and are then susceptible to damage from toxic substances in the circulation or disrupted blood flow.

        Lara, there are two kinds of autism (1) a non-disabling difference, and (2) a neurological disorder that only bears some resemblance to the non-disabling type. The majority of parents dealing with non-verbal children are not able to share your personal opinion.

        Matt, I responded on this blog to your posts about the IACC. I have, and will continue to submit comments to be read by members of the IACC. I will also continue to request that stakeholder comments be discussed at IACC meetings.

      • Sullivan (Matt Carey) May 23, 2014 at 23:06 #

        Ms. Simon,

        I expect and encourage you to continue to make your opinions heard.

        I might ask that you recognize that I have discussed your ideas. Here. I’ve looked up research before and this week on the topic you bring up. I’ve seen, then as now, that research has and continues to be done on the topic of cord clamping. I can’t speak for anyone else directly, but I expect that many if not all have taken the time to explore the questions you pose. Perhaps, like me, they have found that there is ongoing research and focus their discussions on other areas. Again, my views expressed here and even at IACC meetings are my own.

        “there are two kinds of autism (1) a non-disabling difference, and (2) a neurological disorder that only bears some resemblance to the non-disabling type. ”

        On this we disagree. Difference does not mean non-disabling. While some do not have all the disabilities that my child has, say they lack ID and have fluent speech, there are those with whom autistic features are similar. Just as there are many who do have ID and lack fluent speech whose autism presents very differently.

        “The majority of parents dealing with non-verbal children are not able to share your personal opinion.” I wonder at the choice of the word “able”. Of course we are able. Many of us share to some degree or another Lara Lohne’s views.

        I wish you well.

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