With thanks to OARC

5 Nov

Last week there was supposed to be a 2 day workshop of the the U.S. Interagency Autism Coordinating Committee (IACC) to update the Strategic Plan. The workshop was to be held in Washington DC. The meeting was cancelled due to Hurricane Sandy.

Behind the scenes, making things work for the IACC is OARC: the Office of Autism Research Coordination. The people of OARC do a lot, including managing the meetings. No small task for this workshop. There are about 30 IACC members and about 20 experts were brought in to consult on the Plan update. These meetings are a lot of work and OARC staff were preparing long in advance and still, I am sure, were going to be working through the weekend before the workshop. And that without hurricane Sandy. With Sandy bearing down, they had to put together contigency plans. What if some people don’t make it in time? What if people can’t come? What if power goes out? Lots of contingencies which I am sure made this whole process very complicated. I was working with them to make sure I could get in and out of DC for the meeting. Or, at least I hoped to. Airports ended up shut down. Luckily OARC saw that it was going to be unworkable and cancelled the meeting the Saturday before.

Here’s a screen shot from my email on Saturday(Click to enlarge):

The people of the Office of Autism Research Coordination (OARC) were working very hard to put this workshop together. Working hard on contingency plans. Working on the weekend. All this while a hurricane was bearing down on their homes. Thank you, OARC staff. I appreciate the dedication and the hard work.


By Matt Carey

Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.

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12 Responses to “With thanks to OARC”

  1. Eileen Nicole Simon November 7, 2012 at 00:08 #

    Cancellation (or postponement) of the workshops should give participants more time to read public comments that were submitted. Public comments should also be discussed by members of each subcommittee. Before any comment is rejected, evidence for its rejection should be cited.

    My focus was question 2 (How can I understand what is happening?). Developmental language disorder is the most serious handicap of children with autism, thus brain impairments that prevent normal language development must be looked for. Since 1975 I have tried to point out the vulnerability of the auditory system to perinatal injury (Arch Gen Psychiatry. 1975 Nov;32[11]:1439-46), and especially anoxia during childbirth. I cited two papers published in 2011 reporting malformation of auditory nuclei (the superior olivary complex) found in the brains of 9 cases of autism, and in laboratory rats exposed to valproic acid.

    I submitted comments also for question 3 (what caused this to happen?), which is the subcommittee you are on. Clamping the umbilical cord immediately at birth means that in some cases the newborn infant has not begun breathing on his own. In experiments with monkeys, breathing was prevented and the umbilical cord was clamped. Ischemic injury of brainstem auditory nuclei was the most prominent injury found.

    Immediate clamping of the umbilical cord at birth should be considered as a possible cause of the autism epidemic that has come about since the mid 1980s. I hope your subcommittee on question 3 will consider this.

    • Lara Lohne November 7, 2012 at 11:28 #

      Eileen, I only have one problem with the issues you bring up here, that being the use of the phrase ‘autism epidemic that has come about since the mid 1980s’. The clear fact that so many adults have ASD and many are only now being found to have it, should be proof against an actual rise in cases, but simply a rise in diagnoses in the children being born now. This is due to better diagnostic criteria and higher levels of awareness in the medical community on what to look for in a developing child that could be risk factors. Obviously every viable cause should be looked at, but let’s please try to remember, the cases aren’t rising, not really. Many adults who are ASD were either misdiagnosed or over looked completely as children. Especially those where something seemed to be not quite right, but when learning disability evaluations were done, the child tested in the gifted range. That child still showed characteristics which today would lead educators and doctors to suspect ASD, but which then (30 – 35 years ago) where not even considered a possibility because he could talk (yes, I am speaking about someone I know personally. We are doing everything in our power to get an evaluation, but it’s proving nearly impossible.)

      • Eileen Nicole Simon November 8, 2012 at 00:17 #

        Lara, My son just turned 50. He was born in September 1962, and suffered severe trauma and anoxia at birth. At 20 months and still not walking, we were told he had a “mild” cerebral palsy. One month later he was walking, but then his not learning to speak became our greatest concern. He finally began speaking in “echolalic” phrases, fragments of speech heard in one context and applied badly out of context in new situations. Kanner (1946) described this as “metaphorical and irrelevant language” (Reprinted in Am J Psychiatry. 1994 Jun;151[6 Suppl]:161-4).

        At age 5 we enrolled our son in kindergarten, but he was soon dismissed. They told us they could not work with language impaired children. This was before special education laws came into being. I did not know any other children like my son until he was admitted to the children’s unit (Ward 6) at the Massachusetts Mental Health Center. There for the first time I saw a few other children with autism. Other children on the ward had problems like seizure disorder, but normal language.

        My son began speaking normally, in sentences of his own making, just before his sixth birthday. Thereafter (with the guidance of a wonderful teacher) his development progressed by leaps and bounds, and by age seven we thought he was on the road to complete recovery. Sadly, by the time he reached his teenage years we realized he continued to have serious problems.

        Now I see children everywhere with autism and strange echolalic use of phrase fragments. Brainstem auditory nuclei are prominently affected by asphyxia at birth (See Windle WF. Brain damage by asphyxia at birth. Sci Am. 1969 Oct;221[4]:76-84). At birth, the anatomy of the heart has to change, to redirect blood to the lungs instead of the placenta. If the umbilical cord is clamped before this change is complete, impairment of nuclei in the auditory pathway is likely to occur.

        Clamping the umbilical cord became a standard protocol in the mid 1980s. Older textbooks taught that the cord should not be tied or clamped off until visible pulsations had ceased. Pulsations of the cord are evidence that the heart is continuing to pump blood to the placenta.

      • Lara Lohne November 8, 2012 at 03:35 #

        My older brother was born in January 1966. He has cerebral palsy and has significant mobility issues which have requires the use of crutches or a walker most of his life. He didn’t have speech delay but he had severe dyslexia as when he was first learning to read and write he would write upside down and backwards and could read better when the words were upside down. There were special ed programs in the public school system available for him and it was recommended by those educating him that he be admitted to them. My mom refused because she didn’t honestly believe that he had a disability, deep down. That is another sad, convoluted story entirely so I’ll not go there.

        My brother was born two months premature and he had spina bifida at birth. We believe those two issues combined to cause the cerebral palsy. I find it difficult to believe I guess, that there were special ed programs for my brother, born just four years after your son, but there weren’t programs for your son, even after he became verbal.

        My original point is there are many adults now who are being diagnosed with ASDs, yet they aren’t just now developing them. They were either misdiagnosed as children or overlooked completely. Obviously if there isn’t a diagnosis, and the ASD isn’t severe enough to require institutionalization, these children would be in the regular public school programs. That doesn’t mean life wasn’t difficult for them, lack in the ability to understand social cues, difficulty understanding how to ‘fit in’ and not quite able to figure out the equation (as to many of them that’s the way they view things, an equation that has a solution) and always wonder why they are left on the outskirts and ignored or bullied and teased by their peers. The actual incidence of autism has not increased, only the number of people given a diagnosis. And that is due to increased awareness and better diagnostic criteria to include those who are high functioning, but not necessarily functional enough to be considered ‘normal’.

        For the record, multiple studies that have been done in the past few years have identified genetic markers for ASDs. That being the case, we are zeroing in on what the cause is (or causes are) but figuring out what causes it isn’t going to help those who have autism now, and I believe that is what needs to be a primary focus. Not a cure, just helping with awareness, acceptance etc.

      • Eileen Nicole Simon November 8, 2012 at 14:01 #

        Lara, It was February 1972 that I first went to the Massachusetts State House with a group of parents to lobby for passage of a law to provide special education for children who had been dismissed from public schools as uneducable. I remember legislators pulling their pockets inside out saying, “Where is the money supposed to come from?” However, Massachusetts Chapter 76 became the first law in the US mandating special education.

        My son by then was a student at the Gaebler School, part of the Metropolitan State Hospital, which has since been closed. Gaebler had a bad reputation because it served a large number of juvenile delinquents. It was nevertheless an excellent school, with wonderful teachers to whom I am eternally grateful, and quite a few students were transported to the Cambridge YMCA for after-school sports and activities like photography (cameras donated by Polaroid) and learning Spanish. I am also eternally grateful to the excellent staff at the Cambridge Y.

        Back then there were still institutions for the retarded full of children (and adults). Perhaps it took deinstitutionalization to reveal previously misdiagnosed cases of autism.

        Autism has many causes. Autistic traits are described in just about every new genetic disorder discovered. Autistic traits have also been described in children with prenatal exposure to valproic acid (Depakote) and children with fetal alcohol syndrome.

        Autism for me is not acceptable. It causes too much grief for most families. This is why for the IACC strategic plan update research must be encouraged for Question 2 (What is Happening?) or what brain systems are affected? and for Question 3 (What caused this to happen?) or what perinatal events should be investigated?

      • Chris November 8, 2012 at 02:53 #

        You have one anecdote. My son could not speak either, but at least twenty years ago there was a special education. He did attempt to speak a few weeks after he started special ed. preschool as a three year old. He was up to some sentences when he was six, but as an adult his speech is still not that clear.

        And because he was evaluated before 1994 he has never had an official autism diagnosis.

        I have absolutely no idea when his cord was clamped. It was difficult enough to get him out. Because of his large head it should have been a caesarian. I am more inclined to blame his neonatal seizures on that. (and his later seizures on a now vaccine preventable disease)

        Though with some recent issues with his genetic heart condition there may also be a connection to his neurological problems. The doctor he saw for the genetic test (he did not have any of the known sequences for his heart condition) usually specializes in autism and other neurological conditions. She said there are some gene sequences that affect both the heart and the brain (one example is Down Syndrome).

        So you need more evidence than an anecdote to say “this one thing causes autism.” Because it is complicated.

      • Eileen Nicole Simon November 8, 2012 at 13:56 #

        Chris, I am so sorry to hear about the terrible experiences your son has endured. My first-born son (who is now 50) should also probably have been born by caesarean section, but then the cord might have been clamped early, to remove the baby from the surgical “sterile field.” I was subjected (without being asked) to a “routine” episiotomy, which also required removal of the baby from the sterile field. Obstetricians were beginning to take pride in being surgeons, as can be seen from the following statement by Apgar et al. (1958) on assigning the 1-minute Apgar score:

        “After a year’s trial with two individuals deciding on the score at various intervals after birth, it was decided that 60 seconds after the entire birth of the infant; irrespective of delivery of the placenta, represented the time of most severe depression after birth. In the Sloane Hospital the cord has been cut by this time, and the infant is in the hands of an individual other than the obstetrician. In many hospitals, such is not the case. Those obstetricians who practice slow delivery and delayed clamping of the cord until pulsations of the umbilical artery cease still have the infant in the sterile field. However, if the obstetrician is reminded of the passage of time by another observer, he may assign a score even though the cord is still attached. . . All infants with a score of 8, 9, or 10 are vigorous and have breathed within seconds of delivery.” [JAMA 1958; 168(15):1985-9, p1987]

        The expectation was that transition from placental to pulmonary respiration had to take place within one minute following birth. However, abundant evidence was available that this transition (requiring closure of the foramen ovale and ductus arteriosus of the heart) could take many minutes (Gunther M. The transfer of blood between baby and placenta in the minutes after birth. Lancet. 1957 Jun 22;272[6982]:1277-80).

        Clamping the umbilical cord before onset of pulmonary respiration may not cause autism, but it is nevertheless not a healthy thing to do. If the outcome is respiratory depression, nuclei in the auditory pathway are likely to be affected. Even with an Apgar score of 10, the lungs take priority, and blood will be drained from other organs. If blood is drained from the brain, ischemic injury of the auditory nuclei is likely. I believe this is something that should be discussed and proposed as a future area of research by the IACC subcommittee on Question 3, “What Caused This To Happen?”

      • Chris November 8, 2012 at 15:39 #

        Citing papers that are over fifty years old is not convincing when there are more recent papers, and millions of children who are not affected. You need to move on.

      • Lara Lohne November 8, 2012 at 18:41 #

        Eileen,

        Causes are being investigated all the time. What they are finding is primarily there is genetic influences, with possibly multiple prenatal environmental triggers. They aren’t ignoring that research, and I don’t believe they need any more encouragement for it then what Autism Speaks is giving them.

        However, there are other areas and aspects of ASD life that are being overlooked completely. That needs to change.

      • Eileen Nicole Simon November 8, 2012 at 21:23 #

        Chris & Matt Carey,

        New evidence confirms the error of umbilical cord clamping. See:
        [1] Downey CL, Bewley S. Historical perspectives on umbilical cord clamping and neonatal transition. J R Soc Med. 2012 Aug;105(8):325-9. doi: 10.1258/jrsm.2012.110316.
        [2] Mercer JS, Erickson-Owens DA. Rethinking placental transfusion and cord clamping issues. J Perinat Neonatal Nurs. 2012 Jul-Sep;26(3):202-17; quiz 218-9.
        [3] Search in PubMed for: umbilical cord clamping.

        Risk of anoxic brain impairment should be considered likely if the cord is clamped before transition from placental to pulmonary respiration has completed. Symmetric bilateral injury of brainstem nuclei has long been known to result from asphyxia in adults and children. Involvement of the auditory system is prominent. See:
        [4] Natsume J et al. Clinical, neurophysiologic, and neuropathological features of an infant with brain damage of total asphyxia type (Myers). Pediatr Neurol. 1995 Jul;13(1):61-4.

        Verification of the connection of umbilical cord clamping and damage of the basal ganglia and nuclei within the auditory system could be done with new experiments on monkeys. Clearly (and sadly) the evidence provided in the 1960s and 1970s by Windle, Myers, Lucey, and others is regarded as obsolete. But, the neuropathology of autism and its many causes should have been understood decades ago.

      • Sullivan (Matt Carey) November 8, 2012 at 21:53 #

        There are studies ongoing on cord clamping and brain development:

        EFFECTS OF PLACENTAL TRANSFUSION ON EARLY BRAIN DEVELOPMENT
        http://projectreporter.nih.gov/project_info_description.cfm?aid=8348143&icde=14377854&ddparam=&ddvalue=&ddsub=&cr=1&csb=default&cs=ASC

        PROTECTIVE EFFECTS OF DELAYED CORD CLAMPING IN VLBW INFANTS
        http://projectreporter.nih.gov/project_info_description.cfm?aid=8228042&icde=14377854&ddparam=&ddvalue=&ddsub=&cr=2&csb=default&cs=ASC

      • Eileen Nicole Simon November 9, 2012 at 01:02 #

        Matt, Thank you for these links to research proposals by Judith Mercer. The paper she wrote with Rebecca Skovgaard in 2002 is what first made me aware of the dangers of cord clamping.

        The next step should be to identify how the brain is impaired if an infant goes into respiratory depression. Experiments with monkeys provided this evidence half a century ago, but should be repeated if “old” evidence is not acceptable.

        I hope the subcommittees for updating Questions 2 and 3 will take into account stakeholder comments like mine, and that the updates will be made even if the workshops cannot be rescheduled. Thanks for responding to my comments here.

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