ASAN Statement Opposing House CAA Re-authorization Legislation H.R. 4631

15 May

The Autistic Self Advocacy Network (ASAN) has issued a statement on the re-authorization of the Combating Autism Act:

ASAN Statement Opposing House CAA Re-authorization Legislation H.R. 4631

The Autistic Self Advocacy Network is deeply concerned by the recently introduced Combating Autism Re-authorization Act of 2014 (H.R. 4631). H.R. 4631 fails to address many of the longstanding problems in the CAA, including the lack of funding and attention to research on services and the needs of adults, failure to include adequate self-advocate representation on the Interagency Autism Coordinating Committee (IACC) and the use of language offensive to and stigmatizing of Autistic Americans. Currently, only a small fraction of federal research funding focuses on effective delivery of services or on the needs of autistic adults, both of which are issues of pressing concern to autistic people and their families. Of NIH’s $217 million investment in autism research, only 2.4% has gone towards improving services and only 1.5% toward research on the needs of adults.

H.R. 4631 would exacerbate these problems by extending the existing structure of CAA to 2019. In addition, the legislation would create four IACC members appointed by Congress, risking the further politicization of federal autism policy. The addition of four IACC membership positions to be awarded by politicians is particularly troubling in light of H.R. 4631’s continued neglect of a critical group that is currently dramatically underrepresented on the IACC: autistic people themselves. The IACC is only currently required to have one of its members be an individual with an autism spectrum diagnosis, a status quo that H.R. 4631 would perpetrate. Finally, CAA’s use of the language of “combating autism” shows a profound disrespect and lack of concern for the preferences of autistic people and our families who find such language offensive and hurtful. H.R. 4631 maintains that language.

Last month, ASAN was joined by eighteen other disability rights organizations calling for reforms to CAA to address these problems. Regrettably, H.R. 4631 has undertaken no such changes, preferring to deepen commitment in a status quo that actively works against the interests of autistic people and our families. Support for legislation that perpetrates dangerous and hurtful trends in the lives of Autistic Americans is incompatible with friendship with the self-advocate community. Until such time as these issues are addressed, ASAN strongly urges opposition to H.R. 4631.

What Can I Do?

1) Contact Your Member of Congress and Urge Them To Oppose H.R. 4631. You can reach your Representative by calling the Capitol Switchboard at (202) 224-3121 or by using this phone tool from the Arc of Maryland.

2) Tweet to your Representative why you oppose H.R. 4631 – use the hashtag #StopCombatingMe to help build momentum for our campaign.

3) If you belong to an advocacy organization, contact ASAN about signing on to our joint letter opposing H.R. 4631 by e-mailing Samantha Crane, ASAN’s Director of Public Policy, at scrane@autisticadvocacy.org

Advertisements

9 Responses to “ASAN Statement Opposing House CAA Re-authorization Legislation H.R. 4631”

  1. Eileen Nicole Simon May 16, 2014 at 11:41 #

    Fifty years ago this month, May 1964, I was told my 20-month old son had a “mild” form of cerebral palsy. I pushed his stroller out of Children’s Hospital in Boston onto Shattuck Street, sobbing with grief. Halfway down the street I stopped to wipe my tears and saw I was in front of the Harvard Medical School Library. I picked up my baby and went inside.

    “I need to read everything I can on cerebral palsy,” I was sobbing again.

    “Oh my dear,” one of the kind librarians said as she came over to comfort me.

    That was the beginning of my search for everything I could find on the effects of trauma and oxygen deficiency at birth. The librarians at the Countway Library of Medicine helped me more than any doctor in finding answers to my questions.

    Two years later in 1966, my son was diagnosed with autism. I am eternally grateful to staff at the Cerebral Palsy Clinic at Children’s Hospital, especially for the audiologists and speech therapists. My son was helped to overcome severe dysarthria. I also credit his love for music, from which he developed fluent “echolalic speech” with pronoun reversals.

    Autism? My heart leapt. Forget cerebral palsy. My son’s problems were psychological. I willingly took the blame for continuing to work after his birth as a computer programmer in the satellite tracking program.

    Autism? No, no, no, no, no!!! At the IACC meeting in April I read my 3-minute statement beginning with the proposal that two forms of autism should be distinguished, (1) a non-disabling “difference” and (2) a neurological disorder that disrupts language development. At the August meeting I plan to propose that the neurological form of autism be given a new name, perhaps “subcortical syndrome,” and I will once more describe why.

    Yes, get rid of the “Combating Autism Act.” An Interagency Childhood Neurological Disorders committee (ICND Committee) should be considered. My son could perhaps serve as a self-advocate on such a committee. Closed-captioning of the discussions should then be made available to him. Now 51 years old he is extremely high functioning, and has co-authored two memoirs with me, but he still suffers from a severe auditory processing disorder.

    Yes, he is capable of doing useful work. He is an author, but he needs a day-job if he is ever to be at least partially self-supporting. The current IACC self-advocates are not able to provide insights on the needs of people like my son.

    • Kathleen Kinsolving May 17, 2014 at 18:47 #

  2. Eileen Nicole Simon May 18, 2014 at 11:41 #

    Kathleen, thank you for sharing your video about autism. It is wonderful that your son has made such a remarkable recovery. I wish recovery were possible for all children who currently have a diagnosis of autism. But autism (even as a “spectrum”) is too imprecise a term.

    Language is the defining characteristic of the human species. Failure to develop language is the result of a serious neurological impairment. “Combating Childhood Aphasia” would be better than “Combating Autism” as a goal for a legislative act. Developmental regression with loss of early language skills is claimed by many parents as the primary problem. Whether signs of brain damage preceded “loss” of language has not been established as an absolute fact.

    My son suffered head trauma and asphyxia at birth. Damage by asphyxia of nuclei in the brainstem auditory pathway was first reported in 1959. By 1963 this was proposed by FH Gilles as a possible cause of “childhood aphasia” or “Moebius syndrome” (J Neuropathol Exp Neurol 1963, 22:318). The recent increase in numbers of children who fail to become verbal should be investigated, yes, by an act of congress. For more than 10 years I (and others) have urged the obstetric profession to stop clamping the umbilical cord immediately after birth.

    I do not have a video to put up, but the presentation I made at the IACC meeting in 2008 is online at http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf. Also worth viewing is the autism-end-it-now.org website, posted even longer ago by Dr. George Malcolm Morley.

    • Laura Meyer May 27, 2014 at 22:58 #

      Hello Eileen. I’ve met Kathleen and Spencer. Spencer hasn’t had a “remarkable recovery” — he, like my two sons and me, has been himself all along. He was never “lost” or “crashed.” Autistic is the natural state for him and millions more.

      I am sorry for your son’s condition. I can see how you would want to combat brain damage. Please don’t combat people with autistic brains that are not damaged.

      • Eileen Nicole Simon May 28, 2014 at 00:54 #

        Laura, I watched Kathleen’s video again. Spencer went to first grade. My son could not even attend kindergarten, because back in 1967 (before special ed legislation), I was told that our local elementary school could not accept children who could not speak.

        My son was then admitted to a 5-day per week inpatient program, Ward 6, at the Massachusetts Mental Health Center. I am eternally grateful to his teacher on Ward 6, who helped him learn to speak. By age 7 we believed he had overcome all of his developmental problems. Sadly, by age 17 it was clear he was in no way able to go to college.

        My son had head trauma and oxygen insufficiency at birth. Brain injury is more than just a difference. Otherwise why is there so much concern about concussions in school sports???

        Autism as a “difference” is not what the Combating Autism Act was about. It was intended to launch a search for causes of the neurological impairment that disrupts language development. The idea of “social disorder” was a euphemism adopted to diminish the seriousness of the impairment of non-verbal children.

        “Autism” clearly is not a precise description of my son’s problems. He has a severe auditory processing disorder. I don’t want this lumped in with disorders of “social withdrawal” anymore. The neurological lesion that prevents language development must be sought, and all the factors that contribute to this site of damage in the brain.

      • Chris May 28, 2014 at 01:06 #

        Unfortunately lots of kids in the early 1960s were born with several disabilities due to the rubella epidemic. Because of that institutions where they often put those children were overwhelmed, plus there were many parents who were unwilling to send their children away.

        That is one reason for the first version of the Individuals with Disability Education Act.

      • Eileen Nicole Simon May 28, 2014 at 11:28 #

        Chris, where did you learn that institutions were overwhelmed in the 1960s by children disabled by rubella? Special education legislation was first enacted in Massachusetts, I believe. My son was among those featured in a brochure on “Children out of School,” because he could read but could not speak. He was labeled “autistic” at that time, which also at that time meant non-verbal. “Autism” has taken on a new meaning, which in no way describes my son’s disability.

        Combating “autism” should be changed to something like “Understanding Neurological Disorders” (UND???). Research is needed on brain systems involved in maturation of the language circuits of the cerebral cortex. This clearly has nothing to do with “autism” as a difference.

      • Chris May 28, 2014 at 20:24 #

        Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America by Leslie J. Reagan.

        She is a historian specializing in law and medicine:
        http://www.history.illinois.edu/people/lreagan

        Just a warning, it is a very academic book, not an easy read. It was not in my public library, but in the local university library. But since I was no longer an enrolled student (dropped out of grad school again), I bought it at Amazon. Though I have since given it to someone else who is a epidemiology grad student.

        By the way, my son had seizures less than two days after birth, for which he was on phenobarbital until he was a year old. Then a couple of months later he had a now vaccine preventable disease and another very very bad seizures. So he is disabled, with a genetic heart condition on top of that. He could not speak when he was three years old, and still has autistic like behaviors. Though he was never diagnosed with autism, because the DSM IV was not in effect in 1992.

  3. Eileen Nicole Simon May 29, 2014 at 02:23 #

    Chris, thanks. I have ordered Dangerous Pregnancies on interlibrary loan, and look forward to reading it.

    I am sorry to hear about your son’s problems. Research on causes and brain pathology is important. If “autism” is claimed by people who are different but not disabled, then another name (or names) must be found to describe the afflictions of children who do not learn to speak, and who have additional problems like seizures and involuntary movements.

    My son suffered head trauma (cephalhematoma) and anoxia at birth. The brain damage caused by asphyxia at birth was first reported in 1959 (Ranck & Windle, Exp Neurol 1:130), and in 1963 proposed as a possible cause of childhood aphasia (FH Gilles, J Neuropathol Exp Neurol 22:318). I have been criticized for citing evidence that is “too old,” but the evidence that led to development of the polio vaccine is even older. Is there more modern evidence that refutes the research of the 1950s and 60s???

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: