TED Talk: Steve Silberman: The forgotten history of autism

22 Jun

Steve Silberman has been researching the history of autism for 5 years.  I met him at the start of this journey, at IMFAR in San Diego and even then he had a good grasp of autism.  Since then he has unearthed a great deal and I am eagerly awaiting his book (which I have already pre-ordered).

Recently, Mr. Silberman gave a TED talk: The forgotten history of autism.  And it is now online.

By Matt Carey

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32 Responses to “TED Talk: Steve Silberman: The forgotten history of autism”

  1. Gone Wild June 23, 2015 at 01:50 #

    Reblogged this on Asperger: The HypoSocial Human and commented:
    A nice summation – but the problems remain: a $9 BILLION per year Autism industry has overwhelmed individual truths. And I still do not agree that Asperger’s is properly located on the “spectrum.”

    • Chris June 23, 2015 at 17:07 #

      Apparently the folks who did DSM V agreed, so it was removed. Also, while my son could be called Asperger’s he would not have been given that diagnosis in DSM IV. That is because he could not speak when he three years old, it took ten years of speech therapy and special ed. intervention for him to speak. Of course his speech is very affected.

      In 1991 I was told by the neurologist that he was not autistic, even though he had no speech. Mostly because my son had the audacity to smile and giggle. Oh, he had a history of seizures, and his intelligence was in the normal range.

      All through school I was told he was going to be okay, even though of his anxiety and social issues. In his senior year the high school psychologist was the first to tell me she thought he was autistic. Except she could not give him a diagnosis, and even though they had an “autism program” he would have lost services. Because of his normal intelligence he was getting the help he needed, especially in English and Math.

      Even though after seven years he got an associates degree from a community college, he cannot get a job and has issues with his short term memory. So he is getting services from the state’s Dept. of Vocational Rehabilitation, but they needed a diagnosis. So he finally has an official Autism Level 2 diagnosis, with details on his strengths and deficits. Because it is not “a spectrum” but “lots of spectrums”… and the psychologists explained where he stood with both DSM IV an DSM V.

      • Gone Wild June 23, 2015 at 17:37 #

        Well- it’s a mess, isn’t it? The child is being defined by a “spectrum” that “professionals” have created from THEIR ideas and prejudices, and an inability to look at children / people as individuals. Everyone must belong be shoved into a category, regardless of its arbitrary definition – an artifact of their particular way of seeing human behavior as pathological if it deviates from THEIR narrow and harmful definition. I was diagnosed Asperger at a late age, after realizing that my father was a “classic” male Asperger. I would say that I have experienced far more rejection due to being an intelligent female, than from social deficits. These “disorders” have a very heavy social bias and content that interferes with individuals being respected as individuals and having access to real appropriate help (if they so desire!) with life skills or physical needs.

      • Chris June 23, 2015 at 18:13 #

        This is why I took him to two different clinics for a diagnosis. Each one of them showed us a sheet of what was required for a diagnosis, and pointed out the tests of where he stood for each one.

        They pretty much came out the same. What was important was that they included ways to accommodate his needs, because the short term memory issue is very real. It is something we have dealt with for ages. It took many times to explain how the washing machine worked, but once he got it down he was able to do his own laundry. If we write a list of tasks that need to be done he becomes a really good house sitter.

        Now we have to work on his appearance, since taming his gorgeous wavy hair that he is growing long is a problem, and he will not let anyone touch him. So he looks a bit scarey. I dislike having to explain to neighbors that he is not violent.

        And if you did get an actual Asperger’s diagnosis, you probably do not have his speech deficits, since the criteria in DSM IV was to have somewhat normal speech development and not a speech disorder. Because he is an adult providers insist on talking to him, but after they try to understand him they have him hand the phone back to me. Fortunately he writes very very well.

        When he was in preschool he was in a program that was specific for children with speech disorders, and there was no program for autism. I Google stalked some of his classmates, and at least a few now have autism diagnoses.

        There is a saying: if you have met one person with autism, you have met exactly one person with autism. Each and everyone is completely different from the other.

  2. davejersey June 23, 2015 at 04:01 #

    Any way to add a Twitter link directly into your email posts? I’d be happy to tweet some to my 6000 followers in Twitter.

    Dave in New Jersey

    Sent from my iPad

    >

    • Sullivan (Matt Carey) June 23, 2015 at 04:48 #

      I hadn’t thought about the twitter link. Great idea. I’ll check into if/how that could be done.

    • Sullivan (Matt Carey) June 23, 2015 at 05:34 #

      OK–I think I can make that happen in the future. It means sending a tweet before I actually publish, but that is doable. I don’t think I can do this automatically.

  3. Joel A. Harrison, PhD, MPH June 24, 2015 at 15:46 #

    Silberman gets it completely WRONG. Kanner did not, I repeat, did not blame autism on refrigerator mothers. That was Bruno Bettleheim in his book “The Empty Fortress,” who claimed he based his psychoanalytic discoveries on extensive interviews with numerous children, later found to be untrue, he only interviewed a handful. Kanner described children who from birth showed signs of autism, e.g. not showing a preparatory response to being picked up by their parents. Kanner was clear he believed it a mainly genetic disorder. It is true that thanks to Bettleheim’s blaming parents anything that would absolve parents of blame, e.g. vaccinations, would be picked up on. Kanner did not “brag” about turning away kids without diagnosing them. I have over the years read probably all of Kanner’s papers and Silberman just plain gets it wrong! This is really upsetting, knowing that many people view Ted Talks, that such blatant disinformation is being promulgated.

    Kanner did, later on, criticize the broadening of the diagnosis of autism, today, a number of disorders included under Autism Spectrum Disorders. Remove Aspergers and the numbers go down significantly. What was once considered poor social skills and/or eccentric behavior is now included as ASD.

    • Sullivan (Matt Carey) June 24, 2015 at 18:54 #

      Kanner's first paper

      I wasn’t aware how much the cold-parent idea went back to Kanner, but the idea that Bettleheim was not original is not a surprise. Bettleheim was a hack.

      That said, Kanner speculated from his first paper on the possibility of the parent’s being disconnected and that being a contributing factor to autism. While we now know that is incorrect, Kanner did pursue to the idea. While I don’t have the original of his 1949 paper, this paper does discuss it

      https://embryo.asu.edu/pages/early-infantile-autism-and-refrigerator-mother-theory-1943-1970

      “In 1949, Kanner published “Problems of Nosology and Psychodynamics of Early Infantile Autism.” In that article, Kanner described autistic children as reared in emotional refrigerators. US child psychiatrists claimed that some psychological or behavioral conditions might have origins in emotional or mental stress, meaning that they might be psychogenic. Kanner described autism’s cause in terms of emotional refrigeration from parents into the early 1960s, often attributing autism to the lack of parental warmth.”

  4. Joel A. Harrison, PhD, MPH June 24, 2015 at 21:22 #

    While Kanner did discuss the parents’ personalities, he emphasized in almost all his articles that the disorder was inborn. He also wondered in the 1949 article why such parents also had normal children. Kanner speculated on whether the parents’ personalities may have contributed; but it was Bettleheim and his psychoanalytic approach that was the driving force behind “blaming the parents.” Kanner only speculated on how parental personality types may have contributed, Bettleheim clearly laid the blame with the parents. You have my e-mail address. If you want a pdf of the 1949 Kanner article or any of his other articles, let me know where I can e-mail as attachments.

    By the way, under your ABOUT, I mentioned how you had written a great article about my review of Wakefield’s book and that I have written four more articles, with more to come, on a webpage created for me by Every Child By Two. As a retired senior citizen I put a lot of time and effort into my papers and would hope that they get read, so I was hoping you would read them and, perhaps, write an article to draw attention to them.

  5. Joel A. Harrison, PhD, MPH June 25, 2015 at 00:22 #

    Hi:

    I just skimmed all the articles I have by Leo Kanner. I was wrong. At my age I shouldn’t rely on memory. I do definitely remember that undergraduate courses in Psychology taken back in the early 1960s still included psychoanalysis and dynamic psychology and autism was taught based on Bruno Bettleheim. Kanner wasn’t mentioned. So Silberman wasn’t totally wrong. However, with that said, whereas Kanner did in several articles discuss the families and point out, call them, refrigeration families, he did not lay blame on them, at least not in the complete emphasis used by Bettleheim. Kanner also speculated that the families may have been cold because of the innate non-responsiveness of the child; but rejected that saying they would have shown similar personality traits even if they had not had an autistic child. Kanner goes on to discuss similar traits among relatives. Given that Kanner over and over emphasizes the innate/genetic component of the autistic child, one could speculate that the families personalities also had a genetic component. And, as I mentioned above, Kanner wondered why these families also had normal children.

    I think my problem with Silberman was two parts: 1. his making it seem that Kanner’s emphasis was the parents, which it wasn’t and 2. the term “refrigerator mother” was clearly Bettleheim’s. But, I should have first relooked at my collection of Kanner’s articles before going off half-cocked. Bettleheim was simply a con artist.

    My offer to e-mail attached copies of any or all of Kanner’s articles still stands. You can read them and see if my “skimmed” reading is correct. I am busy working on my next vaccination article so really don’t have the time to re-read all of Kanner’s articles carefully.

    You might also find a copy of a book that contains many of his published articles and a few articles only in the book at Amazon Marketplace. Leo Kanner, “Childhood Psychosis: Initial Studies and New Insights,” New York: V.H. Winston & Sons, 1973. It includes the 1949 article on Nosology.

  6. Eileen Nicole Simon June 25, 2015 at 13:16 #

    My autistic son is 52, and I only met other autistic children when he was admitted to the children’s unit at the Massachusetts Mental Health Center in 1968. However, another condition known as “minimal brain dysfunction” (MBD) was quite common, and “patterning” exercises were widely promoted as an aid to neural plasticity. MBD became “attention deficit disorder” ADD, with or without hyperactivity.

    Language development was the primary problem for my son, as for the other autistic children on the children’s unit.

    My son had a difficult birth. This seemed the obvious cause of his problems. Then I read an article by WF Windle in the October 1969 issue of the Scientific American on brain damage caused by asphyxia at birth. The greatest injury was to relay centers in the brainstem auditory pathway, which could affect language development.

    Neurodiversity looks to me like MBD, and MBD and ADD are more prevalent now than 50 years ago. In the mid 1980s an obstetric protocol was adopted to clamp the umbilical cord immediately after birth. If the newborn has not yet begun to breathe, some degree of asphyxia is likely before resuscitation is successful.

    In the UK last December NICE guidelines changed the protocol, and now the cord is not to be clamped until 1 minute after birth. This may help. Older textbooks taught that the cord should not be clamped until blood flow to/from the placenta has ceased. By nature’s plan, placental circulation continues until the fetal heart valves have closed. Clamping the cord before the first breath is a serious medical error, and should be stopped.

  7. Roger Kulp June 25, 2015 at 15:06 #

    Two articles for your consideration

    Asperger syndrome from childhood into adulthood
    Tom Berney
    Advances in Psychiatric Treatment Aug 2004, 10 (5) 341-351; DOI: 10.1192/apt.10.5.341

    As in autism, Asperger syndrome shows impaired reciprocal social interaction and restricted, repetitive or stereotyped patterns of behaviour, interests and activities. Unlike autism, intellectual ability and syntactical speech are normal. Wing and Gillberg place the emphasis on current presentation of normal IQ and speech, but ICD–10 and DSM–IV require their presence from early life. The latter presentation is unusual but was stipulated in order to define a disorder that would be an alternative to autism (rather than just a variant or subtype). It is debatable whether many of the cases described by Asperger would have met ICD or DSM criteria.

    Gillberg and colleagues proposed a set of disgnostic criteria that approximate to Asperger’s original clinical descriptions (Leekam et al, 2000). Various symptoms have been suggested as distinguishing Asperger syndrome from ‘high-functioning autism’ (i.e. autism without generalised learning disability) and the issue is clouded by the variety of definitions in use. When allowance is made for ability, there appears to be little real difference between the two except in terms of severity (Kugler, 1998; Gilchrist et al, 2001; Howlin, 2003) although self-awareness remains to be explored (Tantam, 2003).
    Is the label useful?

    Autistic-spectrum disorders comprise a group of disorders of varied form and intensity that fall on a dimensional spectrum of severity that shades into ‘neurotypical normality’ (i.e. the absence of an autistic-spectrum disorder). In clear-cut cases (exemplified by Dustin Hoffman’s character in the film Rain Man) individuals are helped by a categorical approach that gives a shorthand explanation of their difficulties. The validity of categorisation is less clear for those whose milder symptoms put them near the ‘normality’ end of the spectrum as well as for those whose florid symptomatology is limited to only some of the key diagnostic areas. Even less clear is the position of individuals who, appearing to be superficially normal, have some of the subtle but disabling psychological deficits associated with autism, affecting executive function, attention, perception and comprehension. Closer examination often reveals a mix of specific developmental disabilities which, should they include language and social impairment, it is tempting to classify under autistic-spectrum disorder, sweeping in many eccentric and isolated personalities.

    This desire to place all socially impaired patients somewhere on the autistic spectrum is offset by efforts to split off syndromes such as pathological demand avoidance (Newson et al, 2003) and semantic pragmatic (Bishop & Norbury, 2002) or multiplex developmental disorders (Towbin et al, 1993). Complicated by synonyms such as right-hemisphere or non-verbal learning disorders (Fitzgerald, 1999), the result is a confusing grouping of specific disabilities on which we impose recognisable constellations of clinical disorder (Willemsen-Swinkels & Buitelaar, 2002).

    Where should we set the boundaries of a dimensional disorder? As with the personality disorders, there needs to be a diagnostic threshold: it might be the point at which the behaviour causes distress (either to the patient or to those around) or significant problems in social functioning and performance, or at which it requires treatment. But can we fix a threshold in this way? The label of Asperger syndrome may help the bullied schoolboy but be rejected when he becomes a mathematical star enjoying university: a functional distinction of permanent traits from a disorder that depends on the setting as much as the innate characteristics. That the presence of an autistic-spectrum disorder may make it difficult for the individual to acknowledge his disability complicates this concept.

    http://apt.rcpsych.org/content/10/5/341

    And

    Hist Human Sci. 2013 Jul; 26(3): 3–31.
    doi: 10.1177/0952695113484320
    PMCID: PMC3757918
    EMSID: EMS54318
    How autism became autism
    The radical transformation of a central concept of child development in Britain
    Bonnie Evans
    Bonnie Evans, King’s College London, UK;

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757918/#section3-0952695113484320title

    • Joel A. Harrison, PhD, MPH June 25, 2015 at 15:44 #

      Hi:

      Thanks for the suggestions: however, I already have the Bonnie Evans article; but will get the other one.

  8. Eileen Nicole Simon June 26, 2015 at 14:04 #

    Adding to the comment I made here yesterday, autism has many known causes. Many more should be looked for, and for the entire spectrum: Autism, Asperger, and neurodiversity.

    Prenatal exposure to valproic acid causes injury in the brainstem auditory pathway similar to that found in the brains of 9 people with autism. See the papers by Kulesza and Lukose published in 2011. I noticed this morning in PubMed a recent paper in which they report a similar pattern of damage in people with chromosome 15q duplications.

    Brainstem centers in the auditory pathway have higher blood flow and aerobic metabolism than any other area of the brain. See the papers by S. Kety (Bull N Y Acad Med 1962) and L. Sokoloff (J Cerebral Blood Flow 1981). Both are free online via PubMed. The auditory pathway is thus especially vulnerable to any disruption of blood flow or aerobic metabolism.

    My 52 year-old son is a savant, but auditory processing disorder remains a serious impediment for him especially in noisy places. Beyond acceptance and accommodation, shouldn’t understanding and prevention be important? All causes of the increased prevalence of autism, Asperger syndrome, and other neurodiversity differences must be looked for.

    • Sullivan (Matt Carey) June 26, 2015 at 17:11 #

      Neurodiversity is not a part of the autism spectrum.

      Neurodiversity is a part of the human condition. We are all part of neurodiversity.

      • Eileen Nicole Simon June 27, 2015 at 00:05 #

        Neurodiversity seems to be a concept devised by people who claim they have autism, autism defined as a social disorder.

        My son’s social problems derive from his difficulty participating in conversations, which in turn stems from an auditory processing disorder. Auditory processing disorder also interfered with his learning to speak. He learned to speak from having learned to read first.

        His auditory processing disorder was a disability, not part of neural diversity. His difficult birth included a lapse in respiration, asphyxia, which is known to impair relay centers in the brainstem auditory pathway.

        Neurodiversity is an imprecise term, but in cases of delayed language development, it is being applied to people on the autism spectrum. Neurodiversity does not seem to include cerebral palsy or people who suffer aphasia following a stroke.

      • Sullivan (Matt Carey) June 27, 2015 at 00:22 #

        Where did you get that idea?

        Have you been reading those who actually espouse the ideas of the neurodiversity movement or those of the critics?

        Note that neurodiversity isn’t a question. It’s a fact. There is a diversity of neurologies. It’s quite precise. How people work with the neurodiversity movement can vary.

        As I said above, we all are a part of neurodiversity. Those who are allegedly “typical”, those who are autistic, those with CP, ID, bipolar, etc..

        To make the analogy with race, you seem to be taking a position along the lines of saying, “ethnic diversity is just for people of African descent. Asians and Hispanics and especially caucasians are not a part of diversity”.

        We are all a part of the various diversities of the world.
        Take a look at Nick Walker for a good discussion of the neurdiversity movement.

      • Sullivan (Matt Carey) June 27, 2015 at 02:00 #

        In case you have difficulty finding Nick’s site, here’s a good place to start

        http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

        “Neurodiversity seems to be a concept devised by people who claim they have autism, autism defined as a social disorder.”

        First off, please don’t discount people’s opinions with the “claim to have autism”. Would you appreciate it if people referred to you as the person who claims her child was disabled?

        Next, consider the definition that Nick gave

        “Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.”

        That’s pretty clear and it doesn’t matter who defined it. It’s just basically a fact (well, except for the “infinite” word, in my opinion. There are billions of neuorologies in the world, but not infinite).

        “Neurodiversity does not seem to include cerebral palsy or people who suffer aphasia following a stroke.”

        Again, read Nick’s discussion. Or just the basic definition above. You may be mistaking the autism rights movement with the neurodvisersity movement.

        Now consider the definition he gives of the neurodiversity movement:

        “The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.”

        Do you disagree with that sentiment? Oddly, there are people, even autistics, who claim to be against the goals of the neurodiversity movement. They often base this on a misrepresentation (say, a straw man) of what the movement is all about.

        Sadly, many people get their information from those who have built straw men rather than those who actually participate in the movement. Believing the straw man arguments, they see the neurodiversity movement as something bad.

        What is really sad are the individuals who continue to attack the movement even though they have been informed repeatedly that their concept is wrong.

        I recently read a comment elsewhere claiming that people in the neurodiversity movement think that nonverbal autistics just chose not to speak. It was said with great authority, and I’m sure some people believed it. But it just demonstrated a complete ignorance of the movement.

        Many who attack the neurodiversity movement take the mistaken view that it is anti-cure. For example, if one speaks out against, say, bleach enemas, one is labeled as anti-cure. Speaking out against fake and abusive “therapies” stems from a civil rights stance of the movement. Disabled people, especially children, should not be subjected to bad experiments with the excuse that it is an alleged cure. While many neurodiversity movement activists do not want a cure for themselves, the paradigm does not mean that someone should stand in the way of another seeking a cure. Which is all an important but academic discussion as no cure exists at present, nor is there anything approaching a cure in the works at present.

  9. Eileen Nicole Simon June 27, 2015 at 10:58 #

    Neurodiversity is an idea I cannot accept. I looked at Nick Walker’s presentation of neurodiversity, and via google neurocosmopolitanism.

    What about brain damage? Why is there so much concern over head injury and oxygen insufficiency at birth?

    I grasp the aims of the neurodiversity movement, but do not see how this really helps autistic people. Autism and autism-like neurological conditions are the result of damage to the brain. Autism traits are all neurological signs: Language disability, repetitive movement disorder, and diminished level of consciousness (LOC).

    Social justice is better served by research on the brain than attempts to promote acceptance of disability. It is shocking that autism experts (with medical education) are not more focused on brain research. My attempts to promote discussion of brain damage (at IACC meetings for example) are ignored, while comments of autism self-advocates receive most cordial attention.

    • Sullivan (Matt Carey) June 28, 2015 at 03:31 #

      Neurodiversity is an idea I cannot accept

      You can not accept the fact that there is a diversity of neurologies in the human population? Or is it the neurodiversity movement you have issues with? If so, again I draw your attention to this definition by Nick Walker

      “The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.”

      What exactly in that do you not agree with?

      How does promoting civil rights, equality, respect, and full societal inclusion not benefit autistics?

      • Eileen Nicole Simon June 28, 2015 at 13:48 #

        Thank you for asking what I don’t agree with. It is that the neurodiversity movement appears opposed to research on neurological disorders.

        My son is high functioning. He is a savant on automotive history, railroad history, movies, music, and more. He is a voracious reader. But for example, last summer when we were getting on the boat to return to Boston from Spectacle Island, the cable went up in front of me just after my son got on the boat. Limit of passengers per boat is essential. My son, at 250+ pounds, began jumping up and down.

        “My mother’s not on the boat,” he yelled. I was quickly put on a small boat with a few other people, and I called him on his cell phone. And, I am grateful he is able to use a cell phone.

        My son’s brother suggested he would be fine if only he had a Jeeves, a manservant. Could high-functioning autistics consider serving as companions to less socially functional autistics like my son?

        Then, read Cathy Jameson’s post on Age of Autism this morning, for a graphic account of the exhaustion and fatigue many of us have suffered as caretakers of our autistic children.

        I will continue to urge research on brain differences. The recent excellent article by R Lukose et al. describes differences in the brainstem auditory pathway in autistics with duplications on chromosome 15Q.

      • Sullivan (Matt Carey) June 29, 2015 at 03:46 #

        ” It is that the neurodiversity movement appears opposed to research on neurological disorders.”

        The key word there is “appears”. If you read what others say about neurodiversity, then sure. As someone who has watched the IACC closely, you should be able to tell some specifics about how there wasn’t support for research on neurological disorders. Since that’s what we focused on for the past few years.

        I don’t read the Age of Autism much. As the father of a multiply disabled autistic child, I’m aware of the challenges as a parent. I chose to focus on the challenges of my child, rather than myself.

        Lastly, I avoid terms like “high functioning”, but you are misusing it. Voracious reader, speaking, etc., that’s “high functioning” by the way those who use the term would define it.

    • Narad June 28, 2015 at 11:55 #

      My attempts to promote discussion of brain damage (at IACC meetings for example) are ignored….

      Your monomaniacal repetitiveness is ignored at AoA itself; you expect “better” in the real world?

      • Eileen Nicole Simon June 28, 2015 at 13:51 #

        I may be wrong of course, but I will remain monomaniacal about the danger of clamping the umbilical cord immediately after birth, until it is discussed as a possible factor in the increased prevalence of autism since the mid 1980s.

        In the UK last December the NICE guideline was changed, and waiting 1 minute after birth before clamping is now mandated. It will be interesting to see if fewer children will require special education in the next 3 to 5 years.

  10. Joel A. Harrison, PhD, MPH June 28, 2015 at 16:12 #

    @Eileen Nicole Simon

    You write: “Autism and autism-like neurological conditions are the result of damage to the brain.”

    Is someone with an IQ of 160 suffering from brain damage? Or, what about an IQ of 90? Is any IQ that deviates from 100, a statistical norm, a sign of brain damage? What about athletic ability? What about height? Are people over 6 foot suffering some growth damage? People of short stature are often suffering from one of numerous medical conditions; but does their short stature change their basic humanness? What about energy levels? What about perfect pitch? What about shyness or gregariousness? That different brains develop differently is an accepted phenomenon. That one is “normal” is a value judgment based on some mythical average and what we are comfortable with/used to. Damage is a negative term. If modern psychologists could go back in time and test Newton, Einstein, and others who contributed so much to our science and found them to be classic examples of Asperger’s Syndrome, would you consider them brain damaged? Would you have wanted them to be “normal?

    Is your idea of a “normal” brain based on what you consider to be a “normal” person?

    You write: “Why is there so much concern over head injury and oxygen insufficiency at birth?” Mixing apples with oranges. Imagine that one is deprived of oxygen at birth and develops epilepsy or, perhaps, a mild stutter. Would that deprive either of their intrinsic worth and dignity as a human being? And would that stop them from developing talents that both they enjoy and, perhaps, allow them to make contributions to humanity. Just as the ability to walk is one of many abilities, the brain has many functions. Blind people often have better hearing. Of course we try to prevent oxygen deprivation; but genetic differences that lead to brain development are not the result of oxygen deprivation. The polio vaccine prevents children from becoming paralyzed; but it doesn’t result in all children becoming great athletes or sedentary scholars. And, those that suffered paralysis from polio prior to the vaccine certainly still had numerous talents and gifts just as neurodiversity finds some who deviate from the “norm” on certain brain functions; but exceed the “norm” on others or have different abilities. Our brains are involved in a vast array of functions, making us all different and, yet, all the same. Assuming all or most differences are signs of damage is just plain wrong.

    To develop the above argument in a more scholarly manner would take a long treatise with a huge number of footnotes, so I’ll just leave it at that and allow the neurodiversity experts carry the argument.

    • Eileen Nicole Simon June 29, 2015 at 11:31 #

      My own son’s ongoing recovery is a matter for celebration. He suffered a cephalhematoma during birth, and subsequent developmental delays, with a diagnosis of cerebral palsy at 20 months of age. He overcame all signs of cp, and later excelled in running, swimming, bicycling, and basketball. He has been far more fortunate than most.

      His IQ was measured at 110, which is why the Massachusetts Department of Mental Retardation could not offer any help. However, my son remains at age 52 noticeably autistic. Most serious is ongoing auditory processing disorder.

      I have come to realize how difficult it is for most people to understand circuit components of the brain, or even want to. I will continue to try to point out the special vulnerability of the auditory system. See papers by S Kety (1962) and L Sokoloff (1981). Both are free online via PubMed.

      We all begin to suffer auditory processing disorder beginning halfway through the first decade of life. This is when it becomes increasingly difficult to learn a new language without accent. Loss of the ability to follow conversations in a noisy environment is a problem for many older adults, earlier with heavy use of alcohol or other substances that injure the brain.

      My son has co-authored two memoirs with me, available on amazon.com or barnesandnoble.com. I have written a few scholarly papers, books, and posted a website (conradsimon.org). In PubMed lookup N Simon, Echolalic Speech, 1975.

      • Sullivan (Matt Carey) June 29, 2015 at 14:48 #

        I do not discount your son’s disabilities. I did point out that you seem to misunderstand the term high functioning.

        You asked people to go read an article at the age of autism blog. Many there would tell you your child is not “really” autistic, based on the description you have given.

  11. Eileen Nicole Simon June 29, 2015 at 11:36 #

    In response to Matt Carey’s comment earlier today: Yes, I have watched the IACC closely, since 2003. But trying to participate in IACC discussions via Public Comments has been discouraging in the extreme. Public comments submitted to the IACC never received the discussion they deserved.

    Perusing the most recent IACC Strategic Plan (for 2013), I see emphasis on fetal brain development. Then more about the effects of prenatal exposure to valproic acid (VPA) and rubella infection should have been discussed. I submitted Public Comments requesting discussion of research by R Lukose and RJ Kulesza in 2011. They reported malformation within the brainstem auditory pathway (superior olive) in 9 autistic subjects, then in laboratory rats exposed to VPA during gestation. Why weren’t these important papers cited in the Strategic Plan?

    Now note the paper by Lukose, Beebe, and Kulesza (2015) describing the same malformation, and more, in the brains of people with 15Q duplications.

    • Sullivan (Matt Carey) June 29, 2015 at 14:50 #

      You request research that is ongoing. In specific research on cord clamping.
      As I’ve discussed with you on this website. Do you want discussion or action?

      • Eileen Nicole Simon June 29, 2015 at 20:46 #

        Thank you for asking if I want discussion or action. My interests are research, discussion, and action. Discussion is an essential part of research. Discussion should begin with review of existing evidence. Otherwise research is a continual re-invention of the wheel.

        I began in 1964, even a little earlier, reading everything I could find on injury of the brain at birth. Cerebral palsy was the diagnosis of my son in 1964. Autism was his diagnosis in 1967 after he outgrew most of his motor problems. In 1980, when Lorna Wing translated Asperger’s papers, it was suggested my son fit that diagnosis. But no, he had severe delays in development. According to Szatmari’s criteria my son has “high functioning autism” (HFA), not Asperger syndrome.

        In the October 1969 issue of the Scientific American I found the article by WF Windle in which he reported damage of relay nuclei in the brainstem auditory pathway as the most serious site of injury by asphyxia at birth. I will keep citing that article. Why the auditory system? This was totally unexpected. From 2003 to 2014 I tried to bring this up for discussion by members of the IACC. Public comments were supposed to be discussed by the IACC. Why weren’t they?

      • Sullivan (Matt Carey) June 29, 2015 at 21:11 #

        You commented above that you didn’t get discussion. But you were getting action. Research was being funded. Hence my question as to what you want.

        Given the above discussion, I have no idea why you earlier made a distinction between your son and “high functioning” autistics. (“Could high-functioning autistics consider serving as companions to less socially functional autistics like my son?”)

        Your previous comment “Autism and autism-like neurological conditions are the result of damage to the brain” suggests you do not understand the concept of a developmental disability. Your statement is incorrect. Much of autism (at least) is the result of a difference in development, which is different than injury.

        You have now moved away from the discussion of neurodiversity, which is the point of the article above. You are guiding this back into the areas you wish to discuss. Without responding to my statements on neurodiversity. You say don’t accept neurodiversity, when it is implicit in all your discussions. There is a diversity of neurologies, whether it is developmental or through injury. Whether it results in disability or advantage. Each person’s brain works differently that other people’s brains. Simple concept. And obviously correct. And, yet, you won’t acknowledge that.

        The neurodiversity movement is not what yo claim, either. And you won’t acknowledge that. Instead you move the discussion into a different area entirely.

        Let’s take a moment to summarize a few points above.

        1) Neurodiversity is a fact, not a proposition. There is a diversity of neurologies.
        2) the Neurodviersity movement seeks to promote rights, inclusion and more. (“The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.”) If you are against inclusion and civil rights for the disabled, you have the right to be in the wrong.
        3) Many people, you included, criticize the neurodiversity movement with straw man arguments. (e.g. It is that the neurodiversity movement appears opposed to research on neurological disorders.) That’s fine. But if you refuse to accept the reality and cling to your straw man, don’t expect people to engage you for long.

        Thank you for your contributions above. And now this conversation is over.

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