Steve Silberman discusses Neurotribes in a New York Magazine interview, dispels common myth about Neurodiversity

24 Sep

Author Steve Silberman (author of Neurotribes) was interviewed in New York Magazine recently: The Problematic Obsession With ‘Curing’ Autism. Mr. Silberman has been interviewed a lot recently as his best selling book (Neurotribes) has rolled out, so one might wonder why I’m focused on this particular interview. Well, as it turns out, one statement clearly and concisely addresses many of the misconceptions (read straw man arguments) that people make about the neurodiversity movement.

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”

If you are unfamiliar with the discussion, let me explain. Many of those who criticize the neurodiversity movement claim that the neurodiversity movement denies that autism is a disability.

If one wants to hunt down autism misinformation, a good first place to look is the blog “The Age of Autism”. So, I went to google, search silberman site:ageofautism.com, and read. Top of the list, an article titled “Autism Speaks vs. Steve Silberman”. Search the page for “disability” and get–

NO ONE CAN TELL US. We’re absolutely paralyzed by autism. We have the view of neurodiversity people who look at autism not as a disability, but as just another way of seeing the world.

See the difference? According to the Age of Autism writer, “neurodiversity people who look at autism not as a disability”. But, as Mr. Silberman tells us, it is precisely because we need to see autism as a disability in order to move forward on the making achievable improvements in the lives of autistic. (And not view autism some passing phase for a child, should we just find the correct industrial chemical to sprinkle on their gluten free waffles, as the Age of Autism would have it).

Go to the next article in the google search and one finds

The coverage below is very convincing. People who haven’t looked into the issues involved here might think Steve Silberman makes sense. So, if all the autism is really due to a broader definition and better diagnosing, shouldn’t we just recognize and provide for this minority of unique people among us? Calling autism a disability is really an insult.

In another article, the Age of Autism writes “Unless and until people like Steve Silberman can show us the one in 68 autistic adults out there, his book is fantasy fiction.”

And there you see the reason why AoA doesn’t like Mr. Silberman or his views. Because Mr. Silberman lays out in detail why we should listen to the man who discovered autism (Hans Asperger) and accept that autism is not new. If autism is not new, then the Age of Autism “The Daily Web Newspaper of the Autism Epidemic” (read, we exist to promote the idea that vaccines-cause autism) would be built on a false premise.

Which it is.

By the way, those details that Mr. Silberman lays out are ones which apparently the writers at the Age of Autism don’t have the time to read, as there’s no evidence anyone there critiquing his book has actually read it. Seriously, the articles are all based on interviews and reviews of the book rather than the book itself.

And we are left with the irony of the Age of Autism (a strong proponent of the failed idea that vaccines cause autism and that pretty much anything touted as a “cure” for autism should be purchased by parents and subjected to disabled children) calling something “fantasy fiction”.

Pointing out that the Age of Autism is wrong can be a full time job. Or at least a daily exercise in that the are pretty much always wrong. So, why bother now? Because, once again, I felt that Mr. Silberman spelled out one aspect of the neurodiversity movement so well. So well, in fact, that I will copy that paragraph here:

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”


By Matt Carey

Advertisements

36 Responses to “Steve Silberman discusses Neurotribes in a New York Magazine interview, dispels common myth about Neurodiversity”

  1. A Cranky Spider September 24, 2015 at 22:21 #

    It is not a condition but people at age of autism would rather see it as doom than something to adapt to and accept. It is not hard to find 1 in68 adult autistic people. Here is one

    • Sullivan (Matt Carey) September 24, 2015 at 23:37 #

      Yep. How many times have they called for a study on the prevalence of autism in adults over at AoA? I’ve never seen it. But I stopped reading them.

      All they do is complain that since there’s no data, there are no adult autistics. And then about how, after a decade of ignoring the needs of autistic adults, we’ve made little progress on getting better services for autistic adults.

      • A Cranky Spider September 27, 2015 at 16:38 #

        All they do is pine and whine and act like autism is the worse thing ever. Breaks my autistic heart. I don’t need that kind of stress. Their attitudes do NOT help!

  2. Gone Wild September 25, 2015 at 01:14 #

    Autism is a socially-defined prejudice: there are only individuals who possess personalities, preferences and abilities. SOME humans have disabilities, others reject having a disability: this is all subjective and cannot be quantified or narrowed down to a “factual” basis. It’s therefore pointless to argue over imaginary disorders, diseases, disabilities.

  3. chavisory September 25, 2015 at 01:25 #

    I could show anyone the 1/68 autistic adults, but the folks from AoA would assuredly find them not sufficiently conforming to the stereotypes in their heads to count.

    • Sullivan (Matt Carey) September 25, 2015 at 01:54 #

      Thing is, it’s not about showing AoA and the rest of the “vaccines caused an autism epidemic” crowd they are wrong. That’s been done. Over and over.

      But if we had good data on adult autistics, we would be in a better place to see what works and what doesn’t for supporting adult autistics. We would be in a better place to advocate for increased services. Instead they go with the idea that telling a politician, “you know, there’s going to be a big problem to solve in 10 years” is the way to get action.

      How many politicians care at all about issues 2 years down the road, much less 10?

      AoA and all the orgs that support them had an opportunity to really make a change. And they squandered it. And now it’s everyone’s fault but theirs.

  4. wzrd1 September 25, 2015 at 03:52 #

    First, autism is a spectrum of symptoms that are present to so degree in some, but not others. Herein that spectrum those who are disabled due to the severity of their autism, incapable of the daily activities of life, there are those with minimal symptoms in that spectrum who function well in the daily activities of life, including work.
    After I retired from the US Army, I went into IT. Work in IT, you find plenty of those with Asperger’s working quite well, indeed, required to keep networked systems functioning.
    That is true in other highly technical fields as well.
    Autism isn’t a subjective diagnosis, it is an empiric diagnosis based upon a constellation of symptoms and behaviors.
    Disability is where one has difficulties or cannot conduct the daily activities of life unaided. That aid may range from full time nursing care to using corrective equipment or even a cane.

    I work with a man who broke his neck diving into shallow water as a teen, he is in a motorized wheelchair, one deformed hand holds a stick to operate some of his computer equipment, he types with a stick in his mouth. He’s the most knowledgeable men I have on my team and is irreplaceable. He required special accommodation in the form of a special desk, special keyboard and a motorized door into the building and into our SOC, which is one step short of being a secure compartmentalized information facility (SCIF) to government types that work in highly classified information fields.
    That is disabled.
    My wife is disabled, she can barely walk on some days, due to spinal damage from a herniated disc and issues prohibiting surgery. She walks with a rollator or cane, but will eventually be in a wheelchair.
    I am disabled, I have severe hearing loss from an IED explosion that killed buddies, I have multiple traumatic injuries that have caused neural damage.
    She does her artwork, as she can and still earns some decent money.
    I make quite good money, as the worst I need in accommodation is either speaking a bit louder and clearly or I wear my hearing aids and on bad days, I use a cane.
    I still earn well and secure government networks from intrusion, as well as manage a group of servers. Filing for disability for my wife or myself would be stupidity, as our combined earnings contribute to the Social Security fund and we’d gain nothing.
    Our greatest accommodation beyond my “talk loud and clear and cane” bit is simply a handicapped placard or plate.

    So, in the instances above, there is a spectrum of disability, ranging from talk loud and clear, cane use and a quadriplegic man our operation would be paralyzed without. Pun literal, not in jest.
    The same and greater is true in the spectrum of autism, ranging from acute, total disability through highly profitable function.
    Regardless, all are people, not a part of the spectrum of disease or disability or any other label.
    Start by thinking of the person and the person’s capabilities.
    For, I was using that cane in the Army on bad days, but still carried an M4, M1911 (our teams switched away from the ineffective M9), 47 pounds of body armor and ESAPI plates, two liters of water, radio, ammunition for my weapons and still conducted hand to hand combat drills with junior NCO’s and enlisted. I used the cane as part of the hand to hand training as a trip and entangle weapon.
    Still disabled, had to use a cane. Had to drop the cane, raise my primary weapon and use it a few times. It wasn’t fun, getting back up hurt, not as bad as the SOB that tried to hurt a member of my team.
    It’s a spectrum of capabilities of a person.
    A spectrum that is as vast as a person’s individual mind is vast.
    As each person is precious, perhaps we should consider the person and their individual capabilities equally special?

  5. Eileen Nicole Simon September 25, 2015 at 11:33 #

    Autism is a neurological disorder. How the brain is affected by autism’s many known causes should be the focus of research. I wrote about this back in 1975 (N Simon, Archives of General Psychiatry 32:1439-46).

    Fifteen years ago (April 2000) I put up a website conradsimon.org and cited a great deal of history on understanding of neurological disorders. For a few years I added updates, then I started writing a series of ebooks, available on amazon.com and bn.com. Now retired, I guess I should look into contacting publishers.

    Meanwhile I notice that I responded to both AoA articles sited above. Comments on my AoA responses would be of interest, especially the following:

    “If an adult suffers head injury and develops aphasia or movement disorder, this is an issue of huge concern. Aphasia, movement disorders, seizures, memory impairment, and diminished level of consciousness are the focus of research in neurology. Injury in specific areas of the brain have for more than 150 years been associated with neurological problems.”

    Autism is a disability of course. What is needed is to understand the brain damage that causes this disability. I will continue to point out vulnerability of brainstem centers of highest blood flow and aerobic metabolism.

    • Sullivan (Matt Carey) September 25, 2015 at 18:15 #

      I do not and will not lend my name to the Age of Autism website.

      A few years ago JB Handley invited me to be interviewed by him for their site. I was stunned at how little self-awareness the man has. I don’t willingly allow such a harmful website to use my name, my reputation.

      So, you comment at AoA. Your comments there are not of interest. Except that they let me know that you don’t care about the harm they (AoA) cause and lend your name to their efforts willingly.

      • Eileen Nicole Simon September 25, 2015 at 21:02 #

        My reason for commenting on AoA is the same as for submitting comments to the IACC or here, to point out that autism must be the result of a very specific pattern of impairment within brain. The neurological signs (traits) of autism are different from those of spastic cerebral palsy. I do think autism might be viewed as a variant of kernicterus, which is usually associated with bilirubin staining of the basal ganglia and relay nuclei in the brainstem auditory pathway.

        My comments to the IACC were never discussed in depth. Some followers of AoA have shown an interest in my ideas. Autism has many causes. Autism is associated with many different genetic disorders, prenatal rubella infection, prenatal exposure to valproic acid, fetal alcohol syndrome, and low Apgar scores at birth.

        Complications at birth have been investigated more than any other cause of autism. Evidence of brainstem damage caused by six to twelve minutes of asphyxia at birth has been available in the medical literature for more than 50 years (WF Windle 1959-1964, RE Myers 1972). Myers pointed out that this is different from the injury in cerebral palsy.

        Clamping the umbilical cord immediately after birth was adopted as a standard obstetric protocol at about the same time the vaccine schedule was increased. Clamping the cord before a baby’s first breath is a clear medical error; it goes against the teaching in all traditional textbooks of obstetrics before the mid 1980s.

        I will continue to comment about how injuries of the brainstem auditory pathway and basal ganglia are likely to underlie the neurological signs of severe childhood autism.

      • Sullivan (Matt Carey) September 25, 2015 at 23:33 #

        I did not call into question your reasons for participating in the Age of Autism community. I called into question why one would lend her name and share reputation with such a site.

        The Age of Autism site is a place for misinformation and harmful attitudes towards autism.

        You are free to voice your opinion how and where you see fit. I am free to point out that doing so on the Age of Autism blog is not something to brag about here, as you have done.

      • wzrd1 September 26, 2015 at 04:32 #

        I’d say that commenting on AoA to correct misapprehensions and deliberate misguidance would be worthwhile, save that those that I know who did try to counter the erroneous information and even outright lies had their comments deleted.

        As for Eileen’s thoughts that brainstem damage in the auditory pathway and basal ganglia would be noticeable upon examination, especially so for brains of deceased autism patients and those have been repeatedly examined over the years. Such damage has not been reported in any meaningful number of reports.
        More study is necessary to understand the constellation of the spectrum, however far too many efforts have been made to try to counter the blame placed upon vaccines, mercury and little green men from Mars. Research dollars are limited and diversion of those dollars into debunking that which has repeatedly been debunked wastes those dollars that could have more profitably been spent.
        BTW, the valproic acid study was flawed by the way the statistics were gathered, taking individuals, rather than the entire litter.
        Just as mercury has been disproved as a cause.
        Just as vaccines have been disproved as a cause.
        They’re still working on the little green men, as capturing a sample has been devilishly difficult, they’re so fast as to be invisible. 😉
        There was an erroneous report of plaid aliens, but those turned out to be Scotsmen in tartan and kilt. The confusion was understandable though, the Scotsmen were blowing into a bag that they squeezed that produced a sound similar to what would be produced when one squeezed a bag of cats. };)

      • Eileen Nicole Simon September 26, 2015 at 11:58 #

        WF Windle at first did not find any damage in the brains of monkeys subjected to asphyxia at birth. Seymour Kety suggested that he look in the inferior colliculus (plural colliculi), and there the damage was found. Kety’s (1962) seminal paper is free online via PubMed, and includes a radiographic photo 60 seconds after injection of a radioactive tracer used to measure blood flow in the brains of cats.

        Windle re-examined the brains of monkeys asphyxiated at birth, and found severe damage localized in the inferior colliculi (Scientific American, October 1969). Asphyxiated monkeys suffered developmental delay, and Windle suggested that a brief period of asphyxia at birth might underlie what back then was referred to as “minimal brain dysfunction” (MBD).

        L Sokoloff’s (1981) seminal paper is also free online. Sokoloff extended Kety’s method using deoxyglucose as the tracer. Sokoloff’s deoxyglucose method has been used to investigate effects of many neurotoxic substances on aerobic metabolism in the brain. Uptake of deoxyglucose is always highest in the inferior colliculus, and is (among other brain sites) affected by drugs, heavy metals, herbicides, pesticides, etc without visible damage in the brain.

        Auditory system dysfunction in autism has been documented since the 1960s and 70s. Kulesza and Lukose found abnormalities of the superior olive (one way-station below the inferior colliculus) in the brains of 9 autistic people. They found the same abnormalities in laboratory rats exposed to valproic acid during gestation. Malformation of the superior olive had been reported in a paper by PM Rodier (1996) on anomalies of cranial nuclei. The patient with superior olive malformation suffered prenatal exposure to alcohol and other drugs.

        My comments on AoA, Simons Foundation, to the IACC, and elsewhere have mostly been to point out the need to look for damage in the brain. The mathematics of epidemiology is simplistic. How vaccines affect the brain should be the focus of research. Rubella infection was associated with many cases of autism in the 1960s, which is why a vaccine to prevent this “mild” affliction was developed.

        In PubMed “encephalitis colliculus” brings up 8 citations. The inferior colliculus, metabolically the most active site in the brain, merits more research.

      • Sullivan (Matt Carey) September 26, 2015 at 17:39 #

        Why you make your comments at AoA is understood. The fact that you choose such a forum is.

        Can you point to your comments at AoA that are critical of their actions and/or mission? Perhaps I missed where you clarify that you stand apart from the , if that is indeed the case.

        It is like when Brian Hooker presented at a 9/11 truther conference. I called him to task for his participation. His participation alone is problematic.

        Mr. Hooker then and later complained that I was accusing him of being a 9/11 Truther. Which I clearly did not do. But in doing so he avoids confronting his problematic behavior in that case.

        As a commenter above notes, some people do comment at AoA to counter the misinformation. And while I will not do that, I understand and respect that decision.

      • Sullivan (Matt Carey) September 26, 2015 at 17:43 #

        “How vaccines affect the brain should be the focus of research. ”

        Hence the fact that you are comfortable at AoA.

        Making life better for autistics should be a major focus of research. Not chasing failed ideas that only harm the autism community.

      • Eileen Nicole Simon September 27, 2015 at 00:08 #

        The purpose of research on autism should be to understand and stop the epidemic, the huge increase in numbers of low-functioning children that has taken place over the last 30 years.

        My son’s autism predates the increase in vaccines. He suffered a cephalhematoma and oxygen insufficiency at birth. Windle’s article in the Scientific American on brain damage by asphyxia at birth was of great interest to me of course.

        After I put my website online, in April 2000, I received several emails asking me how soon after birth my son’s umbilical cord was clamped. That was when I became aware of this misguided obstetric protocol. I spent hours on the 4th floor of the Countway medical library at Harvard pulling one old textbook after another off the shelf. All taught that the umbilical cord should not be tied or clamped until pulsations in it ceased.

        In 10th grade biology we were taught that pulsations of the cord continue after birth until the fetal heart valves close (foramen ovale and ductus arteriosus). How can doctors have missed this teaching? Read Tedy Bruschi’s book about how a patent foramen ovale led to his stroke.

        I donned the yellow T-shirt with AoA parents at the IACC meeting in July 2012, and joined in their protest over a billion dollars wasted on what doesn’t cause autism. Were you on that committee then? I have been attending IACC meetings since 2003, requesting discussion of brain damage caused by asphyxia at birth.

        It is discouraging that the IACC does not respond to public comments. I will continue, wherever I can, to try to bring attention to vulnerable areas of the brain that may be impaired in autism.

      • Sullivan (Matt Carey) September 27, 2015 at 01:21 #

        “The purpose of research on autism should be to understand and stop the epidemic,”

        No room for research that is focused on improving my kid’s life? I reject your assertion.

        “I donned the yellow T-shirt with AoA parents at the IACC meeting in July 2012”

        I have responded to you here many times. I pointed out that research is ongoing on precisely your most talked about: cord clamping. I noted that research is indeed being funded and is ongoing. And, as I’ve asked before–do you want action or do you want a discussion? I prefer action. You are getting action.

      • Narad September 27, 2015 at 01:49 #

        My reason for commenting on AoA is the same as for submitting comments to the IACC or here, to point out that autism must be the result of a very specific pattern of impairment within brain.

        Why?

        The neurological signs (traits) of autism are different from those of spastic cerebral palsy.

        And?

        I do think autism might be viewed as a variant of kernicterus

        Any particular reason?

        which is usually associated with bilirubin staining

        Yes, that’s where the -icterus comes from, but this is a very strange construction; why don’t you simply say that it’s caused by bilirubin neurotoxicity?

        of the basal ganglia and relay nuclei in the brainstem auditory pathway.

        This is neither complete nor particularly specific nor, seemingly, apropos of anything.

        Autism has many causes. Autism is associated with many different genetic disorders, prenatal rubella infection, prenatal exposure to valproic acid, fetal alcohol syndrome, and low Apgar scores at birth.

        Which, apparently, all produce the same “very specific pattern.”

        Clamping the umbilical cord immediately after birth was adopted as a standard obstetric protocol at about the same time the vaccine schedule was increased. Clamping the cord before a baby’s first breath is a clear medical error; it goes against the teaching in all traditional textbooks of obstetrics before the mid 1980s.

        I will continue to comment about how injuries of the brainstem auditory pathway and basal ganglia are likely to underlie the neurological signs of severe childhood autism.

        You’re just copying and pasting the same stream of non sequiturs over and over and over again, and you complain that people aren’t paying adequate attention? This is spamming, not commenting.

        Your status as a regular at AoA strikes me as opportunistic, not educational, in nature – the sad handful of commenters will occasionally respond to the appearance of a giant thought-blob, even if just as equally routinely take it as a signal to start babbling about their own random EMF, etc., bad trips.

      • Narad September 27, 2015 at 03:04 #

        Just to hammer this home,

        of the basal ganglia and relay nuclei in the brainstem auditory pathway.

        This is neither complete nor particularly specific nor, seemingly, apropos of anything.

        1. Describe the brainstem auditory pathway.

        2. Specify which “relay nuclei” you are hand-waving about. Cite something that is not one of your usual ancient sources to defend the assertion that bilirubin has a notable affinity for them.

        Perhaps then it might be possible to sort out why on earth you would assert a connection between kernicterus and autism.

      • Eileen Nicole Simon September 27, 2015 at 11:22 #

        @Matt Carey
        If the “disability” of autism has simply gone unnoticed, what care systems are currently in place for adults with autism? My son just turned 53. When he was 5 he was admitted to the Children’s Unit at the Massachusetts Mental Health Center, which was where I first saw other autistic children.

        My son lives in a group home for schizophrenic men. He is the only one who had developmental disabilities. The others developed signs of mental decline during adolescence or early adulthood, and their personalities and needs cannot be compared to those of my son.

        One cigarette every-hour-on-the-hour is the only regularly scheduled activity at his group home. I am the only parent who visits on a regular schedule. For many years I have been taking him out every weekend to write. We have written two memoirs together; lookup author Anders Cody Simon on amazon.com or bn.com.

        Can you cite research that might help improve my son’s life? I do see much more research on cord clamping, and this has resulted in action. In the UK last December the guidelines were changed, and to begin resuscitation leaving the cord intact. It will be of interest to see if this leads to less need for special education.

        @Narad
        In PubMed lookup papers that used Sokoloff’s deoxyglucose method. Most provide tables of aerobic metabolism in specific brain sites, before and after treatment with drugs or toxic substances. A hierarchy can be seen. Relay way-stations in the brainstem auditory pathway are metabolically more active than any other sites in the brain. The inferior colliculus is metabolically the most active site in the brain.

        Ranck and Windle (1959) pointed out that the subcortical sites damaged by asphyxia at birth are the same as those affected in kernicterus, but without yellow discoloration. Later (Experimental Neurology 1964; 9:43-58) they discovered that even very high levels of bilirubin do not discolor the brain unless preceded by an episode of asphyxia.

        Ancient sources are important not to forget. Isn’t that part of the focus of Silberman’s book? I think the whole world should know that Wernicke in 1881 was first to describe symmetric bilateral injury in the brainstem in cases of chronic alcohol intoxication, plus a case of sulfuric acid poisoning (see the translation by Thomson AD et al. in Alcohol and Alcoholism 2008; 43:174-9, free online via Pubmed).

      • Sullivan (Matt Carey) September 27, 2015 at 20:20 #

        Do you really not know the answer to your question?

        “If the “disability” of autism has simply gone unnoticed, what care systems are currently in place for adults with autism? ”

        First, why put “disability” in scare quotes? Do you not believe that autism is a disability? Or what message are you trying (and failing) to send with that?

        Perhaps you could read Steve Silberman’s book? Because he discusses this in detail. As to a LOT of other people. Including here. So often, in fact, that your question comes across as common trolling.

        Let’s see, your son is in a placement that is not autism specific. Is that new? Do you think that autistics in the past just didn’t get placed anywhere? As in, “Gee, in the future you will have an autism diagnosis. Since we don’t have it now, we will ignore you.”

        Here’s the thing–denialists who claim that auitism is “new” have set back efforts to advocate for better services for autistics. And others with disabilities, I might add.

        Apparently you are claiming that your son is in an inappropriate placement. Wouldn’t it be nice if we had advocated for decades for research into what does make an appropriate placement for autistics?

        “Can you cite research that might help improve my son’s life? ”

        Just put an article up. Can you point to the efforts of you and the rest at the Age of Autism blog in advocating for a better support system for autistics? Case in point–the legislative battle in California. How many articles do they have up on a California vaccine bill? A lot. How many on the budget battle to restore services for the developmental disability system? None. NONE.

        None.

        That’s what the vaccines/cause/autism idea has done for us in the autism communities. And you have helped that effort. That wasted effort.

      • Eileen Nicole Simon September 27, 2015 at 23:25 #

        Some of us have longer real-world experience with autism than Steve Silberman. I will look at his book when a copy is returned to the library. My son’s and my six ebooks are on amazon.com and bn.com for 99 cents each. My son’s writings should be of special interest.

        My ideas about the brain are on my website conradsimon.org. I will continue to push for brain research rather than accept neurodiversity. I may be wrong about the importance of brainstem injury, but will continue to ask for meaningful discussion based on citations to the medical literature.

      • Sullivan (Matt Carey) September 28, 2015 at 02:03 #

        “Some of us have longer real-world experience with autism than Steve Silberman. ”

        Bruno Bettleheim did. So you point would be?

        ” I will continue to push for brain research rather than accept neurodiversity”

        Which only goes to show you don’t understand neurodiversity.

      • Sullivan (Matt Carey) September 28, 2015 at 02:09 #

        Now that I have a little more time to type.

        You present a false dichotomy. Advocate for brain research or believe in the efforts of the neurodiversity movement.

        It’s false.

        The neurodiversity movement strives to achieve better civil rights for all, especially those with neurologies that are different from the average.

        Why are you against that?

      • Chris September 28, 2015 at 04:11 #

        “The neurodiversity movement strives to achieve better civil rights for all, especially those with neurologies that are different from the average.”

        Like this left handed four year old: Oklahoma teacher says lefties are ‘evil,’ forces 4-year-old boy to use right hand.

        Or the little boys tortured in the name of science for these two papers:
        J Abnorm Child Psychol. 1974 Jun;2(2):99-116.
        The behavioral treatment of a “transsexual” preadolescent boy.
        Rekers GA, Lovaas OI, Low B.
        and:
        J Appl Behav Anal. 1974 Summer;7(2):173-90.
        Behavioral treatment of deviant sex-role behaviors in a male child.
        Rekers GA, Lovaas OI.

        Let us not forget that homosexuality, which is an obvious example of neurodiversity, was listed has an official disorder in early DSMs. Or that Lovaas literally tortured children with electric shocks and starvation to put an end to those “evil” autistic behaviors.

        I want acceptance and accommodations for my autistic adult son. I do not want anymore money wasted looking for unicorn reasons and treatments (we are way beyond zebra hooves!). I am pretty sure his issues are genetic, possibly linked to his genetic heart disorder. Perhaps it was caused by a random atomic particle that passed through me and switched some DNA, or the nasty cold/flu I had early in my pregnancy that caused the neonatal seizures, lack of speech, tics, insistence on routine and everything else that he had… but was “not autism” throughout the 1990s. Except, now it is.

        Anyway, there is one definite known reason cause of autism: congenital rubella syndrome. I sometimes wonder, given his age, if Nicole’s son was not also affected by an infection way before birth.

      • wzrd1 September 28, 2015 at 06:38 #

        What?!
        I *want* to smell a unicorn far again! 😉
        OK, that was a joke.

        As for same sex relationships, preferences, etc.
        I’m retired military and as a senior NCO, I had one thing. Nobody caused a problem, everyone covered each other’s arse, didn’t give a tinker’s damn.
        I didn’t care if someone admired my bum, I cared that it was covered.
        What happened off duty? Didn’t give a tinkerers’ damn.
        I’m a *real* big realist, what doesn’t impact my life doesn’t really concern me.
        Those happy in something outside of my preference and experience and isn’t unlawful and more importantly to my “bible’, the Constitution isn’t my concern.
        Or more bluntly, as an NCO, who is expected to espouse candor, I don’t give a tinkerers damn who is doing what to whom of age.
        In the time concerned, it’d impact end strength. Which would impact unit efficacy.
        Not happening on our watch.
        I’ll admit a dislike for same self preference, didn’t care if he admired my arse if he covered it.
        He’d not be allowed to covet it.
        That belongs to my wife.
        The same was true for females adventuring into who could perform the duties required.
        As in shooting people, putting a knife into someone, kill someone on a bad day.
        But then, it was indeed a war environment.

        After, I went into IT, where I got to meet a part of the spectrum.
        Initially, it felt like trying to lead a flight of gnats.
        Eventually, I learned the distraction points, boredom points, etc and learned to lead, outdistracting, out outbordomeing, etc.
        In short, learning inside of the curve.

        I’ll never reject that experience. The team is far too valuable and creative, when guided properly. The team members, just as my military team members, are very special resources, when properly guided.

    • A Cranky Spider September 25, 2015 at 21:19 #

      Autism is not brain damage.

  6. lupinssupins September 25, 2015 at 12:24 #

    Here’s another adult Aspie, age 60 so I’ve had way below today’s quota of vaccines, having endured M, M, R, and chicken pox themselves [& probably milder pertussis, when it almost killed my brothers in post-war Europe] not the vaccines. My 34 yr old son is another adult on the spectrum [and he received many fewer vaccines than his younger brother, not on the spectrum]. Alas, both not dx’ed until adulthood, me only since my son’s dx at 23. I say “alas” b/c that means both lack of behavioral intervention when it is most useful, and also b/c, as I was dismayed to learn, in my backward state, its scarce services for adults w/ the whole, vast array of ‘developmental disabilities/delays’ are strictly contingent on having a dx BEFORE the age of 21! I assume that this is meant as some misguided anti-fraud provision as well as a means, however flawed, to pare down eligibility for impossibly scare resources. But it’s frustrating, even infuriating, b/c ASD by its very definition originated long before the age of 21! Indeed, in our experiences, an adult dx depends on certain criteria related specifically to one’s childhood social & educational history, with corroboration from interviews with other family members, not just the patient. Another issue is the increasing move away from clinical dx following ADI [even by clinicians renowned in the field for many yrs, as the one who diagnosed my son at WUMS-StL] per se and to bureaucratically stubborn insistence on a formalized ADOS process, thus requiring dx before age 21 to have been established by an instrument that did not yet even exist.

    • lupinssupins September 26, 2015 at 11:30 #

      In reading and re-reading these comments, I found myself wishing I had been clearer in my own references to vaccines. Those were merely intended to indicate that my family’s cases [like most, I warrant] do NOT fit w/ the anti-vaxxers’ warped reckoning of ‘correlation.’ I should have emphasized that I have never given credence to the Wakefield cult.
      I was also unaware that anyone was still associating autism with birth injury [anoxia, bilirubin excess, premature cord-clamping/cutting …]

  7. Roger Kulp September 26, 2015 at 00:22 #

    I must confess I have not read Silberman’s book,but I would like to know what Silberman says about regressive autism.Does he addresses the more recent developments in autism science,that show autism can be a presenting feature of either mitochondrial disease,or of an inherited autoimmune encephalopathy in children born to mothers with autoimmune disease?

    These are the two of main types of regressive autism,that mothers like those that post at Age of Autism are most likely to have kids with.These are very serious diseases,that have both autism,and complex medical issues.Except they are congenital in nature,and not caused by vaccines.Antivax parents are too blinded by their own antiscience bias,and/or not wanting to admit they might have been “to blame” for having a kid with a serious birth defect,to examine the cause of their child’s disabilities.

    Doctors do still classify these disorders as “autism” whether you,or Steve Silberman,like it or not.I have heard Temple Grandin say in a Q&A at one of her lectures a few years ago,that regressive autism was completely different from what she talks about,and that she did not want to discuss it any further.Unfortunately I can no longer find this video on the web.

    These disorders can be misinterpreted as garden variety autism for years,perhaps the person’s entire life,unless the right diagnostic tests are done.They are so “new” that no one would think of testing an adult,especially given the deplorable state of medical care for adults with autism.But the thing is,once these underlying causes are found,and treated,the autism,seizures,and other brain related problems improve dramatically.The person may even become neurotypical,if they stay on treatment long enough.This was the case with me.I was diagnosed with autism as a child under the DSM-II.The diagnosis was so severe that I would have ended up in an institution had my mother not intervened.I was rediagnosed as an adult,and it was pretty much the same story.Except not long after that second diagnosis,I found another doctor willing to run some real medical tests on me.I have serious inborn metabolic and mitochondrial disorders that were the cause of my autism.The many medical issues I have have been much slower to respond to treatment than the autism,learning disabilities,etc have been.

    Going from moderate to severe autism to basically neurotypical in a few years is incredible.The best thing that ever happened to me.Does it take anything away from your “identity” as a person? Of course not.To borrow from other disabilities that have established “cultures”,it’s sort of like someone who was born blind,and as an adult,they were able to get an operation that gave them sight.Or someone born deaf,who was able to get a cochlear implant and hear.I am a pioneer in this area,especially for an adult.But I believe as the science advances,this will become more and more common in the autism community.It will be something you will have to come to grips with eventually.There will be debates much like there have been in the deaf and blind communities.

  8. wzrd1 September 27, 2015 at 04:22 #

    @Eileen, the umbilical cord stops pulsating because of the collapse of Wharton’s jelly causes vascular occlusion in the cord itself and the closing of the ductus venosus.
    The closure of the foramen ovale and ductus arteriosus largely are to bring the lungs fully online.

    • A Cranky Spider September 28, 2015 at 04:19 #

      What is any of lupinssupin talking about when it is at home? How is any of this helpful to autisic people? It does not help disrespected under estimated non speaking autistic people. Does not help older autistic people. It is useless speculation! We ought to be giving non speaking autistic people all kinds of communication devices and not tormenting them with behaviourlism and other nonsense that gets in the way

      • wzrd1 September 28, 2015 at 04:41 #

        Bull Crap. We need to give *all* autistic people that need extra communication devices that need it. I’ve known Asperger’s end of the spectrum need help letting others know that they were having a meltdown and just needed to “get me the hell out of here!”.
        That in itself is a mild disability, akin to my hearing loss, which can make communication problematic. I have a hearing aid, there’s software for those entering a meltdown that can present text to one wanting to help, one message of which is “I’m having a meltdown, get me out of here!”. That is one assistive device/software, it was developed by one with Asperger’s.
        But, speculation on how to address one’s needs that is silent is all that we have, unless you have a telepathic communication device you’ve kept secret from us.

        There are thousands, if not tens of thousands of people working on every aspect of “autism people” (excuse that term, it’s disgusting to me, but in my dyslexic fatigue, I’m running out of ideas for a proper term), we help *all* who are helping, with some actually finding “paydirt”.
        That includes behaviorism and “other nonsense” that gets in the way until something does indeed work by novel discovery or plain dumb luck.
        Or should we just give up?

        I’ve always been one for an all hands on deck brainstorming session, each pursuing their own idea to see what bears fruit.
        But then, I was trained to leave no person behind.

      • A Cranky Spider September 28, 2015 at 12:48 #

        Ok. Idevices and tablets for all autistic people. But you know folks will be like why should we give all of them these? Because it is helpful, dang it. Behavioralism is a sacred cow that needs to be slaughtered. Autistic people need to learn how to cope with their differing neurology in a hostile world and non autistic people need to get used to the existence of autistic people and to respect their needs. Spending hours on forced normality is a waste of time and energy just like blaming vaccines.

      • wzrd1 September 28, 2015 at 20:56 #

        “Autistic people need to learn how to cope with their differing neurology in a hostile world and non autistic people need to get used to the existence of autistic people and to respect their needs.”

        That sounds like behavioralsim. I do agree, neurotypicals need to be educated to the needs of those with different neurological capabilities. I’ve worked with quite a few Asperger’s types in my IT career, they’re godsends and curses at times, at least until one learns boredom points and distraction points of each individual in the team. Then, they’re godsends on steroids.
        Educating the general populace on how to work with disabled and non-neurotypical people is necessary to provide a far better life experience for all.

        “Spending hours on forced normality is a waste of time and energy just like blaming vaccines.”

        Wrong, it teaches the non-neurotypical to interface with the neurotypical in daily life.
        It teaches islands of stability in an otherwise disorderly life experience with neurotypicals, who are phenomenally disorderly by nature.
        Not being trained to deal with that would result in incessant meltdowns, which would have otherwise been prevented.
        Just as neurotypicals need training in dealing with others with different capabilities. I ran into that with a man I now work for, he’s paralyzed and wheelchair bound after breaking his neck when diving into shallow water as a teen. He’s also a brilliant programmer and brilliant information security professional. Our operation would be incapable of operating without his work. When he asked for a snack, I had completely forgotten he was incapable of feeding himself.
        Quite embarrassing all around. With his formidable knowledge and capabilities, forgotten was his disability. I’ve re-addressed that blind spot, so that we’re fully meshed as a team.

  9. Strawman October 29, 2015 at 22:11 #

    I admit I have not read this book
    I have looked at the AoA website. It is a trap where one can easily blame and become jealous of those who adhere to acceptance and Neurodivercity. I don’t want to go that route. When I think about it even in preschool for developmentally delayed my 3 year old was not included. They sent him out everyday with his aide who walked him in a stroller
    At lunch time all the kids got to watch a movie but him. They told me he was disruptive
    I called and said to let him at least watch the movie. The teacher said there was no room for him. I took him to Head Start where they were very sweet to him and included him in every way. Every child is entitled to a meaningful education. Those were his wild days filled with shaking wires and hyperactivity. We moved and he went to a better school that included some ABA for a little while so he could sit still enough to understand the spoken word.

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 )

Connecting to %s

%d bloggers like this: