Today, one in 68 children is on the autism spectrum, according to the Centers for Disease Control and Prevention. Yet despite decades of research, there is much we don’t know about the disorder. We discuss the evolving definition, hidden history and public perception of autism with “NeuroTribes” author Steve Silberman.

Steve Silberman speaks at TED:

Steve Silberman, journalist and author of "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity"

  • Beth Grant DeRoos

    We have been discussing NeuroTribes on Facebook and one question that comes up a lot is why we women with autism are not talked about more. Males may make up a higher proportion of those on the autism spectrum, but there are a lot of females, and many of us are successful in science, high tech, art etc. Why don’t we hear more about autistic women? Thank you.

  • geraldfnord

    A psychiatrist diagnosed me with Asperger’s Syndrome in 1991, before that term was deprecated in favour of ‘Autism Spectrum Disorder’ (or had been widely assumed by people taking Internet quizzes, looking for an excuse for being habitually rude) . Two questions:

    0.) I’ve wondered if Dr Aspberger created a new category because people diagnosed as ‘autistic’ in 1944 Austria were in danger of being murdered by their government, along with the insane and the slow. Is there any evidence of that?
    1.) With age, and I assume lower energy, I find myself (I think the term would be) decompensating: I am less able to deal with people while appearing halfway normal, I think I’m less good at inferring social cues. Is this commonplace?

  • Chris Fure

    There was a wonderful Vicky Mayberry story on 60 Minutes several years ago
    that was a break-through training for autistic kids…

    A mother in India found a way to communicate with her severely autistic
    child with flash cards. However, instead of showing flash cards at a
    rate of one/five-seconds, she showed them at the break-neck speed of
    3/second. The fast pace totally held the autistic child’s interest and
    allowed them to grow.

    As a result, her severely autistic child learned
    to read, do math, create art, and understand social structure. The
    amazing part of the story was that the child was then interviewed.
    The child explained how much he loved his mother for freeing
    him from his own mind — allowing him to communicate, love, and
    contribute to society. The story ended with this beautiful and
    heart-wrenching poem that the kid had written.

    This is break-through insight that most are still unaware. Please discuss.

    Best, Chris

    • Liz Ditz

      What you are referring to is the Rapid Prompting Method (RPM) , developed by Soma Mukhopadhyay to engage her son Tito. The intervention does not have robust scientific support.

  • Another Mike

    As a data point, my mother’s parents had friends with a “savant” daughter, born in Canada in the 1930s. When we visited, she sat and did not speak, but she could play the piano beautifully.

  • Robert Thomas

    I continue to find Mr. Siberman’s language to be offensive – I’m as offended by it now as I was once, in this venue, some years ago.

    I was the person who objected to the use of the epithet “geek” that sticks in Dr Krasny’s mind and I still object to it. I couldn’t possibly care less what writers for or readers of Wired Magazine think about it, one way or the other.

    Dismissive name-calling of other people who are different from one is an old failing – I’ve indulged in it myself. I’ve indulged in it out loud, while listening to this radio program.

    • Noelle

      But then again, some “geeks” like that term to describe themselves, especially in silicon valley.

      • Ryan Seacrust

        Sociopaths seeking a new label to make themselves appear harmless.
        Wolves in sheeps’ psychobabble.

    • Another Mike

      Robert: why not propose a word for the ubernerd? I’m just glad the word that rhymed with a dining implement has fallen out of fashion. “Geek” does not bother me.

  • trite

    Please address the controversy about autism and children being given inoculation shots. Mr. krasny veered away from that when the subject was broached.

    • Liz Ditz

      As Mr. Silberman said several times during the course of the interview, Neurotribes intentionally gave far less focus on causation theories than exploring autism as a social and intellectual construct.

      Furthermore, as Mr. Silberman also stated, the obsession with finding causation — especially the discredited vaccine hypothesis — has diverted research and policy attention AWAY from very pressing needs for services and supports across the autistic lifetime.

    • Another Mike

      This discussion was about “the evolving definition, hidden history and public perception of autism,” which already is a lot to cover in a 55 minute show.

  • Rosie Walker-Speranza

    One of the BIGGEST issues families with children that are deemed ‘high functioning’ autistic is services. I won’t go into my full story, but will say that there is a gap in services. My child is deemed not ‘deficient’ enough and therefore trying to get services is impossible. We’ve been trying to get him some intense behavior therapy but instead of helping me, CPS tells me the only way they will is if I abuse my son OR if I take him to the police station and tell them I cannot take care of him.

    Can you imagine the heartbreak that would happen if I were to take my beautiful son to the police station and tell them I don’t want him?!?! What kind of crazy world do we live in where that is the only way a family can get help???? SOMETHING NEEDS TO BE DONE! We need help.

    • Another Mike

      This actually happens and not just for children with autism.
      Several years ago, a co-worker used up her daughter’s lifetime mental health benefits, and did have to turn her over to the state, in order to get her continued treatment.

    • Mark SF

      I am not sure where you live but at least in some States children and people with disabilities are not handled by CPS. As Child Protective Service name implies it only jumps in to protect the child.
      In CA, they have regional centers funded through the Department of Development Services that handles services autistic children.
      If your child is having disruptive behavior or behavior that interferes with his education than get assessment through the school and have an IEP.

  • M Brooks

    On the 1/68 number. Because there is a high rate of Late diagnoses of of Black/Latino Children (as many as 4 years later than white children), I would argue that the Rate is normalizing of the Assessment of under representation of People of Color that were previously not Recorded. especially prior to 2008 (mandell)

    Monika Brooks
    Mocha Autism Network

  • cmfm

    Another great interview and important information from Steve Silberman. thank you.

  • Robert Thomas

    “A friend of mine is a sociologist and she said that [she has noticed some correlation, or something]”.

    I believe that Mr Silberman’s general intentions are honorable, if sometimes clumsily presented.

    But, good grief.

  • Some harmful recessive genetic traits like falciform anemia survived because when a single copy of the gene is present, it protects against malaria. People on the milder end of the spectrum are specially well-suited for tasks like computer programming that require deep concentration.

    It may be that with changes in modern society and the needs of the workplace, what used to be a disadvantage has become an edge and the evolutionary pressure that severely selected against autistic genes has partly reversed.

  • Another Mike

    The declining percentage with age of people with autism suggests that their life expectancy is lower.

  • Rod Johnson

    The CDC proved a causal link between MMR2 and autism. They met privately and found a large trash can to dump the evidence. They knew what they found wouldn’t fit this mythical narrative that vaccines are safe. They preferred criminal fraud. http://www.c-span.org/video/standalone/?327309-1/us-house-morning-hour&popoutPlayer

    • kate

      Could you please indicate the time at which this was discussed?

      • Rod Johnson

        This site has the key transcript and also has some of the time references. http://vaxtruth.org/2015/07/posey-asks-for-hearings/

        • Another Mike

          Thanks for the link. The study discussed is a case-control study, which can never prove causation, only correlation. The classic example would be to assume insulin caused Type 1 diabetes, because insulin can be found in every diabetic’s home, and not in any non-diabetic’s home.

          Further, the increased apparent risk factor for vaccines applied only to African-American boys in the study, who were routinely vaccinated as part of their early intervention autism programs. There is no chemical or biological hypothesis that would explain why African-American boys would be more susceptible to vaccines.

  • Lucilew

    It’s Soma, we have videos of my son (who speaks in 3 word sentences) being able to make whole sentences using the communication board. http://www.halo-soma.org Called the Rapid Prompting Method or RPM training

  • Mark

    Towards the last half of this show, Mr. Silberman talked briefly about job placement programs for autistic persons that place less emphasis on social skills and use alternative ways of evaluating candidates. One in particular involved the use of programmable LEGO sets which I found to be particularly interesting. I didn’t catch the name though; If anyone remembers what it is, or has any other resources to share that relate to job placement for autistic adults, I’d be most appreciative!

  • JanJT

    As someone who works with ASD kids and adults every day, a parent to a young adult on the Spectrum, and someone who has worked in Silicon Valley high tech prior for a couple of decades, I believe that ASD has indeed been around for a very long time — we just didn’t diagnose it. Also very interesting — as the rates for ASD have gone up, rates for ID/DD (intellectual and developmental disability) have gone down in correlation. Yes, it can be very serious. Yes, we need more services in and out of the educational system. But — 50 years ago, people with ‘high-functioning’ autism had a much easier ability to ‘be’ in the world. We marveled at their abilities, and ignored their quirks. Now, if you don’t fit into a narrow mold, we pathologize you.

  • Sally Park Rubin

    Although I applaud Mr. Silberman’s effort to create an understanding of neurological differences and to “normalize” them for society and, including, this program’s attention to older people with ASD, I think that his historical research misses the point that generations of children, and particularly, this generation, are physically ill.

    Why are so many kids sick and getting diagnosed with autism? Mr. Silberman is specifically focusing on Asperger’s Syndrome, not Autism. But the names were used interchangably.

    We can agree to disagree, but those of us in the trenches with kids to recover (like the mother who chelated her child and reports that that individual is now recovered), experience that Autism is a SYMPTOM of a metabolic illness or a confluence of metabolic processes gone awry (including an uptic in heavy metal poisoning for which chelation, done under a doctor’s care, can be very effective.

    AND IT [AUTISM] WAS RARE UNTIL THE 1990’S. Perhaps, Asperger’s syndrome was not. Mr. Silberman’s historical research is primarily about Aspergers Syndrome; not Autism. And he proves my point by citing the early research of Kanner with “childhood psychosis, epilepsy and schizophrenia” which are all metabolic illnesses.

    Mr. Silberman argued better diagnosis; when, in fact, Aspergers Syndrome
    has been removed from Autism in the DSM-V. And, by the way, PDD-NOS is
    not Autism, but the inference that it is and throwing that term around at that
    point in the conversation made him sound “in the know.” But, it was a
    red herring.

    And, while I’m on the topic of agreeing to disagree, did you and your guest agree to roughshod over anything that has anything to do with vaccines? I’m sure it wasn’t lost on those in the know in your audience the following comments:

    1) Mr. Krasney stepped over the Andrew Wakefield comment. Andrew Wakefield has been vindicated by the courts. But, the media continues to echo the rhetoric which continues to damn him, harm him, and, quite frankly, suppress the valuable contribution he’s made to the historical discourse on the topic of Autism. Why don’t you have him on your show? Among the books he’s written, one, in particular, may be of interest to your audience–Callous Disregard–and would serve, at the very least, as a useful counter-point to the “business as usual” vaccine rhetoric. Unless, of course, NPR/KQED’s advertisers and funders won’t allow any discussion of vaccines (like TED Talks won’t).

    2) Why let slide these comments? a) “Obsession with vaccines.” b) Mr. Krasney’s snarky comment about the scientific literacy of a MOTHER (Jenny McCarthy) who, by the way, has also written a book about her experience with her son’s autism. (Healing and Preventing Autism with Dr. Jerry Kartzinel), c) Something about the “anti-vaccine movement”… most of the parents I know who have concerns about vaccines are pro-vaccine safety (including Ms. McCarthy), not ANTI-vaxxers.

    Mr. Silberman said to one caller that he “wasn’t qualified to give advice” to autistic adults. And, yet, he presented himself as medically qualified to dismiss the remarks of the mother who chelated her child with autism (and her kid recovered). Is he a doctor who treats kids with autism?

    With respect to your educated audience, in a future program, it might be useful to simply state at the outset that you intend to suppress other viewpoints related to the topic that disagree with the guest’s opinion.

    • Beth Grant DeRoos

      Andrew Wakefield has been vindicated by the courts????

      Please provide reputable proof of this.

    • Another Mike

      Did Dr. Wakefield win his defamation suit against the British Medical Journal?
      Was Dr. Wakefield’s medical license reinstated?
      Is Dr. Wakefield licensed to practice medicine anywhere on Planet Earth?

      • Sally Park Rubin

        Hey Another Mike,

        Have YOU ever had a license to practice medicine anywhere on the planet? Are you a parent who’s experienced his child become desperately ill, disabled, or die after a vaccine or vaccine series? What have you done lately to help make the environment less toxic for your fellow humans?

        Your questions miss the point, Mike. There is a massive, man-made, worldwide epidemic of neurologically disabled children out there; and the media is complicit about it by constantly and consistently either repetitively echoing the very talking points that their advertisers dictate or by disallowing civil discussion about the downside of one of the many toxic factors that could be contributing to the problem–known neurotoxic vaccine ingredients.

        This overt dismissiveness occurred on the Forum program when Mr. Krasny, as moderator and interviewer, let Mr. Silberman’s ungrounded comments related to vaccines just slip by unaddressed. Mr. Krasny’s silence was a complicit acknowledgment of his point of view… Dare I suggest that Nazis complicit silence contributed to their Jewish neighbors going to the slaughter? What’s the difference? We’ve already lost a generation of children and the problem isn’t getting better. Shame on him!

        To make matters worse, Mr. Krasny added his own snarky comment about Jenny McCarthy–a mother of a child with autism. Why is it so fashionable to disparage parents who question the safety of vaccine ingredients? In fact, in his TED Talk, Mr. Silberman called parents who insist on their right to informed consent “science-averse.” Seriously? These are the parents who are actually reading the product inserts and asking questions based on what they read. And TED backs him up by not allowing any responses that suggest that there even could be a link between adverse reactions and vaccine ingredients–even while the Supreme Court has ruled vaccines “unavoidably unsafe” and the vaccine manufacturers have insisted on complete immunity from liability for their products. The public trust is at stake. Why not allow the questions to stick?

        Aside from the fact that he conflates Asperger’s Syndrome with Autism, Mr. Silberman sucker-punches the vaccine theory of autism and refuses to offer any temporal explanation in his historical review about the extreme rise of autism which began in the mid-1980’s to early 1990’s. Autism rates, at that time, were 1:10,000; are now more realistically @ 1:38; and are predicted to be at 1:2 by 2025.

        In the TED Talk, he shows a graph of the rise in autism, but doesn’t even ask: Why the rise at this historical moment? Had he mapped it with a graph of the corresponding rise in mandated childhood vaccines, he might have observed, at the least, a disturbing and questionable temporal correlation with the increase in the number of vaccines given to children.

        The flat out denial that there are any adverse events related to vaccines is just part of the vaccine propaganda machine at work all day every day 24/7 on the airwaves. And calling parents “anti-vaxxers” is just the line of attack du jour. Great article here about all this with references here: http://thinkingmomsrevolution.com/unavoidably-unsafe/

        I recognize that Jenny McCarthy hasn’t made it easy to defend her. But, honestly, I thought it would be beneath Mr. Krasny’s erudite reputation to demean a big-breasted blonde’s understanding of vaccine science. Have either of you a) read her book? Or b) met her in person? She is a wonderful woman, a single mother, and a caring mother of a child with autism. She’s also an author of several books, an activist, is a TV personality, as well as a model for Playboy magazine. These are not easy things to accomplish when you’re raising any kid, not to mention a kid with autism. (But, here you go, you two Mikes. Eat your hearts out! http://www.playmates.com/photo/sexy-photos-jenny-mccarthy).

        Her position is PRO-VACCINE SAFETY and she organized a march on Washington intended to bring attention to the toxic ingredients in vaccines. You know…MERCURY, ALUMINUM, FORMALDEHYDE, ANTI-FREEZE, SUCROSE… …the stuff I’m wondering (and you should, too) why any sane person would knowingly inject into their bodies. The march was entitled “Green Our Vaccines.” Wouldn’t you, for example, like the 50 mcg. of mercury removed from your yearly flu shot? Jenny’s working to help make vaccines safer for YOU, Mike.

        I was there at the march and walked alongside a set of grandparents whose grandson died six hours after his routine baby shots. When you meet parents who have gone through this, you begin to take a different tack on the topic. My highly verbal toddler stopped talking and stopped interacting with anyone after his first MMR shot and was subsequently diagnosed with autism (in the 1990’s). So, yeah, it happens.

        Myself, Jenny, and a lot of other mothers (and fathers) are simply trying to get a reasonable conversation going about neurotoxins. It’s really not about vaccines or the brilliance of vaccines, per se. It’s about the junk that’s in them. When these concerns are dismissed (as in the program the other day), it’s only going to serve to turn up the volume on those sounding the alarm.

        As for your Dr. Wakefield question, why re-license? As one caller pointed out (another comment that was summarily ignored by both Mr’s Krasny and Silberman), someone is killing our doctors.

        • Beth Grant DeRoos

          WOW I don’t even know where to start. First off I, Dr Temple Grandin and others had not even had any vaccines when we were tested and found to be autistic. So there doesn’t seem to be any one cause of autism. Although my mom and dad were in their thirties when I happened along so age of mother or father may play a role.

          As for Jenny McCarthy who claims to be a mother of a child with autism, she has flip flopped on this so often, to where she now claims her son was cured of autism when one cannot be cured of a neurological condition. But then she also says that the Lord led her to Playboy in Chicago to be naked in the magazine.

          And where did Dr. Mr. Krasny’s call Jenny McCarthy a a big-breasted blonde??????????????? And no I do not consider her books which I have read to be legitimate science based material.

          My main issue with autism is tri-fold. To many shots given at one time. To many shots being required for infants and toddlers whose immune systems are not yet mature enough. And having taken a class that Dr. Paul A. Offit taught via the U of PA, I dislike any doctor who makes millions of dollars developing vaccines that have clauses built in that protect the developer from being sued should something from something they created harm someone.

          • Sally Park Rubin

            Hi Beth,

            To your point: “There doesn’t seem to be any one cause of autism.” Yes. So, why rule out ANY toxic exposure? Genes need to interact with their environments to express.

            This is why they were never able to find ONE autism gene. There are thousands of them and, as I said, wholly dependent on the environment in which they find themselves.

            I always like to use the analogy that if you have the genetics to be allergic to cats, but you never encounter a cat, those genes will likely not express. Same with heavy metals. There is a subset of the population who can’t resolve these elements. So, if you inject a metal into a baby who has that inability to resolve an accumulation of, say, aluminum…what are the downstream impacts of these exposures?

            Why not develop a test to find out this sensitivity and then tailor a vaccine program to that child? I’m sure there would be a lot more compliance in that case.

            One individual’s overload could come from any number of sources…dental amalgams, for example. The food supply is contaminated with pesticides, for example. What did the mother eat during pregnancy? The TOXIC CONTROL ACT of 1976 has never really changed or changed much since it was enacted almost 40 years ago. https://en.wikipedia.org/wiki/Toxic_Substances_Control_Act_of_1976#2015 And we’ve got a problem with toxic chemicals in the food and water supplies, the air…. So, yes, to your point, it could be any number of things.

            I just strongly object to people who have or get the privilege of a public platform (including and especially journalists) to repeat what I call “Vaccine Rhetoric” without doing the research. Michael Krasny gave Mr. Silberman a complete pass on some of the comments he made. And, even when callers challenged some things, their concerns were not addressed.

            Jenny is the mother of a son named Evan who was diagnosed with autism. I don’t know how Evan is doing. But, he was treated by the doctor who treated my son and my son has lost his autism diagnosis. Hopefully, Evan is doing as well.

            You’ve read Healing and Preventing Autism: A Complete Guideby Jenny McCarthy and Dr. Jerry Kartzinel? …and you think it’s not scientifically accurate? Dr. Kartzinel treated my son and now my son is doing fine. I think Dr. Kartzinel a very skilled doctor.

            About Mr. Krasny’s disparaging remark about Jenny as a resource, you’ll just have to listen to the interview again. It was unkind, unenlightened, and unnecessary. The INFERENCE (SUBTEXT) was that she’s too stupid to get it right. I think he said something like she’s hardly a credible resource. I wish it were laughable. She’s surely got a broader and deeper knowledge base on these topics than Mr. Krasny does.

            And, you took a course with Dr. Offit. Here’s some information about his rotavirus vaccine: http://www.nvic.org/vaccines-and-diseases/Rotavirus.aspx

            Healing and Preventing Autism: A Complete Guide by Jenny McCarthy and Dr. Jerry Kartzinel, M.D. and don’t find it to be legitimate science. Well, you are entitled to your opinion. Dr. Kartzinel has had a lot of success with helping patients with autism, including my son.

            See, this points to what I was talking about in the first place. Some people are wired this way, which goes to Mr. Silberman’s point. Some people get sick and that deep systemic illness shows up in their behavior as Autism, which goes to my point.

            As I said, I don’t disagree that a certain form of Autism (Asperger’s Syndrome) has been around for a long time. This is the thesis of Mr. Silberman’s book. But, I think it’s important to NOT ignore that we have so many more sick children than when I was a kid. …no peanut allergies then, not so much asthma, diabetes, autism… all of which can be attributed to underlying autoimmune dysfunction. My son was one of those kids. We healed the autoimmune problem and the “fog” of autism began to lift. This does not mean that he didn’t have to make up for lost time in development. He did. But, he’s doing fine now.

            And, I guess you missed Mr. Krasny’s disparaging remark about Jenny McCarthy as a reliable resource for science. Go back and listen to the interview. It was INFERRED that she was too stupid to know much about it.

            So, I guess you don’t like Dr. Offit, I presume. He’s got his name on the Rotavirus vaccine: http://www.nvic.org/vaccines-and-diseases/Rotavirus.aspx

          • Beth Grant DeRoos

            YOU felt Dr Krasny inferred that Jenny McCarthy was a a big-breasted blonde in your earlier comments. Dr Krasny is as far from being a sexist as any one I know so do not put YOUR misguided sexist words and thoughts in his mouth.

            Autism speaks notes: Some children who no longer meet the criteria for a diagnosis of autism spectrum disorder are later diagnosed with attention deficit and hyperactivity disorder (ADHD), anxiety disorder or a relatively high-functioning form of autism such as Asperger Syndrome.

            And my dislike of Dr. Offit, is his unwillingness to at least try single vaccines rather than a half dozen in one shot. This would at least provide some data concerning side effects of the single vaccine.

          • Another Mike

            Beth, the recommended vaccine schedule is every month for newborns. There really would not be much recovery time for single shots (less than a week?).

          • Beth Grant DeRoos

            Mike I worded my comments poorly and apologize. In my perfect world one vaccine would be given every 2-3 months which would provide a better observation period should a side effect show up. Does that make any sense?

          • Sally Park Rubin

            Yes, it makes good sense, Beth.

          • Sally Park Rubin

            Okay, Beth. I still think that Dr. Krasny’s comment about Jenny was completely dismissive. Why do you think he dismissed her expertise when she’s got so much motivation to know this area of learning? Do you know him? Why don’t you ask HIM?

            Autism Speaks isn’t the only authority. You can’t really switch from Autism to Asperger’s Syndrome. One fundamental difference between them is that Autism has a (broken) language component and people with Asperger’s are highly verbal.

            Did Dr. Offit give a reason for not considreing single dose vaccines?

        • Another Mike

          Like Dr. Wakefield, the vaccine theory of autism is a spent force. The only studies that supported it were Wakefield’s fraudulent studies. Its day has come and gone.

          The MMR vaccine was licensed in 1971, and as you pointed out, the surge in autism did not occur until 20 years later. Mumps and rubella were not universal in the 60s and later, so parents who feared their children would get these diseases during or after puberty were incentivized to get them vaccinated.

          Even earlier, the DTP vaccine was licensed, in 1949.

          Further, the Supreme Court specifically ruled in Bruesewitz v. Wyeth that vaccines are NOT unavoidably unsafe. But they held that Congress created the Vaccine Court to be the sole means that those who claimed injury from vaccines could get compensated, assuming the victim suffered from a known side effect. Again, there is no evidence that autism is a known side effect.

          The one connection is that autism shows up in children of vaccination age. Schizophrenia shows up in young adults — can we blame it on beer and cigarettes? Living away from home for the first time?

          I am not unsympathetic — I know why cancer patients went in for krebiozen and Laetrile after conventional medicine failed. But needing something to blame does not demonstrate cause and effect.

          • Sally Park Rubin

            I realize I’m speaking Chinese to you, Mike.

            My son’s recovered.

            But, I’ve been in the trenches on this for 18 years. What’s your dog in this fight? Hmmm…?

            I think it’s important to NOT rule out toxic ingredients and vaccines are one obvious source of that. That was my point. It’s still my point. Why dismiss it? Why not talk about it? Why attack parents by calling them “anti-vaxxers” or suggesting that they want something to blame?

            It’s not sympathetic. At least, Mr. Krasny expressed some sense of sympathy, diminished as it was by his snarky remark about autism-mom Jenny.

            You’re trying to justify something…not quite sure what…that you’re right? Okay. You’re right. And in the eleven seconds it’s taken me to write this, another kid’s been diagnosed with autism.

            How are you helping?

            My other point is that I object to journalists parroting talking points without doing the research. You’re researching. That’s great, Mike.

            Add this to your research: http://www.scribd.com/doc/220807175/86-Research-Papers-Supporting-the-Vaccine-Autism-Link#scribd

            Enjoy the pictures.

          • Another Mike

            This discussion was about “the evolving definition, hidden history and public perception of autism.” You and others wanted to make it about the discredited noncause of autism. There are only so many topics that can be discussed in a 55 minute hour. People wanting to hijack the topic do not advance the discussion.

            What would have been relevant — and interesting — would have been hearing how you and your doctor cured your child of autism.

          • Sally Park Rubin

            Mike, It is my position that Mr. Silberman’s “evolving definition, hidden history, and his version of the public’s perception of autism” has holes in its logic. I’m not saying it’s completely wrong. I get the part about Asperger’s Syndrome likely being around for a lot longer than most people have considered…that it’s a different kind of wiring. And, to his credit, he’s making a case for accepting neurodiversity. That’s great!

            My point is that many children with autism are physically ill. Why are they ill?

            There were points in the discussion that should have been challenged or clarified by the questioner (Dr. Krasny) and Krasny just gave him a pass at every turn. I’ve already gone over those in detail in my first response. Of course, people in the audience are going to react to that. There are a lot of parents with kids on the autism spectrum in the audience. So, the audience is likely pretty well versed on the topic and wanted, like me, to see if he was really adding anything new.

            Your blame statement that I and others wanted to hijack the topic to make it about the “discredited noncause of autism” isn’t accurate. Mr. Silberman made statements that weren’t grounded and should have been challenged by the interviewer (Krasny). So, people called in. And I wrote in.

            I’m sure you watched his TED Talk, featured on the KQED page. Out of the starting gate, Mr. Silberman states incorrectly that “132 kids in California got the measles by either visiting Disneyland or being exposed to someone who’d been there.” There were, in fact, 51 lab-confirmed cases. He also did NOT mention that a significant percentage of those who contracted the measles were already vaccinated. http://www.nvic.org/nvic-vaccine-news/january-2015/measles-in-disneyland-third-mmr-shot-and-vaccine.aspx

            How about this statement? “Fundraising organizations like Autism Speaks routinely refer to autism as an epidemic, as if you could catch it from another kid at Disneyland.” <– This is a pretty snarky comment. IF kids were being diagnosed with measles at a statistical rate of every eleven seconds (like autism), it would be considered an epidemic.

            The "better diagnosis" argument doesn't work, since Asperger's Syndrome was dropped in the DSM-V (May 2013).

            His book attempts to make the case that it isn't vaccines, it's wiring. So, of course, it's going to somehow attempt to prove that the segment of the population who are convinced that autism is an illness, not just different wiring, is wrong. This is your camp. It's fine with me if you want to accept his position.

            He sounds like a lovely, well-meaning guy. I think he means well and is trying to do something good for people on the ASD. But, his viewpoint is very specific. And, he himself says that he hasn't lived with autism, only had an interest in it.

            He said in both the TED Talk and on Forum the following quote: "An autistic woman named Zosia Zaks once said, 'We need all hands on deck to right the ship of humanity.' As we sail into an uncertain future, we need every form of human intelligence on the planet working together to tackle the challenges that we face as a society. We can't afford to waste a brain." Anyone who believes this statement would not summarily dismiss our toxic world as a source of the many things we find going wrong with children's health (both mental and physical) in today's world. Sorry to say, a lot of brains are being wasted.

          • bija

            How about doing some research on William Thompson and his role in falsifying CDC documents. I believe that Dr. Andrew Wakefield was at least asking the hard questions and have read reports that he has been exonerated, as has been his research partner.
            Steven Silberman does himself a great disservice in the interview when he dismisses vaccines for the ridiculous reason that they have been implicated simply because they are given around two to three years of age, around the same time being given a diagnosis of autism. Every parent knows the vaccine onslaught begins within hours, if not minutes, of birth and doesn’t stop. By two to three years, the child has received such an onslaught of toxins that I can’t believe any parent in their right mind wouldn’t question this regimen as being unsafe for anyone, let alone a developing immune system and brain!
            C’mon people…use some common sense. Some thing or things are creating this epidemic and future predictions are that one in every two children will have autism by 2030, What kind of a future is that for humanity???
            When our vaccines are toxic and bundles, our water poisoned, our air sprayed with toxic heavy metals, and our food altered, how can we expect any semblance of health in our future generations??? Any one of these is sufficiently harmful to the human organism. All of this together promotes synergistic toxicity and we are all at risk.

          • Sally Park Rubin

            PS: My intention in being on the thread isn’t to “convince” anyone, so much as to make sure the thread includes an important perspective that wasn’t represented on the radio show. I have nothing to “defend”–I’ve just done my part to speak for the many who find lacking the point of view of Mr. Silberman’s work.

    • Sarah Pursell

      THANK YOU! Thank you Sally for writing this far more eloquently than I would have. I have been so upset since hearing this interview. I was appalled at the blatant disrespect given to the caller who had cured her daughter of her autism diagnoses, the bad mouthing Jenny McCarthy and the mention that chelation has nothing to do with autism despite the fact that Steve Silverman said that he had no background in the biology or etiology of autism. These two men had no apparent understanding of the EXPERIENCE of having a child or children on the spectrum and all the health issues they can face. While no two children on the autism spectrum are alike I can only say that my two children are doing far better now that they are being treated by doctors well versed in ASD and comorbid health issues. I am thankful to our doctors and respectful of the other parents facing similar challenges. I do not understand why people who have experienced success with ASD are being treated with such scorn.

      • Beth Grant DeRoos

        People who have experienced success with ASD are being treated with such scorn? Scorn? Maybe some well educate folks see a difference between Jenny McCarthy and someone who believes in peer reviewed research. That isn’t scorn.

        While I have read that chelation can be an effective way to treat heavy-metal poisoning, and that the U.S. Food and Drug Administration (FDA) has approved prescription chelation therapy for the treatment of lead poisoning, it is interesting that the same people who denounce the FDA for approving so many childhood vaccines and their protocols trust the FDA on the legitimacy of chelation therapy.

        By the way have you even read Steve Siberman’s book?????

        • Sarah Pursell

          I and my son have lead levels that are 2 & 3 x the upper limit. We are not choosing chelation because we have found other supplements that support our genetic mutations that have been reducing our detoxification abilities. I am not pro or against chelation as a means of detoxing metals. Metals however are known to play a part in developmental delays & behavioral issues. Working with a knowledgeable doctor to reduce body burdens can be helpful.
          I have not yet read Steve Silberman’s book. And I do not believe it’s appropriate to regard Jenny McCarthy with disrespect regardless of her educational background. Publicly shaming someone you don’t agree with is not okay.

          • Beth Grant DeRoos

            Sarah Pursell you wrote ‘And I do not believe it’s appropriate to regard Jenny McCarthy with disrespect regardless of her educational background. Publicly shaming someone you don’t agree with is not okay.’

            What about the public shaming of Dr. Krasny when Sally Park Rubin accused him of something he did NOT do when she wrote ‘Mr. Krasny’s erudite reputation to demean a big-breasted blonde’s understanding of vaccine science (Jenny McCarthy)?

            Dr Krasny as I then noted is not a sexist and would NEVER make a vile comment like ‘big-breasted blonde’. Personally hearing another woman make that comment is much more troubling.

            At the 6:41 mark Dr. Krasny and his guest Steve Silberman began the serious discussion of the evolution in the study of autism. And denounced the early belief that mothers were the blame. At the 7:50 mark Dr. Krasny notes it brought tears to his eyes. Then at the 8:24 mark they discuss how since the 90’s major changes in theory have occurred, with a main belief being that one size does not fit ALL when it comes to autism. They also discuss the changes in ’86 ’94 that led to more children being diagnosed who in earlier decades were ignored.

            At the 11:10 mark they discussed ADHA, dyslexia, genetics etc. And at the 16:23 mark they applaud ALL the internet sources for parents who have or suspect their child is autistic. My parents and Dr. Temple Grandin’s parents did not have these resources back in the ’50’s. At the 20:25 mark Steve Silberman notes the parents he dealt with were more concerned about caring for their child than what caused the autism which is a huge part of the book.

            At the 29:25 mark the one parent with the 24 yr old daughter called in to share her experience with removing heavy metals and 40 hours PLUS a week of educational and behavior therapy which resulted in her daughter being removed from the autism spectrum. To which BOTH Steve Silberman and Dr. Krasny said they wished the daughter their best.

            The one caller named Paul was great (in my view) because he noted that so much of the research per autism is male centered and how sexist (my view not his) this is because females made simply learn how to not be so obvious and to blend in. Also appreciated the father who called in next who noted one never gets over being autistic, and that its a life long condition!! And it was then that Steve Silberman noted where Jenny McCarthy had said ‘there are no autistic adults, its all now’. Which is 100% NOT true and she would have KNOWN this is she was as educated as she wants people to believe. That statement was an insult to Dr. Temple Grandin, myself and all the other adults with proven autism and perhaps even Bill Gates, Mark Zuckerberg, Steve Jobs whom friends have noted are on the spectrum.

            At the title of the book is NeuroTribes: The Legacy of Autism and the FUTURE (my emphasis) of Neurodiversity. And on Amazon (where I got the book) they note ‘A groundbreaking book that upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently’. ‘Going back to the earliest days of autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long-sought solutions to the autism puzzle, while mapping out a path for our society toward a more humane world in which people with learning differences and those who love them have access to the resources they need to live happier, healthier, more secure, and more meaningful lives’.

            “NeuroTribes is a sweeping and penetrating history, presented with a rare sympathy and sensitivity. It is fascinating reading; it will change how you think of autism, and it belongs, alongside the works of Temple Grandin and Clara Claiborne Park, on the bookshelf of anyone interested in autism and the workings of the human brain.”
            — From the foreword by Oliver Sacks, author of An Anthropologist On Mars and Awakenings

      • Sally Park Rubin

        Hi Sarah,

        I wasn’t going to bother reading any responses…avoided it over the weekend, so as not to get sucked into arguing with Beth or Mike. But, when I saw the words “Thank You,” I read your response.

        YOU ARE WELCOME. And…thank you for your kind reply.

        Not much else to say…. other than… Beth missed the idea of “inference”: No, Dr. Krasny did not use the actual words “blonde bimbo,” but it was inferred. His comment was dismissive and sexist and he doesn’t have any idea what she’s been through (or what any autism parent goes through). I’m quite surprised that Beth, having stated that she’s on the Spectrum, didn’t take a more even-handed stance. She seems to have something against Jenny McCarthy, too. And, as Krasny did with Silberman, Beth gives him a complete pass on his either ignoring opposing comments or dismissing them. But, hey, she’s entitled to her perspective. I said what I had to say. Sorry she has such a low opinion of me for my points of view. Oh, well…

        You know, when you put yourself out there, you are going to get some negative responses. What’s the alternative? Shut up and not speak to the disaster that’s going on in children’s health today? I’ll take my knocks.

        I’m not sure about Mike. He and I could both argue that one or the other of us has drunk the Koolaid. I just find it awfully odd when someone denies someone else’s experience when a) they weren’t there and b) they haven’t been in the trenches doing the really tough work it takes to recover these children from these environmental assaults.

        As I said before (and I’ll reiterate it here), I agree that Asperger’s Syndrome has likely been around for a long time–different wiring. This is the point that Mr. Silberman was trying to make and he is surrounded by the Geek Culture. So, fine. I like all my Aspie friends, too. The Autism (not to be conflated with Aspergers Syndrome) that we’re seeing these days, however, is epidemic and new. Never in my lifetime have I ever seen so many children this impacted with autoimmune problems.

        In my son’s case, when we cleared up the autoimmune problem, the fog of “autism” cleared up. This is why I make the claim that autism is a SYMPTOM OF A CONFLUENCE OF METABOLIC PROCESSES GONE AWRY. And, I will say it to my dying day because that has been my personal experience. So, if I had any heat under my collar regarding Mr. Silberman’s work, it had to do with the two interviews I listened to (TED and Forum) in which he summarily dismisses even the idea that toxic elements could be at cause in the neurological regression of so many children. If it were only so simple as different wiring…. Sadly, it’s not.

        On that cheery note, I, for one, am so HAPPY TO HEAR that your children are thriving from bio-medical intervention, that you’ve found a thoughtful doctor. Keep going! I’m sure you’ve read “Turning Lead into Gold” by Nancy Hallaway. If not, just an fyi.

        Sally Park Rubin
        Writer, Producer, Director “The Rocket Family Chronicles” (The Autism ChannelTM)
        Co-author: The Overfunctioning Woman’s Handbook: Uncommon Sense to Deal With Impossible Jobs and Impossible People and upcoming (Summer 2016): Voices From the Village (voicesfromthevillage.com)

        • Beth Grant DeRoos

          You wrote ‘I wasn’t going to bother reading any responses…avoided it over the weekend, so as not to get sucked into arguing with Beth or Mike’ We were arguing? Thought we were having a discussion.

          Then you wrote ‘But, hey, she’s entitled to her perspective. I said what I had to say. Sorry she has such a low opinion of me for my points of view.’ I have a low opinion of you for your points of view? Nothing could be further from the truth since I like learning what others think and why.

          You then wrote ‘ No, Dr. Krasny did not use the actual words “blonde bimbo,” but it was inferred. His comment was dismissive and sexist and he doesn’t have any idea what she’s been through (or what any autism parent goes through). I’m quite surprised that Beth, having stated that she’s on the Spectrum, didn’t take a more even-handed stance. She seems to have something against Jenny McCarthy, too.’

          Are you not making an error in insisting Dr Krasny inferred what you thought? And how do you know Dr Krasny has no idea what ANY autism parent goes thru?

          And using reputable information not emotion I like facts not pseudo science which in my personal opinion Ms. McCarthy embraces. And I happen to base my views on the choices she has made in her life, having heard her speeches, read her writings, which any reputable researcher would use to ascertain methodology and reliability.

          This does NOT mean I hate her.

  • Another Mike

    I didn’t realize when I heard this show (which I enjoyed) that Steve Silberman would soon come to OWN public radio. I just heard him three more times in three days (Fresh Air, npr news, and Science Friday). I suspect he will soon also be on Wait Wait, Whaddya Know, and a Weekend Edition or two.

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