NeuroTribes: One Step Forward, Two Steps Back for Autism

The following is a blog post by one of our readers.  After reading some of our previous blogs Jill promised to write her own criticism of Neurotribes. Given her full time endeavor as a mother of 2 autistic children writing is a luxury and it took her longer than expected.  She emailed me several days ago alerting me as to her blog and allowing me to post it within Corticalchauvinism.com. Jill, as many parents of autistic individuals, take exception to the fantasy tale spun in Neurotribes and to the possible deleterious consequences of the same.

Jill Escher is an autism philanthropist based in Silicon Valley, specializing in research examining factors playing a role in the heritability of autism. She is also the mother of two children with nonverbal autism, a provider of low-income housing for adults with developmental disabilities, and president of Autism Society San Francisco Bay Area, a nonprofit focused on the mounting adult autism crisis. The Escher Fund for Autism’s latest RFP, “Exogenously Induced De Novo Germline Errors (Genetic or Epigenetic) in the Etiology of Autism Spectrum Disorders” can be found here. Learn more at jillescher.com.

 

Picture

by Jill Escher

You’ll have to pardon my tardiness in penning a review of the book NeuroTribes by Steve Silberman. With two autistic children and several jobs, analyzing books that get so much wrong about autism is an endeavor that tends not to top my priority list. But this tome attempting to reinvent the history of autism has unfortunately generated a great deal of interest in some circles, warranting at least some, however belated, response to help correct at least a few of its more grievous errors.

But first, let me say something nice. The book is clearly an attempt to create a positive narrative about a disability that has caused tremendous panic and confusion in the public mind. As the mother of cherished children with severe, nonverbal forms of autism, I could not agree more that people disabled by this mysterious condition are a terribly special breed, even if their brains may be short-circuited in some way, or at least not wired for “normal” thinking or behavior. They deserve society’s full respect, acceptance, and support, period.

Also, as the book delves into the dark past of how society treated those with cognitive disabilities, it excels in reminding us of when “feebleminded” people even quite a bit less functionally impaired than my children were viewed as “life unworthy of life,” “useless eaters,” or “human ballast,” and routinely mistreated, left to rot in institutions, or worse. It also does a solid job of questioning behavior modification as an autism treatment, and rehashing the history of the disproven vaccine hypothesis of autism.

Unfortunately, the book’s welcome elements are overshadowed by its abundant and serious flaws. I’ll discuss just two, but before I do let me offer a brief Cliffs Notes for those who have not read it. NeuroTribes sees autism as a natural condition, a form of neurodiversity harboring both challenges and gifts that is caused solely by age-old genetic variants; it posits that autism rates have not increased over time, but rather the surge is merely an artifact of shifting diagnostic labels, service grabbing, and greater awareness of the post-Rain Man age; it argues that society needs to merely accommodate this somehow formerly hidden mental disability rather than looking for causes or treatments. In order to justify this smiley-faced world view, Silberman serves up heaping platters of misinformation and illogic, as it must to reach such extraordinary conclusions. Let me explain.


Picture

Hey, here’s a “strange gift”— pillow feathers my autistic son unleashed on my bedroom floor.

First, the book relentlessly trivializes autism and the permanent, serious disability it entails by expanding its definition to the ends of he universe. He sees autism is a “strange gift” pervasive in the realm of quirkies and eccentrics, including science fiction fans, university professors, computer programmers, anyone with a prodigious memory, nerds, brainiacs, little professors, math geeks, amateur radio enthusiasts, introverts, and an array of brilliant, enterprising and competent people like scientist Henry Cavendish, inventor Nicola Tesla, inventor Hugo Gernsbach, and a psychiatrist who pioneered his profession’s Diagnostic and Statistical Manual, among many others. The members of this autistic tribe are uninhibited thinkers who “sketched out a blueprint for the modern networked world,” and “anticipated developments in science.” Before the past two decades or so, these were “Adults wandering in the wilderness with no explanation for their constant struggle” until the definition of autism ostensibly expanded to include them and confer on them a special identity, mode for self-understanding, and rhetorical platform on which to demand therapies and societal accommodations.

In defining “autism,” it appears that Silberman and I cannot possibly be talking about the same disorder. I read that “Autistic people are now taking control of their own destinies” while my nonverbal children, with their 30-40ish IQ levels, were shredding my bedsheets, destroying their iPods, shrieking, and jumping around naked. Am I just stupid for somehow missing their hidden ability to control their own destinies and invent modern networking technology? I know hundreds of people with autism, and as much as I adore and value them, almost none of them stand any chance of true independence or controlling their own destinies, let alone attaining stunning achievement in the sciences, or any other discipline for the matter.

Yes, I will agree there are some on the mild end who can function fairly independently, but as a hallmark of their disorder often can’t hold a normal conversation, make normal eye contact, make friends, execute solid judgment, negotiate public transportation, fend off abuse, read subtle social cues, vary a routine, and/or hold a job. Even this form of so-called “high-functioning” autism is debilitating, with most individuals needing at least some form of lifelong supervision and support. But for the most part, people with autism are even more incapacitated, such as my friend’s 12 year-old son who regularly attacks his parents and siblings and typically spends his days flicking pieces of string in front of his face. Or my friend’s 18 year-old son who can have a brief conversation but is now 6’ 4” and easily slips into rages involving things like hurling televisions across a room. My friend’s autistic daughter, 17, has some words but cannot attend to her own menstrual periods or personal hygiene, and defecates on her floor. Silberman from time to time touches on these forms of autism, which comprise about half of the spectrum, but usually only to defend the way parents have accepted them instead of trying to change them.

Even if clinicians are wildly over-diagnosing mild social impairments as autism, as Silberman contends, there is no evidence in the literature that non-autism diagnostic fakery is driving the increase in diagnosis. Indeed, research shows that only a small fraction of autism cases appear to lose the diagnosis, maybe 7-13% of cases, and even then the subjects are typically left with other serious behavioral or cognitive challenges such as ADHD. Within the walls of clinicians’ offices, autism is no Geek Syndrome, but a markedly impairing pathology that manifests in early development and persists throughout life.

The second failure is the book’s breathtakingly confident but absurd conclusion that there’s no true increase in autism. The autism epidemic is nothing more than an “optical illusion” as Silberman stated in a radio interview. In his view, “Asperger’s Lost Tribe” of brainy goofballs populate the bulk of the increase in the autism numbers, with the remainder more impaired cases merely resulting from a shift in labels from “childhood schizophrenia” and “feeblemindedness” to “autism.” While the diagnostics have shifted a bit over the decades, the essential characteristics have not expanded to a “rainbow of a million colors” based on a “veritable banquet of options,” as Silberman puts it. Autism under any regime is a permanent, serious mental disability with criteria based on significant impairments solidly outside the norm of human mental and behavioral development.

When talking about autism growth, it’s fundamental to compare apples to apples, and even among the more classically impaired subset, the numbers have skyrocketed, an area Silberman conveniently omits. For example, as a Californian, it would have been natural and easy for Silberman to have obtained and analyzed our state’s autism data, which is widely regarded as the best in the nation. If he had bothered to look, here’s what he would have found.

Since the 1970s, California’s Department of Developmental Services (DDS) has included residents with autism, limited to those deemed developmentally disabled and in need of lifelong care owing to their very significant functional limitations. In other words, it includes only the more severe end of the spectrum, and excludes by definition anything like an “Asperger’s Lost Tribe” of intellectually intact social misfits. Though DDS does not include all people with developmental disability-type autism, as not all families have sought services for their disabled family members, it is generally agreed that the system represents the vast majority of cases, particularly among adults. Notably, DDS autism cases represent only about 59% of same-age autism cases identified through California’s special education system, which employs a broader set of criteria.

So, what sort of autism growth has the DDS system seen? Even as DDS has enacted more restrictive eligibility requirements, developmental disability-type autism cases have unequivocally skyrocketed, beginning with births in the early 1980s. DDS now adds about 5,000 autism cases per year, up from about 200 per year just three decades ago. The total DDS autism population now exceeds 83,000 cases, up from about 3,000 25 years ago. And even if one presumes that the system’s mild decline in cases of intellectual disability is due to reallocating those cases to the autism category, this modest shift could not begin to account for the torrential surge in autism cases.

Furthermore, to agree with Silberman’s argument, you would have to believe that somehow California’s robust DDS system, regarded as the best and most encompassing in the nation, missed many tens of thousands of cases of one the most incapacitating and obvious mental disorders in the history of humanity. You would have to believe that languishing in attics and basements throughout the state today are tens of thousands of obviously impacted neurodevelopmentally disabled autistic adults who cannot care for themselves but were somehow never picked up by a system designed to find them and serve them.

Staff and service providers in our state’s system have been emphatic with me and other community leaders that there is virtually no chance of any appreciable number of DDS-eligible autistic adults, particularly over the age of about 30, not yet identified by our system. DDS-eligible autism cases are even more striking and obvious than mere intellectual disability, and more disabling in their features. There is zero evidence anywhere of a vast horde of DDS-eligible but undetected adults with autism in California.

A few years ago when sharing my astonishment about autism epidemic denialism with one of the top officials at DDS, who had worked in the system for decades, he explained that “the people we used to routinely place in institutions were rocket scientists compared to the people coming into the system today.” In other words, people served by the system tended to have milder functional impairments than seen in the glut of autism cases entering the system today. The agency, in a state of shock more than a decade ago when the autism caseload reached a most unexpected 16,000 (laughably small by today’s numbers), erected more stringent, not broader, entry criteria. What’s happening in California, our nation’s most populous state, and the one with the best autism data, is precisely the opposite of what Silberman contends.

At an event last week I spoke with the gentleman who first proposed in the 1970s that autism be included in the California DDS system, which in its early decades had been restricted to categories of mental retardation, cerebral palsy, and epilepsy. “People didn’t think it was necessary or of much importance,” said the long-time DDS employee. “There were just so few cases of autism back then.” Silberman would shrug off this gentleman’s observation with the justification that “Autistic people in previous generations were hard to see.” But let me be clear: nothing about developmental disability-type autism, then or now, is or was hard to see. Please come visit DDS autism clients if you think differently. Ask any clinician or teacher if they were just blind to autism back in the 1960s, 70s, and 80s. As my 17 year-old son shreds his shirt, and eats sticks, grass and foliage as we hike while tapping furiously at his broken iPod, you tell me that anything about autism is hard to see. As you try to engage with my almost 10 year-old nonverbal daughter in conversation and she doesn’t even seem to notice you are there, tell me again that autism is oh so hard to see.

Likewise, it’s striking how the book glances at but then dismisses evidence that autism was once incredibly rare. For example, it acknowledges that Leo Kanner, the nation’s foremost autism expert for decades after he published a seminal paper in 1943, said he had seen only 150 true cases of autism in his entire career, or 8 patients a year, while fielding referrals from as far away as South Africa. Silberman accuses Kanner of artificially restricting autism to a narrow set of severe mental infirmities, denying the right of the Asperger’s Tribe to the same label. But there is no doubt that Kanner would have recognized my nonverbal, food-tossing, paper-shredding kids as autistic, or most of the other 83,000 now in the California DDS system. Silberman states that Autism Society founder Bernie Rimland’s “family pediatrician who had been in practice for 35 years, was at a loss” to diagnose his son Mark, as he had never before seen a case like that. I have found this to be true with every long-time pediatrician with whom I have spoken. It was extremely rare for them to encounter the patently abnormal neurodevelopment of autism — under any label— until roughly the 1990s. But Silberman, always unwavering in this commitment to the idea that the vast majority of autistic children were just hidden behind other labels, implies the entire medical field, including Mark’s ignorant pediatrician, were engaged in sort of mischief around labels instead of noticing truly increasing numbers of cases. Meanwhile, autism has grown to such massive proportions that, at least according to one study out of UC Davis, its burden on the American economy could exceed three percent of GDP in ten years. One mental disorder = 3% GDP. Did you read that?

Apart from its discounting of autism data, and our collective historical memories, even more unforgivable is the book’s misleading attempt at a scientific denouement about the always-been-here nature of autism. After its long haul through historical alleyways of questionable relevance it arrives at this statement on page 470:

“In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others. Whatever autism is, it is not a unique product of modern civilization. It is a strange gift from our deep past, passed down through millions of years of evolution.”

(Emphasis mine.) For this sweepingly confident conclusion, Silberman cites to a single paper, Gaugler et al 2014, “Most genetic risk for autism resides with common variation,” Nat Genet. 2014 Aug; 46(8): 881–885, that speculates, based on statistical methodologies and not direct evidence, that 54% of cases of autism in Sweden may stem from yet-to-be-identified heritable genomic variations. The study did not actually show that the common variations actually caused autism, and did not look at ancestral genetics. And even if you take the study as hard fact, which it is not, it still left 41% of the Swedish autism cases unaccounted for. As always, however, the book skirts or ignores what this very limited study actually says.

And worse, the “genes from the deep past” idea is just not true. Evidence is mounting that much of autism is likely attributable to a wide variety of de novo genomic glitches present in the affected children but not their parents. Yuen et al (2015) reported striking findings of heterogenous de novo mutations even among ASD sibling pairs, Iossifov et al (2015) reported that half of autism cases are likely caused by de novo genomic mutations. And just last week Brandler et al found a surprising variety of spontaneous mutations, including simple deletions or insertions and “jumping genes” likely contributing to autism risk.

So, are my children’s abnormal brains a “valuable part of humanity’s genetic legacy,” per NeuroTribes, or the result of some intervening factor that damaged the genes from which they are derived? I would strongly argue the latter. If I had to place bets about the heritable source of my children’s strikingly abnormal neurodevelopment I would put all my money on my own (and therefore my vulnerable eggs’ own) 1965 prenatal exposures to extreme doses of synthetic steroid hormones and exactly zilch on the Silbermanian notion of “strange gift from the deep past handed down through millions of years of evolution.” I’ve found innumerable autism parents with similar stories, be it our fetal exposures to pharmaceuticals, drugs, cigarette smoke, or otherwise. This “intergenerational effects” hypothesis is an emerging area of research, with the skewed history of our germ cells finally being put under the proverbial microscope. If you would like to learn more about this hypothesis, please visit my website germlineexposures.org.

But enough about developmental biology. Before I close, let me finally highlight the strangeness of the book’s closing paragraph:

“With the generation of autistic people diagnosed in the 1990s now coming of age, society can lo longer afford to pretend that autism suddenly loomed up out of nowhere, like the black monolith in 2001: A Space Odyssey. There is much work to be done.”

(Emphasis mine.) Huh? Did I read this correctly? We have a crisis today because we have been pretending that autism barely existed in previous generations? Our autism housing programs, day programs, social services, and schools are pretending they  are bursting at the seams with droves of mentally disabled people they never used to see? An entire generation of supremely disabled autistic young adults with nowhere to go, nowhere to live, no one to care for them, because we failed to identify these same supremely disabled people now in their 30s, 40s, 50s, 60s, 70s, and 80s? But I guess I should not be surprised at the book’s last gasp, since under Silberman’s simplistic and boundless logic, we could have 50%, hey 80%!, of our children flapping, jumping, grunting, nonverbal, and diagnosed autistic today, and they all would necessarily arise from mere shifting views of autism, and we would also necessarily have missed millions of similarly incapacitated adults. To Silberman, there is no other explanation.

In closing, NeuroTribes is a phase—some complacency-manifesto-wreckage on the road toward progress in the understanding of this explosion of abnormal neurodevelopment we call autism. While I believe that like many trendy autism mishaps before it, NeuroTribes, too, shall pass, I also fear it may do lasting damage to our society’s collective quest for the truth about this extremely serious explosion of brain-based disability.

38 responses to “NeuroTribes: One Step Forward, Two Steps Back for Autism

  1. Dear Jill
    First events first: Gene events in factorial, i.e. astronomical, numbers of interacting combinations likely most heavily influence a behavioral anomaly, with no established biomarkers, yet, diagnosed as “autism”. This means funding for cohorts of 50,000 plus will be required for gene-imaging studies.
    Next, environmental events influence all previous and later events.
    Next, its uncertain where, and when, the above events act on the system to result in a particular anomaly.
    Uncertainty, introduced first in 1927, by physicist Werner Heisenberg, still rules especially over neuroscience.
    Critique, and especially the criticism part, is gold to us science authors. Anyone can compliment, but, it takes multidisciplinary knowledge and decades of experience to make a constructive criticism.
    Your article might be biased due to your children, is not concise and doesn’t suggest methods for future studies.
    Best wishes, Joe

    Confidentiality Note: This communication is intended for use only by the individual or entity to which it is addressed. It contains information that is proprietary, privileged, confidential, and exempt from disclosure under applicable law. If the reader of this message is not the intended recipient or the employee or agent responsible for delivering the message to the intended recipient, you are hereby notified that any dissemination, distribution or copying of this communication is strictly prohibited. If you have received this communication in error, please contact the sender immediately and destroy the material in its entirety, whether electronic or hard copy. Thank you.

    Like

  2. Jill, I believe you have done a great job in portraying a realistic view of autism. Hopefully, the myth of biodiversity will soon evaporate after -indeed -causing some damage. I work with autistic children from all ages and degrees of disability. Most of these children are from parents born outside USA (mostly in Latin American countries) and most of the (95% of them) have no history of Autism in the families or any other related mental illness. Interestingly, relatives of these families living in their country of origin report no incidence of autism in their families. The question seems to be: what is causing the expression of aberrant genes? I truly believe that Big Pharma has been a Big Promoter of Mr. Silberman’s ideas about autism as it absolves them from self-evaluation. Great Job!

    Like

  3. I haven’t read the other discussions here of this book, but last month I encountered it in Foyles bookshop just inside the door (though since disappeared). As I’ve been studying autism for more than 30 yrs now I thought I’d take a peep. I soon noticed that the mmr vaccine theory and thimerosal vaccines theory were muddled together in one sentence with the notion that they were the same thing. From that alone it was clear that this book was written by someone who had not taken the trouble to actually inform himself properly before writing such a huge volume of words.

    Yesterday I was in the train station where WHSmith have a little shop with small books section. Neurotrash was positioned at the non-fiction no. 1 slot. I turned them all round backwards while no-one was watching. These things do come and go again…..

    As for the non-existent increase, that is clearly now an official policy choice:
    http://www.autismcauses.info/2016/01/identifying-lost-generation-of-adults.html
    (of which more to come).

    Like

  4. PS: I think some books get heavily promoted because they contain a commercially-convenient thesis which some big corps want to promote and have plenty money and connections to do so. As a result they appear to be greatly successful “bestsellers” even though that status is only gained from the financial promotion rather than the actual merits or enthusiasm of readers. In the case of Neurotrash, the key (propaganda) thesis is that autism has not really increased (and is not due to some embarassing environmental factor, and vaccines are the most important vitamin in history). It’s part of the same denialist operation referred to in my previous comment here. Cambridge’s ARC have also been bought basically.
    As a result x number of people will buy this book. But y/x of those people will then fall asleep looking at that endless boring text (unless they are already obsessed with the minutiae of autism history which VERY few people are).

    http://www.amazon.com/NeuroTribes-Legacy-Autism-Future-Neurodiversity/product-reviews/158333467X/ref=cm_cr_dp_qt_hist_one?ie=UTF8&filterByStar=one_star&showViewpoints=0
    Amazon’s 6% one-star and 2% 2-star, including the following, speaks for itself of the inability to find a decent author and editor to produce even a competently deceiving book:
    “Was surprised at the poor writing quality, given all of the excellent reviews. Author has the tendency to wander all over the place during each chapter.”
    “It was quite long winded”
    “The book is extremely slow paced, filled with irrelevant minutiae and tons of back story that the reader (at least this one) does not find interesting.”
    “The writing is very long-winded and a decent editor (apparently silberman did not have one before the book was published) should have cut about 50% of this”

    Hahahahaha.

    Conclusion: This book is a failed propaganda op and a one day shooting-star wonder. In a year’s time most copies will be in the trash and it will have been forgotten about. (Well, everyone will be buying my own anyway….www.expertpseuds.com.)

    Like

    • For the most part I agree with Jill. I am one of those people she referred to on the higher end of autism. Despite now being very articulate, I have quite evident motor impairment and couldn’t hold down even a menial job. School was a major problem and I couldn’t follow classes. I was very much bothered by this idea people such as myself will somehow drop their current activity to somehow come running to Silicon Valley so we can be “represented”. Personally, I’ve no interest in programming or doubt would get past the first minute of an interview. I think Steve is classifying autism traits as the same as full pathology. I believe Einstein had a good dose of autism but not the full disorder.

      Like

      • ” a good dose of autism but not the full disorder.”

        That’s a most peculiar phrase, because it combines two contrasting concepts. There’s no such thing as “full” or not “full” autism. If there was then someone would have shown the means of distinguishing them by now, 75 years since Kanner and Asperger. In reality there is a continuous range of how much autistic characteristics the person has — how autistic they are. Just as people are more or less tall rather than “having tallism”.
        Secondly, there is no basis for a notion that autism is a “disorder”, and plenty evidence that it is not. This is explained more fully in Chapter 2 of the book Experts Catastrophe now on Amazon.

        Like

      • Careful reading of Asperger’s papers will reveal several instances when he distinguishes autistic traits from the full picture of Autistic Psychopathy. That is “psychological, autistic pathology” Also, it seems the case studies selected for the paper were ranked by Asperger on the basis of severity. Asperger summarised this as the extent by which each patient was disconnected from their surroundings. Cut off from the world around them.
        There are multiple passages where Asperger clearly states he distinguished between the full criteria for a pathological disorder and the more commonly observed traits of autism. This is why family members are included in the paper. For example, Fritz F’s mother. It’s clarified the family members who exhibit clear traits of autism remained funtional in society. Yet, the child patients were not in any way socially functional. These children were so disconnected from everyday life, they barely communicated with others and were literally removed from State School.
        Did Asperger classify the children in his clinic as having a disorder? I believe Asperger had the most positive approach of a clinician in history, but careful reading of his papers suggests he concluded only a small minority of his patients might be sufficiently compensated by giftedness. Certainly Asperger embraced giftedness as a positive reality but would also have been well aware of the gravity of the problems faced by the majority.
        After some years of constant research, my belief is even higher-functioning autistic patients are being (unintentionally) misrepresented by the Autistic Community. I have seen cases where families have experienced real turmoil. In my view, what might really help would be to go back to diagnosis of autism as a definite, defined condition where we acknowledge families are confronted by concrete challenges.

        Like

      • There’s a huge essay aleady done. A very in depth analysis of Asperger’s Children in Vienna. I was writing it since Christmas. Emotionally kind of hard to write as it’s hard to remain detached. The essay is open to all to read and comment. My current project is research of Grunya Sukhareva’s 1920s papers and this is the work Asperger probably adopted. Suhareva’s patients were identical to Asperger’s and I see little difference between the two since all her patients had been removed from State school. First actual term used was at that time Schizoid Avoidant, Autistic Psychopathy but maybe it came from German.

        Like

      • “Grunya Sukhareva’s 1920s papers”

        Do be aware that a certain Dr JL Down gave descriptions in 1887 of what looked suspiciously like early-onset and late-onset autism. So, as so often, the evil Brits got there first….well, first-er. (I apologise I don’t have the full reference at hand.)

        Like

      • Quiza no se haya enviado. Lo intentare otra vez

        De vez en cuando veo algun film en espanol y, si me aprovecho de los subtitulos, mas o menos entiendo el dialogo. Suelen ser peliculas americanas traducidas. Ahora no estudio los idiomas tanto como solia hacerlo en el pasado. Sin embargo mi hermano estudia espanol todos los dias y hace intercambios con estudiantes en Espana (es decir, video y conversacion). Por lo que se refiere a mi se me ha olvidado bastante pero las peliculas ayudan.

        Like

      • Me alegro. Por lo menos el escrito en espanol es muy bueno. Yo no lo practico mucho. Antes traducia los blogs al espanol pero ya hace tiempo que no lo hago.

        Like

      • Sigo estudiando ruso un poco pero me parece raro que los rusos no se interesen y no hagan preguntas. Hoy en dia hay menos gente que lo estudia (ruso)/pero si alguien lo intenta pienso que seria agradable comunicar. That is, I find when I use Russian on a Russian psychology forum, there’s no interest at all. Nobody will ask why you learned the language or ask about English language. Fortunately it doesn’t matter as it’s still useful for neurology.

        Like

      • I have gone many times to Russia and have many friends from that country. Overall, I have found them to be more reserved than people from other cultures. Curiously, I have found Chinese to be more interested and proactive in asking questions. Best regards

        Like

      • Just because Asperger said something (let alone at a time when there was vastly less knowledge about the autistic syndrome) does not mean we have to accept it as some definitive holy revelation. It remains the factual case that there is no clear distinction of “full” autism or whatever, any more than there is “full biggism” or “full tallism”. Sound facts can only be properly challenged with sounder facts, not with appeals to authority. Cheers.

        Like

      • What’s more, is that there is a general recognition nowadays that no autistic person has ALL the characteristics associated with the syndrome. I should make clear that I do not mean the rather silly lists compiled in DSMs and “triads of impairments”, but rather the fuller list from Wing 1976 and later sources at page 226-8 of Chapter 7 of Experts Catastrophe. It would follow from that that there is no “full autism” anyway. And some autistics are determinedly non-social, some express their autisticness by being indiscriminately social, so there’s no “full” there.

        Like

      • After my years researching this subject, I concluded the essence of Hans Asperger’s research hasn’t been properly understood. One very good point Steve Silverman did make was to observe Asperger approached his subject matter very differently. Whereas other researchers got bogged down by definition and interpretation of symptoms, Asperger was interested in the bigger picture.
        “Our path comes from intuition. By attempting to describe the principle of development of a personality we hope to discover the traits that underlie the organization of a particular personality.” (Hans Asperger).
        Where I do part company from Steve Silberman is in the area of autism traits as opposed to actual pathology. Here are some direct quotes where Asperger comments on autism traits. I took the trouble to research patient anamneses in the USSR and it would seem similar, neurotic family traits are integral to manifestation of the full pathology in one individual.
        “The father is a quiet, reserved person who reluctantly discloses his inner world.” (Asperger)
        “When mother and son go to the clinic together for class, the mother wanders around as if not noticing the world around her, crossing her arms behind her back.” Asperger.
        Above, the son is the patient.
        Here is the difference. At some specific point, a particular combination of autism characteristics will swing towards full pathology. Whereas family members may remain odd-balls and semi-recluses, the patient manifests a whole pattern of serious, pathological symptoms (not unlike Schizophrenia).
        These symptoms were described by Asperger and I concluded the big mistake made in modern times is to lose sight of the inter-dependence of every, core symptom. All the main symptoms create a kind of chain reaction. This condition is serious enough to be clearly evident to teachers, doctors, parents and siblings. That is, so far as impact is concerned.
        For me, the most important factor to focus on would be centred around thought processes. Asperger children will inevitably experience major learning delay in any group based class environment.
        Finally, Asperger’s autism pathology exists as a concrete, neurological deviation. It can be successfully diagnosed. It’s not a very defined diagnosis as Asperger included one case of encephalitis in his paper. Again, the focus is on the thought processes and testing as opposed to endlessly classifying behavioural abnormality. The objective is to encourage and support a more positive outcome to the condition.

        Like

      • “At some specific point, a particular combination of autism characteristics will swing towards full pathology.”

        I see some problems with that formulation. Firstly the concept of pathology. It lacks any adequate scientific definition. It is just a personal judgement of “something wrong” or “something problematic”, in a context that “wrong” and “problematic” are not scientifically meaningful terms.

        Secondly, the notion of some “specific point” is again lacking in scientific definition. There is again just a personal judgment of whether or not that point is passed by a particular individual.

        And furthermore there is an underlying misunderstanding, the false notion that autism = “something gone wrong in the brain”. In reality, humans have many innate characteristics, which vary in their advantageousness/disadvantageousness. But that dis/advantageous.is not some constant, but depends on the environment. For instance being a quiet thoughtful person may make you a superior therapist but get you oppressed if you instead had to live in a football hooliganny culture. And it is precisely because of that variability of usefulness that populations have that variability of characteristics and that they get subject to the suppressive antiinnatia factors which cause the autistic syndrome.

        At some point — but only at some point IN THE CONTEXT OF a specified environment — the particular level of antiinnatia causes a person’s set of expressed innatons to be disadvantageous rather than advantageous. But this boundary between disadv and adv is NOT a characteristic of the brain, but only of the relationship of the person to his specific environment at that moment. (Meanwhile the solidly-confirmed antiinnatia theory is fully explained in Chapter 7 of the Experts Catastrophe book linked elsewhere on this page.) Cheers.

        Like

      • Asperger’s approach as Steve Silberman noted was less scientific than his fellow researchers. As, for example, S Munhin. Asperger was more into detail and open-minded observation. There was no “Asperger Syndrome” but just a selection of unteachable children with contradictory characteristics. Mostly, I’m confident I can detect clear cases of the Asperger pathology. It’s far less common than we’ve been told over the decades. Contrary to what Lorna Wing wrote, Schizoid Disorder and Asperger psychopathy appear to be one and the same. Patients seem identical.
        Really we need at least a broad but accurate diagnosis which I feel Asperger already provided. After that preliminary step, the next stage is intellectual testing along non-standard lines. That was the core of Asperger’s method. I use this method too but as an aside I tend to be critical of neurodiversity movements. This latter I feel emphasises socially engineered imput that sidelines those who may be unable to contribute.

        Like

      • Terminology sometimes changes for good reasons (though often for bad reasons instead).
        The “Journal of Autism and Developmental Disorders” was originally titled Journal of Autism and Childhood Schizophrenia, and the Autism Research Institute was called the Institute for Child Behavior Research until sometime between 1985 and 1993. This latter fact undermines notions that the ARI’s earlier case data might have been biased by presumptions about what is allowed to be counted as “autism”.

        Like

      • I think the term “autism” can be troublesome to people who may view the term as very low functioning. I know an autistic female who has a mental age of maybe 14 but she’s about 50. For others, “autism” may be withdrawel and no desire to communicate. Or likewise, some desire to communicate but totally unable to do so. The old term Schizoid Disorder seems less controversial since people with Schizoid pathology may be articulate but very withdrawn and cut-off. I think “autism” has various angles but I fear we use the term too lightly. It’s complex. I had a friend who was highly intellectual but abnormally childish. Very uneven development.

        Like

    • Second point is Steve’s idea of an autistic community is admirable, but not practical. What I noticed over the last few years was the dominant voices and views on Asperger forums are reflected by those with the best social skills. That left the more disadvantaged members marginalised. Trying to represent people who are by nature withdrawn and disconnected can’t be done by social means. This means that well-meaning psychologists such as Steve Silberman by default rise in the ranks as spokesmen for autistic people. Lecture halls pack full of people who are more than happy to buy into the idea Asperger’s is just a geek personality type and the typical “aspie” somehow must work as a programmer (with family and status). Real feedback from those of us who experienced Kanner autism or Asperger pathology will naturally be ignored. What’s needed I think is to churn out hard facts and work with more dedicated professionals in the field.

      Liked by 2 people

      • Indeed that is exactly the problem. But quite what practical solution there is I am not sure, beyond trying to get that message out that it is impossible for the more articulate to be valid spokesmen for the non-verbal. But we face an uphill struggle to compete with the considerable energy and conviction of the Neurodiversity extremists.

        Liked by 1 person

  5. Pingback: Six Things to Love About “Autism Uncensored” | Cortical Chauvinism·

  6. That’s an excellent review of Silbermann’s abysmal book by the way. (At the time of posting I was deeply entunnelled with other grimmer problems hence maybe didn’t read it.) His non-discussion of the increase was just to quote Saint Lorna saying there was no increase, and just leaving it at that (with imputations of scare-story conspiracy-theory mentality among the contrary thinkers).

    Like

    • Increase of autism spectrum symptoms I feel is linked to children heavily using internet. That is games and chat. I suspect many times younger people were diagnosed with Asperger”s but very extensive computer use was a factor. I was some years on Asperger support forums. I got the impression most members were more similar to Hikhikomori. That is the Japanese internet phenomenon where people develop withdrawel. I noticed once Tony Atwood made an association. I don’t think the syndrome Asperger and Kanner described is any more widespread but I.T. seems to create difficulties. In Japan psychologists are apparently more prepared to detect Hikhikomori. They became very aware of it.

      Like

      • The increase of autism was well underway long before the internet let alone children using it (and ditto phones). This was explained in Chapter 3 of Experts Catastrophe which is essential reading for anyone who wants to have any understanding of the increase.

        It is very likely that more recent factors (more time spent staring at screens rather than live interaction, and lack of proper upbringing due to the “liberation” of women from being proper mothers, and further reduced social interaction due to the worst invention in history namely cars) will have caused some delay in social skills, which could easily be mistaken for mild autism. But you would not therefrom also see certain other (non-non-learned) features of the syndrome such as flapping and posturing, spinning without dizziness, odd posture (see Table 2 on pages 226-8 of Chapter 7).

        Like

  7. Here is my personal experience: Just as Asperger clearly stated with regard to his patients, I was unable to learn anything in normal school. Maths was especially a problem or tests involving problem solving. I could, however, read very well and tended to do this alone.
    I had – and still have – visible motor awkwardness, slowness and not recognising faces. I had sensitivity to fabrics, mostly coarse trousers. Classes had little impact as my concentration stayed within so I’d be very disconnected from the environment.
    There was no Asperger Syndrome or Childhood, Kanner Autism back then. Therefore, I was sent to doctors for blood tests. Nothing physically was found. Very interesingly, I discovered recently Grunya Suhareva’s child patients suffered awful nightmares the same as I did. As well as overall “slowness” which was never mentioned in western diagnostics.
    I also suffered chronic obsessive ritualisation, again just as Suhareva noticed in her patients. This is weird to describe but items had to be squared or movements repeated. And at the same time there were obsessive interests.
    All of this disrupted education and, worst of all, at that time children such as myself would be called “slow”.
    In later life, the pattern was repeated which led to a breakdown in the 1980s. I was eventually referred to a female psychiatrist who was quite pleasant. After that, they tried various anti-depressants and audio cassettes. However, at that time I was a poor communicator and struggled to describe what was experienced.
    Today an awful lot has changed. The challenges are still severe but Asperger’s research helped me enormously. I also reacted very positively when I cared for a rescue dog – a beautiful German Shepherd I bonded to till he died three years ago.
    Going by my own background experience, I could match Asperger’s theory to fact. His insight for detail I found astounding compared to, say, Kagan, Munhin or Wing.
    I am aware my own experiences don’t compare with those who require 24 hour care and obviously I count my blessings I have adequate reasoning skills and can, at this time, defend my own interests. However, much of it was a nightmare. One thing I notice about the Autism Movement is when they use great scientists such as Einstein as examples of successful autists, nobody ever noticed the school background. Einstein was a fairly decent student who mastered Greek quite easily in class. He never swallowed paper and licked desks as Asperger’s children were described as doing. True, Fritz, on leaving Asperger’s clinic became a highly successful astronomer. We don’t know how others went on as adults.

    Like

    • Einstein may have mastered Greek (though how well is “mastered”?) but he didn’t even speak till he was four years old. Curiously exactly the same applied to myself and it led my parents to assume I was the idiot of the family. Then at age four I said my first words: “If you step back now it will go all over.” – after putting a pot of pee behind my mother. You see there (a) my (bad?) sense of humour already, and (b) more notably already my lifelong preoccupation with CAUSALITY (or causation or whatever). (With the wisdom of years it probably wasn’t my wisest wheeze though!)

      Like

  8. Today I bumped into a woman who was parking up her car. This hasn’t happened to me for some weeks, but I took a good look at her and was convinced she was someone I knew well. Therefore, I asked her if she was now feeling better after her illness. That didn’t go down too well. When she looked puzzled and informed she hadn’t been ill and where did I know her from, I had to bluff my way out.
    I have an oldish essay by a USSR psychiatrist who refers to Facial Agnosia amongst the child patients. It was mentioned the patients struggled to recognise their therapists outside of the surgery. These patients were diagnosed with Kanner Autism and it was noted in the paper that most of them showed clear symptoms of Facial Agnosia.
    For some time now, I started to consider that this symptom can be very useful for detecting Asperger Pathology. Why? Well, the answer makes good sense. Facial blindness takes place because the person concerned has extreme abstract thought processing as well as a disconnection at an emotional, neurological level. So, the brain fails to register human beings instinctively but rather objectifies them from a distance. However, such perception without emotional connection creates difficulties. Asperger called this “periphery perception”. Although Asperger never referred to Facial Agnosia with reference to his patients, I notice he did pick up on the way some of them perceived others as objects.
    Personally I struggled with face blindness since childhood and it made any employment difficult. Here’s what’s interesting. The clinical disorder is called Prosopagnosia and is somewhat different to autism related face blindness. With Prosopagnosia, the patient literally cannot identify photos of faces or distinguish faces. However, with Asperger Disorder, you can recognise celebrities from photos but sometimes faces of people you know don’t register outside of context. That then fits with the other major symptoms Asperger described such as emotional blockade, weak facial mimicry and limited interpretation of non-verbal communication. All the symptoms tend to reflect the fundamental principle which is why I concluded disecting symptoms disables diagnosis. It’s even a bit like oscillation where all coincidental factors require one fundamental frequency.

    Like

  9. There are some good points Steve Silberman made. Autistic people really do need representation. What offended a lot of people, however, was Steve’s assumption that Autism Diversity groups will genuinely be speaking in the same language as those who are far more limited. Yes, I agree with Steve that so many autistic people are often gifted. They may be ill-equipped to hold down the most menial job but have perfect pitch and musical ability. As I stated though, such people communicate very poorly in a social hierarchy. They are often third tier bystanders on the ASD social media forums where prominent members assume the role of spokesman. Myself I battled higher functioning autism all my life and am currently articulate and well-read. Yet, in real life nobody will normally offer me even unskilled work as I tend to move very slowly and don’t communicate well face to face. Mostly, on Asperger forums in the past I was only understood by one or two members. Likewise, I’ve found my views on autism are often not what people want to hear. I could write stuff about the new diversity and autism friendly employment policy but really that would be a populist approach. Absolutely, Steve has scored a few solid points but in my view we need to “listen” to autistic people and understand their actual situation. We need specially trained teachers and fast diagnostic processing. We may also need to apply the term “autism” more carefully. In Russia there is oligophrenia which is used for mental delay and schizoid disorder is used for withdrawel.

    Like

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

This site uses Akismet to reduce spam. Learn how your comment data is processed.