Dachel Media Update: "Neurotribes" the Unicorn
By Anne Dachel
Read Anne's commentary and view the links after the jump. The Dachel Media Update is sponsored by Lee Silsby Compounding Pharmacy and OurKidsASD, an online supplement retailer for patients with special needs.
Aug 17, 2015, New York Times: 'NeuroTribes,' by Steve Silberman
Aug 17, 2015, NPR Boston: Autism, Then And Now: Sweeping New Book Puts ‘Epidemic’ In Perspective
July 20, 2015, Washington Post: How autistic adults banded together to start a movement
New York Times: . . .The autism pandemic, in other words, is an optical illusion, one brought about by an original sin of diagnostic parsimony. The implications here are staggering: Had the definition included Asperger’s original, expansive vision, it’s quite possible we wouldn’t have been hunting for environmental causes or pointing our fingers at anxious parents.
. . . On the vexed subject of vaccinations, Silberman is poker-faced for the first 75 pages or so — a true feat, given that Andrew Wakefield’s incendiary study positing a link between the MMR vaccine and autism, published in Britain in 1998, was scantily substantiated from the start, a poisonous red herring that spooked a generation of parents. It contaminates the public consciousness to this day, though it has been debunked many times over and retracted by The Lancet. Eventually, however, Silberman firmly weighs in, eviscerating the paper and surveying its damage on the autism movement. “The most insidious effect,” he writes, was “diverting it from its original mission of demanding services and accommodations in education into a rancorous debate about vaccines.”
NPR Boston: . . .And now, Silberman has written “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” a history of society’s changing attitudes toward autism, as seen through the eyes of parents, clinicians and autistic people themselves. It’s due out Aug. 25 and — if my appreciation for its breadth, depth and power is any indication — it’s likely to make a big splash. (Also provoke some controversy, given its unflinching takes on some of autism’s more contentious issues, from possible causes to biomedical “cures”.)
I asked Silberman to answer what seem to me the most burning questions about autism: Is prevalence really rising? How to explain kids who lose their diagnosis? What does the research promise? Our conversation, lightly edited, beginning with more about “The Geek Syndrome”:
SS: The article came out, it was very well received, and I got tons of email about it — and then I kept getting email about it for 10 years, which is very unusual. But here’s the thing: When I wrote the article, most of the families I talked to were keenly interested in what had caused their child’s autism. Some believed that it was vaccines, some believed that it was environmental contaminants, some thought it was genetics.
But by the time a decade had gone by, what they were worried about was not what had caused their child’s autism; what they were worried about was the shocking lack of services for autistic teenagers and adults — like transitional services to help them go from school to the workplace, services to help them learn how to live independently in the community, and so on.
. . . Might some of those things contribute to autism? Sure. But what we have to remember is that there have been, in recent years, at least three big studies that look at the crucial question: Is autism actually increasing in the population or is it just that we’re getting better at diagnosing it, and becoming more aware of it as a society, and learning how to spot it in early childhood?
And the conclusion of all three studies — including one in Sweden in 2015 that involved over 1 million children, including 19,000 twin pairs, and one in England by a researcher named Terry Brugha — was that the rates of autism have not really been going up. What has been going up is the rates of diagnosis. So it’s an epidemic of recognition, really.
. . . I want my book to remind people that the original goal of the autism parents’ movement was not to cure their children or discover the cause of autism, it was to change the world so that it was a more comfortable place for autistic people and their families.
Washington Post: “The new autistic person is being born in media, and it’s someone who is very empowered, even if they need a keyboard to speak,” said Steve Silberman, a journalist and author of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” a book coming out next month.
Some longtime autism activists are wary of the neurodiversity movement, which they say promotes the idea that autistic people are not sick but simply quirky and geeky. Autism, which affects 1 in 68 American children, extends along a very broad spectrum, with the most severe forms leaving people unable to speak and in need of assistance with everyday functions.
Everyone in the media will eat this up.....hey, there's no autism epidemic....therefore, more and more vaccines haven't done a thing.
A whistleblower at the CDC is irrelevant. Autism has always been here. It's Asperger's that created the "epidemic."
Steve Silberman has been saying this for a while. Last month I wrote about Silberman and Emily Willingham:
Back to my one question: WHERE ARE THE ADULTS IN THEIR 40's, 60's, 80's WHO DISPLAY THE SAME SIGNS OF CLASSIC AUTISM THAT SO MANY OF OUR CHILDREN DO---ESPECIALLY ADULTS WHOSE HISTORY INCLUDES BEING BORN HEALTHY AND HAVING A NORMAL DEVELOPMENT AND THEN A SUDDEN LOSS OF LEARNED SKILLS AND REGRESSION INTO AUTISM?
I don’t want to read about "an autistic woman named Donna Williams who had just written a memoir." I want to read about autistic adults who are nonverbal, prone to wandering, and a danger to themselves and to others. I want Silberman to find the autistic adults with bowel disease and seizures, like so many of our kids have. Autism isn't just part of being human. It's a serious, limiting disability that the U.S. government has long recognized as being linked to vaccines while publicly denying any link.
Silberman's presentation of autism as neurodiversity can't explain why vast numbers of autism parents are desperate about their kids' future after they're gone. So far, there is nothing for a significant disabled population that's supposedly always been here.
Unless and until people like Steve Silberman can show us the one in 68 autistic adults out there, his book is fantasy fiction.
The Dachel Media Update is sponsored by Lee Silsby Compounding Pharmacy and OurKidsASD. Lee Silsby is one of the most respected compounding pharmacies in the country and is committed to serving the needs of the Autism community. OurkidsASD is an online retailer for nutritional supplements for patients with special needs. OurkidsASD carries thousands of products from more than 60 brands and offers free ground shipping on all orders.
Anne Dachel is Media Editor for Age of Autism and author of The Big Autism Cover-Up: How and Why the Media Is Lying to the American Public, which is on sale now from Skyhorse Publishing.
Hey friends, This is off topic, but I would like to communicate it so that you can all get a chuckle out of it. With regards to the rather odd- shall we say skewed statistical data from Georgia/Florida, where 9 or more alternative-style doctors have died, been murdered, vanished and in general- departed the earth - all within about one month(one of them being one of our greatest of autism doctors, Jeff Bradstreet), someone has prefaced his article thus: " You can call me a conspiracy theorist- If I can call you a coincidence theorist".
All of the disappeared doctors seem to have one thing in common- a new treatment for autism, Chronic fatigue, and cancer called GcMAF. If anyone here has not checked that out yet- please do so. I would say it is a hot topic to watch.
Posted by: Cherry Misra | August 22, 2015 at 02:02 PM
Why is Silberman concerned about adults with autism? After all, he was the one who claimed this was a "geek syndrome" due to assortative mating. So aren't all of the adults with autism drawing 6-figure salaries in Silicon Valley?
What? You say that their parents are complaining about the lack of adult services? Why would that be? If they are all making big money in geekdom, surely they don't need "services", right?
And, as Anne likes to say, if they really do need services, then there should be plenty of spots at the same service providers who have been around for 50 years! Oh, there are NOT spots? You say the service providers of 50 years ago are having to adapt to a completely different type of clientele?
Mr. Silberman, methinks you did not do your homework very well.
Posted by: Vicki Hill | August 18, 2015 at 07:34 PM
Well, bless Anne Dachel, she is always pointing out and fighting the big lies about Autism. I should have seen this coming, being raised by a really smart lawyer. But the nose on the big lie is growing mighty huge now. To quote the man who raised me: "It's unmitigated horseshit!"
Posted by: Denise Anderstrom Douglass | August 18, 2015 at 05:37 PM
It's no wonder that 50 years ago people couldn't diagnose the 1 in 68 cases of autism which surely existed just like they do today. 50 years ago was the stone age. Human speech was just barely evolving, so if someone couldn't talk they didn't really stand out. Remember how we used to live in caves and subsist on wild berries and squirrels from the forrest?
What, you say that 50 years ago there were universities, scientific research, journals, TV, radio, space exploration, physicians, psychiatrists, hospitals, libraries, education specialists, and more? Get outta here! Really??
Posted by: Twyla | August 18, 2015 at 11:59 AM
Yes, people didn't used to notice when their children couldn't talk, or fell into diabetic comas, or couldn't breath due to asthma, or developed hives and collapsed due to food allergies. Thank goodness we are all so much better educated today than 50 years ago.
I remember the little boy who lay on the floor gazing at the ceiling fan during class. Nobody noticed. He went on to graduate and get a job where he spent the day examining the shadows of branches on the floor as they waved in the wind, and playing with a small fan. When asked to sit at his desk he would shriek. His diarrhea and enuresis were never treated so he was not toilet trained, but luckily nobody noticed due to less awareness. Maybe heightened awareness isn't such a good thing after all, as he might not have kept his job if his behaviors and lack of productive work had been noticed.
And yes I know there are people with autism who can talk, write, and work productively. But some can't, especially without early intervention and medical treatment.
Posted by: Twyla | August 18, 2015 at 11:17 AM
Autism is not really increasing? I have a great suggestion then for clinicians and public health figures: Let’s solve the autism problem by going back to ignoring it.
Seriously, in the past we were not aware of it, but those autistic children seem to have fared so well that even now, as adults, we can’t find them. And now that we’ve gotten so good at spotting them what do we have? Well, it’s one sad story after another about how autistic kids are suffering, and their parents are struggling to care for them. In the news, we hear constantly how autistic children are getting kicked off airplanes for being unruly, how they are being bullied by their peers and the school system, and even how they are wandering and drowning. Communities are now scrambling to provide services for these kids as they age out of school, and, all told, autism is now costing the nation hundred of billions annually.
So again public health officials and clinicians, let’s solve this mess by going back to ignoring autistic children, and stop diagnosing it! It’s for their own good.
Posted by: Greg | August 18, 2015 at 08:48 AM
Fantasy fiction is the correct way to describe the new book Neurotribes. The idea of neurodiversity is not based on any scientific understanding of brain function.
Failure to learn language is the most serious aspect of autism diagnosed in childhood. Sadly, it is as much the result of brain damage as loss of speech (aphasia) in adulthood. That failure to learn to speak derives from a deficiency of social drive started as a euphemistic way to avoid talking about brain damage.
That autism can go unrecognized until adulthood is silly. Silberberg tries to compare the observations of Asperger with those of Kanner. My 52-year-old son was late learning to speak. When Lorna Wing's translation of Asperger's paper appeared in 1980, my son was thought maybe to have Asperger syndrome. Szatmari later pointed out the difference between Asperger syndrome and high-functioning-autism (HFA). HFA better describes my son. He remains autistic. I doubt the neurodiverse would accept him into their social circles.
My son's autism was not caused by vaccine injury. Concern over the increased vaccine schedule since the mid 1980s is reasonable, but there are other causes of autism. Evidence in the medical literature has been available for at least 50 years of how the brain is damaged by oxygen insufficiency at birth. This was the cause of my son's autism.
Fantasies about neurodiverse social impairments will persist until brain damage underlying developmental language disorder in autism is fully understood.
Posted by: Patience (Eileen Nicole) Simon | August 18, 2015 at 08:39 AM
NYT .. "The autism pandemic, in other words, is an optical illusion, one brought about by an original sin of diagnostic parsimony."
Who knew .. tens of thousands of parents were guilty of committing "diagnostic parsimony" .. for reporting their child "regressing" in the hours, days and months following vaccinations .. all suffering an "optical illusion" that began occurring with extraordinary frequency around 2000 ..
Some credible sources estimate there are presently between 300,000 and 400,000 under the age of twenty-one .. and .. Dr Wakefield has observed today's rate of "diagnostic parsimony" is creating 159,000 each year the "cause" or "cure" not found.
Silberman .. described as a "journalist" .. an odd profession to think himself an "expert" on anything .. let alone a complex subject like autism .. has written “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity," .. which appears more fiction than non-fiction .. as evidenced by this quote:
"I want my book to remind people that the original goal of the autism parents’ movement was not to cure their children or discover the cause of autism, it was to change the world so that it was a more comfortable place for autistic people and their families".
Who knew .. the "original goal" of those tens of thousands who reported their child's "regression" .. was "not to cure their children or discover the cause of autism" .. it was merely to "change the world" .. so they could be in a more "comfortable place"?
Thanks to the Silverman's of the world .. who viciously resent pursuing the "cause" .. as well as a "cure" .. the parents who love and care for their child 24 hours a day .. seven days a week .. are justifiably terrified of what will happen to their child when they are no longer able to do so?
One thing we know for certain .. Silberman's book will only further serve the vested interests of those who absolutely refuse to conduct that long over-due .. common sense study .. of "vaccinated v. unvaccinated" populations.
After all .. THAT STUDY may actually identify the "cause" of "regression" .. and .. Silberman really has no interest in .. God forbid .. doing that.
Posted by: Bob Moffitt | August 18, 2015 at 06:36 AM
Thanks Sophie for your concise list of quotes. Let me add "attention deficit disorder", another gigantic category that chronically disabled grade school kids, and was virtually nonexistent before the onslaught of additional vaccines rocketing up since the late 1980's.
Oh, I forgot! These millions of kids always existed, and parents/teachers just never noticed. But, the Pharmaceutical Industry heroically created and dispensed billions of doses of psychotropic drugs save the day!
Posted by: autism uncle | August 18, 2015 at 06:22 AM
We have been getting this same load of codswallop since 1998: early practitioners were Wing and Potter, Fombonne. It is being marketed as startling news and is actually the same old pack of lies. Back in 2000 the UK Department of Health had so linked the issue of rising autism to vaccines that they failed to notice that the article by Brent Taylor the sent me allegedly refuting Wakefield actually showed that autism had risen 24 times between the birth cohorts of of 1979 and 1992. I guess Silbermann is the new man because they don't dare show Fombonne's face.
Posted by: John Stone | August 18, 2015 at 06:20 AM
"The autism pandemic, in other words, is an optical illusion, one brought about by an original sin of diagnostic parsimony." (The New York Times)
Sounds almost poetic doesn't it?
Years ago, an educational child psychologist, employed at great public expense, to help with local ADHD school pupils, told me there would be plenty of evidence to place EVERYONE on the ASD spectrum. We ALL have some autistic traits. I certainly have. If the diagnostic criterion is extended to every 'geeky' adult, including those computer 'whizz kids', who invent games and applications, but often struggle socially, then certainly the ASD stats could be increased dramatically.
But wait a minute. What comes first, the chicken or the egg? UK psychologists are becoming increasingly concerned, childrens' social development is becoming stunted by too much computer interaction. Child obesity is also increasing resulting from the lack of exercise, and NO ONE is denying THAT.
My grandson is probably one of those 'savants' people like Steve Silberman like to promote as just another form of human 'diversity'. Unfortunately, my grandson, (a Royal Free 'Wakefield Babe' diagnosed with the neuro/ bowel syndrome, but NOT one of the Lancet 12), is too unwell with bowel disease to hold down a job and will need to be publicly supported for the rest of his life.
For the benefit of Silberman and Willingham, and THOSE trolls and others who monitor this site, I repeat Anne's important comment (above):-
"I want Silberman to find the autistic adults with bowel disease and seizures, like so many of our kids have. Autism isn't just part of being human. It's a serious, limiting disability that the U.S. government has long recognized as being linked to vaccines while publicly denying any link."
Posted by: Jenny Allan | August 18, 2015 at 05:43 AM
Oh Gawd, there will be massive government sanctioned screenings and PR announcements for this 'groundbreaking idea.' No one would argue that services for adults are sorely needed now, but the only staggering thing here is the idea of trying to hide massive damage to our population in a game of sleight of hand. Sorry, but any way you slice it there is more autism. Boys are likely to be 1 in 25-30 at this point.
Posted by: @Greyone | August 18, 2015 at 05:03 AM
This top secret meeting was held to discuss a study done by Dr. Thomas Verstraeten and his co-workers using Vaccine Safety Datalink data as a project collaboration between the CDC's National Immunization Program (NIP) and four HMOs. The study examined the records of 110,000 children. Within the limits of the data, they did a very through study and found the following:
1. Exposure to thimerosal-containing vaccines at one month was associated significantly with the misery and unhappiness disorder that was dose related. That is, the higher the child's exposure to thimerosal the higher the incidence of the disorder. This disorder is characterized by a baby that cries uncontrollably and is fretful more so than that see in normal babies.
2. Found a nearly significant increased risk of ADD with 12.5ug exposure at one month.
3. With exposure at 3 months, they found an increasing risk of neurodevelopmental disorders with increasing exposure to thimerosal. This was statistically significant. This included speech disorders.
Posted by: Sophie Scholl | August 18, 2015 at 04:50 AM
"There is a great deal of evidence to prove that immunisation of children does more harm than good." Dr. J. Anthony Morris (formerly Chief Vaccine Control Officer at the US Food and Drug Admin.)
"There is insufficient evidence to support routine vaccination of healthy persons of any age." Paul Frame, M.D., Journal of Family Practice
"Official data shows that large scale vaccination has failed to obtain any significant improvement of the diseases against which they were supposed to provide protection" Dr. Sabin, developer of Polio vaccine.
"My data proves that the studies used to support immunisation are so flawed that it is impossible to say if immunisation provides a net benefit to anyone or to society in general. This question can only be determined by proper studies which have never been performed. The flaw of previous studies is that there was no long term follow up and chronic toxicity was not looked at. The American Society of Microbiology has promoted my research...and thus acknowledges the need for proper studies." --John B. Classen, M.D., M.B.A.
"These data show that DPT vaccination may be a generally unrecognized major cause of sudden infant and early childhood death, and that the risks of immunisation may outweigh its potential benefits. A need for re-evaluation and possible modification of current vaccination procedures is indicated by this study." --William C. Torch, M.D., Director of Child Neurology, Department of Paediatrics, University of Nevada School of Medicine
"Delay of DPT immunisation until 2 years of age in Japan has resulted in a dramatic decline in adverse side effects. In the period of 1970-1974, when DPT vaccination was begun at 3 to 5 months of age, the Japanese national compensation system paid out claims for 57 permanent severe damage vaccine cases, and 37 deaths. During the ensuing six year period 1975-1980, when DPT injections were delayed to 24 months of age, severe reactions from the vaccine were reduced to a total of eight with three deaths. This represents an 85 to 90 percent reduction in severe cases of damage and death." --Raymond Obomsawin, M.D.
In the May 24, 1996, New Zealand Medical Journal, J. Barthelow Classen, MD, a former researcher at the U.S. National Institutes of Health (NIH) and the founder and CEO of Classen Immunotherapies in Baltimore, reported that juvenile diabetes increased 60 per cent following a massive hepatitis B vaccination campaign for babies six weeks or older in New Zealand from 1988 to 1991. In the October 22, 1997, Infectious Diseases in Clinical Practice, Classen showed that Finland's incidence of diabetes increased 147 per cent in children under five after three new vaccines were introduced in the 1970s, and that diabetes increased 40 per cent in children aged 5 to 9 after the addition of the MMR and Hib vaccines in the 1980s. He concluded that "the rise in IDDM [juvenile onset diabetes] in the different age groups correlated with the number of vaccines given."
“Yet some parents and doctors, concerned about the future, are looking beyond the present. ‘What we forget is that … up until the last 100 years, humans have lived in relative harmony with microbes. Yes, there have been epidemic infectious diseases in history, but they have always resolved themselves,’ said Richard Moscowitz, MD. ‘I don't think there is any real appreciation for what we may be doing by using so many vaccines to try to eradicate so many organisms.’ If we stay the present course, will mankind be free from infectious disease but crippled by chronic disease? Will eradication of feared diseases, such as AIDS, through mass vaccination be one of man's greatest triumphs or will we live in fear of deadly mutations of microbes that have outsmarted man's attempt to eradicate them? We may look back at the crossroads we are at today and wish we had decided to make peace with nature instead of trying to dominate it.” Barbara Loe Fisher, co-founder and president of the National Vaccine Information Center
"Measles, mumps, rubella, hepatitis B, and the whole panoply of childhood diseases are a far less serious threat than having a large fraction (say 10%) of a generation afflicted with learning disability and/or uncontrollable aggressive behaviour because of an impassioned crusade for universal vaccination.......Public policy regarding vaccines is fundamentally flawed. It is permeated by conflicts of interest. It is based on poor scientific methodology (including studies that are too small, too short, and too limited in populations represented), which is, moreover, insulated from independent criticism. The evidence is far too poor to warrant overriding the independent judgments of patients, parents, and attending physicians, even if this were ethically or legally acceptable." --Association Of American Physicians & Surgeons
"Probably 20% of American children—one youngster in five--- suffers from ‘development disability’. This is a stupefying figure….We have inflicted it on ourselves … ‘development disabilities’ are nearly always generated by encephalitis. And the primary cause of encephalitis in the USA and other industrialised countries is the childhood vaccination program. To be specific, a large proportion of the millions of US children and adults suffering from autism, seizures, mental retardation, hyperactivity, dyslexia, and other shoots or branches of the hydraheaded entity called ‘development disabilities’, owe their disorders to one or another of the vaccines against childhood diseases."—Harris L. Coulter, Ph.D.
Posted by: Sophie Scholl | August 18, 2015 at 04:10 AM
Diet, injections, and injunctions will combine, from a very early age, to produce the sort of character and the sort of beliefs that the authorities consider desirable, and any serious criticism of the powers that be will become psychologically impossible.
Even if all are miserable, all will believe themselves happy, because the government will tell them that they are so.
Russell, Bertrand. The Impact of Science on Society. 1951.
Posted by: Sophie Scholl | August 18, 2015 at 03:49 AM
I dont know about the rest of you lunatics here on AoA .
You are all delusional , conspiratorial or just whacko's .
Steve Silberman is absolutely right , the Autism Pandemic is an illusion and is just down to better diagnosis .
and likewise Steve , you genius of a man , the same thing is true for the Obesity epidemic , it has always been with us , and is only now been idenitified for the first time because of the brilliance of science .
For millenia , scientists were too dumb to have observed the Obesity epidemic , and lets throw in the diabetes epidemic also (the UK just announced diabetes type 2 up 60% in just a decade) .
All of this down to better diagnosis . Nothing has changed .
Posted by: Sophie Scholl | August 18, 2015 at 03:30 AM
I grew up in a small town, whose gossip surveillance would put the NSA to shame. There was no autism.
Posted by: Greyone | August 17, 2015 at 10:31 PM