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.