Autism as Anthropology and the Concept of the "Neuro Tribe"
Warning! The Rest of Her Life Is Closer than It Appears!

Autism Speaks vs. Steve Silberman

Giant blue eyeBy Anne Dachel

Everything about autism is one crazy bundle of conflicting claims.  No one in mainstream medicine or at our federal health agencies takes autism seriously.  It's constant conjecture and indifference.  The current rates of one in every 68 children in the U.S., one in every 42 boys are a meaningless statistics.  It could soar to one in 10 and reporters would dutifully quote officials telling us, "No one knows if this increase in the rate means more children actually have the disorder." 

No health official has ever publicly called autism "a crisis."  EVER.  "Serious public health concern" is the strongest language any of them have used when speaking about autism.

Too bad if your healthy, normally developing child suddenly lost learned skills, stopped talking and is now a 12 year old in diapers who can wander away at any moment.   No one cares.

The current rate is based on studies of children born in 2002.  They're teenagers now.  Autism is not a priority at the Centers for Disease Control and Preventions.  The disturbing truth that autism overwhelming affects children is never relevant. 

Everyone seems happy to leave autism as a perpetual mystery.

We have a whole month every April when we celebrate autism by lighting the world up in blue.  We hold walks and rallies and see lots of smiling, typical-looking kids on playground equipment or talking with speech therapists and they're supposed to be the face of autism.  WE CALL FOR AWARENESS.  This is hardly the image of an epidemic with no known cause, prevention or cure. 

Lighting up Niagara Falls, the Empire State Building and monuments around the world in blue and calling for awareness is the extent of our response to autism. 

Why awareness?

There is no urgency.  Autism is nothing we worry about.  When there was a typical measles outbreak this year, it suddenly became a national health emergency.  There were calls to end exemptions to vaccines.   Autism has never been addressed like measles was. 

So, what are we doing about autism?  Beyond seeking awareness, what should our goals be?

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

We have Autism Speaks telling us we need awareness and services for a genetic disorder.  Neither crowd can explain what's happening to our children.  The failure to be alarmed over the jaw-dropping rate of children with autism that can't be duplicated when looking at middle aged and elderly Americans should have the attention of Congress, but it doesn't.

The cost of autism will bury state governments left to provide care for all these adults aging out of school.  I've mentioned this in the comment sections of stories for years.  I'm still waiting for someone in the mainstream media to ask why experts don't talk about adults with autism. 

I think the press is sick of reporting on autism.  They can only say "studies show no link" and "better diagnosing" so many times.  THERE IS NOTHING NEW TO SAY.

And now there is dissension in ranks.

This recent exchange is a perfect example of the malaise over autism.

On Aug 24, 2015, the Los Angeles Times published the story,  Autism Speaks needs to do a lot more listening, by Steve Silberman.

For a couple of decades now, Americans have been engaged in a wide-ranging and often heated conversation about autism. About what causes it, whether there's more of it than there used to be, and whether it can be cured. About whether autism is a disorder, a disability or a different way of being. About whether the condition is overdiagnosed or underdiagnosed, and which early interventions are most helpful for children.

Silberman blasts Autism Speaks for wasting money looking for the genetic cause of autism.  His contention is that autism needs acceptance and accommodation.  It's always been here.  We have autistic adults, we just call them something else.  He slams Autism Speaks for not using the money they raise to actually benefit people with autism. 

Autism Speaks president Liz Feld issued a response to Silberman.

Aug 25, 2015, Autism Speaks: A call for unity

Author Steve Silberman painted a portrait of our organization and mission in the Los Angeles Times that may reflect his point of view but is a disservice to the millions of people who have both supported and relied on Autism Speaks over the last ten years. In fairness to these people, and to the countless volunteers and champions who have worked so hard to improve the lives of those affected by autism, it is important to set the record straight.

Chuck Saftler, an Autism Speaks national board member based in Los Angeles and father of a child with autism, put it well: “Without unity there is no voice. That does not mean that we cannot have a diversity of ideas and voices within the community, all of which are valid and need equal respect. Those who are least severely affected may just need an openness and understanding of the character traits that make them unique. Those who are more impacted by autism, like my son, may need therapies and hopefully a medical breakthrough that will come through scientific funding.  And those who dream of being parents one day deserve to know their children will have the best opportunity to thrive in society without the challenges that are created by autism spectrum disorder.”

For many, autism is a whole-body disorder: One-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 percent wander, and more than 30 percent are non-verbal. Since 2005, the prevalence of autism has doubled, and there are now an estimated 3.5 million people in the United States, and 70 million in the world, living with autism

. . . While the challenges and abilities of those living with autism vary, we know that each year there are 50,000 young adults who, at 22, age out of school-based services. Parents call this “the autism cliff.” There are few job opportunities, transition supports or independent housing options for those who want and need them.

In its defense, Autism Speaks outlined all the projects that they've spearheaded.  Feld claims that they are focused on adult services.  She called for unity.

Since we can't agree on a fundamental understanding of autism, I think real unity is an unrealistic goal. Personally I have a questions for Steve Silberman and Liz Feld. 

You both call for support for young adults with autism aging out of school.  Why is that?  Unless you recognize that autism is an epidemic of recent origin, we have to accept that it's always been around, just not called autism.  So why can't young adults with autism go where autistic adults have always gone?  Surely a country as proactive and compassionate as the United States must have done a lot to provide for the needs of autistic Americans in the days before we found out they had autism.

Liz Feld, why is there this 'autism cliff' after high school? 

Steve Silberman, why haven't we been "helping autistic people to live more independently in their communities, improving access to healthcare, reducing discrimination in employment and housing" before this? 

How could the American people have marginalized and discriminated against this significant population throughout our history?

It seems to be more of the mystery surrounding a condition that no one can fully explain. 
Anne Dachel Book CoverAnne 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.

Comments

Jeannette Bishop

Call for "unity" amongst those who seem to commonly feel a deep-seated need to protect the profit margins of the vaccine industry and any other industry that biologically plausibly might be (but "obviously can't be" and it's likely genetic so we should or we shouldn't spend more billions on that gene hunt?) influencing pre- and post-natal development in an autism-like way?

It might happen I suppose, some sort of "unity" I mean...

...and/or maybe some PTBs are trying to set up their preferred version of an "autism" debate to try to keep people occupied or distracted from causation...

James Lyons-Weiler, phD

What % of the American public must experience regressive autism before "UNITY"? People, the vaccine safety science was FUDGED, it's back to square one. Hep-B vaccine safety sheets list "Autism" as a possible side effect. Get educated about developments since Aug 2014 before bringing forward opinions about vaccine safety. EVERYTHING YOU KNEW ABOUT VACCINE SAFETY RESEARCH is OUTDATED. Anne has done her homework.

KFuller

Call for Unity. Who is she? What's her payroll? It has to be a person, as no one at AS knows what the word means.

Linda1

"Chuck Saftler, an Autism Speaks national board member based in Los Angeles and father of a child with autism, put it well: “Without unity there is no voice. That does not mean that we cannot have a diversity of ideas and voices within the community, all of which are valid and need equal respect."

Does that call for unity, affirmation of validity and equal respect extend to the many parents, scientists, doctors and VICP Special Masters who strongly believe or have ruled that vaccines have caused and continue to cause autism?

Benedetta

Like autism -- the high numbers of people with drug problems - don't seem to bother anyone up in Washington either.

Mitch who has been up in Washington and Hal Rogers has been up in Washignton forever and they run on the promise ever year to get a handle on this War on Drugs.

I have written them.

I think I will order two books from Harris Coulter and give it to them? You all think that would help?

Benedetta

Drug addiction is a sign of mental illness.
Not kids succumb to peer pressure.
No one cares about drug addiction either - except again like all mental illness - it ends up as a law enforcement problem.

The War on Drugs has been fought for -- since the 60s -- that is just about the time the baby boomers after WWII- with heavy dose of DPT shots got up to an age old enough to self medicate.

So for the last couple of weeks the helicopters have been buzzing the fields near me. They do disturb a person's peace, and privacy.

Since the War on Drugs -- seems to me it has only got really, really bad. I think that it seems to me - like-- they are losing the War on Drugs.

Patience (Eileen Nicole) Simon

Steve Silberman claims to have spent the past 15 years researching the history of autism.

Hello??? I have spent the past 50+ years researching the history of autism.

When my son Conrad was diagnosed as autistic, my husband brought me the book by Bernard Rimland from Harvard's Widener Library. In 1967 it was the only book on the subject he could find. I went to the Countway Library at the Harvard Medical School and sitting in the stacks began perusing volumes of the Journal of Nervous and Mental Disease, American Journal of Insanity, and more.

Our pediatrician told me I was not qualified to read medical journals, so in 1969 I applied and was accepted into the Medical Sciences Program at the Boston University School of Medicine. No professors there were doing research on autism, so I worked with professors who were doing research on the brain disorder in schizophrenia.

I will look for Silberman's book in the library. It sounds like he pins a diagnosis of autism on several prominent historical people. This does not sound like a meaningful way to research autism or history.

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

Autism's defining "traits" are all neurological signs. Maturation of the brain as well as injury must be investigated to fully understand autism. I will continue, as I have for the last 40+ years, attempting to contribute to the conversation about autism and its many causes.

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