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The Next Really Big Lie About Autism

Triathletes-battling-serious-waves-by-gasmunky By Anne Dachel
 
In August 2006, I wrote a piece called, The Really Big Lie about Autism. (HERE)  It was about the claim by the medical community, health officials, and a parade of reporters, that the epidemic of kids with autism and related disorders overwhelming our schools, is the result of "greater awareness" and "better diagnosing."
 
Back then I wrote, “I'm constantly pointing out that the explosion in special needs kids in our schools can't be explained away so simply, but no one seems to notice.”
 
I said that we’d seen an exponential increase in autism in the last twenty years from one in 10,000 children to one in every 166 children.  Since my son is part of the first wave, I’ve watched autism go from an unknown disorder to one of the most common disabilities affecting our children.
 
Then in August, 2009, I again wrote on the denial of any increase and I called it, The Really Big Lie about Autism, Thomas Insel Testifies.  (HERE)  Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee (IACC) and the director of the National Institute of Mental Health, had just testified before the Senate Appropriations Subcommittee chaired by U.S. Senator Tom Harkin.   At the time of this meeting, the autism rate had climbed to one in every 150 children, but nevertheless, Insel still wasn’t convinced that the numbers were really going up.  He left it all just a big mystery. 

Insel: ‘We have to remember the difference between prevalence, which can be affected by ascertainment, by changes in diagnosis, and the difference in incidence, which we don't have right now, good evidence that there's a true increase in the incidence...the rate of new cases.’  He added, ‘That's an area that requires more research.’



Then, four months later, in December 2009, the official autism rate jumped to one in every 110 children, one in every 68 boys.  When that happened, Insel was one of the first to admit that the increase in autism was real.  The cause was still a vast mystery, but environmental factors had to be involved for the numbers to continue soar. 

In December, 2009, speaking at MIT, Insel said, "I said before this isn't just genetics...  There have to be environmental factors."
 
By the spring of 2010, Insel was really getting concerned about the impact of autism.  At the National Institutes of Health, he said, "Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen."  In Insel’s own words, “If you look at those numbers, the increase and recognize how many of those kids will become adults, we ...also need to be thinking about how we prepare the nation for a million people who may need significant amounts of services as they are no longer cared for by their parents or as their parents are no longer around."
That’s frightening information.  An unexplained disability is overtaking a generation of children.  So what actions are authorities taking to address this emergency?  What are people like Insel and others saying needs to be done?

NOTHING

We’ve been lost in an autism dream for the last 20 years.  Officials have calmly reassured us that no matter how bad the numbers, don’t worry---nothing’s really different; autism has always been around.

Insel has gone on the record publicly announcing that a disaster is looming on the horizon.  The clock is ticking.  A million needy adults with autism are coming.  (And when everyone starts to demand to know why we’re totally unprepared for one percent of young adults with autism, Thomas Insel will be able to say that he tried to warn us.)

Recently, Katie Wright wrote about two meetings by officials who are supposed to be dealing with autism.  There is no more proof needed to show that the neither the government nor the medical community will ever do anything about the autism epidemic.  What is clear is that they’re paralyzed by autism.

The first was an IACC meeting.  (Remember the IACC was created by Congress to deal with autism.) (HERE)  In summary, the IACC bickers over everything and admits nothing when it comes to autism. 

For example, Dr. Gerald Fischbach of the Simons Institute is a member of the IACC and he’s made a name for himself recently going on the record saying that there’s no possibility of a cure for autism.   See video: HERE And on another panel discussion, Fischbach talked about why he’s sure that vaccines don’t cause autism. See video: (HERE)  He announced, “Mercury has been removed from the vaccines since 1987…and the autism reported prevalence …is on the rise.  I believe the reported prevalence …is due to wider recognition, broadening of the criteria.“

Fischbach cited the Diagnostic and Statistical Manual changes that he claims account for the skyrocketing increase in autism.  “I believe the prevalence was just as high twenty years ago, just not recognized.  I don’t believe there’s something that’s happened in the environment.”
Fischbach may have meant to cite a date other than 1987 for the removal of mercury, but he completely rejects the idea that autism has had any increase at all.  This man is a member of the committee that is supposed to be doing something about autism and he sees nothing wrong with one percent of U.S. kids having autism.

Reading Katie Wright’s account of the latest IACC meeting makes a person wonder if the membership has ever agreed on anything.

Katie’s other new piece was on a meeting to discuss autism prevalence conducted by the Centers for Disease Control and Prevention.  (HERE) Evidently, no one at this meeting has heard about what Thomas Insel said at NIH and MIT because they’re still debating if more kids really do have autism.  Katie reported that a large group of scientists still don’t believe the increase is real.
“Dr. Paul Shattuck and Dr. Peter Bearman gave their usual stump speeches about why the ASD increase is mainly due to greater awareness and parental age.”   


“It was very disappointing to hear Dr. Craig Newschaffer talk about how we can never know if the increase in autism is real. ‘We can never know.’”
 
The idea that genetics cause autism is still being pursued. 
 
It all boils down to the fact that NO ONE KNOWS ANYTHING FOR SURE ABOUT AUTISM.  NO ONE ADMITS ANYTHING.

AND NO ONE IS DOING ANYTHING ABOUT AUTISM.
 
Instead of circling the wagons and preparing for the autism onslaught, we’re pretending that it’s not going to happen.  Why aren’t adults with autism ever a subject at any of these meetings?  Tens of thousands of autism parents out there don’t even dare think of the future when they’re no longer around to care for their children. 
 
All a person has to do is look at the news stories on autism to discover how wrong all these officials and experts are. 
 
THE NUMBERS KEEP GROWING
 
In California recently, it was announced that autism continues to increase.  News reports on the subject had stunning information like this story. (HERE)

“The number of children with autism enrolled in special education classes in California has tripled in the past eight years, according to the state Department of Education.

“The department's Special Education Division reported 59,690 students had autism in the 2009-10 school year, which was up from 17,508 in 2002.”

Regardless of the numbers, old excuses die hard. It’s still nothing to worry about.  “But the hike in numbers does not necessarily mean there is an autism epidemic - parents and doctors are getting better at diagnosing children earlier, experts said.”

THE ADULTS ARE COMING

The latest news is that services for young people leaving high school simply aren’t there.  In the surreal world of autism news, no one asks why there’s nothing for them.  No one is worried and no one has any real solution. 

On February 8, 2011, the Baltimore Sun had the story (HERE) , "Resources scarce for young adults with autism,"  New research the storyrch suggests that the wealth of resources targeting children with autism tends to decline after high school, begging the question: what happens to autistic children once they reach adulthood?
“Nearly 40 percent of all young adults examined in a survey of 680 19- to 23-year-olds had not received medical services, mental health services, case management or therapy, according to a study published this week in the Archives of Pediatrics & Adolescent Medicine”

This article begs the questions: Why aren’t there services?  What did we do for autistic adults in the past? And why aren’t we sounding an alarm over what’s going to happen?

This new information on the lack of services for adults is a frightening omen for the future.  For two decades experts haven’t known anything for sure about autism.  Instead of real action, they’ve called for AWARENESS, ACCEPTANCE, AND ACCOMODATION. 

The really big lie about the autism increase not being real is alive and well, despite what Thomas Insel warned about.  The American people don’t question this lie.  We’re used to it.  We’ve had twenty years of experts telling us practically nothing for sure about autism and every imaginable lie to cover up the true impact that this disaster is having on the U.S.

I would love to personally attend one of the IACC meetings or a CDC meeting on prevalence.  I’d show up with a huge stack of news stories on autism--ones about the lack of services and the growing number of children in our educational system.  And I’d have ones about the absolute abyss out there when it comes to help for adults with autism. 
 
There’s never been study that could find adults with autism at rates even remotely close to what we see in our children.  NOT ONE.  All those who proclaim that there’s been no real increase have never bothered to look for the hundreds of thousands missing autistic adults.  I can go into the special ed rooms at my local grade school, middle school, and high school and find the kids who don’t talk, spin in circles and flap their hands endlessly.   I can’t go to the nearby nursing home and find residents like that.
 
What will society be like as these children get older?  Where are the group homes and institutions that will have to be there?  The waiting lists for services will continue to grow and parents will get older and less able to care for their children.  What happens then?  Maybe no one wants to face that question, but it’s out there.  It’s going to get louder and louder. 
 
I can’t imagine what autistic behavior in adults will be like because I’ve seen so little of it.  I know a number of people with autism in their twenties, but I’ve never seen someone forty or fifty with autism.  But they’re going to be here.  And we have nothing for them. 

So I’m warning everyone to prepare for THE NEXT REALLY BIG LIE ABOUT AUTISM.  It’ll be a lot like the one telling us that one percent of children have always had autism.  Only now, we’ll also be told that having one percent of young adults with autism is nothing new.
 
We may not have anything for them, but we’re not going to be alarmed.  We’re going to pretend that whatever happens is expected and normal.  Officials will be looking into it, I’m sure.  But I keep thinking of Insel’s words about preparing this nation for A MILLION ADULTS WHO MAY BE IN NEED OF SIGNIFCANT SERVICES.  No one is doing that.  Why should they?  No one’s been told there’s a problem.

What are the chances that THE NEXT REALLY BIG LIE ABOUT AUTISM will work when we’re all paying for it? 
 
 --
Anne Dachel is Media Editor of Age of Autism
 

 


 

Comments

Alexander Cornswalled

You're behind the times on this one. Big Pharma whores have been pimping that claim since BEFORE Wakefield's study proved the vaccine connection. It's not "the Next Really big Lie" about autism, but one of the oldest.

kristine

Depressing but true. The only part you left out was the part of the lie that goes like: Kids with autism miraculously get better around age 9. Remember that one?

John Stone

livsparents

Indeed, I find it significant that they didn't find them. I am sure, incidentally, that you will find the odd neglected case, but these guys couldn't find the cases so they projected the missing ones - and they re-labelled a survey which was supposed to be for Asperger Syndrome as for all ASD cases. Then, the study was launched on the public as evidence that MMR doesn't cause autism (which breaches the rules of publishing national statistics for political ends).

The beginning and end of it was that entire projection of a 1% figure was based on only 19 cases, which weren't proper cases. I see only an attempt to deceive - you can believe anything you like.

livsparents

The point guys, is that there HAS been at least one attempt to count adults on the spectrum and there was a significant find of missing ASD diagnosis. You may disagree with the methodology and results, but to deny that there are large numbers of missing ASD adults is just plain folly.

It's very easy to say that one thing or another does not make up 'the' increase of autism cases, but does anyone bother to count up these 'also rans'? All those somewhat significant factors that don't make up the whole increase, but add up to a bare minimum of 50-60%? Those things like better diagnosis AND diagnostic substitution AND better awareness AND better, more targeted educational services AND inclusion of aspergers/PDD AND shifts in classifications due to educational administrative requirements AND mental retardation reclassification AND a mandated federal special needs education system that is barely 20 years old.

I agree wholeheartedly that we must be cautious of those who may use 'explainable' increases in autism as justification for not increasing or cutting funding for adults and children. In case you haven't heard, we are in the grips of a critical budget crisis, from federal down to local levels. The entire broader infrastructure of disability rights and services is in jeopardy. I understand the need to present as dire a picture as we can, because it is a dire situation, for our kids/adults and thousands more in the broader disability community. But I don't think we can afford to exaggerate, be in denial, or serve alternate agendas to get what our loved ones desperately need. We ALL need to focus on the enemy on the outside of our gates locking the disabled in, rather than arguing with the 'inmates' on the inside...

Eileen Nicole Simon

Thanks, Anne, for your hard-hitting article. My son with autism is 48 years old. The first time I saw any other children with autism was when at age six my son was admitted to a children's mental health unit. On this unit only 5 or 6 other children had autism.

He is high functioning and should be working and be at least in part self-supporting. His best years were at Westborough State Hospital in MA between ages 29 to 40. Unfortunately, the hospital is now closed. For the past 8 years my son has lived in a group home with door alarms. He has worked, and should be working now, but I am told he has no motivation, which is totally wrong.

He is working for me. We are writing a memoir together. His life is very sad. He understands all too well what he has missed out on.

Good luck going to an IACC meeting. They refuse to discuss almost all comments presented, and you will get 3 to 5 minutes at most to speak. I have written to my senators and representative, but only get form letters back about how committed they are to solving the problem of autism.

Is it possible for the AOA organization to get a new IACC board appointed, and with strict guidelines for acknowledging and responding to stakeholder concerns?

Sarah

Good point Michael. Sometimes I feel we're in a big waiting game .. by 2021 an entire generation will have grown up autism....they won't relate to our stories of how, whne we were kids, we never, ever saw this many kids with autism, that autism was rare and when we try to convince them, they'll have autistic adults to point too.

Generations of the future will believe autism is genetic and that it'll be best to invest in genetic screening, nuclear DNA transfer or PGD lest they pass on a gene mutation to their children.

I really think there's a long term vision among the scientific elite for a healthier human population.

The plan: Phase 1: Force diseases to be expressed, Phase 2: Inventory those defects (Human Genome Project)by collecting the disease causing DNA Phase 3: Eliminate the disease causing gene from the human gene pool via PDG, genetic screening..

The bio-technology is there. The market for gene sequencing is growing. Designer babies will be the wave of the future. It's only a matter of time.


Balanced Opinion

Just to make that clear the sample / not the survey results were based on

"The samples used to derive the shorter set of AQ items were 1761 Cambridge University undergraduates, none of whom were considered to be ASD cases, although it is likely that a very small proportion would have been undiagnosed ‘cases’, and 304 clinical cases
diagnosed with ASD living in the East of England."

So the criticism is even more poignant because it starts with a very basic flawed sample. Leads to poor questionnaire which was already poor because it was shortened ..... Right from the word go.

You can see how that basic flaw started a cascade of flawed information.....the study is in my opinion useless.

Balanced Opinion

Thanks livsparents ...

The samples used to derive the shorter set of AQ items were 1761 Cambridge University undergraduates

Case closed on that particular study ...

ps Funnily enough using a 'shortened ASD quiz they still only managed a 1% population. Some interesting sociology studies need to be undertaken I suspect.

In fact these figures actually reinforce (accidentally) the very real epidemic - Thanks Baron Cohen because I reckon we would expect a higher rate of high functioning ASD at Universities. ie the expected percentage should have been higher.

The study also said ...

# The ASD prevalence rate was higher in men (1.8 per cent) than women (0.2 per cent). This fits with the gender profile found in childhood population studies.

That ratio doesn't look right either ... must be some wonky abacus being used that gives a ratio of 9 to 1.

I could have sworn it was 4.3 to 1

No wonder even the NHS said in the introduction ...

"The views expressed are not necessarily those of the Department of Health"

Bluecat

We have exactly the same problem in the UK. My son is 26 and currently has a brilliant day care programme. However, that's about to change as all our disability services are facing massive cutbacks. I have been banging on for years about the necessity for preparation for an onslaught of adults with ASD. My personal worry is what will happen to my son when we are gone. His life span will be that of any other adult male.

How long will this denial go on? We all know that there has been a massive rise in ASD, for whatever reason. It's not just better diagnosis for sure. We MUST begin to put funding into research now. Surely the powers that be can see the sense in funding research now to prevent having to fund adult services later. It would cost a lot less to do it this way, and the research might just find something that could prevent or at least manage ASD in the future. Oh I forgot, I'm living in a dream world...

AutismGrandma

Re: "Reading Katie Wright’s account of the latest IACC meeting makes a person wonder if the membership has ever agreed on anything."

Obviously the IACC membership has agreed to the same lies, and they have agreed to keep lying in the face of the factual evidence which is accumulating to the level of Mt. Everest....

All of these high ranking government officials joined forces with vaccine industry propagandists, tromped up this huge mountain all together and arrived at the top only to announce: "There is no mountain!!!" Everyone can see this huge mountain, but they have all agreed that they are going to keep telling everyone that it doesn't exist....

However the Truth will eventually result in an Avalanche and they will all be buried underneath all of their own lies.

michael framson

Lets face it, we are in the time of the 24 hour news cycle. Unless your name is Andrew Wakefield or Gabriel Gifford, most main stream American news dies in the 24 hour cycle. As time marches on, what we(most Americans) take in and remember accurately is limited and subject to recall errors.

What you bet, in the year 2112 (that's 11 years down road), the Associated Press headline will read: Adults with Autism have been found. The story will incorrectly reference that adults with autism remained elusive for years, subject to diagnostic substitutions and indeterminate incidence. But now, epidemiological evidence clearly demonstrates they're here, they've been found. And Presto....Katie Couric (Oy) will interview Fischback who will say, "yes we knew they were always here."

Yes they are planning to have it both ways, the lie going in and the lie going out; and the past record of truth you have, will not matter.

History in the making, the obituary of the truth.

Erika

Great article Anne, thank you.

Interesting, i was born in 1969, never used a car seat, and i am still here.

About the Dr. Oz show, i believe that even if it was mostly 'one sided' is still bringing awareness to our cause.
Let's hope that at least some parents will do their homework after watching the show. (I have yet to meet a parent that goes ahead and vaccinates AFTER doing their homework.)

At this point, any publicity is good publicity because we all know that there is no smoke without fire.


cynthia parker

Patti White, speaking for an association of school nurses in Missouri, wrote a great letter to submit to hearings on the hepatitis-B vaccine before the House of Representatives twelve years ago. She wrote about the astounding increase of handicapped and autistic children flooding the public schools in the three or four years before she wrote the letter, and that while her association had originally researched the issue in order to reassure parents that the vaccines were safe, it quickly became convinced of the contrary, that it was the vaccines that were the cause of the increase, especially the hepatitis-B vaccine, which started to be given to newborns in 1991. She is one of the very few members of the medical profession to say that she would have to live with the guilt and burden of having encouraged parents to vaccinate, when it turned out to have caused incalculable harm to thousands.

Why didn't Congress pay attention to her well-researched and documented report? My daughter would be developing normally now if it hadn't been that the hospital gave her the hep-B shot at one day old, two years after Ms. White warned of its terrible effects on many babies. How can we stop this insanity?

Maurine meleck

Are you sure it's not the freeways? There are a lot more freeways than there were 20 years ago.
Great analogy about the wagons circling. Thanks Anne. They need to make you head of the IACC.
Maurine

Vicki Hill

"THE ADULTS ARE COMING." As the mom of a 23 yo, I can tell you that some of these adults are already here, but the services are not. This is why I volunteer with nonPareil Institute, one of the few nonprofits around that is focused on creating futures for adults on the autism spectrum. We have adults in the program from age 18 to 53, but most are under age 30. If we family members don't work together to build resources now, then the challenges in another ten years will be unimaginable.

Anne McElroy Dachel

While U.S. health officials never bother to look for the missing adults with autism, the British supposedly found them. It was a nice try, but it didn't work. Here are two stories about what was done.

http://www.ageofautism.com/2009/10/1-in-100-how-the-uk-government-arrived-at-the-adult-autism-figures.htm
lhttp://www.ageofautism.com/2009/09/uk-government-farce-over-new-adult-autism-study-.html

Anne Dachel, Media

John Stone

livsparents

Yes, you are quite right there was such study and Anne probably forgot about it. In the meantime you may find this enlightening:

http://childhealthsafety.wordpress.com/2010/02/10/uksurveyautismlink/

Carolyn Gammicchia

Anne,

Thank you so much for again taking the time to write an article that should even have naysayers waking up. The difficulty, we are still singing to the choir here and others need to hear this within the mainstream and see, this isn't going away....really it isn't.

It will be my problem, your problem, our problem, society's problem, if we allow it to be.

We as a community need to get involved more. Each IACC meeting there should be folks voicing during open comment about what is being discussed here. Each chance for open comment, like the current one with the ADD, we need to submit comments...I hate it most when the folks in charge of the appropriations say "We didn't hear that concern" or "No one addressed a funding need in that area". Heck if we don't provide that input other than to each other, we're waging a losing battle in my mind.

Anne you've given me much to share however, and will do so in another comment to the ADD for their strategic plan, to the IACC due to their lack of response regarding wandering and elopement issues, and also to my own state lagislators swinging there axes for budget cuts to state programs.

Much appreciation,
Carolyn

livsparents

"There’s never been study that could find adults with autism at rates even remotely close to what we see in our children. NOT ONE"
Here's one Anne!
http://www.ic.nhs.uk/pubs/asdpsychiatricmorbidity07

Gina Vokoun

The articles that make you want to puke are the good ones. Thanks Anne for another great article.

I agree with John above "It's the vaccines, stupid!" Everyone knows that.

Gina V.

Judith

You would think that the nation's teachers would be speaking out about this. They can clearly see what has happened. Teachers who were in college before the mid 90's were likely told they would probably never see a child with autism because it was so rare....and now they can't go into a classroom without finding one or more with it. Why aren't they speaking out about this lie?
I know as a pediatric nurse, we cover NOTHING on the topic of autism. When I suspected that my son had autism, I pulled out my "old" pediatric text book...from 1992 to find out more. And the section was a small paragraph, describing "flapping of hands" and anti-social behaviors. Nothing on how to care for these children in a health care setting. If it was so common back then, I am certain that we would have learned something about the issues you deal with when caring for a child with autism who has a medical condition/illness.
I did my nursing psych rotation at an adult hospital (major city)in the early 90's, which had long term cases of individuals with various mental health issues. Schizophrenia, Bipolar, Eating Disorders, Post Partum depression and Major Depression was what we saw. Not a single patient with autism. So they weren't hiding there.
Not to mention, I worked in the mid 90's in the teenage psych unit at the local children's hospital. Took care of a couple of schizophrenic boys, a few girls with eating disorders, and some kids with severe depression/suicide attempts...yet not a single one with autism. So they weren't hiding them in there.

It is sad...as a parent of a child who is nearly recovered (and yes, Fischbach...recovery is POSSIBLE) I am optimistic that my son will be okay. I'm horrified at the thought of the hundreds of thousands of families who are not so fortunate as I have been. This is a disaster that could have been prevented.

Federal hearings on this, which will likely happen about 10 years from now, on why this disaster could have/should have been avoided, is not going to help our families now.

Jersey Joe

My father insisted on a flu vaccine after my brother screamed at him that I was a lunatic for raising questions about it. So I accompanied him to the family doctor. The doctor was extremely snarky and kept trying to rile me with ridiculous comments. I kept my cool and my father got the only one without thimerosol. Meanwhile the doctor was saying, "I gave my wife a flu shot with thimerosol when she was pregnant." Obviously this is not something to brag about. He is, I might add on staff at a large Eastern teaching hospital. Sigh. The dance goes on.

susan

dr oz hide a speical on autism and the autism spak.ogr did not show up on dr oz so why not dr oz even aske them to??

Jeanette MacDonald

A lot of people think it is related to the triple vaccine - any research being done into that?

susan

i fell where u r comeing from my son has asd

Tom K

Great Article, Thanks.

Question
If there is no rise in the incidence of autism and it is really just "diagnostic substitution" (I.E. Mentally Handicap, Learning Disabled being reclassified as autism), Then why hasn't the needs for special education services remained flat?

The answer to the question is there. Just poll special education teachers that are nearing retirement. Ask them if they've seen an increase in autism over their career. It's like "ask the audience" in who wants to be a millionaire. If 70-80% of that population says there is an increase, they are probably right!

John Stone

Anne

Great article, but also don't forget that this is what Francis Collins (present head of the NIH and the time head of Human Genome Project) told Congress 5 years ago:

“Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons. Therefore, GEI will also invest in innovative new technologies/sensors to measure environmental toxins, dietary intake and physical activity, and using new tools of genomics, proteomics, and understanding metabolism rates to determine an individual’s biological response to those influences."

http://www.genome.gov/18016846

The result, of course, is 5 years of inertia, thumb twiddling and filibuster on the IACC. When it was being said all that time ago, and at the very highest level, why is nothing being done? I think we must assume that they know the answer, and don't like it.

"It's the vaccines, stupid!"

John

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