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To Journalists on the Eve of Autism Awareness Month

School flu shotBy Anne Dachel Blue sand timer

Dear Fellow Members of the Media: (That includes all of you at CBS, NBC, CNN, Forbes, New York Times, Chicago Trib, LA Times, et al.)

April is coming up and I wanted to say a few words about the month dedicated to autism awareness.  Many of us in the autism community are tired of stories about lighting the world up in blue and celebrating autism as if parents should be happy about a diagnosis.  We've endured years of feel-good coverage about awareness, fund-raising walks, and no explanation for the mystery of autism.  

Most of all, we want you to do your jobs. 

Do you know what reporters are really supposed to do? 

Five years ago I found this youtube by Bob Woodward.  (Remember Bob?  He and Carl Bernstein were the famous reporters at the Washington Post in the 1970s, who exposed Watergate and helped bring down a corrupt president.  They even made a movie about them.



Woodward said that a good journalist does three things when covering a story and I thought I'd pass them on to you with the hope that you would apply them to your reporting on autism.

First, you're supposed to CHECK SOURCES.

Woodward: "It means checking everything, talking to half a dozen or even a dozen people for a day story. If it's something longer, you want to totally surround and saturate the subject."

Second, you need DOCUMENTATION.

Woodward: "I have not really ever seen a story in a newspaper or on television or even on radio that couldn't be enhanced with some sort of documentation that would support or add more detail to what the story is about."

Third, you're supposed to CHECK INFORMATION FIRST HAND.

Woodward: "Get your ass out of your chair and get over there."

This is the kind of stuff we the public think reporters do when they cover a topic, so when you start giving us stories about Autism Awareness this April, we want you to do it like professional journalists.

Instead of stories with photos of happy kids on playground equipment or a 30 second video of a cute four year old interacting with a speech therapist on the news, show us the dark side of autism--the teenagers in diapers, the non-verbal children who spin and rock endlessly, and the really sick autistic kids with seizures and bowel disease.  People deserve to know just how badly autism can affect a child.

Talk to real parents who have enormous fears about the future.  They're the people whose teenage children who will be aging out of school in a couple of years and they have no idea what's out there for them.  You might even describe this as A CRISIS.  Members of the press never use that word when talking about autism, but trust me, a serious health problem with no known cause or cure that affects 2 percent of children really is a crisis.

Speaking of the rate, why is it that no matter how bad the numbers get, it's never a true increase, according to every media source quoting officials from the Centers for Disease Control and Prevention? 

When each stunning leap in the rate, one in 150, one in 110, one in 88, and the last update, one in 50, was reported, you allowed officials to claim that they had no proof that more kids actually had autism.

Just how bad do the numbers have to get?  When does something become AN EPIDEMIC, in your opinion? Why are the numbers always based on studies of children?

You give health officials a free pass every time they lamely claim that autism has always been around like this, we just called it something else.  If that were really true then they would be lots of middle aged and elderly people out there in group homes and nursing homes who've spent most of their lives being non-verbal, flapping their hands, wandering away, obsessing over certain activities.  Lots of these adults would also have a medical history that includes a sudden and dramatic loss of learned skills and regression.  YOU NEED TO FIND THESE PEOPLE.  Or else you need to report the truth about autism--it is a new condition that overwhelmingly affects children.  You have to stop telling us that bad genes are the reason a child ends up with autism.

How come none of you ever talk to special ed teachers who've been in the business 20 or 30 years? Ask these people if they think we've always had disabled kids like this. Do you ever ask yourself why you're covering autism training being given to police, fire fighters, EMTs, librarians, teachers, and yes, even doctors? Why would they have to learn about a disorder that's always been around?

By the way, why is it that you all never hold health officials accountable for the research they tell you about? Why do you accept every new study showing no link between vaccines and autism from the agency that runs the vaccine program as valid science?  Why doesn't someone ask, WHO FUNDED THE STUDY?  Why doesn't anyone look into THE CONFLICTS OF THE RESEARCHERS?

AND PLEASE, stop giving us Dr. Paul Offit as the go-to-guy on vaccine safety.  We all know that he's more than "an infectious disease expert from Children's Hospital of Philadelphia," as he's always described in news reports.  Why don't you mention that he's also someone who's personally made millions of dollars from the development of a vaccine for rotavirus?  Wouldn't you say that this gives him an enormous bias? 

The truth is there are over a hundred and fifty studies out there done by INDEPENDENT EXPERTS that do show serious side effects from our unchecked, unsafe vaccination schedule.  IT'S YOUR JOB to cover these as well.  That may not make you popular with advertisers or mainstream medicine, but IT'S YOUR JOB.

It's important that you know that we are sick to death of seeing you blame the controversy over vaccines and autism on Jenny McCarthy, Kristin Cavallari, and Dr. Andrew Wakefield.  It's simply not true and you know it.  You know it because of the Hannah Poling story in 2008.  She was the young Georgia girl whose claim of vaccine injury included autism and was compensated by the federal government. 

The government didn't tell us about this stunning revelation--her parents did.  Her dad, Jon Poling, a neurologist and a researcher, studied children who regressed into autism following vaccination.  This was never suppose to happen. There isn't supposed to be any way that getting vaccinated could lead to autism, but in the case of Hannah Poling and others, it did.  The same health officials who continue to say there is no link agreed and she was paid compensation.  This stunning event was in the news in 2008, but it quickly died and you guys went right back to telling us vaccines never cause autism.  How can you report like this?  What kind of pressure are you giving into?

Believe me, parents in the autism community (and there are more and more of us) know exactly what you're doing.  When you slam Jenny McCarthy and label her a Playboy bunny, you're hiding the fact that medical experts support her.   

On April 5, 2008 McCarthy appeared with Dr. Jay Gordon on Larry King Live.  and on April 12, 2008, McCarthy was again on Larry King, this time with Dr. Jerry Kartzinel at her side.

She co-authored the best-selling book, Healing and Preventing Autism, with Dr. Kartzinel.

Dr. Gordon is a nationally renowned pediatrician, member of the American Academy of Pediatrics and Assistant Professor of Pediatrics, UCLA Medical School.

Dr. Kartzinel is a well-known advocate for children's health which includes the use of bio-medical treatments to recover children with autism.  He has used these therapies to recover his own son from autism.

Pretending these doctors don't exist smacks of a cover-up.

When you mention Dr. Wakefield, you do the same thing.  The man is a gastroenterologist and the children he wrote about were brought to him by their PARENTS.  THEIR PARENTS said they were normally developing until they received the MMR vaccine.  They got sick with BOWEL DISEASE AND AUTISM.  How come no one ever interviews any of them?  Why don't you ever mention the fact that the British government indemnified the manufacturer of the MMR and that the government has everything at stake in denying any link?

I could go on and on.  I've been following all of you for years and your claims never change.  It's so obvious to us out here in the real world that you're not doing your jobs.

 It's all about telling the truth.  And it's all about covering up the truth.

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 goes on sale this Fall from Skyhorse Publishing.

Comments

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This just in from NJ: http://www.nj.com/news/index.ssf/2014/04/layoffs_at_star-ledger_njcom_other_advance_newspapers_top_300_1.html

Imagine the potential investigative reporting on autism in NJ by those 300 axed professional NJ journalists. Never waste a crisis, isn't that the expression?

Ken Reibel has written an article mocking this piece on Huffington Post. You might want to go over there and comment on it.

http://www.huffingtonpost.com/ken-reibel/to-reporters-on-the-eve-of-autism-awareness-month_b_5028831.html

This is a piece I did about autism for the Chicago Tribune Magazine in 2007, and being the father of the subject, it is not an "everything is beautiful in its own way" piece: http://www.davidroyko.com/thechroniclesofben.htm

It's more like AUTISM SPEAKS AWARENESS month. They want more people to know they exist and more people to give them money to walk. What does AS do with this money besides pay the shamefully exorbitant salaries of their executives and, what, fund Merck and GSK controlled research? In any case I have never heard of them paying for anything in Canada, despite selling their light bulbs here, so I couldn't care less about them.

For all that Pharma and the CDC spend paying for fake studies and legal stuff and all that, to try to convince us that their vaccines don't hurt anyone, they could have helped the vaccine injured's expenses.

Anne,

Thank you very much for writing this. I'll be forwarding it to our local media as well as those within the major AP representative national and international media outlets. I'd advise other parents to do so along with a short personal story of how autism is affecting your child or children living with it and too how that in turn has an effect on your entire family.

We as a community really need to do so because if we do not we will spend the entire month listening to the branded autism awareness representation that is done to promote the now lurid business of autism as well as to promote charity to Autism Speaks. We don't need pity and charity, we need compassion and empathy. Tell those you contact also that organizations such as AS do not represent your family nor other families and only gives back 3-4% to families for support and that is via a website and blog.

Additionally please take the time to ensure real stories depicting lack of health choice options for appropriate medical care exist for the majority. If you have a child that is having their medical needs met with complimentary medicine, please share that story and acknowledge too this is not happening for very many due to lack of access the few doctors able to assist our children.

Lastly share the stories we see daily of the children who wander and lose their lives, the adults being subjected to abuse in institutional settings, the students being restrained and secluded, and most of all what is transpiring due to the IACC not doing what was the mission of that committee established via the CAA. Provide them too with the GAO report and ask them where else within the spending of 1.3 billion dollars on research has that been done without accountability, very limited to no transference to application, and the continuing lack of acknowledgement of vaccines and their contribution to the current epidemic of autism.

This is up to us. Going up against a blue branded fundraising campaign for Autism Speak will be difficult and seem daunting, but we can do this if we all work as a community to do so. As someone that work very hard to bring forth the need for the awareness of autism starting over fifteen years ago, well before Autism Speaks existed, I personally dread having to experience what now transpires in the month of April. That too is why I've worked very hard to rebrand the month as Autism Action Month and each day do something to ensure others take an activist role.

We've past the tipping point folks. Now is the time to illuminate what is transpiring and not with blue light. The CAA is also coming up for reauthorization, now is the time to meet with legislators to ensure they know your expectations of what should be in the CAA to assist our community, not those profiting from individuals living with autism and their families.

Thank you all and please keep up the fight and support those organizations that support families daily such as TACA and NAA.

Bravo!!! Thank you for giving journalists a much-needed spanking. Too many are lazy repeaters or advertorial sellouts. How many have actually spent face time with autism families, read any studies or filed any FOIA requests?

OMG! I just came over here from the NYT's vaccine love fest. I thought we were getting ahead, but after reading the comments--I'm so depressed!

http://www.nytimes.com/roomfordebate/2014/03/23/making-vaccination-mandatory-for-all-children?hp&rref=opinion

For the past three years I have joined the Autism walk to raise awareness for a good cause, but each year the numbers have dwindled.

Not because there are less children being diagnosed, but because the parents are too tired dealing with the day-to-day battles of Autism and an apathetic government.

Elizabeth Gillespie

Some of the ...Simpsonwood pediatricians... would make GREAT GUESTS for the April 2nd, NBC Today Show...

from the Simpsonwood transcrips

Dr. Richard Johnston, an immunologist and pediatrician from the University of Colorado whose grandson had been born early on the morning of the meeting's first day, was even more alarmed. "My gut feeling?" he said. "Forgive this personal comment -- I do not want my grandson to get a Thimerosal-containing vaccine until we know better what is going on."

Senator / Dr. Frisk, also tried to block the release of the CDC Simpsonwood meeting transcrips. He was not successful.

http://www.scribd.com/doc/2887572/Simpsonwood-Transcript20Searchable

In late 2001,..Senator/ Dr. Bill Frisk...inserted a clause at the end of the Homeland Security Bill that provided additional legal protection for those who produce the mercury preservatives used in vaccines.

I meant "polling." But perhaps poling works about as well.

I'm fearing that this letter might be addressing an empty set, but maybe enough still want to be journalists to leave "the mainstream" if enough funding becomes available elsewhere.

My email provider's front page news is poling again on what I think "will happen," this time in the search for the missing Malaysian airliner. So if I tell them what I want to happen, will that make it more likely to be the reported "outcome?" What possibly benign reason could there be for asking readers what they think the outcome will be or what so-and-so will do...?

How about journalists start at the beginning "Simpsonwood" the Watergate of Autism.

Autism Awareness Day

I would suppose the Wright's/ Autism Speaks will be invited again to the NBC Today Show.

Perhaps Katie could also be provided a seat.

Yes, major news media, basically don't underestimate people. The public isn't stupid.

That should not be too difficult -- they already have an excellent reporter, and writer; ready with his sources and his story; Dan.

Taximom;
The stupidity of trying to separate autism and brain injury is just beyond -----.
They should embrace autism as the result of a vaccine reaction brain injury --- and try to hide the fact that it causes "brain injury" period - because the whole of my area is filled up with mild to severe bipolar -- and tourettes --- and who knows what else related to mental illness - the result of brain injury (which covers it all).

Yeah, might have been smarter if they said it causes autism type of brain injury - and nothing else.

Great letter, Anne!

You can even add that the US government didn't stop with Hannah Poling--it wasn't a one-time fluke, as many are claiming. Bailey Banks' case of vaccine-caused ADEM/encephalitis leading to PDD was compensated in 2007, with the record stating that the distinction between PDD and autism is that autism has no known cause!

They compensated 2 more cases in 2013, Emily Moller and Ryan Mojabi.

Journalists don't like to mention these cases, because Bailey, Emily, and Ryan were not diagnosed with pre-existing mitochondrial disorders like Hannah Poling. They were normally-developing, healthy children--until they were given vaccines.

It's also important to look at the court cases of these children, as it is clear that their parents, as petitioners, were fought every step of the way by the "expert witness" defending the vaccine. In the case of Bailey Banks, neurologist John MacDonald tried to insist that Bailey was suffering from glucose transport disorder, which the court thankfully shot down as a "hypothesis was not given to a reasonable degree of medical probability or certainty."

Emily Moller's case dragged on for 9 years before the court decided not to devote any more money to fighting it--and fight it, they did. Emily's mother reports being badgered and harassed on the stand for 4 hours, and that her lawyer quoted the judge as being against finding for the Moller family BECAUSE Emily had autism: "...she was angry, she felt forced into a corner with no choice but to find for us," Moller said. "She said, 'Emily has autism, and I don't want to give other families who filed autism claims any hope.' "

And many of the so called "journalistic pieces" on the internet have "disabled comments" --just like our kids.

Great letter, Anne. Begging for people to stop using the word "awareness."


Maurine

Anne .. it is too bad that YOU are not a professor at one of the .. formerly .. prestigious universities (Columbia?) .. where a degree in "journalism" was once well-respected by employers .. as well as .. the public at large.

Unfortunately, the small number of true "investigative journalists" .. who eargerly thought they were going to follow in the broad footsteps of Woodward/Bernstein .. are no longer welcome .. by those now in control of what was once the revered .. FOURTH ESTATE.

Yes .. we still have "Freedom of the Press" .. but ... it has become a "lap dog" instead of a "watch dog" on too many critical issues .. most especially .. whether or not our vaccines are as "safe and effective" as our government public health officials insist they are.

A "watch dog" would be an aggressive "investigative reporter" as described by Woodward.

A "lap dog" is the passive "advocacy journalist" who is trained to avoid "fair and balanced" reporting .. which requires they know what information they "cannot report" .. as opposed to .. what information they "can and are expected to report".

Today .. all they have to do is regurgitate the latest "press release" issued by the CDC, FDA, HHS, etc .. and .. that is the extent of their "reporting".

In fact .. the vast majority of "lap dog reporters" could be easily replaced by a Xerox machine.

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