AGE OF AUTISM

Harris Coulter Was a Brave Visionary

By Barbara Loe Fisher

Sometimes, when you least expect it, you get news that makes you stop and think about someone you care about, who taught you something important. Recently I learned of the death of my co-author of the ground breaking book he and I wrote together and published in 1985: DPT: A Shot in the Dark.

Harris was only 77 years old when he died on October 28, 2009. He had struggled for 12 years with the debilitating effects of a brain hemorrhage he suffered at age 65 while he was in Paris. It was a paralyzing stroke that would end his remarkable career.

When I last spoke with Harris two months before his death, I had called him to check out a rumor that he had passed away. With characteristic wit and clarity, he laughed and quoted Mark Twain, saying "The rumors of my death are greatly exaggerated."

Although the stroke had left him paralyzed, it did not rob him of his personality or ability to recall details from the past. And every single time we had spoken in the decade following his stroke, Harris wanted to talk about the journey of discovery we took together when we wrote what would become the first major, well documented book examining the scientific and clinical evidence that vaccination can and does cause brain inflammation, permanent brain damage and death for some. Among his many accomplishments, Harris considered our collaboration on that book - which was published exactly a quarter century ago - to be his greatest one.

I remember the first time I spoke with Harris. It was the fall of 1982. I had been researching the side effects of DPT vaccine and interviewing parents of vaccine injured children for eight months following the broadcast of the emmy award winning television documentary DPT: Vaccine Roulette earlier that year.... click here HERE to read the entire commentary and watch a video.

 

Autism and Gut Issues: But Dr. Nancy Said There's No Connection!

By Anne Dachel

In Aug. 2009, I wrote the story, Autism Experts Only Seem to Know "What Doesn't Work" .
That was about the news coming out at the time about a Mayo Clinic study on gastrointestinal problems in autistic children.  Contrary to what many parents were dealing with, experts couldn't find any significant gut issues in autistic children.
 
At the time, a lot of top news sources made up a chorus all saying the same thing:
KIDS WITH AUTISM HAVE NO MORE GASTROINTESTINAL PROBLEMS THAN TYPICALLY DEVELOPING CHILDREN DO.  
 
It's hard to challenge sources like Pediatrics, the journal of the American Academy of Pediatrics, the New York Times, WebMD, and NBC's the Today Show.
 
I remember Dr. Nancy Snyderman on the Today Show telling us: 

"The findings are important because they really dismiss that link between the gut and these neurological problems that we see in autism.  And primarily they were looking for problems like mal-absorption and inflammation. These findings are very conclusive: There is no link between illness in the gut and the signs and symptoms we see in autism."
 
And in Oct. 2009, WIRED ran the story, An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All .  In an amazingly one-sided article, Amy Wallace raised Dr. Paul Offit to new heights of expertise and vilified anyone daring to challenge him, all the while blindly ignoring the disaster called autism:

"In August, for example, Pediatrics published an investigation of a popular hypothesis that children with autism have a higher incidence of gastrointestinal problems, which some allege are caused by injected viruses traveling to the intestines. Jenny McCarthy's foundation posits that autism stems from these bacteria, as well as heavy metals and live viruses present in some vaccines. Healing your child, therefore, is a matter of clearing out the 'environmental toxins' with, among other things, special diets. The Pediatrics paper found that while autistic kids suffered more from constipation, the cause was likely behavioral, not organic; there was no significant association between autism and GI symptoms. Moreover, gluten- and dairy-free diets did not appear to improve autism and sometimes caused nutritional deficiencies. "

Suddenly however, it seems the medical/scientific community hasn't closed the door on the possibility of a relationship between GI problems and autism

CALL DR NANCY!

Autism and the Gut: Houston Study

By Teresa Conrick

There's a new autism study coming out and hold on ---- it's about the gut.  Now didn't we just have articles, studies, and news reports telling us that there is no connection to GI issues and autism?- ie - Pediatrics, MedPageToday, and WebMD Brain Autism News.

Here is a report of a different study  (ABC KTRK Houston) and it should make us all wonder how it's possible that our FDA is fast tracking a medication for autism and its related GI connection when there has been a constant denial of our kids having chronic, painful gastrointestinal issues:

HOUSTON (KTRK) -- Doctors have suspected a link between autism and digestive problems for years. Now Houston researchers are testing a drug with such potential, that the Food and Drug Administration has fast-tracked it. Scientists believe it may improve autistic behaviors.

A month ago, her mother says five-year-old Zoe wouldn't look you in the eye. Zoe, who has autism, didn't talk much, and rarely interacted others. "Zoe is so different now. She actually comes up and talks to me, says look at this look at that, she never used to do that," said Meredith Langford.

Dr. Deborah Pearson also sees changes in Zoe too since she began taking an experimental medicine in a University of Texas-Houston study on autism. "We don't know if she's on placebo or the study medication, but it's a very interesting difference from the little one we saw just a month ago," said Dr. Pearson.

Zoe takes the study medication mixed in her food. It helps her digest protein. Doctors believe many children with autism can't digest protein, which would cause them to lack amino acids that are critical in producing neurotransmitters for the brain. They believe resolving the digestion problem may help the autism.

Lancet Boss Failed to Disclose Own Conflicts to Parliament while Denouncing Wakefield

By John Stone

Sir Crispin Davis, until recently chief executive of Reed Elsevier which owns the Lancet, failed to disclose his own conflicts while denouncing Andrew Wakefield to the House of Commons Science and Technology Committee in March 2004. Sir Crispin failed to disclose either that he was a non-executive director of MMR defendants, GlaxoSmithKline, or that it was his own brother Sir Nigel Davis who had endorsed the Legal Services Commission’s decision to pull the plug on the funding of the case in the High Court 3 days before ((HERE).
This was barely more than a week after allegations had been levelled against Wakefield by Lancet editor Richard Horton, and Sunday Times journalist Brian Deer.  Nor do Davis’s conflicts ever seem to have been mentioned by Horton.
Remarkably, these relationships had been mentioned in Sunday Times article about Sir Crispin, just weeks earlier:

"Family get-togethers could become galling for Davis if he ever slips up, such is the incredible success he and his brothers have achieved. One of them, Ian, is managing director of McKinsey, the management consultancy, another, James, is a partner at the top law firm Freshfields, while a third, Nigel, is a High Court judge.

"Davis’s only other City job is as a non-executive board member at Glaxo Smith Kline, a position he secured last year."

This did not stop Sir Crispin accusing Wakefield as he was cross-examined before the committee by Dr Evan Harris MP who had accompanied Deer to the Lancet offices 12 days earlier.  He told Harris:

“At the time of the submission of the article there was no admission of conflict of interest. Three months later there was a written letter. I think I have got it somewhere here.“

When You Call Us Nazis, Remember This Boy.

To those who delight in comparing us to Nazis, taking the darkest chapter in modern history and contorting it to meet your bizarre quest, remember this boy. He is not in Dachau, he's in the United Kingdom battling autism and severe bowel disease. Read more about Josh at A mother's plea. 

On Being Compared to Hitler and the Nazi Movement

By Kent Heckenlively, Esq.

You know, I'm more often mistaken for being Jewish than I am for being a Nazi.  Even my wife (whose family is half-Jewish) thought for certain I was Jewish when she first met me.

But according to a YouTube video in which the movie Downfall has been given new subtitles so that Hitler becomes J.B. Handley ranting about vaccines and autism, I'm one of the few loyal Nazis that Hitler/Handley wants remaining with him in the bunker.  The others are Mark Blaxill, Dan Olmsted, and Kim Stagliano.  I just can't figure out, though, which Nazi officer the lovely Kim is supposed to be.  Jenny McCarthy is Eva Braun and Dr. Kartzinel is commanding a tank division threatening the bunker.  (Yeah, I don't understand that part, either.)  This gem posted on Heraldblog's YouTube account (aka Autism News Beat, aka Ken Reibel) is so awful that I couldn't stop laughing after watching it.  It's HERE.

After viewing it though I couldn't help but ask a simple question.  With more than a million children with autism, is that the best you've got?

No answers about what causes autism beyond looking for some gene that you haven't been able to identify yet, even though the human genome was mapped years ago?

Oh, and besides, if it is a genetic problem, why hasn't this always been with us?  You think it has?  Then why did Dr. Leo Kanner in his 1943 study claim it was unlike anything he or any of his colleagues had ever seen?  Why when the movie Rainman came out in 1988 were pediatricians in medical school told they might go through an entire career without ever seeing an autistic child?  How did something that was 1 in 10,000 twenty-five years ago become 100 in 10,000 today? 

Maybe the increase from 10 to 36 vaccines before the age of six, with the majority of those administered in the first six months of life?

Ari Ne'eman Nomination to National Council on Disability on Hold

By Kim Stagliano

The New York Times reports HERE that Ari Ne'eman's nomination to the President's National Counctil on Disability is on hold. When the autism community learned that Ari Ne'eman, a 22 year old man diagnosed with Asperger's syndrome at age 12, had been nominated to represent the autism community, questions arose about his willingness and ability to speak for the broad spectrum of disability within the community. 

Mr. Ne'eman is vocal advocate for self-advocacy.  I know of no one opposed to self-advocacy for those who are able, despite the cries within the Neurodiversity community that we in the treatment community are "anti-autism."  The reality is that many of our loved one can not self-advocate due to the severity of their autism. We use treatments in order to elevate our children's functioning to a place where they too can self-advocate.  We bristle when we're told that our children do not deserve treatments and research that could move them "up" the spectrum. Mr. Ne'emans organization, ASAN states:
 
Research priorities should focus on areas that have the most potential to improve the daily lives of Autistic people, such as communication and assistive technology, best practices in providing services and supports, and educational methodologies. Health care disparities need to be remedied and beneficial therapies made more widely available; however, the use of scientifically unproven treatments and those that focus on normalization rather than teaching useful skills should be discouraged.

"Normalization" for many of our children means the ability to use the toilet, eat and digest food, remain safe in public and much more, all related to survival, quite frankly.

In fact, the organization that has helped put autism onto the "mainstream" map, thus giving Mr. Ne'eman his platform, was launched not because of a bright pre-teen who was able to communicate, but a severely affected toddler who was seriously ill and still needs treatment every day, young Christian, grandson of Bob and Suzanne Wright, and son of Age of Autism contributor Katie Wright.

Do the highest functioning with the community have a right to dictate the services and research that should be available for their less fortunate "peers?"  I don't think so. 

I can't imagine vocally advocating against corporate employment training or college social skills and living support programs for students with autism simply because my child may never attend college or hold an independent, paying job. I feel no threat from the high functioning autism and Asperger's community - in fact, I look to them as beacons of hope as to what my children might someday achieve.  When a self-appointed spokesperson speaks out against the care my children need, I worry about his ability to represent the community. And I'm not alone, as you can read in the New York Times article.

Meanwhile, a nationally known autism advocate with Asperger's, John Elder Robison, author of Look Me in The Eye , has said that while he does not need a cure, he understands how more severely affected people with ASD may indeed require a different degree of care and treatment.  His keen logic allows him to see that my children need far more than a high functioning adult with Asperger's Syndrome. In fact, Robison is now working with Autism Speaks  to advance a promising new treatment called Transcranial Magnetic Stimulation  that has already proven to successfully ameliorate some of the less beneficial traits associated with his Asperger's, while retaining the strengths.

Is Mr. Ne'eman able, within the parameters of his Asperger's, to see the larger picture of disability within the commiunity and act on behalf of those who do not share his level of functioning? This is the concern throughout the community.

In January, we ran a posted a letter HERE from Autism Action Network to Mr. Ne'eman asking him to clarify his views on research and treatment for autism, and his response. In short, he declined to asnwer until after his appointment was complete.  

Hi, Anxiety.

By Cathy Jameson

Several nights a week I am a worry wart.  The nighttime worry ritual begins as I physically begin to feel exhausted.  My eyes get droopy and it takes me longer to finish a chore I should have done hours ago.  I always hope I can get through the remainder of the evening without letting anxiety take over.  It rarely happens though.

I head to bed with the final thoughts of my things-to-do list that I have mentally written for the new day. I slide into bed saying a bunch of prayers to guide me for tomorrow, close my eyes and wait to drift off to la-la land.

Sleep should be the next logical step. It probably is for the majority of people but it isn’t for me. I find myself tossing and turning, wondering and worrying instead of slowly fading into slumber.  My mind races toward a finish line that doesn’t exist.  All I “have” to do next is sleep but I can’t. 

What keeps me awake at night for hours on end? I’ve done as much as I could possibly do all day long.  I’ve transported multiple children to multiple outings in opposite directions.  I’ve made countless meals and snacks while filling sippy cups and SIGG bottles. I’ve measured medications and wiped boody bums throughout the day.  I don’t get to sit in one place too long and can barely eat my own meal before bits of it are being requested by my children.  Why am I suddenly in mental overdrive while my tired and overrun body is achy from taking thousands of steps over toys, around children and in between hugs and high fives?

I worry about what I could have done and what I can do about that. I worry about why this and why not that. I worry about who should have done that to prevent this while figuring out who I can ask for help to clean up the mistakes made in the first place. I worry about money and where it has to go and why it’s so quickly gone. I worry about the typical kids running around me and if they “get” why Mommy is such a freak as I read everything there is out there that includes anything to do with seizures, mito disease, special education, therapy and autism.  I worry that I sometimes don’t worry enough and then I worry that I worry too much.

What Can Be Done to Prevent Autism Now?

By Maureen H. McDonnell, RN

Although the entire mystery of what has caused the autism epidemic has not yet been solved, based on emerging science and parents reporting what specific treatment have improved (or in some cases recovered) their children, we now have some strong clues regarding autism prevention and treatment. 
 
Causation theories range from: it must be due to better diagnosis, (rather than a real increase), to maternal age at the time of conception to the more likely scenario suggesting genetic predispositions plus environmental factors (including an explosive increase in the number of vaccines given before the age of 5) are to blame.  The problem is, while we wait as the experts debate these theories, more and more children are being negatively impacted by this condition.  In the meantime, moms of affected children who want to get pregnant with another child and women who have never conceived ask what can be done to increase the chances of having a healthy baby. Instead of waiting for new guidelines or official policy changes to be issued by the Centers for Disease Control (CDC) or the American Academy of Pediatrics, savvy individuals are examining the published scientific research as well as listening to parents who have improved their children’s condition and coming up with new strategies for carrying, birthing, and raising healthier children.  

During the last decade, as the debate has raged regarding the causes of autism, one organization: the Autism Research Institute has been gathering experts from around the world to brainstorm and conduct research on the underlying metabolic dysfunctions associated with autism as well as safe and effective interventions to treat this condition. 

Dr. Bernie Rimland, the founder of the Autism Research Institute and cofounder of DAN!” instilled in this group a sense of urgency to focus on solutions that would improve the lives of children now (as opposed to research that would only have relevance for future generations.)   As a result of Dr. Rimland’s  vision, these meetings, subsequent research,  clinical  application and parents following through with what is now termed the “biomedical approach”, many children previously diagnosed on the spectrum have improved and in some instances recovered from autism.

Counterfeit Law, Part Three: Houdini Horton

By Martin Walker 

In the first part of Counterfeit Law I looked at the verdict of the General Medical Council's Fitness to Practice Panel in the case of Dr Wakefield, Professor Murch and Professor Walker-Smith, and what followed it. In part two I looked at the evidence given by the expert witnesses in relation to what the prosecution claimed was research carried out on the twelve autistic children cited in the Lancet paper. There is no doubt that these claims were the centre of the case, however, this kernel was deceptively wrapped in a mass of lesser charges like a wood hidden by the trees.

All these subtle and apparently lesser strands of the case changed and metamorphosed during the hearing as the historical circumstances and present day evidence came together. These cocooning lesser charges were always very important because they added a taint of deceitfulness, dishonesty and in one instance apparent stupidity to the character of otherwise honourable professionals; they helped uphold the central charge of experimenting on autistic children.

The peripheral issues in the hearing were: 'the lack of declared conflict of interest in the Lancet paper' (1) , the 'blood samples taken from children', 'research ethics committee approval for the Lancet paper 'study' and 'the administration of Transfer Factor'. The charges around these issues might be termed 'padding', for if looked at individually we see that they could hardly exist as stand-alone charges, it is only when they satellite around more major charges that they gather weight and energy (2). None of the arguments in the whole 'Wakefield affair ' changed more organically or showed such dissonance as those around the suggested undeclared conflict of interest held by Dr Wakefield at the time of the publication of the Lancet paper and none it transpired could have been so easily refuted in a court of law or a genuine enquiry by the unfolding evidence. This last part of Counterfeit Law looks at the conflict of interest issue and the role of Dr Richard Horton, editor of the Lancet medical journal.

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