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!
On Mar 29, 2010 ABC13 in Houston had the story, New autism study in Houston (SEE VIDEO HERE) . The story started off saying, "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."
"Doctors have suspected" and the FDA is fast-tracking it? This got my attention right off. Wasn't this supposed to be a dead issue? Hadn't the entire medical community already lined up against this?
On ABC13, we're told about Zoe, a five year old autistic girl who wasn't very verbal but now is "so different." She's talking after taking part in trials for an experimental autism drug that helps digest food. Or as ABC13 put it, "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."
And they're testing this drug all over. ABC13 reported, "Houston is one of 12 study sites and the study involves collecting stool samples from the children. In early studies of almost 500 children, few had side effects. Results will take about a year. But [Zoe's mother] believes she's seeing results already, and she hopes the study helps other children."
Mar 4, 2010 Science Daily tried to make believe that all this is related to genetics. In Gene Variant Associated With Both Autism And Gastrointestinal Dysfunction HERE, we read, "A study led by researchers at the University of Southern California (USC) and Vanderbilt University have identified a specific gene variant that links increased genetic risk for autism with gastrointestinal (GI) conditions."
So autism may be related to GI problems, but it's all of course genetic. I love the line, "While gastrointestinal conditions are common among individuals with autism, researchers have long debated whether co-occurring GI dysfunction represents a unique autism subgroup."
Suddenly GI problems are common? Science Daily went on to quote principal investigator Pat Levitt who said, "Gastrointestinal disorders don't cause autism. Autism is a disorder of brain development. However, our study is the first to bring together genetic risk for autism and co-occurring GI disorders in a way that provides a biologically plausible explanation for why they are seen together so often." "Co-occurring"? Does that mean that there are two genetic disorders that just happen to hit kids at the same time? So have there always been autistic kids around who also had chronic diarrhea/constipation/food allergies? Have doctors been missing these sick kids all these years?
Without ever using the word environmental, Science Daily said, "The study brings researchers closer to understanding the complex genetic risks for autism. However, further research is needed, as different combinations of genes are likely to result in different types of autism features."
Here's what Lisa Jo Rudy had to say about Science Daily. On her blog, Autism About she wrote, "If I'm understanding this finding correctly, on the one hand it validates claims by many members of the autism community that there really is a correlation between autism and GI disorders. On the other hand, though, it tends to invalidate some of the theories for WHY such a correlation exists. While many have insisted that the correlation relates to measles virus left in the gut after the MMR vaccine, this study suggests that the correlation is purely genetic."
So no matter what researchers discover about autism, it's all just defective genes. While the link between autism and GI issues is finally being taken seriously by researchers, it's no reason to worry. But somehow I don't think it's going to fly. We've been told that autism has always been around, just misdiagnosed. Now are we to believe that these kids have also had gut problems that doctors failed to recognize?
You'd never know that there was a Mayo study disproving all of this.
The new product to treat GI distress in autism, Curemark, is being tested on kids all over the country. (HERE) Their site said that research has shown that 70% of all autistic kids along with children with PDD could benefit from their new drug to treat stomach problems. I read, "Curemark has identified a series of biomarkers that determine which children with autism and PDD may have digestive deficiencies underlying or as a major component of their disease. Curemark has carried out an extensive clinical analysis to identify the role of secretory malfunctions of the pancreas and/or gastrointestinal tract as they may be linked to the severe behaviors seen in children with autism."
The trials on the new autism-GI drug Curemark are being conducted at top universities. And if you scroll down on the trial information, (HERE) you'll find among the publications cited:
Enterocolitis in children with developmental disorders.
Authors listed: Wakefield AJ, Anthony A, Murch SH, Thomson M, Montgomery SM, Davies S, O'Leary JJ, Berelowitz M, Walker-Smith JA.
Does any of this make sense? Andrew Wakefield is lead author?
Suddenly, a doctor recently denounced by the medical establishment is named as a key player in autism research. Obviously health experts hope that the trusting public has a very short memory.
Maybe a recent piece in BusinessWeek says it all. They published the story,
The Hunt for an Autism Drug in Jan. First-off we were told, "Armed with fresh medical insights, drug companies are redoubling their efforts to address the disease's complex causes."
I'm sure BusinessWeek covered this because of the great profit potential for any drug that could be used to treat hundreds of thousands of American children:
"From a drug-industry standpoint, the demographics of the disease are also compelling. Diagnoses among children jumped 57% from 2002 to 2006, according to the Centers for Disease Control & Prevention in Atlanta. Roughly 1 in 110 8-year-olds in the U.S. is on the autism spectrum. Just as interesting to drugmakers is the fast-growing population of adult autistics who can't be helped by the kind of intensive behavioral therapy that sometimes works on children, because their brains lack the same plasticity. One decade from now there will be seven times as many autistics entering the adult-services sector as there are today. The disorder already costs the U.S. about $35 billion per year for special education, medical care, and assisted living. If the drug industry can devise better treatments, families and society will find a way to pay."
It's hard to reconcile this imagine of an exploding epidemic of autism as shown by BusinessWeek with the dismissive attitude of officials at the Centers for Disease Control and Prevention who've never once used the word "crisis" when talking about autism and waste millions on autism gene studies. Maybe the incentive of a blockbuster drug to trreat autistic kids is the real issue.
BusinessWeek makes it clear that there's a real pressing reason to finally get serious about autism: We're about to be flooded with a population of autistic young adults we are totally unprepared for.
Their article had these graphs (click to enlarge):
Maybe the market will determine the future for autism research. Countless studies telling us NOTHING will lose their credibility when research that really addresses autism provides help for children. This may be a real turning point. It sounds like someone is actually able to do something to improve the health of autistic children. It's hard to imagine that it's really happening.
Are we to simply accept that the medical/scientific community suddenly recognizes that autism is related to GI disorders, despite having previously denied a link?
Will anyone go back to the experts who denied all of this and ask them for their reaction?
What are the chances that when the evidence overwhelms them, officials will do the same about-face concerning the link between vaccines and autism?
Do any of these people have any shame?
Anne Dachel is Media Editor of Age of Autism.