Many of us in the autism community marvel at the fact that medical experts can tell us nothing of significance about autism. They spend most of their time in denial. They don't know if the rate is really increasing. They don't know what causes it. They aren't sure how to effectively treat it. They admit there is no known cure. And no one has an idea how to prevent it. I can't think of any other serious health problem affecting as many children as autism does about which so little is known. The fact that hundreds of thousands of children now have this once rare disorder should make autism a national health care emergency. We should be scrambling for answers, but we're not.
Being clueless hasn't stopped authorities from denouncing those who link vaccines and autism or those using biomedical therapies to recover kids. Last month two interesting studies, one in the U.S. and one in Britain, were released simultaneously. Incredibly, they both had the same findings: KIDS WITH AUTISM HAVE NO MORE GASTROINTESTINAL PROBLEMS THAN TYPICALLY DEVELOPING CHILDREN DO.
The journal Pediatrics had the story, Incidence of Gastrointestinal Symptoms in Children With Autism: A Population-Based Study which reported on a study from the Mayo Clinic:
"No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category.
"Conclusion: As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrolintestinal symptoms in children with autism."
Important news sources in the U.S. likewise reported on the Mayo study.
The New York Times: Restrictive Diets May Not Be Appropriate for Children With Autism (HERE) "Researchers at the Mayo Clinic reviewed the medical records of over 100 autistic children over an 18-year period and compared them to more than 200 children without the disorder. The scientists found no differences in the overall frequency of gastrointestinal problems reported by the two groups, though the autistic children suffered more frequently from bouts of constipation and were more likely to be picky eaters who had difficulty gaining weight."
WebMD: GI Problems and Autism: No Link Found (HERE)
"Now, a new study from Mayo Clinic in Rochester, Minn., has found no apparent overall link between GI disorders and autism, although the researcher did find some individual GI problems are more common in children with autism.
"[The study] compared 121 children with the disorder to a control group of 242 age-matched children without a diagnosis of autism, following them for a median (half longer, half less) of about 18 years. The children were all residents of Olmstead County, Minn.
"For years, a suspected link between gastrointestinal problems and autism has been debated, with medical reports describing GI symptoms in up to 84% of children with the developmental disorder."
NBC Today Show: (HERE) Dr. Nancy Snyderman was in Aspen Colorado, but took time to proclaim, The findings are very conclusive: "There is no link between illness in the gut and the signs and symptoms we see in autism. Constipation may be more common but that's just because autistic kids may like a limited diet."
The findings of this study came as a stunning surprise to many parents living with chronically ill autistic children. The study conclusions are also directly challenged by lots of previous research. I did a quick search to see what's been done and it was overwhelming. These weren't the wild claims of ignorant parents; these were studies published in professional journals. Here is just a sample:
From the Journal of Pediatrics in 1999: Gastrointestinal abnormalities in children with autistic disorder. (HERE)
"Unrecognized gastrointestinal disorders, especially reflux esophagitis and disaccharide malabsorption, may contribute to the behavioral problems of the non-verbal autistic patients."
In 2005, the Journal of Medical Microbiology: Differences between the gut microflora of children with autistic spectrum disorders and that of healthy children (HERE). "Children with autistic spectrum disorders (ASDs) tend to suffer from severe gastrointestinal problems. Such symptoms may be due to a disruption of the indigenous gut flora promoting the overgrowth of potentially pathogenic micro-organisms."
And I also found research from the Infectious Diseases Society of America in 2002 titled, Gastrointestinal Microflora Studies in Late‐Onset Autism (HERE) There were lots of impressive names and prestigious institutions connected with these findings. A lot of research must have gone into this report which concluded, "These studies demonstrate significant alterations in the upper and lower intestinal flora of children with late‐onset autism and may provide insights into the nature of this disorder."
Suddenly however, thanks to one small study in the U.S., we can forget about all this research. Rather than conclude that these new findings challenge many previous studies and more research is needed on this important issue, it seems that, in the word of Nancy Snyderman, "the findings are very conclusive."
I did find an article that mentioned the limitations of the Mayo Clinic study. In the Medpage Today story, Most GI Problems Are Not More Common in Autism (HERE), it was reported, "The study authors acknowledged some limitations of the study, including the retrospective design, use of an almost all-white population, and the failure to assess the duration, severity, and recurrence of GI symptoms."
That last point especially got my attention. The researchers failed to "assess the duration, severity, and recurrence of GI symptoms"? Isn't that what the whole study was about? How could they possibly come to definite conclusions if they didn't have any in-depth information?
What does it matter?
Snyderman and others are using the findings from the Mayo study to trash certain treatments that many parents say are recovering their autistic children. If children don't really have any gastrointestinal problems related to their autism, then parents using special diets and supplements are wasting their time.
Snyderman said that "there no reason to" have your child on a restrictive diet or buy extra vitamins or supplements,
And in the New York Times story we were told, "Many parents of autistic children have put their children on strict gluten-free or dairy-free diets, convinced that gastrointestinal problems are an underlying cause of the disorder. But a new study suggests the complicated food regimens may not be warranted." The Times cited the paper’s first author, Dr. Samar H. Ibrahim, who said, 'There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism.'
Seeing that the Mayo study was being used to dismiss dietary intervention, one has to wonder what other impact it might have. Will it be used to challenge parents who have cases pending in Vaccine Court where they allege that vaccines have caused their child's autism and GI problems?
I asked Judy Converse for her opinion on this latest study. Judy has worked with autistic children for years and has seen great improvement with changes in diet. Judy is the author of Special-Needs Kids Eat Right: Strategies to Help Kids on the Autism Spectrum Focus, Learn, and Thrive (HERE) and she's a registered dietitian with a master of public health degree and undergraduate degree in nutrition. Judy wrote. "This study is not very useful. Just as the authors acknowledge, it is weakened by th its retrospective design - because there is no real--time data to look at. ...The real problem here is that it only looked at one parameter of a typical nutrition assessment or GI work up; and, it used a potentially unreliable source for that paramenter." She went on to criticize the limited research that failed to include all the necessary data to make any type of reputable conclusions.
The British study
Also in July came a study from Bristol in England that coincidentally said the same thing.
The early stool patterns of young children with autistic spectrum disorder by B Sandhu, C Steer, J Golding, A Emond of the University of Bristol:(HERE)
Conclusions: During the first 42 months of life, ASD children had a stool pattern that was very similar to that of other children, apart from a slight increase in stool frequency at 30 and 42 months. There were no symptoms to support the hypothesis that ASD children had enterocolitis.
Reuters published the report, Autism not tied to bowel movement patterns by David Douglas: (HERE)
"Despite some reports to the contrary, children with autistic spectrum disorders do not have bowel movement patterns that suggest gastrointestinal problems, UK researchers report.
"Autistic spectrum disorders are a group of developmental conditions that hinder people's ability to communicate and build relationships. Previous studies, though inconclusive, "have described gastrointestinal symptoms in children with autism," Dr. Alan Emonds, of the Center for Child and Adolescent Health, Bristol , and colleagues note in their study in the journal Archives of Disease in Childhood.
"However, based on their results, ’The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population,’ Emond told Reuters Health.
"Emond's team came to this conclusion after studying data from 78 children recognized as having autistic spectrum disorders and 12,906 other children without such disorders."
What reporter Douglas and the Bristol study publication failed to tell us was that researcher Alan Emond has his own reasons for wanting to show that MMR is safe. John Stone wrote about Emond's conflicts including the fact that he also serves on the
the UK ’s Joint Committee on Vaccination and Immunisation. (John also included a list of the subsequent papers that either replicated or supported Wakefield's link between autism and bowel disease.) (HERE)
The JCVI decides the UK's vaccination policy and it was recently given sole legal power by the New Labour Government. (HERE) In 1988 the JCVI approved defective MMR vaccines and failed to call for withdrawal when large numbers of British children were seriously injured.
Emond has been active dismissing damage from the MMR at same time he covers up his own ties to the controversy. In addition, his research on bowel disease and autism reviewed medical data many years old for which no laboratory tests are available and which was also poorly constructed.
This is a much bigger issue in Britain than in the U.S. because of research published in 1998 in the medical journal Lancet. Lead author Dr. Andrew Wakefield reported on 12 children who had developed autism and bowel disease following MMR vaccination. While thimerosal-containing vaccines have long been the focus here, the controversy in Britain rages over the combined live-virus vaccine for mumps, measles and rubella. Wakefield labeled this a new disease, autistic enterocolitis. He concluded, "We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after mumps, measles, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine."
Wakefield came under massive attack for his findings which continue to this day. He's been blamed for a subsequent decline in the vaccination rate in Britain and has been criticized for having conflicts of interest. In March 2004, an investigation by the General Medical Council in Britain was begun against Wakefield and two former colleagues, charging them with professional misconduct.
I couldn't help but think of the video from Britain, Selective Hearing, Brian Deer and the GMC. In it we hear from the parents of the Lancet study children. They're strong in their defense of Wakefield and critical of a system that has ignored his findings. They talk about their children's health problems and the care they were given by Wakefield and the other doctors. They report that the GMC has not included them in their investigation of Wakefield . Not one parent of the children involved in the study has ever complained about the treatment their child received at the Royal Free Hospital .
Incredibly, the Bristol study failed to focus on the children who have autism and bowel disease. On this video we hear about children in pain with severe gastrointestinal problems. Allison Edwards talks about her son who regressed after the MMR and is now totally dependent. Heather Edwards describes how her son had to have his bowel removed while we see a photo of the colostomy bag he has to wear. His mother tells how he was "a normal, healthy baby up to the age of 13 months." Then he received the MMR and had an immediate reaction. The next morning she went to wake him and found him having severe diarrhea which lasted for five days. His problems only grew worse and he was eventually diagnosed bowel disease resulting in the removal of his colon. Isabella Thomas speaks about the measles virus--same strain as used in the MMR--that has been found in her children's bowels and blood.
Bill Welsh, President of the Autism Treatment Trust in Edinburgh, Scotland labeled the Bristol study “worthless and misleading.“ He said that no children were clinically examined in this study, especially those children who were normally developing and then regressed into autism. He furthermore pointed to the blatant conflicts of one of the authors which should call the whole study into question.
There are thousands of parents who report that their kids were typical healthy children until they regressed into autism and developed gastrointestinal problems. Why wasn't there a study done looking at this particular group?
And why isn't anyone interested in looking at the kids who were severely autistic but who've make incredible gains after being on a regimen of diet and supplements?
And what about all those doctors everywhere treating autistic kids for their concomitant bowel disease? Are we to believe that they're seeing these patients for imaginery illnesses?
Phony studies designed to protect the pharmaceutical industry and health care officials will never settle this controversy. As much as people like Alan Emond and Nancy Snyderman like to pretend that this is just about the science, in truth it’s always been about who’ll be held responsible if it’s clearly shown that a generation of children has been damaged by unsafe vaccines.
I keep going back to the words of Dr. Peter Fletcher, former Chief Scientific Officer at the UK's Department of Health, (HERE) He said that if it is proven that the MMR causes autism and bowel disease in children, ‘the refusal by governments to evaluate the risks properly will make this one of the greatest scandals in medical history.
" 'There are very powerful people in positions of great authority in Britain and elsewhere who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves.’
Dr. Fletcher also said that he found ”‘this official complacency utterly inexplicable’ in the light of an explosive worldwide increase in regressive autism and inflammatory bowel disease in children, which was first linked to the live measles virus in the MMR jab by clinical researcher Dr Andrew Wakefield in 1998."
Those ‘very powerful people’ have no choice but to continue the lies.
Anne Dachel is Media Editor for Age of Autism.