Families and practitioners divided over cause, diagnosis and treatments
By Joan Trossman Bien 03/18/2010
A flashpoint for familiesAutism, the syndrome that seems to appear suddenly, like a thief in the night, and rob a developing child of the ability to communicate, has become an unlikely topic for headlines. The Centers for Disease Control says autism now affects one in 110 American children. Once considered an extremely rare condition, the rise in the number of cases over the past 20 years has riveted the public’s attention. This high-profile syndrome has grabbed the national spotlight partly due to the celebrity-driven controversy over treatment and causes.
The National Institute of Neurological Disorders and Strokes defines the condition: “Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Although autism varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Males are four times more likely to have ASD than females.”
ASD families live in a different reality than other families. The unrelenting stress and financial pressures are exhausting and will try the solidarity of any family. Yet, within that community, instead of commonality and mutual emotional support, there exists a startling amount of disagreement and conflict among families.
The ASD families and treatment providers have divided themselves into two distinct groups: the conventional camp of the mainstream medical community versus Jenny McCarthy’s group, called Generation Rescue. The latter, an arm of the controversial Autism Research Institute (ARI), supports an aggressive alternative approach to treatment, and blames the MMR (measles, mumps, rubella) vaccine as the cause of autism. They also insist that certain bowel maladies are part and parcel of the disorder. They say those medical issues may, in fact, be the cause of the autistic behavior and that a special diet will ease the bowel disease and the autistic symptoms will then disappear.
This would not be of much interest to the public at large except for one aspect of the maverick group’s core beliefs. In a recent issue of Time magazine, McCarthy points to several aspects of vaccines as the causes of autism. “We don’t believe it’s only the mercury,” McCarthy said. “The viruses in the vaccines themselves can be causing it, too. Understand that we are not an anti-vaccine group. We are demanding safe vaccines.”
As more parents refuse to vaccinate their children, even the vaccinated group becomes more vulnerable to a higher risk of contracting measles. This is due to a reduction in “herd immunity” wherein a virus, which must travel from host to host in order to survive, runs out of hosts and disappears. Thus, without herd immunity, the entire population is put at a greater risk.
McCarthy addressed this issue. “I do believe, sadly, it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe,” McCarthy said. “If the vaccine companies are not listening to us, it’s their f____ing fault that the diseases are coming back.”
Parents just want to know why
In early February, the British medical journal Lancet took the highly unusual step of retracting a study that it had published in 1998. That study by Dr. Andrew Wakefield drew a link between the onset of autism and the MMR vaccine, pointing to the mercury in the vaccine’s preservative as the possible culprit and saying the link needed further study. Wakefield also claimed that a serious gastrointestinal condition often existed side by side with autism.
On March 12, the federal “vaccine court” ruled that the preservative in vaccines does not cause autism. The court said the parents did not show that “the exquisitely small amounts of mercury” in vaccines that actually reach the brain can cause such a profound disorder when far larger amounts from other sources do not. The ruling, which is the second such federal court decision, can be appealed.
Locally, Dr. Eric Sletten runs Sletten Wellness Medical Center in Ventura. The center is based on the principles of the alternative group Defeat Autism Now (DAN), which is another arm of ARI. So-called DAN doctors, who only need some sort of official license that can be a doctor of naturopathy or a nurse practitioner or a physician's assistant, follow a distinct protocol that is based on unconventional treatments or unconventional uses of established treatments.
The removal of Wakefield’s study has infuriated the alternative treatment community. Sletten, a medical doctor, said the retraction of the study is in itself suspect. “This move by Lancet does nothing to change opinion about the safety of the MMR vaccine,” Sletten said. “In my opinion, the retraction of Dr. Wakefield’s study is a political action for which the timing and motivation are suspicious. For it has been 12 years since the peer-reviewed study was accepted for publication. Why now?”
Sletten added, “Clearly, his pioneering work paved the way for subsequent research that strives to understand the common gut dysfunction of these unfortunate kids. I can only conclude that this action against him is fueled by some larger agenda to squelch this scientific inquiry.”
McCarthy’s official response to the retraction of Wakefield’s study was posted on the Generation Rescue Web site. “It is our most sincere belief that Dr. Wakefield and parents of children with autism around the world are being subjected to a remarkable media campaign engineered by vaccine manufacturers reporting on the retraction …”
The cause of autism remains a sharp point of disagreement. Dr. Steve Graff is the director of the Tri-Counties Regional Center, which serves people with disabilities in Ventura County. He described why families may be looking for alternative providers.
“People want an answer for the cause of autism,” Graff said. “And people don’t trust a lot of doctors. Doctors have been the ones that for years, they used to say there is nothing wrong with your kid, he is just going to be a late talker, don’t worry about it. So this watchful waiting, which is very typical in medical practice, in autism you really want to jump on it quickly.”
This idea that parents don’t trust doctors was echoed by parent Brendan Kelso, the father of a 6-year-old who has been diagnosed with autism. Kelso said he was frustrated by the lack of urgency expressed by his doctor. “We suspected something at 18 months and asked our pediatrician, point blank, ‘Do you see autism?’ In which he said, ‘No, he’s just a boy. They develop late.’ If anything, I have learned that doctors are not near as smart as their degrees lead them to be; trust your gut, and never have them tell you, ‘Just wait and see.’ ”
The DAN website declares: “Autism is a biomedical disorder. Specifically, DAN doctors feel that autism is a disorder caused by a combination of lowered immune response, external toxins from vaccines and other sources, and problems caused by certain foods.”
The training to become a DAN practitioner is described on the ARI website. The requirements are to attend one conference, pay an annual fee of $250, sign a DAN philosophy statement, and continue to attend one seminar every two years. There is no certification involved, but this entitles the practitioner to be included on the ARI official list. Some, including Sletten, have attended many of the conferences.
Does any treatment really work?The given basis for the DAN protocol is to reduce inflammation and toxins. Some of these treatments are relatively harmless, such as restricted diets. Other treatments are more controversial, like the use of chelators. Chelation is often administered by IV and rids the body of heavy metals. The operative theory is that mercury and aluminum need to be purged from the body. The vaccine preservative thimerosal contains small amounts of those ingredients but thimerosal was removed from the MMR vaccine years ago.
Graff disputed the notion that chelation is harmless. “Things like chelation, it can be very dangerous. Thankfully, there has only been one case where a kid has died (in 2005),” Graff said. “It doesn’t just scrape out the mercury that is in your body. There are all kinds of heavy metals that you do need. Everyone needs copper, zinc, selenium; they are essential for your health.”
In fact, a long-planned federal study of chelators was suddenly called off in 2008. The National Institute of Mental Health (NIMH) backed away from conducting the study after animal trials linked one chelation treatment to brain damage in rats. NIMH issued a statement saying, “The Board determined that there was no clear evidence for direct benefit to children who would participate in the chelation trial and that the study presents more than a minimal risk.”
In a response to the child’s death, the ARI website posted this: “The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.”
Another controversial treatment offered by many DAN doctors is hyperbaric oxygen therapy, which they say will reduce inflammation. Hyperbaric chambers have been used successfully for decades to help deep-sea divers who develop the bends (decompression sickness).
Kelso said he provided hyperbaric oxygen therapy to his son but at great cost to his family. “The closest hyperbaric oxygen therapy is 120 miles from our house. We have to go to 40 sessions at $150 a session. With hotels, gas, food and sessions, it was close to $10,000 over six weeks.”
DAN relies heavily on the anecdotal reports of improvement noted by parents. The treatment that is given the most credit by parents is the gluten-free (wheat), casein-free (dairy) diet. The diet is intended to relieve inflammation.
The website explains the danger of the forbidden classes of food: “Certain peptides from gluten and casein can bind to opioid-receptors in the brain and can have a potent effect on behavior (like heroin or morphine). … Like opioids, they can be highly addictive.”
The efficacy of this restricted diet is anecdotal. Graff said he has heard good and bad from parents. “If these diets really, really worked, we would be seeing huge changes in the population of kids with autism because I know a heck of a lot of families who have told me they tried diets.”
“Parents who do these diets spend much more time with their children and are much more involved with their children,” Graff said. “That, in and of itself, has actually been a finding that has been associated with improvement in the behavior of children with autism.”
Dr. Kenneth Saul is a pediatrician in Thousand Oaks who, unlike most of his peers, accepts children with autism to his practice. The reason most practices reject autism patients is the lack of reimbursement from insurance.
Saul coordinates the various therapies and practitioners needed for the child. “I do it because I feel somebody has to,” Saul said. “My dilemma is that good autistic care is extremely expensive. I think [it’s] too expensive, and insurance rarely covers it. I’m talking about the intense behavioral therapy, any kind of non-alternative therapy. I have seen the intense behavioral therapy almost always work some, occasionally work miracles, but usually it is baby steps. I do have problems with these autistic centers being so ungodly expensive,” Saul said. “It seems like some of these autistic specialists are taking advantage of the fragile psyche of the autistic families.”
Claims of recovery from an incurable disorderDAN doctors offer immediate action even before a complete diagnosis has been made, likely dramatic improvement and, in some cases, a cure. Conventional medicine is quite specific that autism is incurable but can be managed.
Graff concedes that what the DAN doctors offer is enticing. “What parent wants to sit there and feel that things are hopeless and they can’t do a thing? Or they are told there is help, it is very hard, it is time-consuming, it is labor-intensive, it is going to take years, and we’ll see some improvement. They will ask why I’m not using the word ‘cure.’ ”
“But if you are meeting someone who is a licensed, experienced medical professional who is saying they have research and protocol and thousands of people are doing this, we are very serious, we’re intelligent, educated people and this is the answer for you, that is powerful and I can understand why someone would be attracted to it,” Graff said.
Saul said he, too, sees the appeal of alternative therapy. “It seems like the parents want so badly for these things to work that sometimes they think it works when I don’t really see it,” Saul said. “I am very open-minded. If I really saw success with people sprinkling fairy dust on their head, I would run with it.”
Yet parents are absolutely convinced their own children have been helped. Joanne Allor has a 7-year-old son who was diagnosed at age 4 as high-functioning autism.
“We have cleaned up his diet and gone gluten-free, casein-free then added in digestive enzymes. The biggest ‘wows’ we got were from adding in methyl B-12 shots, IV chelation therapy and treating his gut bacteria with probiotic, zinc and a natural antimicrobial product,” Allor said. “These treatments boosted his language skills, eye contact, cognition and social skills. He wouldn’t be where he is at today without biomedical treatments. I believe he will soon lose his autism diagnosis.”
Even Sletten, who discovered the DAN method while searching for treatment for his own child with autism, believes that, against the odds, his son has recovered. After finding out about the Autism Research Institute online and attending a seminar, Sletten said he was willing to give the protocol a try.
“He responded to almost all of the interventions, and the glowing reports of this unprecedented recovery were documented by the unbiased reports of his various therapists,” Sletten said.
Saul said he has seen parents in his practice also say the DAN treatments cured their child. He has a theory about so many astonishing recoveries.
“Autism is a spectrum disease,” Saul said. “The label ‘autism’ is often used on kids that don’t really have autism; they are in the spectrum that just includes speech delay and behavioral problems. Those kids, I see once they are 6 years old, they seem like normal kids. So the question is, was autism really cured or did they not have autism in the first place?”
Graff has another explanation for such rapid progress. “A lot of the symptoms that we see in the children with autism seem to decrease as they get older. That’s kids without any intervention,” Graff said. “Most kids are going to school, they are getting special education. They do several treatments at the same time and you can’t know which one worked.”
Parents need to believe that their child will someday be much better. “You don’t want to take away people’s hope, and anecdotally you can always find at least one person who says they have benefited from something,” Graff said. “I’m happy to see kids improve in whatever way. I’m not going to question a miracle.”
The battles within the autism community show no signs of abating. Parents are left to sort out the myriad of opposing values by themselves. Yet most families do figure out how best to approach this puzzle of autism and how to provide what works for their child.