Autism alert
 Cheryl Gaudino and her son Ryan. (Photo by Mark Stockwell) |
BY GLORIA LaBOUNTY / SUN CHRONICLE STAFF
Cheryl Gaudino is not sure why her son Ryan went from the vibrant, healthy newborn he was in 1996 to the child who began emerging the following year.
Three days after getting his MMR vaccination for measles, mumps and rubella, Ryan broke out in lesions that could have signaled a reaction or an infection.
Ryan was never the same. He cried constantly, was listless, and abandoned any babbling he had been doing. He had chronic diarrhea, and chronic infections.
Eventually, Ryan was diagnosed with autism, a developmental disorder that can range from mild to severe and that can impair social interaction and communication.
His mother believes he reacted to the MMR, but does not know if the vaccine caused or contributed to his autism. After doing a lot of research, she learned that a host of other issues can play a role, including diet, gastric disturbances and nutritional imbalances as well as the mercury and the viruses in some vaccines.
She had her son tested for heavy metals, nutritional imbalances and food sensitivities, had him treated to flush lead out of his system, and put him on a restricted diet that avoids foods he can't tolerate. He is now on anti-fungal medication, and vitamin and mineral supplements to offset his deficiencies.
``He is doing wonderful,'' Gaudino said of Ryan, who is now 6 and thriving in a program for children with autism in the North Attleboro public school system.
Her approach to her son's autism is one that a growing number of parents are pursuing as theories take hold on the role that vaccines, toxins, medications and diet play in autism, a disorder that is being diagnosed at increasing rates.
The numbers are growing so rapidly that some experts in the field call it an epidemic. Statistics are difficult to pin down because the methods of reporting autism vary among organizations and government agencies. Figures differ based on how autism is classified, what age groups are included, and whether related disorders are part of the counts.
The Autism Society of America, founded in 1965 by parents and now boasting 20,000 members, says statistics from the U.S. Department of Education and other government agencies indicate that autism is growing at a rate of 10-17 percent.
An estimated 1.5 million Americans are affected, the society says, and at the current rate, four million will have autism in the next decade.
The society considers autism to be a national health emergency costing $90 billion a year in treatment, education and services. The Centers for Disease Control say autism affects an estimated two to six of every 1,000 Americans, and other agencies have estimated that one in 250 children, or even one in every 150 under the age of 10, may have autism or a related disorder.
Rising rates being felt
The rising rates are being felt in local schools. In North Attleboro, for instance, special education director Margo Brissette said she is not sure if autism has become an epidemic, but there definitely has been a significant increase.
In 1998, the school system's early learning center had only one child officially diagnosed by the medical field, she said, but this year a total of 28 students are considered to be on the autism spectrum disorder. That includes 10 with official diagnoses, and 18 who do not have a diagnosis but who have many of the characteristics of the disorder and therefore are receiving services.
They are considered to have Pervasive Developmental Disorder or PDD, a category that is included in autism statistics and reports, and that can lead to the figures being misconstrued, Brissette said.
The numbers on autism are also high in Mansfield, where special education director Pat Cosgrove said the system is serving 51 students with the disorder, a very high percentage compared to the national average, and high for a student population of 4,730.
The reason, she said, may be that parents intentionally move into town because of the quality of the school system's autism program.
Some medical and scientific experts say the increase in autism nationally is due to more awareness, better diagnostic methods that are identifying more children, and new classifications that include related disorders in the same category. But others say those factors cannot account for the skyrocketing rates.
While most experts agree that autism starts with a genetic predisposition, a legion of doctors, parents and scientists point to environmental factors, including toxins like mercury that have been used in some childhood vaccines, and the introduction of viruses through vaccines to children who are susceptible to complications.
According to these theories, a combination of factors are involved, including allergies, overuse of antibiotics, a weakened immune system that can lead to gastrointestinal disorders and inflammation, and reduced absorption of nutrients. Add to that the toxins such as mercury from vaccines and other sources, and viruses in some vaccines, particularly multiple ones like the MMR, and conditions can be present that affect the brain and produce symptoms characteristic of autism.
`Strikingly similar'
The Autism Research Consortium, a group of researchers that includes several prominent doctors in the Boston area, says the characteristics of autism and mercury poisoning are ``strikingly similar,'' and many cases of autism may actually be a form of poisoning by the toxic metal that can cause immune, sensory, neurological, motor and behavioral dysfunction.
Many fingers have pointed to thimerosal, a mercury-based preservative that has been used in various vaccines, including the hepatitis B shot given by hospitals to newborns. By 1999, the year that congressional hearings began on the skyrocketing rates of autism and the suspicions about mercury and other toxins, the Food and Drug Administration ordered drug manufacturers to begin eliminating mercury from childhood vaccines, a move that was supported by the American Academy of Pediatrics.
Infectious disease specialists and government health officials and agencies as well as the AAP continue to support vaccination policies, and urge parents and doctors to abide by them. They say that studies and evidence to date do not support an association between autism and either thimerosal or vaccines like the MMR, which never contained the preservative. They recommend that parents stick to the prescribed schedule of 11 childhood vaccines and up to 20 shots by age 2, saying there is no evidence that the schedule overloads a child's immune system, even if some children get up to five shots in one office visit.
But they do caution that allergies, immune system diseases and other sicknesses can interact with vaccines and cause health problems.
Links not ruled out
Although links between vaccines and autism have not been proven, they also have not ruled them out. In October 2001 the Institute of Medicine said it is biologically plausible that mercury-containing vaccines could cause injury to the brain but too few studies have been done to prove that conclusively. It did, however, recommend that drug companies take all mercury out of vaccines and over-the-counter drugs.
A number of studies by government agencies and private groups are under way to investigate theories and claims surrounding autism, particularly those of parents who say that their children were developing normally until receiving vaccines.
In Massachusetts, hepatitis B vaccines for children that are distributed to doctors and hospitals by the state have been free of thimerosal since the summer of 2000, and DtaP vaccines for diphtheria, pertussis and tetanus have been free of the preservative since spring of 2001, according to the state Department of Public Health.
Thimerosal is still used in flu vaccines and in DT and Td vaccines for diphtheria and tetanus that are given to children age 7 and older, but manufacturers are working to remove it.
Stephanie Schaeur, an epidemiologist in the state department's immunization program, said some manufacturers are still using thimerosal, but the state does not obtain its vaccines from them.
The MMR never contained thimerosal, but parents who are concerned about multiple viruses being injected at the same time sometimes ask pediatricians if the vaccines can be given as separate shots.
MMR in combination
Schauer said MMR vaccines distributed by the state are in combination, and any doctors who choose to administer them separately would have to get the vaccines on their own. The theory that separate shots are better is just that, a theory, she said, and no data has been produced to suggest the combination shots can cause problems.
The push now, she said, is on even more combination vaccines to reduce the number of shots that children get, which in turn saves time, money, visits to the doctor's office, and trauma for the child. A new vaccine currently being licensed has five vaccines in one, she said.
That concerns parents like Gaudino. She is not opposed to vaccinations, and believes that children need to be immunized. What she does advocate is that parents be informed.
``We are not anti-vaccine, but not with thimerosal, not five at a time, not when the kid is on antibiotics,'' she said.
That feeling is shared by Joanne McCarthy of North Attleboro. She said her son Derek, who is now 4, was initially a happy baby who slept through the night and ate everything in sight. But he had frequent ear infections, and after getting immunizations, he began screaming, hitting, toe-walking, flapping his hands, and spinning everything. He was no longer eating well, and had chronic diarrhea.
She took him to Hasbro Children's Hospital, where he was diagnosed with autism.
He went into the Applied Behavioral Analysis program for autism in the North Attleboro school system, and started to respond, but had constant abdominal discomfort. So she took him to Hopewell Autism Initiative in Mattapoisett, had him tested, and found that his blood showed high levels of lead, and the presence of mercury. He subsequently was given treatments to remove the toxins. McCarthy is not sure what caused her son's autism, but suspects vaccines in combination with antibiotics he took for ear infections that in turn may have impacted his immune system.
Aggressive approach
Medical providers who attest to environmental causes offer treatment like detoxification therapy to cleanse a child's system of heavy metals, diets that limit sugars, dairy products, wheat and other foods, plus anti-fungal drugs for yeast overgrowth of the intestinal tract, and nutritional supplements to address deficiencies.
That is the approach at Hopewell Autism Initiative in Mattapoisett, where Joanne took her son. Pamela Ferro, a registered nurse and one of the directors, said a detailed medical history is compiled, tests are ordered like urine and stool analysis and blood work, then treatment is prescribed.
She debunks the claim that autism is simply a genetic disorder, because if it were, there would not be an epidemic.
`` It is an epidemic, and no doubt there's an environmental trigger,'' Ferro said. `` People should be screaming from the rooftops. No way do genetics explain it.''
The bulk of the children she sees had a typical development, then regressed, and began having behavioral problems and physical symptoms. Many show signs of parasites, bacteria, yeast overgrowth, nutritional imbalances or deficiencies. Basically, Ferro said, their bodies do not have what they need to function, or have an overabundance of what they do not need. Often, she said, their histories show evidence of viral infection, a lot of antibiotic use, and vaccines on top of it all.
When heavy metals are detected, treatment can include chelation, which involves using an approved medication for removing toxins from the body by binding the heavy metals and flushing them out through the kidneys. Nutritional supplements can also be prescribed, and anti-fungal medications if needed.
Most kids get better, Ferro said, and some lose their diagnosis of autism.
More medical professionals are now open to these theories, Ferro said, and she hopes to promote even more awareness through a conference Hopewell is sponsoring the last weekend in March. The event will include a general conference for the public, and workshops for health care providers.
The event will feature Doctor Jaquelyn McCandles, a psychiatrist, author and grandmother of a child with autism who wrote ``Children with Starving Brains,'' a book widely read by parents.
McCandles says the autism epidemic is worldwide, with a 26 percent increase in the number of cases from 1998 to 1999 among school-age children.
While the causes are being widely debated, most experts gree that they involve a combination of genetic and environmental factors, she said. Genetics set the stage, she said, and environmental factors like toxic chemicals, heavy metals and vaccines are the triggers.
Not all autism experts are convinced. Joseph Ricciardi, a clinical psychologist and director of clinical services for early childhood education at May Institute in Norwood, a treatment center for children with autism, said these theories are not being written off by the medical community, but they also have not been proven, and therefore warrant study.
His feeling is that as long as alternative treatments do not interfere with established services and approaches to autism, there can be no harm in trying them, but with the proper medical supervision.
Margo Brissette, special education director in North Attleboro, said she deals with parents who are convinced that their child's autism is linked to some kind of toxicity. She is not sure if mercury is a factor, but she said, `` I do believe there are some environmental issues involved in autism.''
Any alternative treatment should go hand in hand with established programs, Brissette said. Otherwise, she said, children lose out on academic and social benefits.
Parents like Gaudino believe in these programs because they have seen the results, but they also believe in other approaches. Since going on the restricted diet, she said, her son is more receptive, more responsive, and more imaginative.
``He's like a different kid,'' Gaudino said.
The family lives on whole foods, and she makes everything from scratch. She does not give her son nitrates, food dyes or preservatives. He eats selected carbohydrates, only organic meats and vegetables, and very little sugar.
She calls it `` bare bones, back to the basics.'' It's expensive and time-consuming, she said, but `` it's worth it.'' Any child can benefit from these interventions, Gaudino said.
`` All you can do is try,'' she said. `` At least they are getting nutritious food.''
