The autism mystery

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Cover Story
The autism mystery
By Ashley Tilka
Parents ask scary questions about the safety of everyday vaccines.

Nick Eilers has been quiet today. That isn't always the case.

"He hasn't even come down to get me," says his mother Jane Eilers. "That's pretty good for him."

Upstairs in the Eilerses' Ankeny home, 8-year-old Nick is with a tutor, learning about time, money, grammar and reading comprehension. It might be the end of summer, but he's busy developing and retaining basic skills so he won't be too far behind the other kids when he goes back to school. Nick might squawk when he doesn't want to do something, but it's not your typical temper tantrum.

Nick has pervasive developmental disorder - which falls into a category commonly known as autism. A growing number of children are being diagnosed with the disease, and parents like Eilers fear that a simple childhood vaccination may be the cause of the lifelong disorder.

The tall, stocky blond boy with glasses comes downstairs and fixates on the television his brothers are watching. Not an uncommon thing for a young boy to do, especially when "Thomas the Tank Engine" is on.

Eilers gives Nick a countdown from five before she turns off the TV. If she doesn't warn him, he might throw a fit. Nick is particular about his environment, and he becomes upset if things don't go as planned. His parents started wondering if something was wrong before his first birthday.

"He was very complacent," Eilers explains. "He would sit for hours content. He didn't mind being held, but he didn't seek it out either. We kept asking the doctor, 'Does your child do that?' and we always heard, 'No.'"

Nick was put into the special infant program through the Des Moines school system, where a therapist would work with him a couple of times a week. Due to a variety of other problems, the diagnosis of PDD was finally settled on when he was 4 years old.

"He became a danger to our youngest," Eilers says. "He hated it when Blake cried. He'd pull him by the feet to get him out of the crib. He just had this huge sensory overload. The crying hurt him."

Autism is a spectrum disorder, meaning it manifests itself in a variety of symptoms and behavior. There are degrees or levels of ability in the autistic spectrum, and Nick is considered high functioning. He is verbal and learning to read, and he makes eye contact and can follow directions. When a camera is pointed at him, he smiles and directs everyone else to say "cheese" with him.

The symptoms vary for each person, and may include repetitive motions, trouble following directions, lack of eye contact, hurting oneself, difficulty interacting with others or not wanting to be touched. Many describe autistic people as being locked in their own world. Some appear deaf because they don't acknowledge people or noises, though their hearing tests at normal levels. When overloaded with sensory information, some throw tantrums or become hyperactive.

In the struggle to do all they can for their children, many parents can't help wondering how their children developed this disorder. There is no definitive answer to that question. A variety of factors may come into play, including environmental factors or birth trauma.

But some parents fear vaccines are to blame. Though the idea hasn't been proven, recent research has presented evidence supporting that theory. The possibility of risk has angered parents - and they're demanding answers from the medical profession.

 



 

The vaccine link
 
Research published in 1998 by Andrew Wakefield, a doctor in England, suggests that the measles, mumps, rubella (MMR) vaccine may be partly responsible for regressive onset autism, a type of autism that suddenly occurs after a child has been developing normally.

"She was perfectly normal, and at about 18 months, we started losing her," says Dana Halvorson, a northern Iowa mother whose daughter Robyn was diagnosed with regressive autism. "By age 2, everyone thought she was deaf."

In his research, Wakefield found that some autistic children with gastrointestinal problems had a characteristic inflammatory disease of their intestine. When biopsies were taken of the sores, he found the measles virus. In recent testimony before the U.S. House Committee on Government Reform, Wakefield said, "This disease may be the source of toxic damage to the brain."

The Centers for Disease Control doesn't buy it. Its Wed site says "Current scientific evidence does not show that MMR vaccine, or any combination of vaccines, causes the development of autism, including regressive forms of autism."

Dr. Gary Gaffney, an associate professor of psychiatry in the autism and developmental disabilities clinic at the University of Iowa, agrees. "They thought that MMR was involved, but that appears not to be true, according to the research that's come out recently."

But others look to another recent study led by Dr. Vijendra Singh of Utah State University, which analyzed blood samples from autistic and non-autistic children and found a significant increase in the level of MMR antibodies and an unusual anti-measles response in the majority of the autistic children.

The antibodies attack the brain by targeting the basic building blocks of myelin, the insulating sheath that covers nerve fibers. Dr. Singh suggests that this autoimmune response, in which the body attacks itself, may be the root cause of autism.

If a close family member has an autoimmune disorder such as diabetes, rheumatoid arthritis, lupus or multiple sclerosis, the chances are greater for autism in that family.

"My mom has rheumatoid arthritis and my dad is diabetic, so that could have maybe been a red flag for us," says Halvorson. "Maybe we should have handled our kids' vaccinations differently."

Another vaccine issue involves thimerosal, an additive that was used in a number of vaccines, including those for hepatitis B, diptheria, tetanus and pertussis, and chicken pox. Thimerosol contains 50 percent ethyl mercury - an amount much higher than levels recommended by the Food and Drug Administration. It was taken out of dog vaccines in 1992, but remained in children's vaccines until last year and was only removed as "a precautionary measure," according to the CDC, which says no harmful effects have been reported from thimerosal at the doses used in vaccines, except for minor reactions.

"But if you look up what you see with mercury toxicity and line it up against autism, there are a lot of similarities," Eilers says.

Many autistic children have higher than normal levels of heavy metals in their bloodstreams. "The interesting thing is that if you look at the ingredients of the vaccine, they're loaded with (heavy metals)," says Halvorson.

Halvorson theorizes her daughter might have been overexposed to mercury due to a filling Halvorson had replaced while she was pregnant. Her other three children weren't exposed in that manner.

"My suspicion is that she might have already had some (mercury) toxicity from the filling, and when she got the vaccine, it was too much for her to handle," she says.

But though vaccines are suspect in some circles, mainstream research into vaccination issues isn't being done, according to Cedar Rapids chiropractor Dr. W. Gene Cretsinger, who works with autistic children to improve their nerve system processing.

"I know there's a concern that vaccines will be refused," he says. "The major issue is that no one knows what the effects of vaccines are at the cellular level or neurological level...there is an unwillingness from the medical community to look at those consequences and look at those issues seriously."

Rep. Dan Burton, an Indiana Republican who is Chairman of the Committee on Government Reform and the grandfather of a child with regressive onset autism, has championed legislation and hearings to get more dollars for research and to speed along lawsuits for those harmed by vaccines.

"Funding in basic and clinical research into autism needs to be expanded dramatically," he said in an April hearing. "We have an epidemic on our hands, and we in Congress need to make sure that the National Institute of Health and the CDC treat this condition like an epidemic and put their efforts into doing several things: First, to find out the causes of the epidemic. Second, to determine how to stop the epidemic in its tracks. Third, to evaluate treatment options. And, fourth, to look for a cure."

He holds the CDC and the NIH partially responsible, tells his colleagues that their flu shots contain mercury and chastises doctors who ignore their patients' concerns.

"I might have been like so many pediatricians who discounted the correlation between vaccination and the onset of fever, crying and behavioral changes," he said. "Because both of my grandchildren suffered adverse reactions to vaccines, I could not ignore the parents' pleas for help. I could not ignore their evidence."
 



 

Biomedical concerns
 
Doctors have also begun to question treatment regimens. A textbook case of autism is diagnosed when the patient is 2 to 4 years old. Then the family works with a team of doctors and therapists, including speech pathologists, occupational therapists, child psychologists and sometimes chiropractors.

"It's the basis of good academic and educational support, and medically we can treat some of the symptoms," says Gaffney.

But other professionals like Grace Percival, a pediatric psychologist with the Des Moines Pastoral Counseling Center, believe more can be done. She gets angry as she talks about diet issues.

"I'm going to get in trouble for this," Percival says. "But the medical profession is not on board. They don't believe such an issue exists, even though we have international research that says it does."

A number of autistic people have gastrointestinal problems, such as diarrhea and food allergies.

"Soy is poison in my house," says Mary Peterson at an autism support group meeting run by Percival. "When my son has soy, he will just immediately collapse at the table."

Though only limited research backs the theory, some parents of autistic children are convinced vaccines have played a role in damaging their children's digestive systems, creating an intolerance for certain foods.

"It's all intertwined," Percival explains to new support group members. She looks at things holistically. If an autistic child is acting out behaviorally, she wants to know what is in his diet that might be processed incorrectly by his diseased intestine - which might be damaged due to a vaccine - thus sending strange molecules into the bloodstream. Some children won't eat because the foods their parents unknowingly give them might be making them sick.

If you put casein, component of dairy products, into a damaged digestive system, it might not break down completely. One of the compounds formed during digestion acts like a drug, stimulating opiate receptors in the brain. "Taking a child off it is like withdrawal like he's coming off heroin," Percival says.

Scientist Jaak Panksepp proposed the idea of dietary change after he observed that autistic children had many traits in common with people addicted to opioid drugs. Addicts are often "in their own world," and exhibit behavior such as rocking; some have gastrointestinal problems. Panksepp thought autistic children might have high levels of opioids in their bodies.

The theory made sense to Halvorson and explained why her daughter had dilated pupils and couldn't sit still.

"I needed more info, so I had an allergy test done and found out she was allergic to soy, coconut, peanuts, mushrooms, mustard, etc.," she says. "The bottom line is that there were some serious problems going on with this child's gut. I was kind of glad because I finally had proof there was something going on with our daughter that we could help her with."
 



 

Will anyone help?
 
One treatment that has been successful for a number of children involves implementing a gluten-free, casein-free diet. Gluten is a protein found in many starches that's similar to casein on the molecular level.

Nick wasn't breaking those food compounds down. He was producing antibodies to attack them - as if those foods were toxins, Eilers says.

"Once we took him off those things, he was able to sit and focus," Eilers says. "We saw huge improvements in his behavior."

If it might work, why not try it? But some Iowa families have run into trouble when they ask about these treatments.

"We don't necessarily recommend that," Gaffney says about dietary changes. "If someone wants to maintain a healthy diet with vitamins, I certainly don't disagree with that. On an individual basis, some families might find (gluten-free diets) effective, but I don't know of any research at this point (to prove that)."

Dr. Kevin Took, a child psychiatrist at Blank Children's Hospital, agrees. "There is not any scientific research to support diet change," he says.

Instead, doctors pointed Eilers toward prescription drugs.

"We were told don't do (the diet)," Eilers says. "We couldn't find any support. Our doctor said, 'Lots of kids have those GI problems. Pray for him and hope for the best.' Our psychiatrist said, 'Keep him in the school program and give him Prozac and that's all you can do.'"

Many doctors advocate medication to improve some behavioral symptoms of autism, such as rigidity and compulsions. "For those kinds of problems, serotonin medicine can be helpful," Gaffney says.

But according to Eilers, there were no tests that said there was a serotonin problem with Nick. "I want to see the data," she says. "If you can't show me why my son needs Prozac, then he's not getting it."

Parents like Eilers and Halvorson are angry that the medical community is ignoring their pleas to look at vaccines and to try new treatments.

"I specifically asked (the doctors) about MMR, and they said, 'Forget it. Take her home and put her in special ed.' and that wasn't very encouraging," Halvorson says. "They say it's a coincidence and that's when you start noticing the symptoms, but how many coincidences can you have?" Eilers asks.

"They aren't on board with biomedical intervention," Halvorson says. "I don't know if (doctors are) afraid of getting sued or what, but they need to change because how many kids haven't been getting help because we haven't been told about it from the experts? We're supposed to be able to trust them, and I came home and found out about it through a magazine article. There's something wrong with that. That's not right."

Took says that it's important for parents to remember that the cause of autism is often unknown and there is no cure - and certainly no miracle cure.
"The sad part is, I think that parents want so much to do something, and many times they're in a position to be taken advantage of by folks who are selling this treatment or that that has no basis," he says.

Looking to the future

Whether the vaccine theory is right or not, parents want more research. They want to know if substances they're injecting into their babies could be at fault.

"The response we get is that they've never proven this," says Halvorson about the doctors she and other parents have spoken with. "My response to that is that I don't see they've disproven it either. I'm not comfortable putting any more immunizations into my children, but everyone has to make their own decisions. I look at everything, and I guess I need a lot more conclusive answers on this before I'd give my kids any more immunizations."

The medical community worries parents will refuse vaccinations, leading to an increased risk for disease.

"You have to weigh the vaccination against the disease," says Kris Steinmetz, interim director of the Autism Society of Iowa. "We don't want to say not to get vaccinations. We really don't have anything substantial yet at all researchwise on that."

That isn't the issue, says Dr. Jeff Bradstreet, founder of the International Child Development Resource Center in Palm Bay, Fla. Also a fellow of the American Academy of Family Practitioners, an organization that works closely with the CDC and the American Academy of Pediatrics in developing the current vaccine schedule, Bradstreet says he isn't suggesting an anti-vaccine approach.

He argues that safe vaccines need to be used or created. For example, single-dose vials used in Europe need no thimerosal.

At a time when autism levels are rising to epidemic status - currently 1 in 250 children is diagnosed with the disease - Iowa parents are struggling for help. The Autism Research Institute, an organization formed by Dr. Bernard Rimland to further doctor education about biological treatments is gaining support, but parents say it's not enough. The organization maintains a list of practitioners who are supportive of new treatments and further research into autism. But Iowa isn't well-represented.

"There was only one (doctor) for Iowa and she actually has asked to be removed from the list," Halvorson says. Dr. Janet Cuhel, who is in practice with Dr. Cretsinger, has just joined the list. But there are multiple, sometimes even dozens of doctors in other states. Wisconsin, for example, has eight doctors signed up.

Until they get answers and support, Iowa parents are at a loss about what to do for their autistic children. They just want their doctors to listen.

"This is how medicine works," Halvoson says. "It took them 100 years to believe bacteria exists. They're very slow to accept change, so it'll take some time, and it might take a lot of newspaper articles, but we might get there eventually."
 



 

   

 

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