Thriving Healthy Women Documents

Catlin family seeks more answers on causes of autism

Sunday, August 2, 2009 8:34 AM CDT

CATLIN – When their only son, Tanner, got the last of his pre-kindergarten vaccines at age 4 1/2, Tim and Cheri Welsh held their breath.

The Catlin couple had delayed those immunizations a bit, worried about the rare, potential reactions they'd heard some children have. But they also knew vaccines protect kids from nasty diseases like measles and mumps, so they eventually decided to proceed.

Two days after he got two shots containing five vaccines, Tanner went running up to his dad and spoke his last sentence: "My name is Tanner, my name is Tanner."

The diagnosis after he stopped speaking: autism.

Now 11, Tanner has emerged from his silence just once, to say hi to his dad. And Tim and Cheri Welsh have been left with frustrating questions nobody can answer.

Most pediatricians debunk the much-debated connection between vaccines and the onset of autism. But the Welshes think the timing between Tanner's vaccinations and autism just couldn't be a coincidence.

"We 100 percent believe his last vaccines precipitated his regression," Tim Welsh says.

A former J.C. Penney store manager, Welsh has since become a full-time advocate for people with autism and their families. And he has a very long reform agenda.

Some of his issues:

– He wants doctors and scientists to take another look at a link between vaccines and autism.

– He wants health insurers to cover more autism care and for Illinois to become a better-funding state for the services needed by people with autism.

– And he wants the world to wake up and realize autism is on the rise – and there are reasons for that.

What happened to Tanner

The Welshes say Tanner was a healthy baby, but started showing some signs of developmental delays as a toddler. Nothing serious, though. He walked early, rode a bike, spoke, and "did all kinds of things a normal rambunctious 4-year-old does," Cheri Welsh says.

His sudden regression at age 4 1/2 was painful. Not only did he stop speaking, but Tanner began needing diapers and feeding assistance again, his parents say.

These days, he sleeps little and bounces on his bed a lot.

He loves music, especially old Beatles songs, and needs constant stimulation from a TV that is always left on for him. He likes to have reading materials – books, magazines or catalogs – in his hands all the time.

The Welshes don't know if Tanner is actually reading or just looking at the pages, but one of his favorites is the phone book, Cheri Welsh says.

"I'm hoping some day, he'll be able to tell me where someone lives, out of the blue," she says.

Nobody sleeps much in their house. They're afraid to lock Tanner in his room at night in case of a fire, but they're also afraid to leave him unattended in case he finds his way out of the house.

Children with autism, a developmental disorder, typically have impaired social interaction and communication skills and a limited range of interests.

Tanner is atypical in many ways, the Welshes say. He's affectionate, does fine with transitions and doesn't have any behavior issues at home, school or out in the community.

In fact, they've seen improvement in his autism symptoms since a Danville pediatrician, Dr. Robert Elghammer, started him on a gluten-free, preservative-free diet and vitamin supplements.

Keeping Tanner on this diet is expensive (think another whole level of organic, Cheri Welsh says) but worth it, his parents say. It was after Elghammer began treating him that Tanner spoke for the first time in seven years. He said, "Hi Daddy."

The vaccine debate

The U.S. Centers for Disease Control and Prevention estimates one in about 166 children in the nation has an autism spectrum disorder, a figure that Elghammer says has been on the rise for the past couple of decades.

Parents have raised concerns about a possible connection between autism and vaccines – largely the measles, mumps and rubella combination vaccine and thimerosal, a mercury-containing preservative used in vaccines in the 1990s and still used in most influenza vaccines. Today, thimerosal is present in trace amounts in pediatric vaccines, with the exception of the influenza vaccine, according to the CDC.

The American Academy of Pediatrics cites dozens of scientific studies that have failed to find a connection between vaccines and autism and says the rise in autism may be a factor of better recognition and classification of autism spectrum disorders in young children.

Pediatricians also say that if parents want their children adequately protected from serious diseases, it's important to get those immunizations on the recommended timetable.

The Welshes agree vaccines for children are important and they're certainly not urging parents to skip them. What they do encourage is for parents to be better-informed about vaccines, to ask more questions and allow more time between shots.

"You can do more harm by not vaccinating than vaccinating," Cheri Welsh says. "We just want parents to spread them out."

Vaccine experts don't agree. The National Network for Immunization Information says giving the measles, mumps and rubella vaccines individually increases a child's risk of getting one of the diseases by delaying the immunization. And, the organization says, there's no increased safety in getting them individually.

Dr. Martin Myers, executive director of the NNII, said the connection between autism and vaccines is often based on coincidence, because many children are diagnosed with autism about the same time they receive their immunizations.

"There is absolutely no evidence linking vaccines with autism," he said.

Nor is there any evidence that thimerosal causes autism, he said.

"There's no mercury given to children under 6 months of age, and there hasn't been for several years, and there's no evidence to suggest that mercury in any form has been linked with autism," he added.

Elghammer, who says he's one of 250 doctors in the nation who follow an autism treatment program called Defeat Autism Now!, doesn't dismiss the connection entirely.

For 99 percent of children, immunizations are safe, he says. But to have autism, he adds, a child must be genetically predisposed AND there must be environmental factors, such as exposure to toxins that people with autism have a tougher time eliminating from their bodies.

"It's wrong to say immunizations have no effect (on autism) and it's wrong to say immunizations are the cause," he said.

As for environmental factors, parents have only to look at the array of new products developed since autism began to increase: Elghammer says thousands of new chemicals are produced every year and only a fraction of them are tested to see if they're toxic.

How can parents know if their own children may be among the 1 percent of those for whom vaccines may not be entirely safe? Watch for early signs of developmental delays, and if they notice any, have the child evaluated for autism at 18 months, Elghammer says. Sometimes autism can even be detected at 12 months.

Don't skip the vaccines up to this point, he advises, but do eliminate all unnecessary chemicals from your home environment.

Elghammer says old-school pediatrics subscribes to the notion that there's nothing that can be done to treat autism, but he's convinced making some dietary changes and adding some vitamin supplements such as B-12 can make a big difference. Some 70 percent of the autistic children who undergo this kind of treatment improve, he added, and it's even possible for some children to overcome autism entirely.

Other issues

Two of the other issues on Tim Welsh's agenda are the paucity of state resources for autism in Illinois and the need for all states to mandate insurance coverage for autism treatment.

The Welshes had been living in Minnesota, where Tim had been transferred with J.C. Penney, when the couple decided they needed the support of family and the friendliness of a small town for Tanner's sake.

They found the support they were seeking in Catlin. But Illinois let them down.

The Welshes discovered they'd left a state tops in resources for people with developmental disabilities for a state that is one of the worst.

A report that tracks public spending on services for developmental disabilities, "The State of the States in Disabilities," last year ranked Illinois 51st – behind all other states and Washington D.C. – for the amount of support provided for group homes for one to six people. Minnesota ranked ninth from the top.

The same report ranked Illinois 47th among states, with Minnesota ranked third, for the money spent on services helping people with disabilities remain at home with their families.

The state budget crisis has made resources for these services in Illinois even more scarce, says Janice McAteer, director of development at Developmental Services Center in Champaign.

In December, Illinois became one of 14 states requiring insurers to cover some autism treatment. Autism Speaks, a national autism science and advocacy organization, is pushing Congress to make required coverage for autism treatment in all 50 states a part of overall health care reform.

Illinois' law requires insurers to cover autism diagnosis and treatments up to $36,000 a year, but Welsh says there are holes in the coverage and the cost of treatment can run high.

One recognized treatment for children with autism, Applied Behavior Analysis therapy, can run about $50,000 a year, according to Autism Speaks.

Welsh says the dilemma for families like his is that a child with autism looks perfect to the rest of the world, yet is just as disabled as a child in a wheelchair.

Families dealing with autism struggle with little sleep and high stress, and foot large bills for care and services their insurers won't cover, he said. Some marriages collapse under the strain. And the pain often goes unrecognized.

Cheri Welsh, the owner of Floral-N-Flair in Catlin, says she and Tim are grateful for the church, family and community support they've received. But she often feels alone among all the families with typically functioning children.

"I'm an older mom, and with autism thrown in, you can feel isolated, like a star floating out there somewhere," she said.

Her husband wants answers and awareness, she said, and she supports his outreach efforts 100 percent.

"It's his way as a dad of reaching out to a kid he can't play ball with," she adds.

Sharing experiences

Tim Welsh estimates he's spent thousands of hours educating himself about autism, and he shares his thoughts and ideas on two blogs and Twitter.

"Nobody listens to the parents," he writes in one of his blogs. "We are not hysterical radicals. We want the world to be free of bad diseases and our children to be healthy. ... This is an epidemic that has been ignored by the medical community, education, insurance, religion, politicians and the government. Support, therapies and funding have been virtually nonexistent for these children. Come live at my house for a week, then give us your opinion."

Read more of what Tim Welsh writes about autism and his own family's experiences at:

— Twitter: Look for his tweets at www.twitter.com/TannersDad.

— His blog on Causecast at www.causecast.org/member/tanners-dad

— Tim Welsh's blog at www.autismone.org/users/tim-welsh