(Mass.) Worcester Telegram & Gazette series on Autism: Part 2

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http://www.telegram.com/apps/pbcs.dll/article?AID=/20060618/NEWS/606180516/1116

Sunday, June 18, 2006 Parents speak out, say epidemic exists

By Jay Whearley and Nangle TELEGRAM & GAZETTE STAFFjwhearley@...rnangle@...

Legislation banning the use of mercury in childhood vaccines would not do a thing to directly benefit those already stricken with a neurological disorder. Why then are numerous parents of autistic children advocating so adamantly for the measure? And what else do they think we should know about autism? Those questions were put to dozens of parents of autistic children throughout the state. Here are some of their responses:

• Brown, Worcester, whose 3-year-old son, Ben, has autism. “We’re in a national vacuum when it comes to awareness about autism,†Ms. Brown said. “Most people know absolutely nothing about it, and no one in any position of authority is willing to acknowledge how incredibly serious it has become.†While a ban on thimerosal as an additive in vaccines for children age 3 and younger would be just a tiny step, she suggested, it at least would be a step. Thimerosal is a bacteria-killing organic compound containing mercury. But the step she would most like to see would be a public pronouncement by the president that autism among American children has reached epidemic proportions, and because of that epidemic a research effort, on a scale with the one that led to a cure for polio in the 1950s, was being launched immediately. The autism epidemic does exist, Ms. Brown said, as does the

evidence of what’s causing it. If that isn’t enough to sway opinion, she added, the cost of the epidemic is. Children, including those with autism, are guaranteed an education. The cost of educating a healthy student runs from $6,000 to $12,000 annually, while the cost for those in special education programs, which serve autistic youngsters, is $40,000 to $60,000 per student. “Do I need to ask which you would rather pay for with your taxes?†• St. North Grafton, whose son, ph, 4, was diagnosed two years ago. Understanding that “it takes a village to raise a child†is a must when it comes to caring for and treating autistic youngsters, Ms. St. believes. She considers her family blessed to live in the Grafton School District, which has been highly supportive of her son. And the St. Jeans have many relatives and friends who help with ph’s developmental progress. “We cannot sit around and wait,

hoping they (the Food and Drug Administration, Centers for Disease Control and Prevention and professional medical organizations) come up with a ‘real’ cause and a treatment protocol,†she said. “My husband and I are no longer just parents; we have become pediatricians, allergists, neurologists, speech and language therapists, occupational therapists and behavior analysts. “Parents need help; we need guidance.†• Kim Stagliano, Plainville, mother of three daughters with autism. Mrs. Stagliano noted to a reporter that she had just returned from a local pharmacy, where she had purchased a small bottle of saline solution eyedrops. Prominently displayed on the package, she said, were the words: “Does not contain thimerosal.†“That’s got to tell you something,†she said. “We warn people about mercury in fish, and we keep it out of eyedrops. But inject it in our children? That’s OK?†The escalating incidence

of autism, she said, is reason enough to take precautions such as eliminating thimerosal from vaccines given to young children. “The rate is now 1in every 166 children,†Mrs. Stagliano said. “Would we still be standing around shrugging our shoulders if (one of every) 166 kids were snatched off the street?†Eliminating mercury would acknowledge that it is a factor in autism, she believes. That, in turn, would provide one more compelling piece of evidence to counter the common health insurance practice of classifying aspects of autism as psychological in origin. The classification isn’t as odd as it might seem, she added, because it means the insurers don’t have to pay as much as they do for physical illnesses or injuries. Those costs, she said, can be staggering. The Stagliano family last year moved to Plainville to live with her parents. Her husband had lost his job in Cleveland, and the cost of caring for their daughters had

already eaten through their savings. There was no choice but to move back to the house she grew up in. Mrs. Stagliano stresses that she isn’t bitter. “I have wonderful daughters whom I love and wouldn’t be without,†she said. “But at some point this country has to realize how bad autism is and what it is doing to people.†• Petra Smit, Norwood, mother of an 8-year-old boy with autism. “Why, I ask, this hesitation of actively conducting research into what we, who actually deal with the physical, emotional and social consequences of the ailments our children are suffering from, have been identifying for years as potential causes and treatments? “If we are all that misinformed, if we all just really don’t have a clue and are suffering from a grand delusion, then why not conduct the research and prove us wrong? “I, for one, am very afraid that a large part of that hesitation is due to fear, fear that the

research will confirm what we already know, that our children are suffering from a terrible, man-made disease. And to not have to face the consequences of what solid research will undoubtedly prove, the campaign to discredit treatments that actually help our children will continue. And so our children will continue to suffer unnecessarily.†“This has to stop,†she said. “And it has to stop now.†• Suzanne Messina, Essex County, mother of three children with autism, and founder of a group called Research Education & Action for Autism Spectrum Children. Based in Salem, it offers a resource library, workshops, speakers, parent support classes, social skills classes, and community and school outreach programs. “There is a lot of ignorance out there that people think we are trying to wage a war against vaccines, which is absolutely not true,†she said. “We want safe vaccines.†“We have a generation of very ill children

with many issues, and thimerosal has the potential to be implicated in all of them,†she said. Ms. Messina questions why medical organizations, such as the American Academy of Pediatrics, have lined up so heavily against legislation banning mercury. “How many of the members of those organizations determined that stance? Did they take a vote of all their membership, or was it just a small number of people who decided that? And were they enlightened with all sides of the argument?†• Cheryl Gaudino, North Attleboro, mother of , 9, who is autistic. She is the founder of the Friends & Families of Kids with ASD support group, and a board member of Advocates for Autism of Massachusetts and Massachusetts Families Organizing for Change and REAACH. Mrs. Gaudino recalls reading about mercury poisoning a few years ago and being struck by the similarities between it and autism. It all reminded her of , who had a full complement of

thimerosal-containing vaccines within hours of his birth. Since then, she has learned that a day-old infant’s blood-brain barrier is not yet fully formed and thus allows mercury to enter the brain. “Mercury is a known neurotoxin and the second most toxic substance on Earth after plutonium,†she said. “To inject this toxin into our children, in any form, is criminal.†The bill that is now in the House would not ban the use of thimerosal outright, Mrs. Gaudino pointed out, but at least would prevent it from being given to pregnant women and children under the age of 3. It also provides the Department of Public Health with the option of filing for an exemption should an emergency or epidemic arise. To make sure House members know where she stands on the issue, she sent each of them a graphic photograph of the severe reaction her son had to a vaccination. “In my role as an autism advocate and a support parent, I talk to hundreds of

parents each year. There is much anger and resentment toward the CDC, FDA and NIH. Why couldn’t anyone do the math and figure out that our kids were being poisoned with mercury well above EPA limits? “The CDC recommended that thimerosal be phased out of vaccines in 1999. Why then are we still fighting over this issue over six years later? Do the right thing, dammit!â€