Autism Series: Part III
Frequent Response From Doctors, 'That's Ridiculous. That Couldn't Possibly Be'
Posted: 12:19 pm CST November 22, 2002
There is no cure, but there's growing consensus that early intervention in the lives of autistic kids can make a huge difference.
Parents of autistic kids are trying to turn the tables on doctors. Usually when we go to the doctor, the doctor tells us what to do -- but right now lots of families are trying to reverse the roles.News 3's Joel DeSpain concluded his special series on the mysterious neurological disorder with a look at what some are calling a new phenomenon in medicine. Part III aired on "News 3 at Ten" on Nov. 21. 
When autism was first discovered in the 1950s, the dominant theory revolved around the "refrigerator mother," that somehow unnurturing, cold parenting is what caused infants to go in to a deep dark shell.Autistic children were taken from families and placed in institutions."In the face of that, parents got angry," said Paul Shattuck, a UW researcher at the Waisman Center. "Parents were saying, "This just doesn't feel right. The doctor is telling me this is the way it is, but I love my child.'"Moms and dads pushed forth new research and won -- it turned out kids actually had neurological disorders.Now a half-century later, frustrated parents are crusading again."They are saying, 'You know, what we have is a hunch here. We're just parents, but we think this is worth checking this treatment or vitamin or whatever seems to be helping some of our kids,'" Shadduck said. "And frequently the response from the medical establishment is, 'Well, that's ridiculous. That couldn't possibly be.'"
That's what happened to parent Mike Wagnitz, whose daughter Josie (pictured) is autistic."We're, right now, treating Josie to remove the mercury from her system," said Wagnitz, a senior chemist specializing in trace metals analysis.Wagnitz took a six-month leave of absence from work last year, after becoming convinced his daughter's autism was triggered by childhood vaccinations -- any of which until recently contained mercury.He consulted six specialists, racking up tens of thousands of dollars in medical bills."There isn't anything anyone could do or offered to do," Wagnitz said. "So right now, I'm corresponding with thousands of parents across the country, and we've been forced to become our own researchers and our own doctors."Pediatrician John Bohn told News 3 that parents are making some doctors uncomfortable."That's a new phenomenon to medicine, at that level -- very threatening to doctors, (it's) not the way it started out," Bohn said. "We were the keepers of the information. We were the ones who told you what's going on."Bohn said, "It was eerie to hear these stories of parents who never met each other seem so similar."There are now some in the medical community working hand-in-hand with moms and dads.
"I think that we can make improvement, and if we put the money down in the younger ages, we maybe won't have to put out that much when they grow up," said Jeanie Muckian, nurse practioner. "That's my hope."UW researchers say unfortunately legislative minds have yet to focus on what those studying autism see as a looming health care crisis. They'd like to see Wisconsin follow the lead of other states and start convening a task force."(A task force) where they are concerned parents and all the people from the different social service agencies together, and they're doing this intensive planning process, saying, 'You know, there are more and more people with autism in our state needing services, how are we going to meet this growing demand?'" Shadduck said.You can expect parents, once again, to lead the charge, DeSpain reported.
"You're constantly analyzing, 'What else can I do? What else can I do?'" said Glenda Duncan, who has two autistic daughters.You probably would be saying the same, for we all have dreams for our children, and right now, "those dreams die," Duncan said. "And they die every day for a parent with a child with autism."Expect to see families and service providers heading to the state capitol next, as they try to get lawmakers to start focusing on what is so very important to them.
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When autism was first discovered in the 1950s, the dominant theory revolved around the "refrigerator mother," that somehow unnurturing, cold parenting is what caused infants to go in to a deep dark shell.Autistic children were taken from families and placed in institutions."In the face of that, parents got angry," said Paul Shattuck, a UW researcher at the Waisman Center. "Parents were saying, "This just doesn't feel right. The doctor is telling me this is the way it is, but I love my child.'"Moms and dads pushed forth new research and won -- it turned out kids actually had neurological disorders.Now a half-century later, frustrated parents are crusading again."They are saying, 'You know, what we have is a hunch here. We're just parents, but we think this is worth checking this treatment or vitamin or whatever seems to be helping some of our kids,'" Shadduck said. "And frequently the response from the medical establishment is, 'Well, that's ridiculous. That couldn't possibly be.'"That's what happened to parent Mike Wagnitz, whose daughter Josie (pictured) is autistic."We're, right now, treating Josie to remove the mercury from her system," said Wagnitz, a senior chemist specializing in trace metals analysis.Wagnitz took a six-month leave of absence from work last year, after becoming convinced his daughter's autism was triggered by childhood vaccinations -- any of which until recently contained mercury.He consulted six specialists, racking up tens of thousands of dollars in medical bills."There isn't anything anyone could do or offered to do," Wagnitz said. "So right now, I'm corresponding with thousands of parents across the country, and we've been forced to become our own researchers and our own doctors."Pediatrician John Bohn told News 3 that parents are making some doctors uncomfortable."That's a new phenomenon to medicine, at that level -- very threatening to doctors, (it's) not the way it started out," Bohn said. "We were the keepers of the information. We were the ones who told you what's going on."Bohn said, "It was eerie to hear these stories of parents who never met each other seem so similar."There are now some in the medical community working hand-in-hand with moms and dads."I think that we can make improvement, and if we put the money down in the younger ages, we maybe won't have to put out that much when they grow up," said Jeanie Muckian, nurse practioner. "That's my hope."UW researchers say unfortunately legislative minds have yet to focus on what those studying autism see as a looming health care crisis. They'd like to see Wisconsin follow the lead of other states and start convening a task force."(A task force) where they are concerned parents and all the people from the different social service agencies together, and they're doing this intensive planning process, saying, 'You know, there are more and more people with autism in our state needing services, how are we going to meet this growing demand?'" Shadduck said.You can expect parents, once again, to lead the charge, DeSpain reported."You're constantly analyzing, 'What else can I do? What else can I do?'" said Glenda Duncan, who has two autistic daughters.You probably would be saying the same, for we all have dreams for our children, and right now, "those dreams die," Duncan said. "And they die every day for a parent with a child with autism."Expect to see families and service providers heading to the state capitol next, as they try to get lawmakers to start focusing on what is so very important to them.Copyright 2007 by Channel 3000. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
