Parents concerned about autism are watching and wondering

What is normal behavior and what are the early signs of autism? Today’s concerned parents are swamping medical experts with questions and concerns.

By KATHLEEN O'BRIEN
 Newhouse News Service

Sandra Devlin cradles her newborn daughter, Delilah, with the same devotion she lavished on her four older children.

"De-li-lah," she coos in a singsong voice, holding the 4-month-old baby close to her face. As she did with her other kids, she hopes to elicit a smile, a laugh or a gurgle of recognition.

It’s a time-honored mother’s gesture — but one that now comes with a twist: This time, Devlin is also checking for autism.

Every generation of parents has a worry unique to its era. In the ’40s, the specter of polio made mothers frantic about any trip to the neighborhood swimming pool. The ’80s brought the sense that every child risked abduction, his photo ending up on the side of a milk carton.

For today’s parents, that fear is autism.

"In my office, that’s the big elephant in the room. They’ll ask about something else, but what they’re really asking is, 'He doesn’t have autism, does he?’ It is the question for this generation," said Dr. Ari Brown, a Texas pediatrician and spokeswoman for the American Academy of Pediatrics.

With autism spectrum disorders now diagnosed in 1 out of 150 children nationally, rare is the parent who isn’t aware of autism. And with that awareness can come a new wariness of vaccines, which a vocal minority of autism activists blame for the jump in cases. Pediatricians report seeing more parents question, delay or even shun altogether the traditional round of childhood immunizations.

Such worries never crossed the mind of Devlin, of Denville, N.J., with her first two children, now 19 and 13. Autism arrived on her radar screen for the next two kids, now 9 and 3. With Delilah, born 11 weeks prematurely, that concern is front and center.

"I never did that with my older kids," she said of her new habit of checking for eye contact from Delilah. "But now I’m looking specifically for autism."

Parents noticing milestones

Pediatricians say this worry has its benefits: Parents are more aware of crucial child-development milestones and as a result, they are quicker to pick up on lags. That may mean some cases of autism — maddeningly difficult to catch in the youngest toddlers — are diagnosed earlier.

"If you have a child who doesn’t talk, I think in other generations they would’ve said, 'Oh, he’s a late bloomer.’ It wasn’t a big deal," said Mary Jean Wick, a mother of five. "Now it’s definitely a fear for this age of parent."

However, it can make some parents see autism behind every bush.

"Thirteen years ago, parents wouldn’t be able to answer the question, 'How does your child play?’ " Brown said of her early years in practice. "Now you hear, 'Oh my God, my child lines up his trains. Does he have autism?’ There are these extreme parents who think every little thing is autism. I have to say to them, 'Sometimes kids can be quirky.’ "

Autism spectrum disorders are developmental disabilities marked by an impairment of social interaction combined with communication problems and restricted or repetitive behaviors and interests. The spectrum encompasses a wide variety of thinking and learning abilities, from gifted to severely challenged. While its prevalence has soared in recent years, experts are unsure whether more cases are occurring or simply more cases are being diagnosed.

Some parents will single out one small trait or habit of their children as a "symptom" of an autism spectrum disorder, said Michael Segarra, president of the New Jersey chapter of the American Academy of Pediatrics.

When a parent voices concern that a child plays with only one toy, for instance, Segarra will ask a checklist of questions about the child’s social interaction. This helps the parent see the big picture.

Some parents accept their pediatrician’s reassurances. Others don’t — leading to more referrals to specialists.

The question of immunizations

Apprehension about autism shows up most dramatically with the issue of child immunizations, which some parents view as a culprit in the recent rise in autism.

A major study released last year in the New England Journal of Medicine shows no association between long-term neurological and psychological problems and early exposure to thimerasol — which contains mercury — in shots. (Use of thimerasol in routine vaccines was stopped in 2001.)

However, that has not reassured everyone.

A poll of parents of autistic children showed 54 percent believe autism is caused by vaccination shots, according to Harvey Bennett, director of Child Neurology and Development Medicine at Goryeb Children’s Hospital in Morristown, N.J. At a recent talk before a group of family physicians, he called that finding worrisome and "astounding."

Pediatricians report more parents are delaying shots, asking that they be spaced out or refusing them altogether.

"They don’t listen to me. They don’t believe a word I say," said Naomi Grobstein, a pediatrician with the Family Health Center of Montclair, N.J. "They say, 'He’s not ready!’ or 'He’s too young!’ "

She reminds parents of the lethal risk posed by diseases like measles, diphtheria and tetanus.

"It’s easy to believe these shots aren’t necessary, because we don’t see these diseases anymore," she said. "I ask them, 'What if your child is the one who spreads measles around?’ "

Complicating the picture are celebrities who either blame or suspect vaccines, such as actress Jenny McCarthy and radio talk show host Don Imus. Doctors complain that the celebrities get an unquestioning ride in the media.

Wick, the mother of five children ages 1 to 11, said she has worried about immunizations but decided to get her kids vaccinated. "I can see that there are people who just panic," she said. "But maybe that’s something in the culture, that we just want to control everything."

It’s important to address that anxiety, said Brown, the Texas pediatrician who is also author of Baby 411(Windsor Peak Press, $11.95), an advice book. "If there is something that is keeping you up at night with worry, then you need to go to the pediatrician to check it out," she said. "That peace of mind is worth the co-pay."

There are these extreme parents who think every little thing is autism."

Dr. Ari Brown,
Texas pediatrician and spokeswoman for the American Academy of Pediatrics

Leading Dr.: Vaccines-Autism Worth Study

CBS News Exclusive: Former Head Of NIH Says Government Too Quick To Dismiss Possible Link

CBS) CBS News correspondent Sharyl Attkisson wrote this story for CBSNews.com.

Jordan King was a typical baby. His parents called him vocal and vivacious.

Then just before age 2, after a large battery of vaccinations, he simply withdrew from the world.

"The real scary thing was when I noticed he wasn't looking at us any more in the eyes," Mylinda King, Jordan's mother, said.

William Mead was a Pottery Barn baby model and met all the typical milestones. Then, also at age 2, after a set of vaccinations, William became very ill and he, too, changed forever.

At first, both sets of parents suspected hearing problems.

"The reason we had him tested for a hearing deficit was 'cause he wouldn't respond to us," Mead said. "He no longer used any of his language."

"We had him tested for deafness, it was that bad," King said. "I mean, you could slam a book on the floor and he wouldn't turn around to see what the sound was. It was like he was in this bubble of somewhere else, like he'd left the planet or something."

Doctors said it wasn’t a hearing problem … it was the brain disorder autism.

In both children, batteries of tests revealed dangerous levels of the brain toxin mercury in their systems. Their only known exposure: the mercury preservative once widely used in childhood shots.

"Our doctor, Dr. Green, said 'you can stop looking for sources'," King said. "I know where it came from and it was … when he told us it was the vaccines, you just can't believe it."

Now, William and Jordan are two test cases among nearly 5,000 autism claims filed in federal vaccine court. Most claim that mercury, or MMR shots, or both, resulted in their children’s autism.

Government officials and many scientists insist there’s nothing about vaccines that can lead to autism.

"I think it's important for the average parent to know that the government hasn't made a link between vaccines and autism," said Dr. Anne Schuchat of the Centers for Disease Control.

Dr. Bernadine Healy is the former head of the National Institutes of Health, and the most well-known medical voice yet to break with her colleagues on the vaccine-autism question.

In an exclusive interview with CBS News, Healy said the question is still open.

"I think that the public health officials have been too quick to dismiss the hypothesis as irrational," Healy said.

"But public health officials have been saying they know, they've been implying to the public there's enough evidence and they know it's not causal," Attkisson said.

"I think you can't say that," Healy said. "You can't say that."

Read more about the "open questions" of autism at Couric & Co.

Healy goes on to say public health officials have intentionally avoided researching whether subsets of children are “susceptible” to vaccine side effects - afraid the answer will scare the public.

"You're saying that public health officials have turned their back on a viable area of research largely because they're afraid of what might be found?" Attkisson asked.

Healy said: "There is a completely expressed concern that they don't want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. "First of all," Healy said, "I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show."

As an example, Healy points to the existing vaccine court claims.

CBS News has learned the government has paid more than 1,300 brain injury claims in vaccine court since 1988, but is not studying those cases or tracking how many of them resulted in autism.

The branch of the government that handles vaccine court told CBS News: “Some children who have been compensated for vaccine injuries…may ultimately end up with autism or autistic symptoms, but we do not track cases on this basis.”

"What we’re seeing in the bulk of the population: vaccines are safe," said Healy. "But there may be this susceptible group. The fact that there is concern, that you don’t want to know that susceptible group is a real disappointment to me. If you know that susceptible group, you can save those children. If you turn your back on the notion that there is a susceptible group… what can I say?"

Government officials would not respond directly to Healy’s views… but reiterated, vaccines are safe.

Like Healy, the Kings and the Meads support vaccination, but say it can be made safer.

At age 10, William’s life is full of intensive therapy.

"Horrifying is a good word," his father George said. "It was horrendous to watch your own child become, in effect, a zombie. It's something I wouldn't wish on my worst enemy. It was awful."

Jordan, also 10, can't even communicate as well as he did as a toddler.

"Oh yeah, he doesn't talk at all anymore" said Jordan's father, Fred.

Public health officials insist there’s no connection to their shots. Thousands of families are hoping for a different answer in vaccine court.

WINA drops show over autism cracks

After comments blasting autism as just another over-diagnosed American problem, controversial radio personality Michael Savage has been dumped by a Charlottesville station. And for at least one local talk-radio host, the dismissal of “The Savage Nation” comes none too soon.

“As the father of a six-year-old boy who has been diagnosed with autism,” says WINA personality Coy Barefoot, “I was outraged. He clearly is spreading what I know to be outright lies about autism.”

“I’ll tell you what autism is,” Savage boomed in his July 16 broadcast. “In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’”

“Quite honestly, it came down to common decency,” says WINA program director Rick Daniels. “Although he was trying to make a bigger point, he didn’t clarify it at all. We took into account our listeners and some feedback we’ve gotten, and we wanted to do what was best for our community.”

While Savage’s syndicator, Talk Radio Network, found the comments merely “inartful,” Media Matters, a D.C.-based organization “dedicated to correcting conservative misinformation” agrees with WINA that the comments were out of line.

“I think he and the people who use the airwaves have an ethical responsibility not to be lying and not to be so hatefully offensive that they cause this much controversy,” says Ben Fishel, a spokesperson for Media Matters.

However, Charlottesville resident and long-time “Savage Nation” listener Linda McRaven disagrees. “Media Matters is looking for bombs,” says McRaven. “They’re not really valid critics.”

McRaven says that she’s a fan of Savage because of his fearlessness. “I call him a flame-thrower because he’s so passionate about what he feels,” she says. “He pulls no punches, and I really admire that. We are entirely too politically correct, and he just says what he thinks. In my opinion, a lot of things he says are right on.”

Both Aflac Insurance and Home Depot have reportedly pulled their sponsorships of his show in reaction to Savage’s comments, but according to Daniels, none of WINA’s local advertisers had made such a move— or even any comment— by the time of Savage’s removal.

Fishel is especially baffled by the way Savage’s comments might come across to parents of autistic children.

“Disciplining your child can cure autism?” he asks. “That is absurdly false and hateful, especially to these parents who have committed their whole lives to children with special needs.”

“Where do we draw the line with what is done with our public airwaves?” asks Barefoot. “What’s next, these kids with cancer should get up and walk it off?”

On his afternoon program “Charlottesville, Right Now,” Barefoot played excerpts of the controversial comments and shared his perspective. But the decision to remove Savage was the program director’s, not his.

“I think they did the right thing,” Barefoot says, noting that since Savage’s removal, WINA has received emails from around the country applauding the action.

In an email of his own, Savage tells the Hook, “The drug companies are very powerful and have worked very hard to silence any voice critical of the misdiagnosis of our children and the drugging of vulnerable minds. Sad the station manager is such an ignorant man.

Daniels says he has received what he called “overwhelmingly positive” reactions to the ouster, and only a handful of complaints, most of which he characterizes as freedom of speech concerns.

“There are hundreds of syndicated talk shows out there,” says Daniels, “and each one has the right to be heard, but we can’t run them all. We pick the best ones for Charlottesville, our listeners, and the community.”

On WINA— at 1070 AM— Savage’s program has been replaced with David Ramsey, who deals with get-out-of-debt and money management issues. “I think just about all of us,” Daniels says, “could use good financial advice these days.”

Savage added in his email that Charlottesville listeners could soon continue to hear his program on a station “across the street,” though Julian Hudson, Talk Radio Network’s affiliate director, could not confirm that any Charlottesville station is poised to pick up “The Savage Nation.” Dennis Mockler, general manager of Monticello Media, the other major radio group in Charlottesville, says his stations have no plans to pick up the show.