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