Serena Feliciano named her only son Elim. It's derived from one of the many Hebrew names for God.

And over the past five years, little Elim has proved himself just as elusive and at times unknowable as his namesake often seems to the faithful in the Old Testament.

For three years, the Felicianos, of Garden Grove, Calif., struggled to find the source for the invisible wall that had cut their son off from them.

Why didn't he talk?

Why didn't he play with other children?

Why did he scream when someone looked him in the eye?

When the answer to all those questions came back — autism — it took them another year to find the right therapy.

It was terrifying enough that Elim wasn't responding to his parents, they say. It got worse when doctors didn't respond, either. They were slow to diagnose, even slower to recommend effective treatment.

Serena Feliciano and her husband, Elim Sr., learned that pushy works. Passive doesn't.

“The best thing that ever happened to me was meeting another mom with an autistic son,” Serena Feliciano said.

“All of us are running around with little phone books full of numbers — of pediatricians, of immunologists, even of attorneys. All of us are focused on getting what's best for our kids.”

Now that her daughter, Thalia, is 2 but not talking, Feliciano again is hunting for a pediatrician who will listen to her concerns, not tell her to wait. 

Parents like the Felicianos have a new ally.

 The American Academy of Neurology and the American Academy of Pediatrics announced two weeks ago a new set of guidelines for the early diagnosis of autism.
 
It gives parents a checklist they can bring with them when they go to the doctor to ask what's wrong with their child. With autism rates now estimated at 1 in every 500 people, autism researchers say doctors can't afford to “wait and see.”

 “Parents need to listen to their hearts and listen to their guts,” said Dr. Pauline Filipek, a University of California-Irvine neurologist who was one of the chief authors of the new guidelines. “If they are concerned, no matter what their in-laws are telling them, they need to advocate for their child because they are usually right.”

 The first few years of a child's development are crucial, Filipek said, because the brain is still forming. Before autism has a chance to set rigid behavior patterns — such as rocking, repetitive speech and isolation — therapists can train the brain to act more normally.

 The academies urge physicians to give children developmental screenings during “well-child exams,” usually every three to four months until age 2 and then annually.

If parents want to make sure their child is being screened properly, they should ask if the doctor is using the Denver II screening, which has been discredited.
The academies recommend four screens that vary by the type and number of questions but share one aim: to catch developmental disorders.

 They are:
-- The Ages and Stages Questionnaire (ASQ)
-- The BRIG-ANCE Screens
-- The Child Developmental Inventories (CDIs)
-- The Parents' Evaluation of Developmental Status (PEDS)

 Typical questions include:
Do you think your child talks like other children her age?

Can you understand most of what your child says?

Does your child dress up and “play-act,” pretending to be someone or something else? If not, that could be a sign.

 “Pediatricians often incorporate questions from these screens into their own evaluation, so a patient might not always know which screen is being used,” said Dr. Robin Steinberg-Epstein, a UC-Irvine pediatrician.

“What's important here is that if patients don't think they're being taken seriously, they need to find a pediatrician who will listen.”

 To give weight to their concerns, parents can watch for what the academies refer to as “absolute milestones.” If a child shows one of these behaviors, doctors recommend they be screened for autism.

-- By 12 months, no babbling. The adage that “boys take longer to talk than girls” doesn't wash, Filipek said. Four out of five autistic children are boys.

-- By 12 months, no pointing, waving or other gesturing. Also, see if your child follows where you point.

-- By 16 months, no talking with single words. See if your children respond when their names are called.

-- By 24 months, no two-word phrases. Kids should be talking spontaneously, not echoing their parents or other kids.

At any age, loss of language or social skills.

 Serena Feliciano noticed Elim wasn't talking, gesturing or responding to her at a little over 16 months.

She had him assessed by a neurologist, a speech pathologist and an occupational therapist. And she kept records all the way.

Detailed records are key, experts say, and they encourage parents to:

-- Ask for copies of their child's evaluations by physicians and therapists.
-- Keep all records in a simple binder or folder.

-- Take note of different behaviors, speech patterns and social interactions.

 By the time Elim was finally diagnosed, he was already 3. That made him too old to receive treatment through the Regional Center, the state and federally funded agency that treats children for developmental disorders from birth through age 3.

So she turned to the school district.

Feliciano didn't feel Elim was getting enough speech therapy — about an hour a week — so she had a meeting with district officials. She brought her attorney.

Now Elim is receiving 35 hours of weekly therapy: speech, social and behavioral, most of which is paid for by the school district.

At age 5, Elim still can't talk like other kids his age, but he is using full sentences. And he doesn't flap his arms wildly like he used to, or scream at the sight of strangers.

 “I know there's a lot of quackery out there because nobody is sure about what causes autism and how to cure it, but doctors need to be a little more open-minded, not only about diagnosing it but also about some of the new approaches to treating it,” Feliciano said.

“As a parent, you really need to educate yourself, then go to your doctor and see if they can help you with getting what your child needs.”