It takes a miracle worker

IN a tiny apartment just west of Fairfax Avenue, Shiane Simmons shouted for juice. Just the first sound came out: “Ju. Ju. Ju.” Her mother held firm. “No,” she said. “Water.” Shiane spat at her, then ran into her bedroom.

Shiane is 15 and autistic. When she was diagnosed at age 4, she was deemed “highfunctioning,” which meant she was not retarded and could be taught to communicate. But she has never received what is now considered the gold standard of care: 20 to 30 hours a week of intense behavioral, occupational and speech therapy for as long as necessary during the school years. “No one would call her high-functioning anymore. She’s regressing,” says her mother, Diane Murphy. “I feel like I’m in a tunnel, screaming for help.”

FOR THE RECORD
Autism: A May 19 Column One article about students withautism identified the co-founder of Special Needs Network as DonnaRoss. Her name is Donna Ross-Jones.

Barely three miles away, Marty Martin, age 8 and also diagnosed as high-functioning autistic, sat quietly in the front of his class at 3rd Street Elementary School. “Pick up your yellow highlighters,” said his teacher. Almost as though a conductor had raised a wand, there was an ensemble swoosh as the arms of 19 of the 20 second-graders simultaneously reached toward their desktop pencil cups.

Marty was the lone student who didn’t respond.

Then Emillia Themadjaja, a full-time aide for the boy, whispered quietly in Marty’s ear and pointed to the pencil cup. Marty picked up the highlighter. He doesn’t always participate with the class, but with Themadjaja’s help, he’s at least working parallel to his classmates.

He has been sitting still for more than two hours, something his mother, lawyer Areva Martin, once could hardly have imagined. “Even a year ago, for him to sit for an hour was not possible,” she says.

According to the state Department of Education, Marty and Shiane are two of more than 34,000 children in California public or specialized schools with autism, a developmental disability that affects a person’s ability to communicate and socialize. Local public school districts are responsible for education costs even for children who cannot be mainstreamed, or placed in regular classes. Since the 2000-01 school year, overall enrollment in the state’s public schools has gone up by about 2%, while the number of enrolled children with autism has more than doubled.

Together, Marty and Shiane represent a socioeconomic divide that no equal-opportunity law has been able to bridge.

POOR and minority kids with parents who don’t know how or whom to pressure get fewer services -- and get them later -- than middle-class and wealthy kids with assertive parents. African American and Latino children with autism are one to two years older than white children before they’re diagnosed.

In Los Angeles, it took white kids an average of four visits to specialists over four months to be diagnosed with autism; black children required 13 such visits over 10 months, according to 2005 legislative testimony of Robert Hendren, executive director of the UC Davis MIND Institute.

“It’s like dealing with insurance companies every day of your life,” Areva Martin says. “If you’re a single mother, how do you do that? The children in those worlds are lost.”

So she has put herself smack in the middle of the special-education fracas, fighting on two fronts. One is for her own child. And for the last two years, she also has been teaching some of the poorest families in Los Angeles how to be just as pushy for their kids as she has been for hers.

She and Donna Ross, also a mother of an autistic child, co-founded the Special Needs Network. They take their spiel to churches, auditoriums and libraries in the city’s neediest neighborhoods. They’ve talked to more than 1,000 family members, mostly African American and Latino, about their rights, and how to make sure their children get an appropriate education.

“Learn to say, ‘I’m prepared to launch a legal battle over this,’ ” Martin told a group of parents at the Faithful Central Bible Church in Inglewood.

“I still meet families whose kids are 5 or 6, and they don’t have any services yet,” she says. “On a micro level, there’s still a lot of despair and helplessness. But on a macro level, things are starting to happen.”

It was at just such a meeting, after crossing her fingers and saying a prayer that her salvaged Pontiac wouldn’t break down on the way, that Diane Murphy met Martin.

FOR close to a year, Shiane has been out of school. When she attended, she was spending nearly two hours each way on a school bus and, after multiple stops, often became too agitated to settle down. Instead of being in classes, she has spent her days careening from bedroom to galley kitchen and back in her mother’s two-bedroom apartment.

Shiane’s hair has grown from a near-crew cut to an Afro since she snipped her braids because she hated the way washing, combing and brushing felt. Children with autism can have multiple sensory problems, balking at touch or sound.

Murphy’s tiny apartment barely contains the teenager’s energy -- and 260-pound, 5-foot-2 size.

“She’s started spitting,” says Murphy, her calm more a measure of hopelessness than of peace. “When I’m out at the grocery store, I can see it coming.” Shiane spits at strangers. At home, she spits at the television set, her stuffed monkey, her picture book dictionary or her mother. “She can’t communicate, and she’s frustrated,” says Murphy.

Early and consistent therapy might have improved Shiane’s behavior.

Though experts say that it’s never too late for treatment to have some effect, learning becomes harder as children get older. The infant brain is, in a way, overloaded with potential learning circuits, says Sally J. Rogers, professor of psychology and behavioral sciences at the MIND Institute. The brain prunes away potential circuits that don’t get used. For children like Shiane, it is the language and communication circuits that get pruned.

John Nolte, an attorney with the California Assn. for Parent-Child Advocacy, sees the loss in children who have fallen through the cracks for years. “Some of these older kids are bumping up against their last chance to learn to read,” says Nolte. “Schools are in this nightmare phase. They have young kids coming in who can benefit a lot. But they also have kids who are over the hill, big kids, 180 pounds or more, who have no way of communicating.”

Staying out of school, as Shiane has done, is never supposed to happen, says Gloria Lopez, director of instructional initiatives for the Los Angeles Unified School District. Because of confidentiality laws, Lopez couldn’t comment on a specific case. But when parents and the district don’t agree, the law requires a due-process hearing to settle the difference.

Until an agreement is reached, the student is supposed to continue attending the last school agreed upon. Lopez says it’s rare that parents decide to keep their children home rather than send them to school, even one they believe is not appropriate.

For Murphy, getting Shiane ready for school as early as 5 a.m. for long bus rides became too grueling a daily fight.

Martin helped Murphy navigate this latest educational hurdle. As an attorney, she took on Shiane’s case, accompanied Murphy to a mediation with the school district, and helped iron out an agreement for Shiane to enroll at the Sunrise School in Sherman Oaks, a specialized day school for children with disabilities.

The new agreement with the district allows for Shiane to be picked up in a cab or a van, at district expense, with only the driver and an aide in the vehicle.

SUCH victories can seem rare in poor communities.

When one of Martin’s South-Central auditorium audiences heard that black children were diagnosed about a year and a half later than white children, there were mumbles of “More like five years around here” and “Add three years to that if you’re in South-Central.”

Immigrant kids with autism or learning disabilities, Nolte says, are often overlooked because teachers think they have a language problem. African American children, he says, are often dismissed as having behavioral problems.

Trying to bridge those gaps has become Martin’s avocation. Her son has received the presumed gold standard of treatment and learning opportunities since he was diagnosed with autism at age 2. The school district has paid for the bulk of it since he was 3, the age at which districts become responsible under the federal Individuals With Disabilities Education Act, enacted in 1975 and most recently revised in 2004. He receives speech, occupational and behavioral therapy, has an aide at his side all day in his mainstream class, and gets additional help and tutoring on Saturdays.

For Martin, the fight to help other families is a payback for the breaks she got as she made her way out of her own hardscrabble start in a St. Louis housing project. She was raised by her paraplegic grandmother, who was housebound, largely because the America of the 1970s had few wheelchair ramps or sidewalk cutaways.

“Growing up with someone who was disabled definitely made me sensitive,” she says. She knows the hurdles faced by families with autism. “If you have money, you get an attorney to go with you and you walk away with a full complement of services, 30 hours a week of special services. If you live in South-Central, you go in alone, the centers will offer two hours of special services, and people leave saying ‘Thank you. Thank you very much.’ ”

The district has expanded outreach programs to parents in poor communities, says Pat Grayson-DeJong, autism specialist at the LAUSD. The district holds an annual special-education family resource fair to educate parents, and offers $5,000 bonuses for credentialed special-education teachers to work in underserved areas. Those teachers get an additional $5,000 bonus if they stay for three years.

“The picture is changing, and that has a lot to do with parents getting on board and saying, ‘Something has to be done,’ ” Grayson-DeJong says. “There’s so much more today than just a few years ago, but there’s a long way to go.”

Informed parental needling is Martin’s forte, and she’s happy to teach it. “When I first gave a presentation in South-Central L.A., it crystallized what I already knew about disparities,” she says. “It was apparent that there were so many families that didn’t even know what early intervention looked like.”

Martin arms parents with checklists and strategies. She gives people sample letters requesting evaluations, reimbursement, follow-up meetings.

She also gives them words, forcefully phrased, a kind of assertiveness training 101. “Use the word ‘appropriate.’

It’s your job to say, ‘I see delays in speech. Therefore, speech therapy is appropriate.’ ”

Yudy Mazariegos, who took two buses to get to a Special Needs Network meeting at the King/Drew Magnet High School auditorium, has memorized many of those words so she can battle on behalf of her 13-year-old son. “I used to say, ‘I want.’ I learned to say, ‘I need.’ I know I have to prepare my case as a lawyer,” she says. “And we have to learn to use the words ‘I have a lawyer.’ ”

Martin says that in theory, the educational services are available to everyone since the 1975 federal law. But school districts are not required to tell parents what is available. “I represent families who have never heard of any of it,” she says. “Nobody is obligated to tell anyone about anything. So how would you even know these services exist?”

She is doing her best to make sure people across the socioeconomic divide know as much as they can about autism.

“Anyone who wants help has to go through hell to get it,” says Martin. But the trip can, for some, pay off.

IN Marty’s second-grade classroom, his teacher asks the kids to turn to Page 49 of their workbooks. With his aide’s help, Marty finds Page 49. Then the teacher asks the class what happened to the bed in the picture, the bed with the heavy trunkful of books on top. Marty’s hand shoots up. Called on, he says, “Broken.”

His mother, seated on a corner chair so small her long legs fold up nearly to her chin, looks awestruck.

Shiane may never make even that much progress.

“There’s never a time when people can’t learn,” UC Davis’ Rogers says. “But a 13-year-old who is not yet verbal doesn’t have the same chance of developing language as a 3-year-old. They’ve lost a lot of time, and a lot of wiring.”

Shiane, finally back in school after nearly a year, has missed a lot. “I didn’t have the knowledge that I have now or I would have pushed harder,” says Murphy. “I spent 10 years finding these things out, and now I hope and pray that it’s not too late.”

susan.brink@latimes.com