It takes a miracle worker
Autistic students who are black or Latino tend to get help later. So an L.A. mom teaches other parents how to advocate for their children.
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.”
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 middleclass 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 nearcrew 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 Advo-
UPHILL FIGHT: Shiane Simmons, 15, at recreation time at Sunrise School in Sherman Oaks. Once considered a “high-functioning” autistic, she didn’t get consistent therapy in her early years, and still struggles to communicate.
MAINSTREAMED: Marty Martin, 8, attends regular classes at 3rd Street Elementary School with the help of an aide. His mother, Areva Martin, teaches poor local families how to get appropriate instruction for their children.