This article originally appeared in the May-June 2008 issue of the Children's Advocate, published by Action Alliance for Children.

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“I knew something was wrong”

Crucial early treatment for autism and other disabilities can be hard to find for parents with low incomes or limited English

By Carolyn Jones

Valesca Santos knew something was wrong when her son Carlos, age two, stopped talking.

“He started talking at about nine months but then stopped,” says Santos, a Bay Area mom. “He was always fighting with other kids, always very upset. He didn’t like to put food in his mouth.”

The pediatrician diagnosed Carlos with autism, a developmental disorder that affects social behavior and communication. But Santos, whose first language is Spanish, had a hard time getting information about autism and possible treatments from medical and government bureaucracies.

She contacted her local Regional Center, which provides services for developmental disabilities. They helped her enroll Carlos in speech therapy, but not until he was three-and-a-half did he receive a full range of services through the school district.

Those were 18 precious months wasted, Santos says. “Studies show that early diagnosis and intervention lead to significantly improved outcomes,” according to the Autism Society. The earlier treatment starts, the better kids do.

Carlos, now 10, still has many social and sensory challenges and attends a special school for children with speech delays. He’s doing well, Santos says, but she believes he would be doing better if he had received more treatment in those first critical months.

Unequal access

Santos’ story is not unique. The state and federal governments provide services to children with autism and other developmental disabilities. The problem, says special-needs advocate Areva Martin, is that the services are often difficult to find, particularly for people who don’t speak English well or are low income. Many children don’t get services they need, especially in the crucial early years.

As a result, those children are less likely to be in mainstream classrooms or live independently when they’re older. They’re also more likely to need treatment throughout their lives, costing society millions in lost productivity and medical expenses, according to the Commonwealth Fund.

“Hard but not impossible”

Santos now leads a support group for Spanish-speaking parents whose children have developmental disorders. She teaches them to be assertive with their doctors and explains how to find therapists, teachers, and school administrators who speak Spanish.

“It’s hard, but it’s not impossible,” she says. “I tell people, ‘Get more information. Read.’” Ask a lot of questions and don’t settle for less than you’re legally entitled to.

Autism more common

Autism and other developmental disorders are increasingly common in the U.S., according to the Common-wealth Fund. In California, 12 children a day are diagnosed with autism, and the numbers are growing. Autism is caused by abnormalities in the brain; no one is sure what triggers them. It can be mild—slight communication problems—to severe—such as mental retardation.

Early treatment

Like Santos, Martin has a son diagnosed with autism at age two. But Martin, an attorney in L.A., was able to enroll him in 30 to 40 hours a week of speech, behavioral, educational, and social therapy. Now nine, he’s in a mainstream classroom, with an aide, and doing well, she says. “I’m a lawyer, but even I found it hard to navigate all the services,” she says.

So Martin and Donna Ross-Jones, another mother with a developmentally disabled son, started the Special Needs Network to connect low-income families and families of color with services they need. The group has provided workshops and forums for more than 1,000 families in Southern California.

Like Santos, Martin’s group teaches parents to be as-sertive with doctors and service providers. Parents should know what symptoms to look for and what services they’re entitled to. They should not be afraid to ask for a translator if they need one, or to talk to someone’s boss or threaten a lawsuit if necessary, say advocates.

Trust your instincts

It’s also important to trust your instincts, says a Redwood City mother whose seven-year-old daughter has Attention Deficit Hyperactivity Disorder.

“When my daughter was small, I knew something was wrong but didn’t know what,” says the mother, who asked that her name not be used. “The doctor said she was fine.”

But she did her own research, talked to other parents, and found a special preschool for her daughter. That paid off—now her daughter is performing above grade level in elementary school.

Public awareness

“Some families think their child will outgrow it if they wait,” Santos says.

That’s why Martin’s group devotes itself to public awareness about the symptoms and treatment of autism. “A parent might not even know the word ‘autism,’” Martin said. “All you know is that your child isn’t talking or looking at you. That’s why we need more awareness. Because this is an epidemic.”

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Working for change

A Blue Ribbon Commission on Autism issued a report last year saying the state should do far more outreach, including:

• An information web site for parents

• A toll-free number for parents

• Outreach geared to specific cultures

More info: http://senweb03.senate.ca.gov/
autism/reportsinformation.html

Two current bills

• SB 527 (Steinberg) would require health care providers to screen young children for developmental disabilities and to provide information for parents

• SB 1475 (Torlakson) would set up a two-year pilot project to identify best practices in integrating services for children with autism spectrum disorders.

Family Voices of California: a resource and advocacy organization of families of children with special needs, www.familyvoicesofca.org or call Linda Vossler-Swan, 415-282-7894.

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Resources for families

• Family Resource Center Network of California (FRCNCA): 49 information and support centers run by parents of children with special needs. To find one near you: www.frcnca.org/directory.html or call Debbie Sarmento, 415-282-7494

• Special Needs Network, www.specialneedsnetwork.net, 213-383-1837: information and advocacy for low-income families whose children have developmental disorders.

• Autism Society, www.autism-society.org, 1-800-3AUTISM: information in English and Spanish

• Autism Care and Treatment Today, www.act-today.org, 818-705-1625: resources including funding

• California Department of Developmental Services, 916-654-1690, http://dds.ca.gov/

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Could it be autism?

There are many reasons for unusual behavior. But contact your doctor if your young child:

• Doesn’t cuddle or return smiles

• Doesn’t seem to notice if you are in the room

• Seems to be in his own world; seems to “tune others out”

• Gets attached to hard objects or parts of objects

• Can’t ask for things she wants

• Doesn’t seem to feel fear or pain

• Persistently repeats certain movements or phrases

• Lacks interest in other children

Sources: American Academy of Pediatrics, Autism Society

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Extra resources from the Children’s Advocate bulletin

• Act Early Against Autism includes information for parents on recognizing the early symptoms of autism, dealing with financial challenges, and devising therapies. $15. By Jayne Lytel, available from Penguin Group.

• Autism: Unraveling the Mystery, a package of articles from CNN, covers issues related to autism, including raising awareness, screening, parenting challenges, getting help, and stories from people living with autism.

To stay informed about new and upcoming Children’s Advocate articles, related resources, and advocacy opportunities, sign up for our Children’s Advocate bulletin

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