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Parents Raise Awareness of Autism

February 7, 2013
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A parent might not even know the word ‘autism'...That’s why we need more awareness because this is an epidemic.

Areva Martin

A special-needs advocate

Bay Area mom Valesca Santos knew something was wrong when her son Carlos, age 2, stopped talking.

“He started talking at about nine months but then stopped,” Santos says. “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 3 1/2 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 age 10, still has many social and sensory challenges and attends a special school for children with speech delays. Santos says he’s doing well, 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 is that the services are often difficult to find, particularly for people who don’t speak English well or are low income, says special-needs advocate Areva Martin. 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,” Santos 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 United States, according to the Commonwealth 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 (mental retardation).

Early treatment

Like Santos, Martin has a son diagnosed with autism at age 2. 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 age 9, he’s in a mainstream classroom with an aide and doing well.

“I’m a lawyer, but even I found it hard to navigate all the services,” Martin 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 assertive 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, according to advocates.

Trust your instincts

It’s also important to trust your instincts, says a Redwood City mother whose 7-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.”

Originally written by Carolyn Jones.