Parents of children with autism often feel lost in trying to fathom the disorder and the social services system that is legally mandated to provide services for children with disabilities.
A valley advocacy group held its first Autism Awareness Conference on Saturday to inform parents about the disorder, proven therapies and treatments, and strategies in getting special education tailored to their children's needs.
About 50 people attended the conference held at Modesto Centre Plaza by the Ripon-based Central Valley Special Needs Advocates For Understanding. The 300-member group plans to make it an annual event.
"After we suspect our child has autism, we really don't know what to do next," said Mary Ann Fiedler, the group's president and an advocate for parents whose children have disabilities.
Getting the proper diagnosis for the child plays a crucial role when parents request services from state regional centers and school districts. Those agencies will look closely at how the disorder was diagnosed.
Parents should contact their family doctor or pediatrician and call their insurance company about a referral to a developmental pediatrician, Fiedler said.
She also recommended that they join an advocacy group. Such groups can refer parents to doctors who assess children with developmental disorders. The groups also can put them in touch with other parents who are navigating the system.
Signs of autism appear early
Parents often notice the signs of autism in the first two years of life, when their toddler doesn't make eye contact, has limited social interaction and isn't learning to talk. A proven therapy called applied behavioral analysis (ABA) is deemed most effective if started early. It involves one-on-one tutoring to cultivate language and social interaction.
For children younger than 3, parents can request assistance from the Valley Mountain Regional Center, which serves the developmentally disabled in Stanislaus, San Joaquin, Tuolumne, Calaveras and Amador counties. After the child turns 3, county education offices are responsible.
According to Central Valley Special Needs Advocates For Understanding, there are 1,200 students with autism in Stanislaus and San Joaquin counties, but only 170 are getting ABA therapy. Fiedler said the number comes from a regional Autism Connection planning meeting last year.
Conference speakers also offered tips for parents trying to develop "individualized education programs" (IEPs), which are plans designed to meet the special education needs of children with disabilities. Parents need to write effective letters documenting their child's behavior and why they need services such as speech or occupational therapy.
Speakers suggested that parents tape-record IEP meetings with school officials, so they later can review everything that was said. Also, parents were urged to be firm when hearing excuses such as "your son can't have speech therapy," "we don't do ABA", or "we know what's best for your child." Keep pushing for services, but never lose your temper, speakers said.
Suze Black, an advocate who has three special needs children, said she has brought a plate of brownies to IEP meetings to soften the tone.
"I have found that school districts are not open to (providing services,)" said Black, who lives in Ripon. "Getting them to say 'yes' is the toughest part."
Some parents might consider hiring an advocate to assist with the IEP process. Fiedler said her Guardian Angels Advocacy charges a standard fee of $30 an hour or lower rates, based on the client's ability to pay.
Other speakers at the daylong conference included professional experts who talked about therapies for children with autism and legal experts who discussed pertinent federal laws.
As the state cuts spending to alleviate a $16 billion budget deficit, it will be more reason for agencies to tighten spending for children with disabilities.
Lorraine Boudreau of Modesto said it helped to attend the conference. She has one child with a form of autism, and still seeks a definite diagnosis for a second child.
"I have been struggling for 11 years to get the therapy that they need," she said.
On the Net:
www.valleysnafu.com; www.vmrc.net; www.wrightslaw.com.
Bee staff writer Ken Carlson can be reached at kcarlson@modbee.com or 578-2321.
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