By Darhiana Mateo, The Cafe' Magazine Shortly after Elsa Sanchez’s son Israel’s first birthday, the La Grange Park mom suspected something was wrong. Her fair-skinned, redheaded second child wouldn’t look at her in the eyes or try to form words, and he never seemed at ease.
When Israel was 2 years old, his pediatrician confirmed her fears: He was diagnosed with autism. “That was the saddest day of my life,” says Sanchez. “I didn’t know what autism was. The first thing that popped to my head was ‘Is there a cure? How can I help my son?’ ”
Israel, now 7, is part of an alarming trend that many experts are now calling an epidemic. According to the Centers for Disease Control and Prevention, autism affects as many as 1 in every 150 children in the United States. In fact, autism is now the fastest-growing developmental disability in the country, with government statistics reporting a 10 to 17 percent increase in diagnoses each year.
The complex developmental disability, part of a group of disorders known as autism spectrum disorders, impairs an individual’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behavior. Symptoms range from mild to severe depending on the individual.
For families, a diagnosis of autism — which occurs across all racial, ethnic and social groups — can be devastating, says Jonathan Tarbox, director of research and development for the Center for Autism and Related Disorders, one of the world’s largest organizations dedicated to treating autism, and an adjunct faculty member at the Chicago School of Professional Psychology.
“It really is a pervasive, global developmental disorder. It affects basically every aspect of the person’s life,” Tarbox says. “Mothers that I’ve met said things like when their child was diagnosed they felt like they were dying, that their world was falling apart. They felt a tremendous weight crushing down on them.”
There is no cure for autism, but with critical early intervention, there is hope. “If you intervene early on, you can make permanent changes in the child’s ability to function,” Tarbox says. “The earlier you start the less delayed the child is likely to be.”
In spite of some strides, the medical community remains as baffled by the disease as affected families.
Experts still have not reached a consensus as to what causes autism. “It’s very controversial still,” says Tarbox. “No one has identified any ‘autism genes’ yet. But most agree that it’s a product of genetics and some mix of environmental factors.”
As soon as autism is diagnosed, early intervention instruction should begin. Effective programs focus on developing communication, social and cognitive skills. While there is no single treatment regimen for all children with autism, most individuals respond best to highly structured behavioral programs, according to Autism Speaks, an advocacy organization that sponsors research. Some of the most common interventions: applied behavior analysis; floortime therapy; a gluten-free, casein-free diet; speech therapy; and occupational therapy.
Within the Latino community, children are often diagnosed with autism and other developmental disorders later in life than other groups, thus missing out on key early treatment.
Dr. Elina Manghi, a native of Argentina and clinical services director at the University of Illinois at Chicago’s Developmental Disabilities Family Clinics, says barriers that prevent Latino parents from accessing needed services include lack of knowledge, limited resources and language.
The clinic houses the Hispanic Diagnostic and Family Support Program, which provides interdisciplinary comprehensive assessments in Spanish and/or English for individuals of all ages with developmental disabilities. Its specialized bilingual services and culturally sensitive approach is filling a void in the Latino community, she says.
“The most pressing needs for the Latino population in Chicago affected by autism include information about the diagnosis and about services for their child; information regarding how to teach their child or how to handle the child’s behavior difficulties; access to services; and connection to other parents who also have a child with autism,” Manghi says.
The clinic launched Grupo SALTO, a Chicagoland monthly support group for Hispanic families with children with autism spectrum disorders. More than 150 families attend the meetings, which consist of training sessions for the parents and art classes for the children.
Elsa Sanchez is a member of Grupo SALTO as well as Grupo Fe, a support group for Latina mothers of children with developmental disabilities. During a Wednesday evening Grupo Fe meeting at Cicero Stadium on the South Side, Sanchez fought back tears as she explained how she draws strength from the other families: “The meetings are like my therapy. I’ve learned so much.”
Within the Latino community, there is still a stigma attached to being different, she says. “We can’t accept a diagnosis like autism,” Sanchez says. “It’s too harsh, especially when we know there’s no cure.”
Sanchez was immobilized by fear during those early months after her son’s diagnosis: “I was scared. Really scared. I didn’t want to accept it. I was afraid to even tell my family,” she says. Eventually, she realized she had to fight to help her son lead a normal life.
Thanks to years of intensive therapies and his mother’s determination, Israel, a second-grader, is doing much better. His proud mother describes him as a “happy, confident, charismatic child.”
Nelly Aguilar, a special educations attorney and member of Autism Speaks’ board of directors, says when her now 8-year-old son was diagnosed with autism at the age of 2, she received little guidance as to what to do next. “He was diagnosed — and that’s it. There was no here is what you should do,” she says.
So Aguilar took it upon herself to become an expert on autism and along the way, a staunch advocate of parents’ rights and community-based support.
Her advice to parents? Trust your instincts and do your homework. “A lot of these kids can’t speak. It’s really up to [parents] to take on an investigative role,” she says. “The Latino community is making great strides in terms of awareness, but there is still much left to go.” Doctors used to wait until a child was at least 3 years old to diagnose autism. Now children are being diagnosed by 18 months or even earlier.
Parents are usually the first to notice unusual behaviors in their child or their child’s failure to reach appropriate developmental milestones, according to the Web site Autism Speaks (www.autismspeaks.org).
Caretakers need to be vigilant and watch out for delays in their child’s language and socialization skills, as well as unusual behavior, Dr. Jonathan Tarbox says. Some early warning signs:
1. No response from the child to his or her name at an age that other children start to (usually around 6 to 8 months)
2. No attempt to communicate through babbling or gestures
3. A lack of eye contact
4. A lack of interest in engaging with others (i.e. not wanting to be held or cuddled or interact with siblings)
5. Any sudden loss of speech or social skills
6. If your child is showing any of these warning signs, Tarbox advices parents to find a psychologist or medical doctor who is an expert at diagnosing autism — most family physicians or pediatricians still know very little about this disorder, he says.
Insurance Mandate for Autistic Children
In December, Senate Bill 934 was passed into law in Illinois, providing insurance coverage to parents of children with autism for the first time in the state’s history.
The new insurance mandate provides for each eligible beneficiary up to $36,000 per year of services, including diagnosis, speech, and occupational, physical and behavioral therapies (including Applied Behavior Analysis), explains Laura Cellini, a policy advocate and parent representative to the Illinois Autism Task Force who helped co-write the bill.
The law applies to all insurance companies in Illinois except for large, self-funded corporations.
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