Understanding Autism

Andres Aaron Carr is a big fan of Pizza Hut, watching Blues Clues and spending hours in his favorite chair.

As an infant Andres was outgoing, loved to pose for the camera and uttered his first words, “mommy, daddy and ball” with sweet resonance.

Just shy of his third birthday, Andres began to change.

His gaze shifted. His speech silenced and he began to exhibit repetitive interests.

“I just knew because all of sudden he would look at things different,” said his mother, Dalia Carr, as she flipped through a photo album dedicated to her only child. “I would tell my family, ‘el niño tiene algo’ (there’s something wrong with the boy).”

Unfortunately, others, including doctors, thought Carr was just an impatient parent, she said, and that Andres would eventually come around.

She’s still waiting for that day.

“Andres was elsewhere,” said the 47-year-old owner of El Fenix Café in Mercedes. “You don’t have to be a scientist to say your child is different.”

As the Carr family did not have insurance at the time, getting a proper diagnosis was next to impossible. Out-of-pocket expenses for hearing tests and neurological exams put a strain on attempts to determine the cause behind Andres’ sudden change.

Eventually, Carr took advantage of a health screening fair where it was determined that her little boy was autistic and had mild mental retardation.

“It was that simple, except I didn’t know anything about autism,” she said. “I knew he was put in this world for a reason.”

EDUCATE, EMPOWER AND SUPPORT

According to Centers for Disease Control and Prevention estimates, 1 out of 150 children born in the United States are diagnosed with autism, a neurological/developmental disability that typically affects communication, social skills and sensory behaviors.

Diagnostic rates have, however, increased 10 to 17 percent annually, the CDC states, for a disorder of which the cause is still unknown.

As Autism Awareness Month comes to a close in the coming week, advocates hope to acquire the community’s support for research and services. ACES, Autism Council for Educational Support and Scientific Studies, a non-profit foundation to benefit children diagnosed with Autism Spectrum Disorders, hosted its first awareness walk at Memorial High School Boxer Hernandez Stadium, on Saturday to raise funds specifically for the Rio Grande Valley. Help is still needed.

Carr herself made a $2,000 pledge to the organization and is putting together her own benefit to come up with the money.

“This is not for me or just for Andres, it’s for all of the parents here in the Valley with autistic children,” said Carr, whose husband, Juan has been diagnosed with terminal lung cancer. “Not all autistic children are the same and each needs their own type of therapy and attention.”

With autism, characteristics are similar but no two cases are the same. Some children might have higher functioning with social quirks. There also are those like Andres, who turns 12 in August, who are completely non-verbal, with very little social function.

Throughout Region One, which includes all four area counties plus Jim Hogg, Webb and Zapata counties, there are more than 800 autistic cases within school districts.

“It’s important for teachers to know what students are capable of,” said Michael Benavides, senior education specialist in the Special Education Department for Region One. “Accommodate challenges and keep them from being obstacles. Most importantly, find their strengths.”

The local foundation hopes to push for more legislative action in order to attract attention to the area.

“There has to be a political component to affect legislation; that’s the purpose of ACES,” said Rodrigo Eraña, a pediatric oncologist and member of the ACES board of directors “Sure we want the best treatment possible for our kids but we also want to be able to walk outside and not have people look at you like you’re insane or that your child is a not well-behaved.”

ACES’ mission is two-pronged. First the organization is meant to empower and teach parents in order for them to know more about their kids’ diseases, Eraña said.

Secondly, the organization’s goal is to secure funds in order to get the research done here in the Valley and raise funds to sponsor research projects and therapies.

Eraña, whose 7-year-old son is autistic, knows firsthand about the drastic change of life for families dealing with the disorder. Eraña maintains that no one deserves to be treated like second class citizens because they cannot afford certain medical services. Like the local doctor, many working middle class families struggle with private insurances that only cover 10 therapy sessions a year.

Children insured through Medicaid receive therapy under the autism diagnosis.

“A majority of families end up having horrible debt because of investing in therapy and it’s very costly,” Eraña said of the monetary pressure he also deals with. “There is thing called autism and a lot of kids here have it and we need to support them and their parents.”

Carr, who also has private insurance, agrees.

She cannot afford sessions and relies on autism conferences and plenty of reading material to self-train. Andres also receives one hour of therapy once a week.

“I don’t blame teachers. Sometimes it’s just too much for them,” she said. “Sometimes it’s the middle people that don’t get the help. It’s frustrating but I’m proud of myself for what I’ve done so far with my son.”

BEYOND THE BARRIERS

It doesn’t take long to fall in love with Andres.

Regular customers at the El Fenix, a longtime downtown restaurant, have come to treat Andres like one of their own, his mother said. They bring him gifts, stop in to say hello and offer the family moral support.

“I tell newer customers, ‘Please don’t be frightened with my son. He doesn’t mean any harm’,” Carr said. “I know I cannot protect him from every environment. These are realities; this is my life. This is my livelihood.”

After school, Andres is ready to unwind, which means it’s his mothers turn to work with him as best she can, using techniques she’s picked up at trainings and autism symposiums.

If she could afford it, she would love to send Andres to weekly therapy.With each autism case, medical experts are able to provide targeted occupational and physical therapy to help increase daily function. Through Applied Behavioral Analysis or Sensory Integration therapists are able to modulate the level at which the autistic child is.

Children like Andres, who does not like the confinement of shoes, T-shirt tags or noise, are considered tactile hyper-reactive, said Melissa Finley, an occupational therapist at Building Blocks Rehabilitation and Autism Center in McAllen. The majority of Finley’s patients are autistic children.

Those that feel no pain are considered hypo-reactive.

“What we do is provide certain forms of input to become more regulated, which calms autistic children down,” she said. “Some parents really don’t understand the behavioral process, how to respond to a child or to quiet a child especially in public environment. You have to explain why they can’t do certain things.”

For non-verbal children, therapy includes using PECS (Picture Exchange Communication), essentially a picture board that helps organize the thought processes. It also teaches students to use attributes such as colors, shapes and sizes within their requests.

For example, Andres knows when he sees the picture of a comb, it’s time for a hair cut. His mother says the picture board is a godsend.

The “floor time,” approach incorporates the DIR (Developmental, Individual-Difference, Relationship-Based) which focuses on helping children master the building blocks of relating, communicating and thinking, rather than on symptoms alone, experts said.

“Most of the time children are extremely intelligent but just get a label because people don’t know how to get through to them,” said Finley. “They are often misguided as mentally retarded but you see how brilliant they are.”

Parents of autistic children eventually understand days will be long and most often challenging. While there is no known cure for the neurological disorder parents can focus on building a relationship with the child and finding the best way to cross the communication barrier.

All Carr hopes for is that she never fails her son.

“Sometimes I feel like I’m in a world by myself,” she said. “But somewhere along the lines, Andres has a gift. We just haven’t discovered it yet.”

How you can help:

— ACES (Autism Council for Educational Support and Scientific Studies) (956) 240-1695

— Autism support group meets every third Tuesday of the month at: First United Methodist Church, 4200 N McColl Road, McAllen