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Living with autism
 
(La Voz graphic by Tiffany Wood)
 

By Ernest Gurulé
Egurule@lavozcolorado.com
 
08/21/2013

For a parent, there are few greater joys than a baby’s first year; from newborn to infant to toddler, the journey is miraculous. From day one to day 365, the transformation of a tiny person is surreal — birth weight triples and body mass doubles. At a year, a child is standing, maybe even walking. It is feeding itself — albeit hand-to-mouth, clumsily learning to use utensils, even mimicking sounds that will one day constitute vocabulary. In just a year it is expressing personality, showing quirks and nuance, offering hints and glimpses of personality. And despite the amazing metamorphosis, all of this is simply considered normal.

Normal is what any parent wants and, certainly, what Denver business executive Kathy Maestas expected with her second child. But despite all outward appearances along with her pediatrician’s assurances there was just something different about her second child, Sage.

“Boys develop later than girls,” Maestas recalled her pediatrician saying when she raised concerns about Sage at his scheduled checkups. Her instincts as well as the marked differences between him and her daughter — Sage’s older sister — were too glaring to ignore or chalk up to the ‘boys-develop-later’ theory. Little things, including his inability or desire to “babble,” just were missing in this new baby.

Sage is part of a growing population of children in the U.S. diagnosed as autistic, a neurological condition that impacts “communication, social interaction, behavior and more.” While Maestas says her son continues to develop — he can dress himself, communicate and function well enough to allow him to attend a public school — and is probably “right in the middle” of the Autism Spectrum, a scale that goes from mild to severe in intellectual development.

Autism also includes a condition known as Asperger Syndrome. A person with Asperger’s can function in a workplace but has certain characteristics that affect social and communication skills. Perhaps the most well known individual with Asperger’s is Temple Grandin, a Colorado State University professor and doctor of animal science. She is an in-demand speaker and successful author. She is also credited with a revolutionary redesign of more humane animal holding pens. Grandin was the subject of an HBO movie.

Perhaps a more familiar example of autism can be seen in the character played by Dustin Hoffman in the 1988 movie, “Rain Man.” Hoffman’s character has total recall and is taken to Las Vegas by his brother where he unwittingly uses this skill to count cards. The portrayal has been both praised for its accuracy in reflecting a unique autistic characteristic and attacked by the autism community for its stereotype.

Despite the fact that Autism has been a diagnosed condition since 1943, it has only been in recent years that diagnosis rates have exploded. According to the Centers for Disease Control and Prevention (CDC), about 1 in 88 children will be autistic. Autism affects boys (1 in 54) at five times the rate of girls (1 in 252). The CDC also says that rates of autism are the same for all ethnic groups in the U.S. But diagnoses occur at much different rates.

“There is an incredible disparity in age diagnosis with Spanish-speaking families,” says University of Colorado-Denver education professor, Dr. Phil Strain. Very simply, Latino children showing signs of autism are diagnosed as much as two years later than white children — eighteen months versus three and a half years. The lag time in diagnosis is critical, he says. “We know from our research that the most effective interventions are the earliest delivered ones.” Language, culture or both may contribute to this lag time.

An early diagnosis for an autistic child on the more favorable end of the autism spectrum can mean different and better outcomes with “more language, positive social outcomes and reducing stress in families,” Strain says. It may have something to do with “the plasticity or changeability of the really young central nervous system.”

Stress is just one heightened variable that comes from having an autistic child. “A lot of these families develop insular patterns of behavior; they stop going out,” he says. These changes trickle down to the autistic child. Divorce rates in families with an autistic child are also slightly higher but so far no definitive proof that autism is a significant contributing factor has been established. What is unassailable is that having an autistic child can add significantly to the financial challenges in a family.

Even with insurance, which Maestas says helped her family immensely, autism can have a huge financial impact. According to Autism Speaks, an autism advocacy organization, the cost of caring for an autistic person over the course of a lifetime is $1.4 million. For acute care the cost are estimated at $2.3 million. There are no price estimates for the fights and frustration in dealing with insurance companies who routinely balk at certain payments.

Despite years of research, scientists have yet to find a definitive cause for this condition. “We know enough at this point to say that there are some specific structural areas of the brain” that may hold answers, Strain says. The cause may also be chemical or the way the brain processes information. So baffling is autism that science is unable to say whether its cause is genetic or environmental. “There is no blood test; there is no marker in the body yet for autism. It is simply diagnosed on behaviors that kids do or do not engage in.”

Theories on the cause of autism include premature birth, cesarean birth, measles exposure during pregnancy, diet, pesticides, excessive vaccinations or vaccines containing mercury. All have been debated as potential causes for autism but none has been connected. The CDC has not ruled on any of these links. It has, however, ruled out excessive vaccines and vaccines containing mercury — a preservative that prevents a buildup of bacteria — as causes for autism.

Because there is no known cause or cure for autism, parents like Maestas simply adapt as best they can. In her case, the family has accepted Sage’s condition but she still worries. Autism has no known effect on lifespan and that is where anxieties rise. “I worry a lot,” she says. “What’s going to happen when I’m gone?” Maestas concern is not unique.

The Denver businesswoman says her oldest daughter is close to her brother. “She’s very nurturing. She understands him and wants to teach him. She is also very protective,” and doesn’t hesitate to explain his difference. “She just says, ‘my brother has autism.’”

Maestas is not unlike parents everywhere who are raising autistic children. The system, she says, is just not geared for children like hers. To make life normal and comfortable for her son, she helped establish a center for autistic children when her husband’s job took them to Puerto Rico. In Denver, she has encountered similar challenges and can only hope that she can enroll her son this year without a repeat of previous year’s frustrations. “This year we’re starting in a brand new school.” It will be Sage’s third school in four years.

 

 

 

 

 
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