Autism special series: Family learns to deal with diagnosis of their first-born son
Nov. 10, 2011 at 5:10 a.m.
Editor's Note: This is the first of a four-part series showing how one community is fighting back against autism.
The "Missing Pieces" series continues Nov. 20 with the story of Rosemary Watts, a Victoria mother doing everything in her power to not only fight back, but give back.
Autism at a glance
Based on the national statistic, about 1,800 people in the Crossroads have diagnosed and undiagnosed autism.
Victoria has no physician who can specifically and clinically diagnose autism.
Fraudulent British journal study affected local families dealing with autism.
The spectrum will be changing from five disorders under the spectrum to three in 2013.
Esther Gutierrez tries to gaze into her son Cain Canchola's deep, brown unfocused eyes.
The 5-year-old's eyes glimmer with wonder and whimsy. But for Gutierrez, they are more so questions of why.
Why him? Why this?
"It's a very lonely feeling," Cain's mother said in a remorseful tone.
Cain has autism, and the Gutierrez family is not alone.
Discovering the disorder
Cain latches his arms around his mother and stares through her, pressing his cheek against hers.
He rubs slowly, and the two embrace in a moment of "I love you."
This physical touch is his way of communicating those three, one-syllable words.
The thought of possibly never hearing Cain utter more than a few words frightens Gutierrez, but she knows her son may never speak full sentences.
Cain is Gutierrez's first-born, born four weeks early in November 2006. He's also a non-verbal, moderate-level autistic child, diagnosed in May.
"I had always heard about autism, but I never thought it would be Cain," Gutierrez said as she watched her son interact with her 3-year-old, Uriah, who has already set more developmental milestones than Cain.
Estimating the number of Crossroads children who are like Cain is difficult.
That is because tracking regional or even state data of autism prevalence does not exist, said Michael Rosanoff, the associate director of public health research and scientific review at Autism Speaks.
The Centers for Disease Control and Prevention's Autism and Developmental Disabilities Monitoring Network tracks autism only in certain states, he said.
"We tend not to report individual state statistics because they are highly variable and not necessarily due to differences in risk for autism across different states," Rosanoff said.
Most states look at the generalized 1 in 110 statistic because it comes from a representative sample, he added.
For Cain's family, the fear that he may be part of a growing statistic came when he was just a year old, which is when most parents notice their child's developmental delays.
Cain, who carries many of his mother's soft features, began to lash out in unsolicited tantrums. Also, his speech was delayed and he had trouble focusing visually and mentally.
Gutierrez constantly fights on the frontline of her mind just trying to understand autism.
Dreams of her child growing up to be anything he wants to be have changed to a simple hope that one day he can speak a few words or be mainstreamed into public school.
"There is the 360 of having to change those dreams," she said, wiping tears from her lashes. "It's very hard to accept."
Making sense of a mystery
Spilling out toys from a bag, Cain chooses not to play make-believe like most kids his age. Instead, he calculates how he places each on the floor softly, as if not to hurt them.
After about 10 minutes, he has lined about eight toys by size and color. He even meticulously swaps out some toys last minute and rearranges them to make sure it's just right.
This characteristic is what makes Cain, Cain.
This is his niche in autism, which is part of a spectrum of three developmental disorders, said Dr. Patricia Harkins, a developmental pediatrician from San Antonio who diagnosed Cain.
Autism disorder, childhood disintegrative disorder, Rett's syndrome, pervasive developmental disorder-NOS, and Asperger's disorder have made up the spectrum for the past few years, but when the updated diagnostic manual is released in 2013, it will focus on only three: autism disorder, Asperger's and pervasive developmental disorder-NOS, Harkins said.
"There is a lot of genetics to it," Harkins said about autism research.
A study released in 2010 was retracted shortly after being published in a British medicine journal because it falsely concluded vaccinations were the cause of autism.
Health professionals believe the study's fraudulent claims scarred the public. Gutierrez agreed.
Gutierrez has clawed many times at vaccinations as the answer to why her son is the way he is.
Harkins has seen this in many families.
"I don't think it's vaccines," she said. "He scared a lot of people, and it was all made up. I know people who adamantly refuse vaccines."
Harkins thinks the mystery of autism can be traced to genetics and environmental factors, such as additives in foods.
For these families, just getting a diagnosis is painful enough.
Each pediatrician has a set of criteria that is followed to diagnose autism, and that criteria varies from person to person.
Harkins' criteria begins by getting a complete history of the child and observing how the child interacts and socializes on the first visit.
For Cain, getting that answer took many trips to different pediatricians and developmental pediatricians outside the Crossroads.
Cain was denied at one appointment with a different doctor for being late and then was told to wait several more months.
When Cain finally was seen by Harkins, he had four different visits during the span of five months.
"Overall, the entire process from start to current took two and a half years," Gutierrez said.
Harkins said getting an appointment in her office can take about eight months.
Most pediatricians in Victoria tend to refer their patients if they feel a child shows autistic characteristics.
Only certain developmental pediatricians can make an autism disorder diagnosis, Harkins said.
"People have friends and relatives who have autism," Harkins said. "It's hard to run into somebody who doesn't have autism once you really understand what it is."
Still, the lack of knowledge the public has about autism is surprising, Gutierrez said.
Social environments, or any environment that is different, can cause an autistic person to go on edge.
Sitting in a restaurant, Cain screams out; heads turn and the look on people's faces says it all.
"What's wrong with your son?"
"Control your kid."
Although these thoughts aren't spoken, Cain's mother can hear them. She punches a fist into her right hand as she explains how difficult it can be for her family to go out in public.
But anyone who knows Cain well knows to listen to the pitch of his shriek or the look in his eyes; the message will come across quite clear.
"Normal doesn't exist for us," she said.
Cain sputters "mama," and his mother's smile beams ear to ear. This small moment is enough to keep her wearing that smile all day.
Cain has been seeing Meredith Potts, a Victoria speech pathologist, since April, and already he's making progress.
"He says the word 'go,'" Potts said excitedly. For Potts and many families, any progress is cause for celebration. "He's below a 1-year-old developmentally with his language."
Most kids 12 to 13 months are expected to know about 10 words. By 18 months, a good standard is 50 words and short, two- to three-word sentence constructions, Potts said.
Potts' approach to speech therapy is a total communication approach. Sign, verbal and electronic communication all mean progress.
Cain could say about 10 different one-syllable words. Potts is also training Cain to use the assisted-speaking device he got this summer, which is the bigger reason why he was sent to speech therapy.
At first, Cain would not touch the device, but once Potts worked through keeping Cain focused and leading by example, he started using it more often.
"The research has shown over and over again that kids who are on the spectrum process information differently," Potts said. "They are more reactive to synthesized voice versus human voice."
The reason is because autism affects a person's sensory auditory perception, Potts said. Potts has been collecting her own data on the synthesized voice attraction.
Maybe one day, Gutierrez will be able to hear those three words she's longed to hear.
"I've finally realized that it's not the cards that I've been dealt," his mother wrote in a diary reflection. "It's how I play the hand that matters most."
Another Victoria mother, Rosemary Pena-Watts, is familiar with playing this hand; that's because three years before Cain was born, she already was battling the disorder, digging for answers.
Next Sunday: The "Missing Pieces" series continues Nov. 20 with the story of Rosemary Pena-Watts, a Victoria mother doing everything in her power to not only fight back, but give back.