Living with autism: the early years
April 25, 2014
FORT CARSON, Colo. - It is 4:30 a.m. Melinda Waller is awakened by her 4-year-old son wanting to watch videos on the computer.
"Momma, dragon turtle, dragon turtle," he said as he tries to shake her awake. He grabs her hand and pulls. "Come on, dragon turtle."
She slowly opens her eyes -- for what seems like the millionth time in the last few years -- and pulls him close and mumbles. "I sure do love you, son."
Waller said she and her husband always feared something was different about their son. He had trouble speaking, and he acted out when he couldn't communicate what he needed from his parents.
It wasn't until last July when Waller took Tristram to the doctor that they finally had an answer: autism.
"I don't exactly know when the tears started to fall," Waller said. "The tears were just falling … like someone had turned on a faucet and was just letting it run.
"The only thing I totally remember feeling is the need to have my husband by my side, to catch me when I broke."
Melinda Waller's husband, Staff Sgt. Billy Waller, who is currently deployed to Afghanistan with the 4th Infantry Brigade Combat Team, 4th Infantry Division, said that before Tristram was diagnosed, he was worried, because Tristram had little to no way to communicate and would have meltdowns around large groups of people.
He said that it all changed when they finally got Tristram's diagnosis.
"I felt relief; there was something to finally explain exactly what was going on with my son," Billy Waller said. "Once we found out he was diagnosed with Autism Spectrum Disorder, we had a course of action we could take to help him function more effectively in society."
Melinda Waller tried to explain away the signs of autism before Tristram was diagnosed.
"The biggest struggle was not being able to communicate with him; he could not talk," she said. "I did not know when he wanted or needed something. We taught him to take our hand and walk us over to what he wanted."
"We noticed he was 'funny' in social situations; he wasn't interacting with other children in a 'normal' way; his reaction to different situations was different than 'normal,'" she said.
The Wallers' concern grew when Tristram was about 18 months old and he started to lose all of the words he had already learned; they were tired of getting roundabout diagnoses for their son and it was time to seek out the root of Tristram's issue.
Melinda Waller said that early diagnosis is the key to start working with a child to achieve their fullest potential.
"Tristram is a lot better behaved," she said, crediting his therapists.
"When he first started with us, he had very little language. He could not tell us when he wanted something," said Pete Libby, lead behavioral clinician, Colorado Autism Center in Colorado Springs. "Through language, his inappropriate behavior was reduced and his (ability to sit and focus on tasks) has gotten 1,000-percent better. He is the poster boy for the applied behavioral analysis that we use to help our kids progress."
Libby said that behavior analysis focuses on the principles that explain how learning takes place. By applying those techniques and principles, it brings a positive change in behavior by rewarding them for a desired outcome.
Billy Waller said he is amazed with how far Tristram has progressed in such a short time.
"His interactions with people have changed. Before, he wouldn't do well with large groups, and now he seems to do well with groups and social interaction, without stressing out or having a meltdown," he said. "Of course, he will get to the point when he is tired and will be ready to 'go home now.'"
He added the treatment Tristram has received has improved their life as a family, and that he is extremely proud of his son.
"As a family, we are doing great," he said. "My son's workweek is generally harder than mine. He is involved in three different programs that occupy his whole day, and he does a great job of dealing with it."
Billy Waller said that he credits his wife with their son's success as well.
"My wife manages the household and takes Tristram to all of his different appointments throughout the week," he said. "I could not be active service without her support."
Tristram's typical weekly schedule includes three, four-hour appointments of applied behavioral analysis; two, one-hour sessions of speech and occupational therapy; and four days of afternoon preschool.
Melinda Waller suggests parents dealing with similar ordeals should take their concerns to their doctor. She added that Tristram is no different from any other child.
"He just thinks differently. Don't lower your expectations just because of a diagnosis," she said.
What is autism?
Theresa Yakich, autism program manager, Colorado Autism Center, explained that autism, or Autism Spectrum Disorder, are general terms for a group of complex disorders of brain development that begins at birth or within the first two-and-a-half years of life.
"These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors," Yakich said. "Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors, which are markedly different from those of typical children.
"Children with less-severe cases may be diagnosed with Pervasive Development Disorder or Asperger's syndrome," she explained. "Asperger's is characterized by normal speech and verbal abilities, but displaying less severe autistic social behavioral problems."
Yakich added that military children on the spectrum have an even harder time, constantly having to adjust every few years from changing duty stations.
"It is always tough for a child with autism to have to start over with a group of people," she said. "Military life is particularly difficult for children with autism and their families. They have to frequently change duty stations and face social uncertainties with the ever-changing faces of new peers."
Libby said that some of the indicating factors to look for are not giving eye contact, not having a social smile in infancy and not attempting to imitate sounds.
"Autism is different; it is not cookie-cutter, which is why the puzzle piece is so perfect for the symbol of autism. Every case is different. It is difficult to define because each child with autism is different -- no two are the same."
"If you have a child that is not meeting developmental milestones, talk to your primary care manager or to the (Exceptional Family Member Program) so that they can get a referral to an off-post agency for early intervention," said Susan Moyer, manager, Fort Carson EFMP. "What that early intervention program does is evaluates children between birth and 3 years of age, in multiple different developmental areas, to determine if they have an Autism Spectrum Disorder. What can be typical for a child on the spectrum is they are developing normal, then all of a sudden, around 18-months-old, they start losing all of the things they have learned."
Moyer said if a family has concerns after talking to their primary care manager, they can request a referral to a developmental pediatrician, which specializes in children on the spectrum.
A family with a child who is on the spectrum must enroll with EFMP to start Tricare extended health care benefits.
"Once enrolled in EFMP, they become eligible to receive the treatments necessary to begin working with your child to help them achieve their full potential," Moyer said. "The bottom line is that there are so many Soldiers who are scared of EFMP because they think it will ruin their careers. It can actually enhance their careers because the stresses and burdens are lessened once their children receive the care they need."
Even if families are not enrolled in the program, EFMP can provide assistance.
"Whether or not you are enrolled, come to us for help," she said. "If you have questions, we are here and can provide you with a plethora of written information from reputable sources. We also provide service advocates to help with any problems for parents of school-age children."
EFMP can be reached at 526-4590.
•An estimated one out of 42 boys and one in 189 girls are diagnosed with autism in the United States.
•More than 23,000 military children have a diagnosis on the autism spectrum.
•Autism is the fastest growing serious developmental disability in the U.S.
•Autism treatment costs a family $60,000 a year on average.
•There is no medical detection or cure for autism.
The following "red flags" may indicate a child is at risk for Autism Spectrum Disorder. If a child exhibits any of the following, ask a pediatrician or Family doctor for an evaluation:
•No big smiles or other warm, joyful expressions by 6 months or thereafter.
•No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months.
•No babbling by 12 months.
•No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months.
•No words by 16 months.
•No meaningful, two-word phrases -- not including imitating or repeating -- by 24 months.
•Any loss of speech, babbling or social skills at any age.