Finding out what works: Autism turns parents into therapists

Five-year-old Zedrick loves to dance to anything Taylor Swift. To perfect his moves to “Look What You Made Me Do,” he replays the tune over and over on his daddy’s mobile phone. “That song is stuck in my head and I already know all the lyrics,” says Zedrick’s mother Lorilyn Sta Ana. “It’s what makes Zed happy. And when he’s happy, there’s less problems.”

Mary Cruz talks to her child Pedro in a regular fashion. “I always talk to him about anything,” she says. “I believe that the more words I feed him and the more he hears it, the more he’ll use those words.” Pedro has since been showing the ability to complete a sentence.

Josephine Blas communicates with her son Joseph through prompt cards. Joseph doesn’t talk. “I practice speech with him but he’ll only do it when he wants,” Blas says. “I took pictures of his things and he’ll give me the picture if he wants something.”

Raising a child with autism can be so stressful because it requires constant experiments. Some experiment with vitamins or dietary adjustments. Many parents rely on gut feelings and advice from those who are similarly situated. But instinct sometimes fails. Autism is a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Because there is no one-size-fits-all procedure to treat children with autism, parents resort to trial-and-error and apply whatever works. Trying to find a cure for autism is like putting together pieces of the jigsaw puzzle— the symbol of this mysterious developmental disorder.

This is why parental involvement is widely recognized as critical for effective autism treatment, and intervention programs at schools incorporate the parents’ input in their children’s individualized education program, specifically tailored for a particular child.

An estimated 2.41 percent of children in the United States have autism spectrum disorder, according to a new analysis of data from the U.S. National Institutes of Health. The most recent previous estimate put autism rates at 1.47 percent in 2010, researchers from the new study said.

The analysis indicates that autism spectrum disorders now affects about 1 of every 41 children, a huge increase in autism from previous decades. Experts have argued that the increase in autism might be due to new diagnostic criteria that broadened the definition of the condition. For example, high-functioning children with Asperger syndrome now are diagnosed as having autism spectrum disorder.

Because there is no one-size-fits-all procedure to treat children with autism, parents resort to trial-and-error and apply whatever works. Raising a child with autism is like putting together pieces of the puzzle— the symbol of this mysterious developmental disorder.

Lorilyn and Zedrick

Zedrick was two when he started showing odd behavior. "He was repetitive, liked running around and around in circles and always dancing the Moon Walk. I thought Zed was going to be like Michael Jackson,” Lorilyn Santa Ana says in jest. “Later I was told by Guam Early Intervention Service that those were early signs of autism.”

With the help of GEIS, Zedrick was able to get into summer school where he unlearned certain behaviors such as running around. “It was because he was learning new things. He especially became interested in reading and storytelling," says Santa Ana. “His summer school teacher even said he was able to sit the entire time, which is amazing because autism’s No.1 behavioral issue is the kids can’t sit long. Autistic children always need to move. His teacher said was Zed like their supervisor or checking on everyone. Him being in school has helped him a lot.”

But dropping certain habits means picking up new ones. On certain days when dealing with the stress, a parent can feel alone. Santa Ana finds refuge on Facebook, where she found Rebecca Perkins, an expert in meltdown management, author and founder of My Special Child. “I'd stay up late and chat with her about my son. Especially when he started showing odd behaviors, like how he’d play with his nipples when he started at Headstart. Rebecca explained that this was just a temporary phase and that it was a way to soothe himself.”

With 19 other kids in the class, the noise was too much for Zed to take. “So he had to calm himself by touching his nipples so he won’t have a meltdown,” says Santa Ana, who works fulltime as a mother. “His first year of Headstart was tough not just for him, but even for me."

It's difficult learning that your child is different, but with the Autism Community Together, a local nonprofit group for families with autistic children and adults, Santa Ana has found a place for support. " I really look up to the older mothers and I enjoy listening to their advice. They are very encouraging and tell me 'Just let your son be' and 'Don't mind those judgmental people who don't accept you.'”

Mary and Pedro

Ten-year-old Pedro likes playing video games and listening to his daddy speak to him in Chamorro. He doesn’t make eye contact nor does he like to talking. But when his mother, Mary Cruz, asks him to mind his manners, Pedro will mutter a soft “Please and Thank you.” Although he seems characteristically shy, Pedro is open to life and enjoys his family. This hasn't always been the case.

When Pedro was two and a half, Cruz could tell something was different about her son. ”When he wouldn’t bond, there was something there that alerted me. If I carried him, he wasn’t comfortable, he was stiff."

When Pedro was diagnosed with autism, Cruz was left with more questions than answers. “I didn’t know anything about autism. I had been teaching for 15 years when he got diagnosed. I never had an autistic student,” she says. “I went to Doctor Google and read things about autism like picky eating and lack of sleep and I noticed them in Pedro."

Cruz teaches at the school where Pedro goes, so she's able to keep a close eye on his development. “A couple years ago, Pedro had an aide he was close to and everything was great, but one day the aide told me his wife was expecting a baby, so he had to get a full-time job,” says Cruz.

“Moments like that leave our kids in a transition. They have to separate with someone with whom they have built a relationship and with autism. It's hard for them to make a bond, to build a relationship. When they switch to another aide, it can be very difficult,” she laments.

As a teacher and mother, Cruz is aware of shortcomings of the Guam Department of Education’s special education program, which hires one-to-one aide indiscriminately without proper screening. They are not expected to take professional training. “One-to-one aides who apply for GDOE just need a high school diploma," she points out. “There's nothing else required. For someone who isn’t exposed to special needs children, they won’t know what they are in for, and then the turnover is fast. It can be too much. And they’re only hired as part-time employees.”

Cruz gets advice from other parents who are also members of ACT. “I can’t try all the strategies suggested because you have to adjust it to your child,” she says. “Autism in itself can be the same diagnosis for different children, but it’s always different. In ACT, we share strategies, and it may work for some families but it won’t always work for ours”

Pedro can catch two to three hours of sleep and have a great day without getting tired, Cruz says. Pedro had the same sleeping pattern when he was four. His doctor explained that Pedro’s internal clock worked differently. “My husband and I would take turns staying up to watch Pedro,” Cruz says.

Pedro falls asleep at 6 p.m. playing his game, then wakes up at 8 p.m. and stays awake all night. “My friend told me to try using lavender to get him to sleep, so I got him lavender oil,” Cruz says. “It hasn’t worked yet, but I’m trying. He has a white noise machine and he hums with it as he tries to fall asleep.”