Understanding Autism: Clovis mom shares her son’s journey

By Diana Giraldo, Reporter

The moment a child smiles for the first time, takes their first steps, or says their first word, it is a celebration-worthy milestone for parents, but for those whose children fall under the autism spectrum, these moments may not come as quickly as they should.

Shondra Flores knows all too well the feelings of anguish a parent experiences when they see their child unable to interact as other children do.

“As a mom, it all happened really quickly,” she said. “A mom never wants to hear there is something wrong or these daunting sounding words like delay or mental retardation or insitutilazation. Then to start to see the assessment scores and to hear that he is severely autistic—if he is anything I never want it to be severe.”

Jackson was four months shy of being two when he was diagnosed with severe autism.

The news came to a shock to Flores because according to her son’s doctors at his 18-month check up Jackson was deemed “typical development,” meaning he was responding as a child at his age should and was even advanced in his speech.

“During the time in between 18 and 20 months it seemed that overnight he stopped blowing kisses, he stopped making eye contact, he stopped playing games, and he stopped pointing to all his body parts,” Flores recalled. “We noticed he started to lose that and he stopped responding to us and really wasn’t interacting the way he was doing previously.”

Then another red flag was raised: Jackson began throwing temper tantrums that were out of proportion.

“It was really unusual for me,” Flores said. “During these tantrums he started hitting himself in the face with closed fists and it would be for the smallest things.”

Flores began to research self-injurious behavior and found it stemmed from one of three things; he was seeing it, he was experiencing it or he is having difficulty communicating. She knew the first two options were out of the picture, the third option sent her down the path to discovering what her child had.

Within a week, Jackson was diagnosed and began nine hours of therapy every single day. She and her son moved to Clovis where there were many more resources than the small town she lived in. Then she found the Autism Center at Fresno State, which also has a satellite center at Valley Children’s Hospital. There Jackson began an Early Intervention Behavioral Treatment program.

Time is of the essence with these children, explained Criss Wilhite, the interim clinical director of both centers and a part-time psychology professor at Fresno State who helped found the applied behavioral analysis program in 1998, which has led to an undergrad program, a graduate program, the autism center and more.

“We try to get the children as young as we can because the younger the child is, the more time the child has to learn to interact with the world in ways that most children do,” Wilhite said. “Like looking at faces responding to smiles and frowns appropriately, using words or gestures to getting their needs met, and being able to label the world around them.”

Autistic children don’t do that naturally because they are a little different. They are not sensitive to this social stimulation, explained Wilhite. If they do not respond to social input, they will not be able to learn in the way other children do through imitating, like newborns do with mouth movements, and through positive feedback from other people. If they are not paying attention to other people they are not going to learn, she said.

“Typically developing children generally start using gestures early and they are improving and they’re learning that those gestures and the sounds they make have good outcomes for them,” said Wilhite. “Autistic children don’t get that. They receive good outcomes after they scream very loudly or hit their heads on something.”

All children have needs, get hungry and hurt and if they don’t have a means to communicate these messages, by gestures or language, they develop other ways of doing so and most of those ways are problematic because they involve behaviors that are going to attract negative attention from others or it involves things like self injurious behavior, said Wilhite.

By ingressing children as young as possible in behavioral therapy there is a higher probability they are able to get to the point where they start responding to social situations correctly, Wilhite said.

To do so Wilhite, Jordan Forsythe-Gonzalez, a behavior analyst, and others use applied behavior analysis (ABA), which is the recommended therapy for autism by the American Pediatrics Society and the Surgeon General’s office of the United States.

By using behavior based science, the team helps children build basic skills like imitation, language that gets their needs met, and being sensitive to social stimuli.

The first two years of Jackson’s treatment focused on behavior modification. His training began even before arriving to the center.

“Even getting him from the car to the classroom was difficult,” Flores said. “There were times when that took 45 minutes and eight grown adults. We would do anything from enticing him with a fruit snack to walking backward with a fire truck in our hands.”

All they need is extra input, said Wilhite. She used the example of children who have trouble reading, they are labeled as dyslexic but children who have a hard time learning volleyball are not labeled as “disvolybolic.” These children need more training in social situations just like some children need more training in reading or math than others.

“It’s kind of a judgment call. All humans come in different variation,” said Wilhite. “With this particular variation these children have, it makes it difficult for them to learn some basic skills that are important in any kind of environment. With these children almost every kind of environment is difficult for them because all human environments involve other humans.”

In an environment full of toys and visual stimulus, children in the autism center are taught to ask for what they want in appropriate ways that will work in many environments, how to wait, how to get away from things they don’t want and how to tolerate what they don’t like.

When Jackson was diagnosed, he was 100 percent non-verbal, gave no eye contact, was hurtful to others, and had self-injurious behavior.

“The aggression was the bigger thing because it was almost a constant stage of frustration for him and naturally you don’t have a way of communicating when you get frustrated,” Flores said. “When we started therapy he was biting 70 times a minute, it was just non stop, and now in the last year he has only had seven bites.”

The difference is staggering, his mother said. Jackson began talking about this time last year and now is able to communicate with his mother.

“Just last year it seemed to all come together and the aggression went from happening all the time to not often at all and then he started realizing he could speak,” Flores said. “In the last year he has made tons of progress, so much now that we can go to public outings, birthday parties and to church. He still has one-to-one when he is at church and I don’t venture to the zoo or anything if I don’t have at least another adult with me, but we can at least try these normal activities.”

Flores said one day last summer everything seemed to fall into place. Just before going into Jackson’s second visit to the dentist office he told his mother, “pee, pee.” Flores knew what that meant. Jackson was potty trained at home but had never before used a public restroom because he is used to his bathroom, his soap, and his routine.

Flores took the step; they walked into the dentist office and entered the restroom.

“He went and that was the first time in a year of being potty trained he had gone in a public setting and that was huge just because potty-training itself was huge because it took about two and half years,” Flores said. “But finally I was able for him to get the skills he had mastered at home and transfer them to a public setting. I felt that was one step closer to normal, where we could do normal things.”

But the surprises for Flores didn’t end there — that day many things happened for the first time.

“When we went back out into the waiting area and he was playing with the toys and he came running toward me and he said, ‘mommy’ for the first time,” she said as her voice cracked. “It still makes me cry. It was unreal. By far a highlight just because I waited five years to hear that.”

“A lot of things that parents of typical kids take for granted like hearing mommy and going to the bathroom in public places and just little things like that, may seem little to them but are monumental to us,” she continued.

By combining forces, she as the person who knows Jackson the best and the Autism Center personnel as the ones who know autism the best, Jackson is on the path to learning to become independent.

“Our ultimate goal is for them to be as independent as they can be,” Wilhite said. “Meaning they can learn as much as they can from the natural environment, they have self-care skills, they have play and social skills that work well in the natural environment.”

In general just under half the kids with quality early intervention programs are able to go to school with typically developing peers, the majority of the rest of the kids have partial mainstreaming or are in functional classrooms in special ed programs, Wilhite said.

“We can guarantee their lives will be better than without this program,” Wilhite said. “Not all children reach the point where they are going to be indistinguishable from other kids but all of them gain skills that make their lives and the lives of their families much easier.”

To Flores the day Jackson called her mommy fortified her positivity for the future.

“That day was life changing in so many ways because I got my baby to call me mommy but even more that that knowing and hoping that he would one day have a normal life even if his normal is a little bit different than everybody else’s, which is more than OK because he’s incredible,” she said.