April 30, 2014 - Laten Terry, 3, sits quietly in a chair, scribbling on a piece of paper. Suddenly, he is up and pushing a swing, then moves quickly to pick up a pen, which he trades for chips before climbing into a play tunnel.
Laten Terry, 3, plays at Judson Center in Royal Oak. Photo by Susan Bromley (click for larger version)
His actions seem like that of any normally active toddler, except within a few minutes, something seems different about him. Laten doesn't make eye contact with any of the three adults in the room at the Judson Center in Royal Oak. His eyes rarely look in their general direction, not even when his name is called multiple times. In 20 minutes, he never speaks an intelligible word.
Laten has autism.
"When we found out he had autism, people would say, 'We're so sorry' and we knew it came from a place of love, but please don't say that," said Angela Terry, a Brandon High School graduate and Laten's proud mother. "What would be the worst is for everyone to look at our son with sadness. This isn't a death sentence. We are going to defeat, overcome, and embrace it. He is so beautiful and so great, for us to allow any negative thoughts is impossible. We don't look at this as horrible. It's our life and for whatever reason we were gifted with this."
Angela and Michael Terry, Laten's father, have been together nearly 20 years. They had never really wanted children and instead planned to just travel the world. When a surprise pregnancy ended in a miscarriage, they were devastated. They knew they wanted a child after all and began trying for what they knew would be their only child.
"When trying to conceive, I prayed, 'Please bless us with a child with a good soul, not a cookie cutter kid,' and we got Laten," said Angela of her son, who will be 4-years-old in less than three weeks. "From the moment he was born, he is so extraordinary and we are always like, 'How could we make that?' We made something so beautiful."
Laten's first year passed and he had met all developmental milestones except one. At 12-months-old, baby books told Angela that Laten should be saying two more words in addition to "Mama" and "Dada." He wasn't.
Angela researched online and saw that non-verbalization is one of the signs of autism, a disorder affecting brain development that affects about 1 in every 68 American children, according to the U.S. Centers for Disease Control and Prevention. More than 2 million individuals have autism spectrum disorder in this country and tens of millions more are affected worldwide.
The causes of autism are not definitively known, but scientific research during the past five years has identified rare gene mutations associated with autism, according to autismspeaks.org, as well as environmental risk factors including advanced parental age at conception, maternal illness during pregnancy, and difficult births.
Laten was not displaying other classic signs of autism, such as spinning or repetitive behaviors. Her pediatrician didn't think she should be alarmed. But on a family trip to Disney World when Laten was 18-months-old, the little boy stared only at the ground and confetti as a huge parade passed him by. Upon their return to Michigan, Angela requested speech and hearing evaluations. Laten's hearing was fine. His delayed speech entitled him to the state's "Early On" intervention program.
Angela also enrolled him in a play group and would take him to lap sit at the library, but more often than not, they would leave crying. Laten wanted to get up and run, he didn't want to participate in things other children did.
Still, he was very loving, not typical of an autistic child, Angela said. Concerned that he might have attention deficit hyperactivity disorder, his parents tried a gluten-free, dairy-free diet, but the problems continued. He didn't like transitions from craft to story time, play group was horrible, he wouldn't stay in his chair at speech therapy. One day, the speech therapist told Angela there was "an elephant in the room," and finally it was out— Laten, now 2-and-a-half, was displaying signs of autism. In tears, Angela left and got a referral from the pediatrician to the Henry Ford Autism Center. It took almost six months to get an appointment, and then six hours to get the diagnosis— Laten did indeed have autism. As Michael took Laten to the car, Angela found herself crying once again.
"It rocked my world," she remembers. "The nurses were hugging me and I said I didn't know what to do and they told me, 'You've been doing it.' And I realized I did. I thought, 'Why me?' but then I thought, 'Because we can do it.' I remembered that this was what we prayed for, 'Please don't give me a cookie cutter kid, give me something special.' How much less of a cookie cutter kid can you get?"
In September, Laten began going to the Judson Center in Royal Oak five days a week, three hours each day, for applied behavioral analysis. Jacob Papazian, a behavior specialist at Judson, said when Laten first arrived, any demands made of him, such as "Look at me," or "Touch your head" would result in the world crashing down, with Laten slamming his head into the wall over and over. Laten was soon taught instead to touch a picture that says "Break," allowing him to get out of whatever he has been asked to do.
This past Wednesday, Laten's case manager, behavior tutor Taylor Cuddy, showed him more such pictures to choose from, including one of crayons, another of pens, one of Mr. Potatohead (his favorite toy), and one that he reaches for— of chips. This is how Laten communicates. One day, they hope he will be verbal, but for now, progress is being made in this way.
"He has made huge bounds," said Papazian, who notes the tantrums have mostly stopped, and more importantly, Laten is no longer inflicting self-injury. "We have made great progress on pre-learning skills. We have to teach basic things like responding to his name and making eye contact."
Emily Besecker, program manager for behavior services, said each child with autism is different and applied behavior analysis (ABA) focuses on the needs of each individual child. ABA looks at reinforcement of functional behavior, focusing on communication and various developmental social skills to help autistic children function more independently in their environment.
At the Judson Center in Royal Oak, 48 children are enrolled in the ABA program, with a nearly 2-year waiting list. While ABA has been around as a treatment option for a long time and is popular, it wasn't until 2012 that insurance companies in the state were mandated to cover evidence-based treatment. Before insurance began covering the therapy, desperate parents were taking out loans and second mortgages to treat their children with autism and board certified behavior analysts took jobs outside the state.
The vast majority of children enrolled in the ABA program at Judson are under the age of 6, as the Medicaid benefit only applies until this age for this treatment.
"Early intervention is very important," said Besecker. "When you're younger, you learn faster. If I can teach him pre-learning skills now, he'll be further along by 10. As they master goals, we add new goals. We have a sequence that you teach skills as you would with any child."
"We are making a difference and it's very rewarding," continued Besecker. "We see a lot of progress in a short time and parents are excited to see the difference in their child at home. Kids come in not talking and a year later, they are talking up a storm."
Judson requires all parents to receive training as well, so that what children learn at the center is carried over into the home.
Angela is excited to see the progress Laten has made, a result of not only the applied behavior analysis, but also speech and occupational therapy sessions weekly. He knows how to stack blocks now, play with toy cars, throw a ball. At a recent speech therapy session, Laten spoke 35 words and did 62 gestures, requests or responses, which she called "huge." She is waiting for him to tell her and Michael what he is thinking, but he does have the capacity now to say "happy" when he is and he makes his parents happy, too.
At first, Angela was afraid of the autism "label."
"Labels are for cans," she said. "But we were so lucky to get that label, because it opened every door. Had it not, he wouldn't have progressed, he would have gotten worse. We are addressing all of his issues and it's amazing to see our son evolving... It was scary, I was so afraid of what will come. It was devastating, but even the worst day is better than any day before we had him. Once we embraced it, it was a relief to get the diagnosis. Why isn't he talking, why isn't he doing this? Now we understand. We got this."
Susan covers Brandon Township and Ortonville