By the time they finish their first year of life, most children are learning the basics of communication. They wave “bye-bye.” They respond to basic requests. Some have already developed a limited vocabulary. They’ll say “Mama” or “ball,” and try to repeat words they hear from Mom or Dad. That wasn’t the case with Lucas Becker. Several months after his second birthday, he still struggled to communicate. “He had no language except for one or two words,” says Lucas’ mother, Brandy. “He was always taking our hand and dragging us places because he couldn’t communicate what he wanted.” When he couldn’t make his parents understand, he erupted. Brandy describes it as a “meltdown.”
They seemed to last forever. Sometimes an hour. Sometimes two hours. Unable to calm Lucas once the meltdown began, Brandy and her husband, Jeffrey, stopped taking their son out in public. “It looked like a child throwing a fit,” she says. But she knew Lucas’ behavior was more than just a temper tantrum. It was something else.
The diagnosis arrived a week from Lucas’ third birthday: autism.
A Complex Disability “If you’ve met one child with autism, then you’ve only met one child with autism,” says Tiffany Coto, whose son, Christopher Wilborn, had the same developmental delays and frequent breakdowns as Lucas. “When I tell someone he’s autistic, they always say, ‘He doesn’t look autistic.’ But what does an autistic kid look like?”
Unlike, for instance, Down Syndrome, autism doesn’t have a physical component visible in a child’s appearance. Instead, it impacts their behavior, communication and social skills. “You could see three different kids [with autism] in one day and you’d never know until you interacted with them,” says Coto.
First identified in 1943 based on studies of children who showed little interest in social interaction, autism includes a broad spectrum of brain-based disorders that impair a person’s relationships and communication skills. According to the Centers for Disease Control, people with Autism Spectrum Disorders (ASD) exhibit “unusual behaviors and interests.” In addition, they have “unusual ways of learning, paying attention, and reacting to different sensations. The thinking and learning abilities of people with ASDs can vary – from gifted to severely challenged.”
Autism is a lifelong disorder with no known single cause, though the Autism Science Foundation reports that researchers have recently uncovered what may be a genetic basis. (Some celebrities and advocacy groups have speculated that autism is caused by environmental triggers like vaccines, but multiple international studies have disproven these claims.)
Regardless of its cause, the commonness of autism seems to be increasing. As of 2014, autism occurred in as many as 1 in every 68 U.S. births. It’s more likely to impact boys than girls. Though autism is often associated with cognitive impairments, many autistic children have above-average IQs. “Christopher remembers everything,” says Coto. Her son is nearing the end of eighth grade at Westover Park Junior High, where he has been integrated into regular classrooms for a few of his classes. He is already looking forward to his freshman year at Randall High School. “He can pick up a video game and have it figured out in less than 15 minutes.” Coto says many of the autistic children she knows have quirks that make them intensely interested in subjects like science, dinosaurs or computers. “They lack in social skills and you have to remind them to wash their hands or brush their teeth,” she says. “But they are super-smart.”
One autistic child may lack communication skills but be a high achiever in math and science (many high-functioning individuals on the autism spectrum have become successful computer programmers, software developers, and engineers). Another may talk constantly and have high language skills. Some, like Christopher, may talk only when required. During his younger days, when Christopher did speak, he often relied on phrases he’d heard in movies or on TV. “He couldn’t come up with the words on his own, but he would watch movies and take phrases out of them and put them into the [real-life] situation he was in,” Coto says.
A few autistic children may struggle to communicate at all. Brandy Becker discovered this was the case with Lucas.
Language Barriers Once diagnosed with autism, most local children begin speech therapy and applied behavioral analysis, which focuses on the subtle ways autism influences a child’s response to the world around him. One of Amarillo’s most popular therapy centers is Specialized Therapy Services (STS), which also offers early childhood education and general education through its Hands on Achievement Academy.
At STS, Lucas Becker’s speech therapist introduced his family to the Picture Exchange Communications System (PECS), which helps children communicate using illustrations that can be affixed to cards in a notebook. Now almost six years old, Lucas will place a picture that means “I want” on a card. Next to it, he will place an illustration of a ball. He’ll then give that card to his mom. Brandy knows exactly what her son is trying to communicate.
“It’s got a variety of different things, from food to toys to movies, that he wants on a daily basis,” she explains about the system. “So when he wants something, he can look throughout the book and take it out and put it on a card.” Eighteen months ago, before Lucas started therapy, he wasn’t speaking at all. After progressing rapidly through the various stages of PECS, he has now memorized the words and phrases associated with many of the cards, like “I want.”
He talks to his parents now.
Becker describes this change as nearly miraculous. Before therapy, Lucas’ only method of communicating was grabbing a hand and crying until they figured out what he wanted. “Some parents know what their child wants because they tell you,” she says. Not Lucas. “I knew what he wanted by his cry. He had three different cries. One was tired, or hungry or thirsty. I got really good at identifying a cry or whine.”
His ability to communicate has decreased the frequency of those major meltdowns. “I can ask him, ‘Lucas what do you want?’ and he’ll go get his book and then he’ll repeat it,” she says. According to Becker, it’s difficult for other parents to understand why this is such a big deal to them. “When kids are nonverbal you feel like you are failing them, even though you are doing the best you can. Now, him having some language makes us all feel accomplished. He’s getting everything he needs and deserves.”
Comparing where he was two years ago to his growing language skills today, Lucas’ parents are ecstatic.
Misunderstood Volatility Karen Day is the owner and CEO of Specialized Therapy Services, and has been working with autistic children for more than two decades. She’s seen countless success stories involving children like Lucas and Christopher, who also attended STS and its Hands on Achievement Academy. She says public understanding of autism and therapies to treat it have brought enormous changes since she first became a therapist. “We’ve broadened our base of understanding about who is autistic,” she says. “Kids in the past who might have just been thought of as ‘strange little kids’ are more precisely identified now.” Half a century ago, autistic children might have been institutionalized.
“My favorite story is about an African family who had a child that was different,” she says. “Their culture forced them to take him to the witchdoctor. They stayed for three days [until] the witchdoctor looked at the symptoms on his computer. He told them he thought it was autism.”
The increased awareness results from worldwide organizations like Autism Speaks and the work of advocates like Dr. Temple Grandin, an influential professor, author, and speaker with autism. Still, Day believes the public harbors a variety of misunderstandings about the condition.
“One of the biggest misconceptions is that [autistic children] are volatile,” she says. “That they’ll have a meltdown at any moment in time and that it’s a choice. It’s not.” A child throwing a fit may be doing it to get attention from a parent. But many autistic children are unable to control their actions due to a condition called sensory processing disorder (SPD) – an extraordinary sensitivity to certain elements of their environment. That means meltdowns are triggered by something entirely out of the child’s control.
It could be a noise the child perceives as unbearable, like the hum of a store’s fluorescent lights. It could be loud voices on a store’s loudspeaker, or the distracting motion of people in a crowded place. Sometimes it’s even related to a child’s diet or wardrobe. “Some children are hypersensitive to their clothing,” Day says. “We are lucky that most clothes don’t have tags anymore, but [for] a child sensitive to touch, that tag will drive them crazy.” What might cause annoyance or squirminess in a normal child can build into a full emotional breakdown for an autistic boy or girl.
Strangers at the grocery store who mutter that an autistic child “just needs a good spanking” have no idea what’s going on, but their judgment distresses parents like Coto and Becker. From a therapy standpoint, says Day, “We are always working on what we can do to prevent and avoid these triggers.” But when a trigger occurs out in public, followed by a meltdown, the impact is nearly as hard on the parents as on the child.
The result is social isolation. Not just for a child who can’t speak or can’t handle the commotion of the mall, but for the mom and dad who love him.
The Heartbreak of Isolation “They have all these feelings coming in at one time and they don’t know how to handle it. Lights and smells and sounds are too much to take in,” Becker says of her family’s earliest experiences with Lucas. “It’s heartbreaking because you can’t stop everyone in the store and explain your situation. You just want to do what’s right for your kid at the moment.” Unable to control Lucas and frustrated by the judgment of strangers, Becker stayed home with her son all the time. “I used to close myself off and not go out in public and be with him where he feels safe. But that’s no way to live, and he has to get used to those situations. If they’re never in those situations, they won’t learn.”
As Lucas began communicating more, the meltdowns diminished in frequency and intensity. His parents began taking him out in public – first to smaller shops, then to larger places like Walmart. Becker discovered Lucas found the feel of marbles or small balls in his hands to be soothing. He has since relied on these objects to dampen the sensory stimulation. Having a son with autism has been a constant education for her and Jeffrey. “When he was first diagnosed, I knew nothing about autism. Hadn’t even heard of it,” she says. “It would be nice if the public knew more about autism because they wouldn’t be so quick to judge.”
That cultural segregation is one reason Amarillo’s autism community has become so tightly knit. The parents who bring their children to therapy centers like Karen Day’s STS and AmarilloABA often become parts of each other’s lives. The parent-led Amarillo Area Autism in Action schedules regular activities in order to connect these families, including movie nights, park playtimes, lunch-and-learn educational sessions, and the annual Autism Awareness Walk (see sidebar).
“Eleven years ago, I didn’t know much. I didn’t know any other families with autism,” says Coto about Christopher’s diagnosis. She was in her early 20s at the time and felt completely alone until he began attending therapy at STS. “It’s a lot of stress when you find out your child is different from the other kids, even though he’s perfect to me. It was a relief to meet more parents going through the same thing. I could talk to people about what it’s like … and they know. We aren’t alone.”
That’s one reason she and her family – including Christopher’s older sister, Celese – remain involved with Amarillo Area Autism in Action, even though Christopher “graduated” from Hands on Achievement Academy and now attends public schools. “They’ve helped in ways I can’t even tell you,” Coto says.
Now several inches taller than his mother, Christopher plays on a Special Olympics basketball team and also competes in swimming, track and bowling events. He designs the family’s Autism Walk T-shirts every year. Even though Christopher’s verbal skills are still that of a 6- or 7-year-old, he’s made friends and speaks to them in public rather than hiding behind his mom – a significant step. “You still get looks, but it’s getting better. It’s not the same as before, [when people were] like ‘What’s going on with that kid?’”
Brandy Becker describes Amarillo’s autism community as a huge family. “It’s awesome,” she says. Lucas attends a class at Hands on Achievement Academy, whose students include children with autism, cerebral palsy, and even blindness. Classes combine a regular school curriculum with intense, embedded therapy. “All the kids in Lucas’ class are very close. It’s nice, because our kids don’t have relationships with anyone besides their moms and dads. It’s a relief to see your kid have a friend. It’s a relief to have parents to talk to. You can’t talk to an ordinary parent about our situation because our situation isn’t ordinary.”
Unlike many potentially frustrating behaviors associated with childhood, autism isn’t a phase. As Becker says, “It’s not something they’ll grow out of.” It’s a disability that’s just now beginning to be understood and one that – so far – doesn’t have a cure, despite research being funded at universities all over the world. But even though it can’t be outgrown, early diagnosis and intervention can significantly improve a child’s quality of life – as well as that of his or her parents.
Rather than the isolated, institutionalized children of the past, today “we are starting to see the emergence of a new kind of child with autism,” Day says. It’s a child learning to make friends, communicate and function outside the comforts of home.
Christopher Milburn is proof. So is Lucas Becker. They represent hundreds more kids in Amarillo who are learning to interact with their families – and find their way within a community trying to understand them better.
Amarillo Area Autism in Action
Giant summer slip-and-slides. Quiet movie nights while parents enjoy coffee. Sensory-safe Santa Claus and Easter Bunny photo sessions. Amarillo Area Autism in Action has developed a year-long calendar of opportunities for autistic children and their families to interact with each other in a conducive environment.
April is autism awareness month, and one of the biggest events for these families is the Autism Awareness Walk and 5K Run on Saturday, April 2, at Thompson Park. Now in its sixth year, the superhero-themed event will draw as many as 600 people to raise funds for the program and celebrate the lives of children who have the disorder. While the 5K is a standard race – last year, one of the winners was a young man from Booker, Texas, who is on the autism spectrum – the central focus of the event is a family recognition walk. “We walk a short path so the kids don’t have to be in the middle of a crowd they can’t manage,” Day says. “They are with people they know.” Every five minutes, a family or team will walk the path together. “They are our superheroes.”
A large health and information fair accompanies the event, which features booths run by vendors and nonprofits, as well as kid-friendly activities, bouncers, and other opportunities for fun and education. Learn more by visiting stsamarillo.com or following the Amarillo Area Autism in Action page on Facebook.
by Jason Boyett
Jason is a journalist, copywriter, ghostwriter, and the author of more than a dozen books. His most recent is “12 World Religions: The Beliefs, Rituals, and Traditions of Humanity's Most Influential Faiths”, published by Zephyros Press. Learn more at jasonboyett.com.