Anni Fuenmayor of Conway cried when her son was first diagnosed with autism. Now she advocates for awareness of the disorder.
“I try to engage everyone I know,” she said.
Fuenmayor, 33, a wellness/diabetes educator at Conway Regional Medical Center,
wants to help others understand the unique disorder. This is the second year she has organized an autism-awareness
campaign in April for the Wellness and Diabetes Services Department.
She ordered pins in the shape of puzzles, the symbol for autism, for the seven employees to wear for National Autism Awareness Month. They also wore blue on April 2 for World Autism Awareness Day.
Her 9-year-old son, Agustin, was diagnosed with high-functioning autism when he was 4.
“Whenever he was a baby, I already knew there was something very unique about him. He was always crying. Now it makes sense, because I didn’t realize he has sensory issues.”
He walked at 8 months old, but he would spin “for hours and hours and hours,” she said. “I said, ‘That’s not normal.’”
By age 2, he was barely speaking.
A physician at Conway Children’s Clinic mentioned Asperger’s, which is on the autism spectrum, as a possible cause of her child’s delays.
“I had no idea what he was talking about, but my husband knew,” she said. “My husband said, ‘No, he’s just like me. He’s a little delayed on the speech; he’s fine. My mother’s instinct was, ‘I think we really need to look more into this.’”
Her instincts were correct.
Agustin was diagnosed with “autism spectrum disorder.”
“I cried, like a normal reaction for a mother,” Fuenmayor said.
The Arkansas Autism website describes autism as a neurobiological disorder that can range from mild to serious, and it is often noticed in children at about 18 months when they lose language, have a delay in speech or have repetitive actions and make little or no eye contact. Some people become loners who have difficulty interacting and communicating. On the severe end of the spectrum, people with autism are locked in their own world and can’t talk or take care of themselves.
In 2018, the Centers for Disease Control and Prevention reported that approximately one in 59 children is diagnosed with an autism spectrum disorder. Boys are four times more likely to be diagnosed with autism than girls.
Dr. Pebble Sutherland, pediatrician at The Children’s Clinic of Conway and Greenbrier, said “many of the signs of autism are subtle and can overlap with behaviors that might be expected in some typically developing children.”
Fuenmayor said Sutherland is Agustin’s pediatrician.
“Some parents may notice that their child isn’t as interested in ‘give and take’ as other children — not exchanging smiles and hugs, not sharing interest or excitement with other people, ignoring others, often seeming to be in their own world or preferring to play alone. Communication and forming relationships are hard, so children with autism may not respond to family or acquaintances in the ways that are usually expected,” she said. “Children with autism often have trouble adapting to new situations. Change is stressful, and they may have strong behavioral responses to change. This can make going about normal everyday activities quite challenging for families affected by autism.”
Agustin is a third-grader at Woodrow Cummins Elementary School in Conway and is having a good year, his mother said.
“He’s very smart. He loves numbers; he’s great at math,” she said.
No two children who have autism react the same, she said.
“It’s kind of like a puzzle that represents autism — no two pieces are the same,” she said. “When you know one person with autism, you know one person. You don’t know everyone with autism. They may be amazing at playing piano, but not writing — or math, but not reading.”
People with autism share some characteristics. Agustin gets overwhelmed in open spaces and by loud sounds, which is common for children with autism, she said.
“When he was a child, he would cry every time an airplane passed and a train, but he got excited about the train,” she said. “He would line things up, constantly, cars, or pillows on the couch. If you moved that pillow or that car, it would be a tantrum, the end of the world.”
Fuenmayor said some educators aren’t trained in how to deal with children who have autism.
“When Agustin first started kindergarten, we had an amazing teacher. She was great … but didn’t have tools to know how to talk to my son. He would go underneath the table, and they would call me to help.”
She said his third-grade teacher at Woodrow Cummins “is amazing.”
“The teacher now, he knows to go to [Agustin’s] eye level and talk to him and tell him, ‘You’re safe. If you’re overwhelmed, let’s go to the bean bag.’ … It’s just educating the teacher. [Agustin’s] behavior started improving; his social skills improved,” she said.
Agustin is allowed to take a breather, go to the bathroom, remove himself to calm himself.
She said Agustin’s educators and therapists have been invaluable, including his therapists at Pediatrics Plus, where he receives occupational therapy. This year is the first year Agustin hasn’t had speech therapy.
The problems some children with autism have socially can cause depression, she said.
“Most of the depression comes from people who don’t understand them because it’s an invisible disability,” she said.
“As of right now, I work full time. We do activities with Community Connections, and he does martial arts, which helps him with body control and discipline.”
Community Connections is a nonprofit organization that provides three extracurricular activities for kids with special needs, and it includes the Autism Resource Center of Arkansas. The resource center provides parent consultations and a resource guide, as well as a camp for children with autism and other disorders. More information is available at communityconnectionsar.org.
Fuenmayor said a little understanding and patience with people who have autism — and their parents — can go a long way.
“If [a person with autism is] not looking you in the eyes, don’t think they are being disrespectful. Looking them in the eye is a little too personal to them. It’s like kissing someone. They’re still listening.
“Or if someone is slapping their arms, they may have autism. Don’t tell them, ‘You’re weird.’ That increases their anxiety,” she said.
“I have heard people say to my son, who is 9 years old, ‘Oh, yeah, Agustin is just weird like that,’ or ‘He’s just crazy.’”
Fuenmayor said people should be understanding if a child is having a tantrum and not judge the parents.
“Don’t give them that stink eye. … Parents are doing their best,” she said. “Believe me, they may not have slept for months, or even years.”
She said Agustin is aware that he has autism.
“He knows he’s different; he’s unique,” she said.
Fuenmayor said she wants for Agustin what most parents want for their children.
“My hope and my goal are always going to be to have a successful, independent adult human being. I want to give him all the tools and skills to be successful,” she said.
Someday, she hopes the puzzle of autism will be solved. Until then, she’ll continue to do her part by promoting understanding and awareness of what makes her son unique.
Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.