Overcoming Barriers to Help a Son with Autism
Date Published: May 20, 2021
Kanesha Burch got a lot of advice about how to raise her son. Antonio, just 3, would throw things, hit, and have meltdowns. He struggled to communicate.
People told her that he was sheltered, spoiled, or in sore need of discipline. “This one lady told me, ‘You need to keep a spoon in your purse and every time he acts like that, you need to just pop him with that spoon.’ So I said, ‘I don’t know you, and I’m not going to disrespect you, but I got this,'” says Burch, still surprised that a stranger told her to hit her child.
Burch knew something else was going on. She took her concerns to Antonio’s doctor, who diagnosed him with autism. She did not know much about autism, but she quickly learned two things. Antonio faced a long wait to see an autism specialist. And applied behavior analysis (ABA) therapy for autism was expensive and not covered by his insurance.
To help her son, Burch returned to school to study ABA as part of a master’s degree in psychology. She and Antonio also began to participate in autism research studies, such as SPARK.
Today she shares what she has learned with others, as an advocate for research and a teacher. She is especially concerned about families who lack resources. “I’ve been that parent,” she says.
Autism, Behavior, and Rejection
Burch was working and studying to become a teacher when her only child, Antonio Gaylord, was a toddler. He spoke a little, but eventually he stopped saying even those few words. “As his speech went away, he became very aggressive,” she says. He did not want to play with anyone. He would line up toys or throw them. Bright lights, loud noises, crowds, and certain foods really bothered him.
At his day care, Antonio seemed fearful when approached by his teacher. Burch discussed her concerns with an official there. The result? “She basically kicked him out,” she says. Burch took Antonio to a second day care. After a week, he was again invited to leave. A third day care refused to enroll him, saying it could not meet his behavioral needs.
By this time, Antonio’s pediatrician had diagnosed him with autism. Burch felt both relief and fear at that news. She was glad to have a name for his condition, and a path forward to help him, she says. But she was also fearful about his future.
She began researching autism and the words “applied behavior analysis” kept popping up on her screen. ABA is a broad name for evidence-based treatments, but her son’s insurance would not pay for it.
Burch decided that she would become Antonio’s ABA therapist. She began studying ABA as part of an online graduate program.
ABA as Part of Everyday Activities
She started looking at her son like a behavior analyst would. Aggression is a common behavior in children with autism. What triggered Antonio to hit or throw things? She realized that Antonio would become aggressive when he could not communicate. If he could not make another child understand that he wanted to play, for example, he would try to pull that child to where he wanted to play, she says.
She began working on developing his speech. She labeled things in their home with notecards. She would point to objects and give him the word for it. She encouraged him to string together words to make sentences. “I never stopped talking to him, and I never stopped giving him the opportunity to express himself,” she says.
She put toys on the floor and taught him to play with them. She would reward appropriate behaviors and redirect him from undesirable ones. She took Antonio to playgrounds and watched him play with other children. When he ran into difficulty, she would tell him to apologize, and remind him to use his words, to wait his turn, or to share. “That’s what ABA is all about,” she explains. “You replace the unwanted behavior with the behaviors that you want. And you reward the child, and you do that consistently.”
Antonio got an Individualized Education Program and attended a pre-kindergarten program for students with developmental delays.
Joining Research Studies on Autism
Faced with a long wait to see a specialist, Burch enrolled Antonio in the first of two research studies at the Marcus Autism Center in Atlanta. “They were trying to gather more data to help improve the resources available in the black and brown community, so I wanted him to be a part of it,” she explains. As part of the study, Antonio was evaluated by specialists, who confirmed his autism diagnosis, she says.
A Marcus employee was intrigued by Burch’s efforts to help Antonio, and contacted news outlets about her. Stories about Burch and Antonio appeared on a local news station and the website of Good Morning America.
Burch has now earned two master’s degrees. She is a second-grade teacher in Georgia, where she lives with Antonio and Antonio’s stepfather, Reshaun Owens. She is eager to use what she has learned to help others. She has requested that children with autism be assigned to her general education class.
Unanswered Questions about Autism
Burch has some questions about autism, such as what causes it. Antonio is the first person in her family to be diagnosed with it.
She saw an online advertisement for SPARK, an autism research study funded by the Simons Foundation. SPARK collects saliva samples from people with autism, and their relatives, to help uncover genes that are linked to autism. SPARK also lets participants know if it finds a genetic change linked to autism in their DNA. She and Antonio sent in saliva samples for analysis in 2020.
She encourages others to participate in research, especially minority families, who are underrepresented in autism studies.
Some studies, such as SPARK, will provide information to parents about their child’s behavior and development that they might not otherwise get.
“There are a lot of resources that aren’t available to many families, because of income,” Burch says. “I’ve been that parent. I wasn’t able to get ABA because they wanted a certain type of insurance that I couldn’t afford at one point in time. So, I feel it would be very beneficial to get research out to those families so that they are able to take advantage of all the resources available to them, to help their children in the most efficient way possible.”
Science, Pokémon, and Socializing
Today Antonio is a first grader who loves science, math, art, Pokémon, video games, sports – and socializing. “He wants to play with everyone,” Burch says.
The seven-year-old earns good grades and made the honor roll, his mother says.
Antonio adds, “I have a big brain.”
“Mommy’s very proud of you,” she answers.
- Information about SPARK research
- Watch a SPARK webinar, “What You Need To Know About Applied Behavior Analysis (ABA) Therapy.”