Date Published: February 1, 2022
Mary Lynch Barbera remembers the conversation she had with her husband vividly, even though it took place 24 years ago.
Mary, a nurse, and Charles Barbera, a medical doctor, were discussing their first-born son, Lucas. Lucas was almost 2, but he was not talking much, nor was he very curious about his surroundings.
“So you don’t think he has autism?” Charles asked her.
Mary was stunned. “He doesn’t have autism, and I never ever want to hear that word again,” she responded.
Mary now regrets those words. “I went into a deep, deep state of denial,” she says. To be fair, it was the 1990s, and autism was not diagnosed as often as it is now. And no one had recommended that Lucas be evaluated for it.
Almost a year after that conversation, Lucas’ preschool told the Barberas that their son was not ready for their class for 3-year-olds. “That prompted me to get out of denial,” Mary says.
A day before his third birthday, Lucas was diagnosed with “moderate-to-severe autism,” Mary says. Within a few months, he began receiving behavioral therapy for autism.
Mary wonders if he would have made more progress if he had started therapy sooner, even though he was diagnosed and receiving intervention at age 3. The average age of autism diagnosis in the United States is 4, although children usually can be diagnosed by 2, according to the American Psychiatric Association.
Mary’s interest in early intervention led her to change her career, and also brought her family to SPARK, the largest study of autism. “I’ve always been very interested in finding the causes of autism and finding what we could do to make things better for Lucas, and for other families,” she explains.
The Journey to Autism Diagnosis
The Barberas moved to Mary’s hometown in Pennsylvania in 1996, shortly before she gave birth to Lucas. Lucas seemed to be developing typically until around 15 months, about the time some children begin to show signs of autism or lose developmental skills. “He stopped saying ‘cheese’ to the camera. He stopped pointing.” He was also a picky eater and did not sleep well. By then, Mary was pregnant with another son, Spencer. She wondered if Lucas was just in a toddler phase that he would outgrow.
At that time, experts were still developing the screening tool that is used today by many pediatricians to check for signs of autism. When Lucas was a toddler, autism was diagnosed much less often in children. The estimated rate of autism diagnosis was 1 in 2,500 children in 1997,1 compared with 1 in 44 children today.
“Back then, you didn’t hear much about autism,” she says. When autism was discussed at all, the children with it seemed very different from Lucas, who was easy-going. For example, Lucas did not have some of the behaviors that are fairly common to youngsters on the spectrum, such as rocking, banging, severe tantrums, or aggression.
Mary did not realize that Lucas’ early speech pattern, such as repeating the phrase, “please do not feed the ducks quack quack,” was an autism symptom called echolalia. He received speech therapy around age 2, but no one mentioned autism as a possibility.
After Lucas’ autism diagnosis, Mary began learning about the condition and behavior therapies for it.
Discovering a New Career Path When Advocating for Lucas
She fought her school district to pay for part of Lucas’ applied behavior analysis therapy program for autism. After a hearing on the case, her lawyer told her that she had spoken so knowledgeably about the therapy that she should study to become a Board Certified Behavior Analyst. Mary agreed, launching a new career and eventually earning a Ph.D. in leadership.
Behavior analysts use principles of psychology to teach language, learning, play, and social skills to children on the autism spectrum. Mary focused on a type of behavior therapy called “verbal behavior,” which seeks to teach children the purpose of language and communication, in an engaging way.
She began working with schools and children in Pennsylvania. In almost 20 years as a behavior analyst, she estimates that she has worked with thousands of children on the autism spectrum. Although each child is different, her goal is the same: “to help the child be as independent, as happy, and as safe as possible,” she says.
She authored two books, “The Verbal Behavior Approach” (2007) and “Turn Autism Around” (2021). The newest book is aimed at parents and caregivers of young children who are showing signs of autism. It provides the advice she wishes she had received when Lucas was very young.
For example, parents can use simple objects, such as a shoebox, bubbles, puzzles, and a Potato Head toy, to begin teaching a young child with communication and social delays, she explains. “You don’t have to wait for a diagnosis. You can teach your child to point. You can teach your child to respond to their name. You can teach them to imitate,” she says. Mary also has a website, a YouTube channel, and a podcast.
Autism in Adulthood
Today Lucas Barbera is 25 and volunteers often at a food bank.
He can answer and ask questions, but he does not have long conversations, says Mary, who is his legal guardian. He enjoys going to restaurants and outings, watching videos on a mobile device, taking walks, and bicycling.
Lucas was in a job program for adults with disabilities before the COVID-19 pandemic disrupted it in 2020.
His mother took part in research about the pandemic’s effect on people with autism, and their families, through SPARK. Lucas and his parents joined the SPARK autism study in 2018. They provided saliva samples to SPARK researchers, who are looking for genes that contribute to autism. So far, SPARK has not found any genetic changes related to autism in Lucas.
Charles Barbera, M.D., an emergency department doctor, hopes researchers will find ways to improve autism diagnoses and therapies. “I am so hopeful that autism research will get us closer to developing detection and treatment breakthroughs,” he says.
Lucas played a role in another family member’s career choice: his younger brother, Spencer. “Having an older brother with moderate-to-severe autism definitely influenced my decision to go into medicine,” says Spencer, who is a medical student.
Because of his family’s experience, Spencer can understand the frustration and concerns parents may have when their child needs medical care. “When I am interacting with a frustrated parent, I think back to my own mother’s years of unrelenting advocacy for my brother, and am reminded that this parent is acting this way because of the love they have for their child,” he says.
Interested in joining SPARK? Here’s what you should know.
Photo provided by Mary Barbera.
- Listen to SPARK Scientific Director Pamela Feliciano, Ph.D., discuss autism research on Mary Barbera’s Turn Autism Around podcast.
- Southwest Autism Research & Resource Center. https://www.autismcenter.org/then-and-now-look-autism-over-last-20-years. Accessed Jan. 4, 2022.