Date Published: September 19, 2019
Autism seemed like a secret to Cara Stepanian. She had many questions after her oldest child was diagnosed with the condition, but no easy way of finding answers. She wondered: What therapies are available? How many hours of therapy should a child have? How do you find autism experts? What services are available? How do you get those services?
“Everything seems like a big secret, and you don’t know about things until somebody tells you about it,” says Stepanian, whose son was diagnosed five years ago, before his third birthday.
Stepanian wants autism to be less mysterious. That is one reason she, her husband, Ryan, and two of their three children joined SPARK, the largest study of autism. “We’re both big advocates of science and the scientific method, and we both believe that joining SPARK was the right way for us to participate in figuring out what autism is,” Cara Stepanian explains. Ryan Stepanian says he supports SPARK’s goal of advancing “our understanding of autism to help improve lives. As a family member, I want to contribute to SPARK’s mission.”
One Diagnosis, Many Autism Questions
Their oldest child, Jackson, was an active toddler, always in motion. Cara Stepanian thought something was a little different about him. But others reassured her. Children develop at their own pace, they said. She enrolled him in preschool at age 2, hopeful that the structure would help. After a few weeks, his teacher encouraged her to contact an early intervention office for toddlers with special needs. “So that was the very beginning of our journey.”
Stepanian did not hesitate to call early intervention in New York state, where the family lives. “Because I am an educator, if somebody is indicating my child needs help, then I want him to get any and all the help that he can,” she says.
Jackson began receiving occupational and speech therapies. But “nobody ever said the word autism to me, even though it was constantly in the back of my mind,” Cara Stepanian says. Late at night, unable to sleep, she would do research online. Autism kept popping up in her search results.
An early intervention staffer said Jackson could benefit from applied behavior analysis therapy, and he would need a letter from a doctor to get it. But the family was not told why. “No one told me that you need to go to the doctor because you need to get an autism diagnosis,” Cara Stepanian says.
Jackson saw a developmental pediatrician, who diagnosed him with autism spectrum disorder (ASD). He began attending a preschool that uses a type of behavior analysis. “Whatever they do there is magic,” Cara Stepanian says.
Discovering ASD Resources, by Chance
Cara Stepanian says that a cousin told her about the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. Stepanian took Jackson to see noted psychologist Catherine Lord at the center. Jackson also participated in a social group there, along with and speech and behavioral therapies.
But Stepanian might not have heard about the center had it not been for her cousin. “Most of the meaningful services that we found came from word of mouth,” Cara Stepanian says. “It’s like the services are a big secret and even if you Google them, they don’t show up.”
She had a similar experience recently when she learned that Jackson could be eligible for state disability services, provided she applied for them. “This other mom, in the parking lot at school one day, explained it to me,” she says. To hear about services, programs, and clinics, Stepanian suggests finding other people in the autism community who can help. “I just wish that there was a better way for services to be out there for everybody to know about,” she says.
Embracing the Word Autism
Cara Stepanian wonders if information may be hard to find because of stigma. When Jackson was moving to kindergarten, she recalls, the family met with school staff to update his special education plan. Although Jackson has a medical diagnosis of autism, a school staffer asked if the Stepanians wanted him to have an educational diagnosis of autism, too. “Of course I did, because he has autism and I’m not going to shy away from that,” she says. “It’s just a mystery to me why people are afraid of that word.” She sometimes begins a school meeting by saying aloud that her son has autism.
Jackson, who speaks fluently, had been in classes for children who have special needs. This school year, he moved to a general education classroom for third grade. His parents greeted the change with both hesitation and excitement.
Their hesitation did not involve academics. Jackson, 8, is an excellent student who would rather do math worksheets, or play a game based on statistics, than almost anything else. He also enjoys playing piano, marveling that math concepts can be found in the rhythm and pitch of music. “He has discovered that there is math in music, and his mind is blown,” Cara Stepanian says.
Instead, they were concerned about the advantages of each type of classroom. He will get more practice developing social and emotional skills in a general education class, which is good, Cara Stepanian says. “But is putting him in a mainstream classroom trying to bend him into who society thinks that he should be?” she asks. Many parents want their children in “inclusion” or mainstream classes, learning alongside students who do not have disabilities. But she is less concerned about that. “We are striving for whatever that environment is that is going to let Jackson be the best that he can be,” she says.
Being Part of Change
This school year marks another change for the family, which includes Jackson’s 6-year-old brother and 2-year-old sister. Cara Stepanian joined her local school board. She ran for the board because she wanted to bring the perspective of a parent of a child with special needs, as well as that of an educator, she says. She is a former high school English teacher and adjunct college professor. “I want to be part of the change that can happen,” she says.
That desire to be an agent of change also influenced the family’s participation in SPARK. The Stepanians did not want to stand on the sidelines of autism research, reading about studies involving others. So they sent in DNA samples for the genetic portion of the SPARK study. But Cara Stepanian did not stop there. She joined the SPARK Community Advisory Council. She also took part in other ASD studies when contacted by SPARK’s research matching program. The program connects researchers with potential participants who can choose whether to join.
“I feel that if some insight can be gleaned from our lives, then I want to be part of that,” she explains. “Participating in research is one way that we could actually do something.”
Photo provided by Cara Stepanian.