Date Published: June 24, 2021
We are celebrating SPARK’s fifth anniversary with stories about the first families who joined.
When it comes to autism, the Lees are often among the first to try a program. In the 1990s, Nicole Lee was the first child in a new autism program at her school. When she was a teenager, her parents worked to create the first day program designed for autistic adults in their community.
And when Children’s Specialized Hospital in New Jersey became a clinical site for the SPARK autism research study, the Lees became one of the first families to join SPARK there in 2019.
“We wanted to be part of any genetic research that can help in advancing the understanding of autism,” says Nicole Lee’s mother, Lily Yip.
Yip, her husband Wain Lee, and their adult children, Nicole and Eric, sent saliva samples to SPARK for genetic analysis by researchers. Like his older sister, Eric Lee has autism.
SPARK is looking for genetic changes that contribute to autism, a mission that appeals to Yip. “I would like to know what causes autism. Is it genetics? Is it the environment? Is it a combination of both?”
It was a question she first wondered 24 years ago, when Nicole was diagnosed.
The Autism Diagnosis, Times Two
Nicole was a happy toddler who liked to play by herself. She disliked changes in routine and began walking late, at 18 months. By age 3, she still was not talking. Her grandmother suggested that she be evaluated. Nicole was diagnosed with a type of autism that was then called Pervasive Developmental Disorder (PDD).
“We didn’t know much about autism. I personally felt it was my fault, and it was something I had done wrong,” Yip says. “But the physical therapist who evaluated Nicole tried to comfort me by telling me that it can happen in any family.
The children’s pediatrician told them to look for signs of autism in Eric, who is three years younger than Nicole. He seemed to be developing typically at age 1, but when he turned 2, he also was diagnosed with autism.
“Like the saying goes, no two autistic children are alike,” Yip says. That was certainly true even when the two children happened to be brother and sister. Eric began talking in early childhood, but his sister had very few words.
The siblings were born at a time when autism diagnoses were growing dramatically. Many school systems struggled to keep up with an influx of students diagnosed with autism, a condition that was considered relatively rare just a decade earlier.
“Autism was not as well known in the ’90s,” Lee says. They even met a pediatrician who said that he was not familiar with Nicole’s PDD diagnosis.
Nicole, who is now 27, was the first student in an autism program in her school district in New Jersey. The district wanted to assign Eric to the same program, but his parents disagreed. “We knew the children were different, and that that program wasn’t appropriate for Eric,” Yip says.
Yip advocated for each child to receive school services that met their different needs. Eric’s school placement changed several times. Eventually he was assigned to a class for students with learning disabilities, and in high school, he attended a vocational program.
Autism and the Transition to Adulthood
When Nicole was a teenager, her parents and her school began to prepare for her transition to adult services at age 21. Lee and Yip learned that the day programs in their community were not geared toward autistic adults with Nicole’s needs. “Finding quality day programs for autistic individuals was difficult,” Yip says.
Nicole speaks a few words, reads sight words, and also can use a communication program on an iPad to express herself.
Yip and other parents of autistic students formed a nonprofit, the Hope Autism Foundation, for adults on the spectrum. The foundation worked with a service provider, which created a day program for autistic adults. The program uses behavioral principles and has more staff than other programs, Yip says. Nicole began attending in 2015.
Because of her experience with Nicole, Yip began meeting over lunch with some parents of Eric’s classmates. They wanted advice about adult services, and financial and legal planning for their children with disabilities. Their meetings grew into the New Jersey Parents of Exceptional Adults, a group where parents share information and support each other, Yip says.
While in high school, Eric began working at a fast-food restaurant with a job coach. He continued to work there after graduation but lost the job when the restaurant was sold. Now 24, Eric does volunteer work at various businesses through a day program for adults with disabilities.
Eric has other career goals. “I would like to be a voice-over artist like Mark Elliot and Brian Cummings,” he says. Voice-over actors speak lines off-screen in commercials, films, television, and theater. Cummings, for example, was the voice of various characters in animated television shows, such as Papa Q. Bear in “The Berenstain Bears.”
Eric’s voice will be used in a film a friend is making. “I will be in a movie called ‘Velveteen Rabbit’ in a crowd scene. This is my first voice-over role,” Eric says. “I would also like to be a chef. I’ve cooked different rice bowls, sweet potato ravioli, and turkey chili.”
Besides cooking, Eric enjoys painting, studying maps, geography, 1,000-piece puzzles, and playing basketball. Like some people with autism, Eric has an excellent memory. He can often remember the exact day and date that an event in his past happened.
He enjoys singing and recently performed at an open mic night event.
His sister also loves music, especially anything by singer Josh Groban. Nicole once met Groban after her family won an auction item to meet him. Like many autistic people with sensory sensitivities, Nicole does not typically like crowds, but a Groban concert is different. She happily waited in line to meet Groban, says Yip, who is also a fan.
The Open Road
Nicole and Eric, who both live at home, also enjoy outdoor activities and family vacations.
Some people on the spectrum find traveling to be challenging, because it creates huge changes in routine, but the Lees enjoy it. In 2011, their parents drove a minivan from New Jersey to the West Coast and back. Along the way, the family stopped at several cities and visited national parks, including Yellowstone, Grand Teton, Mount Rushmore, and Crater Lake.
Eric planned their meals. The siblings, both teenagers at the time, enjoyed the car journey as much as their destinations. “No one was asking, ‘Are we there yet?'” their father says.
Planning the Road Ahead, with Autism
Lee and Yip believe in planning ahead for autistic children, such as considering the creation of special needs trusts for their financial needs, and guardianships, if necessary. Yip has participated in several educational programs for advocates for disability-related policies. As part of a program of New Jersey Partners in Policymaking, for example, she researched housing options for adults with disabilities.
Lee and Yip have one goal. “We want to see the children being happy and provide them with many opportunities to be productive in the community,” she says.
Photo courtesy of Lily Yip.