Building a Community, for Autism
Date Published: February 23, 2022
A good journalist always verifies the facts. So when former broadcast reporter Karen Zarsadiaz-Ige first read about the SPARK autism study, she checked it out.
She wondered, was it free to participate? Yes, she learned.
And who funds it? A scientific foundation that is run by a family who has an autistic member, just as she does.
Were respected research centers involved? Yes. She learned that one of SPARK’s research partners is University of California, Los Angeles, near her home. With universities such as UCLA involved, she says, “I trust that our research information is going to be handled properly.”
So in 2021, Zarsadiaz-Ige, her husband, Phillip Ige, and son Liam, registered for SPARK, joining more than 275,000 other participants. Liam, a second grader with a big smile, has autism. He and his parents provided saliva samples for DNA analysis. SPARK researchers use these samples to uncover genes that contribute to autism.
The family joined SPARK because they would do “anything to open the conversation about autism, anything to build community, anything to learn more about what autism is,” Zarsadiaz-Ige says.
What is Autism?
Zarsadiaz-Ige did not know a lot about autism before the birth of Liam, her oldest child. “I only knew what I saw in the movies and on television,” she says. Liam’s pediatrician did not raise concerns about autism during his appointments. But his grandmother noticed that something was different about Liam’s development.
When Liam was 2, his day care provider encouraged Zarsadiaz-Ige to take Liam for an evaluation at a California regional center for developmental services. The day care provider noticed that Liam was lining up toys; she had seen that same behavior in her own son, who has autism.
Liam also was not stringing together words like other 2-year-olds. He did not respond to his name sometimes, and he liked to stare at the sunlight beaming through their shutters. Autism affects a person’s social communication skills. Other traits include unusual reactions to one’s senses and repetitive behaviors, such as lining up objects.
Zarsadiaz-Ige followed the day care provider’s advice. “I trusted her, not just because she was our day care provider, but also there’s a cultural bond that we have because she’s also Filipino American, like me,” she says.
The regional center diagnosed Liam with autism. At the time, Zarsadiaz-Ige was expecting her second child, Cooper. Life became a blur of appointments and therapies for Liam. “We were in our own world, going through the motions,” she recalls.
“Liam Has Autism, and It’s OK”
But eventually she realized she wanted to find community; she wanted to talk about autism and learn about others’ experiences. So she began to tell people, “Liam has autism, and it’s OK. We’re all fine.”
Once the family openly shared Liam’s diagnosis, “we were met with lots of support and love, and not just from family and friends.” Other parents told her that they also have a child with autism, something they had not mentioned to her before.
She also spoke with parents of autistic adults who, decades earlier, had lobbied government agencies and insurance companies about autism services. Because of their advocacy, Liam had an easier time getting autism services and therapies than many children did in the 1990s, she says. “I’m so grateful for all the things [those parents] had to do to get to where we are today.”
Like those parent “pioneers,” she says, she wanted to do her part to make life better for future generations.
Taking Autism Awareness into the Community
She began with her workplace: the Los Angeles County Fire Department. She is communications manager of the fire department, one of the nation’s largest. She joined the department after a previous career as an award-winning television and radio journalist and producer.
She wanted to help firefighters and paramedics better understand autism, and to help people with autism feel more comfortable around first responders.
So she created the Sirens of Silence program for the fire department, which also includes lifeguards who protect beachgoers along the county’s coast. Sirens of Silence trains first responders on autism and other conditions, and also sponsors community events for people on the spectrum.
Emergency lights and sirens can be uncomfortable or scary for people who are very sensitive to loud noises and bright lights, as many autistic people are. As a result, they may react unpredictably in an emergency. Sirens of Silence sponsors events where children can meet first responders and lifeguards, and see and touch their equipment and vehicles, all in a quiet setting.
“Creating the Sirens of Silence program was how we, as a family, could ensure that first responders would instantly ‘get it’ once they engage with someone who has special needs,” she says. She hopes other fire departments will adopt the program.
All About Liam
Liam, who is 7, is not sensitive to noise or light, but he has a sensitive nose, his mother says. He will smell or sniff things that other children might ignore.
At school, he enjoys math and works hard at reading comprehension. He is in a general education classroom, with a part-time aide to help. Making friends can be difficult for some children on the spectrum, but Liam has made “a sweet little friend,” a girl he plays with on the playground, Zarsadiaz-Ige says.
Liam is a talented artist. A picture he drew of Elmo and Sesame Street characters is so accurate it looks like a page from a coloring book. He enjoys sketching cartoon characters and even company logos he sees while riding in the car.
Zarsadiaz-Ige says that she wants Liam to be able to do whatever he wishes to do when he grows up. That is also a reason the family joined SPARK, to increase our understanding of autism.
The Diversity of Autism
She also wants families to know that autism can affect anyone, from any background. “Autism affects all kinds of families,” she says.
One theory, proposed by a British autism researcher, is that scientists and engineers are more likely to have a child with autism.1 But that’s certainly not so in the Ige family. “We’re both journalists and communicators by trade,” Zarsadiaz-Ige says of herself and her husband, a photojournalist. “You can’t stop us from talking.”
Phillip Ige says he hopes that SPARK will find ways to educate people about “the different shades of autism,” a condition that affects people in different ways along a wide spectrum.
As a family of diverse heritage – Karen is Asian American, and Phillip is Hispanic and Asian American ─ they also hope that their participation in SPARK will help others from similar backgrounds find community. “We want others to know that there are families that look just like them that love and support someone with autism,” Zarsadiaz-Ige says.
Interested in joining SPARK? Here’s what you should know.
Photo provided by the Ige family.
- Baron-Cohen S. Sci. Am. 307, 72-75 (2012) PubMed