Living with Autism: Residents Share Their Experiences

Editor's Note: This article was originally published April 30, 2011. While Monday, April 2, 2012 is World Autism Awareness Day, South Pas City Council has also declared the first week in April Autism Awareness Week in town. The lights in the Courtyard will be blue April 2 to 8 this year to show support. 

Looking to relocate to Southern California after living in the San Fransisco Bay area, Kim Lesak and her husband John say they had difficulty finding a school willing to accommodate their son Forrest's needs. 

"No one at Pasadena Unified would talk to us," said Lesak. "We called ahead. We tried to talk over the phone. We tried to make an appointment. We showed up in the office. No one would talk to us." 

Forrest, 13, was identified as autistic by professionals at Alameda Unifed School District in 2001. A complex neurobiological disorder, autism affects communication, behavior and social relationships.

Today, one in every 110 children is diagnosed with an autism spectrum disorder; and one in every 70 boys. This is a 600 percent increase over the last two decades, according to Autism Speaks. 

After visiting the Pasadena Unified School District in 2004, the Lesaks headed over to South Pas in hopes of a welcoming atmosphere. 

"We had never heard of South Pasadena until that day actually," Lesak said. "We knew nothing about Southern California family neighborhoods. But, we had a feeling about this one."

Their feeling was right.

Not only did they move to the area and enroll their children in school, but they also founded South Pasadena Support Group for Parents with Special Needs Children. With the help of Laura Kieffer, "community leader extraordinaire" as Lesak likes to call her, the group was made official under the umbrella of the South Pasadena Council PTA.  

San Marino resident Dianna (who did not give her last name) recently joined the support group and is already looking to expand it into surrounding communities.

"The support and empowerment I felt was instantaneous," said Dianna, whose son attends a non-public school in South Pas.

"I’d like to get one going in San Marino or talk Kim into expanding the group."

When her son was first diagnosed with autism in first grade, Dianna said she was in denial. Yet over the years, he has progressed despite constant struggles.

"The school employees who know he has autism make the assumption that he has a learning disability when in fact his issues are purely behavioral," Dianna said. 

This month, advocates looked to broaden awareness and educate residents about autism. Lights in courtyard were switched to blue at the council meeting April 6, and four councilmen wore special shirts that night to show their support.

South Pas resident and Ellen Daigle has an autistic grandson; she spoke at the meeting and encouraged residents to donate to Autism Speaks. 

While the Lesak's say has been extremely supportive of their son's special needs, they admit to obstacles. 

"[Forrest] does not have any friends. No one invites Forrest for playdates," Lesak said. "Forrest does not get invited to birthday parties. Having autism makes him seem different and weird to the other kids."  

Last Saturday, April 23 at the Rose Bowl, the Lesak family participated in Walk Now for Austism Speaks where Team Forrest raised over $1000 (and checks are still coming in).

"We have been walking as a team since 2003 when the first San Francisco walk was held when there was maybe 300 people in attendance," Lesak said. "But this year's walk had tens of thousands—very bittersweet to see so many." 

In addition to the support group, Kim and John Lesak sit on the Special Needs Committee. The goal of the commitee is to help bridge the gap between parents and the district, Lesak said.

"Some people think our kids will grow out of it. I think promoting this kind of false hope is irresponsible," she said. "We need to love our kids and arm them with the tools to deal with the world and at the same time arm the world with the understanding to embrace our kids."

To learn more about monthly meetings with South Pasadena Parents of Children with Special Needs, click here.