Parents of Children with Autism Face Unique Challenges

Concord's Vi Ibarra understands what it’s like to be a parent of a child with autism.  Her son, Mateo, was diagnosed with the disorder four years ago when he was 2.

“I remember sitting across the room from the doctor as he told me my son was showing the signs of autism,” she said. “I was hoping he would say that boys simply develop later, they talk later . . . that he was just a ‘late bloomer.’ But, deep down, I knew.”

She cried all the way home, she said. Then she began to fight for her son. And she joined We Care Services.

According to a recent government study, 1 in 100 children in the United States have an autism spectrum disorder. But with programs like Concord’s We Care Services Autism Family Support Project (AFSP), it's getting easier for families to deal with the disorder.

While parents search for answers to questions about early intervention, causes of the disorder and the best treatment options, many fight overwhelming feelings of isolation and inadequacy, said Ibarra, project coordinator.

“Parental stress, when you have children with autism, is more than with other disabilities,” Ibarra said. “The most stressful aspects are dealing with disruptive behaviors and the difficulties connecting with your child. ‘Normal’ support networks may not be able to help. Parents need to seek out support from others with kids on the spectrum.”

Ibarra told members of the Concord Chamber of Commerce Women’s Networking Group earlier in the week about how AFSP helps local parents. AFSP offers seminars about the specific challenges inherent in the disorder (eating disorders, sensory issues and behavioral problems) and coordinates family events, support groups, and winter and summer camps for children.

The Autism Family Support Project supports more than 135 families with children  up to 7 years old. “The program is designed for when families are at the beginning of their journey,” Ibarra said.

Over the past three years, Ibarra has helped hundreds of families find answers to their difficult questions. She also has helped families from out of the area learn about education and treatment options.

The group's activities – bowling, dining, watching an A’s game or going to the movies – allow parents to relax and not worry that their child might not act in a socially acceptable manner.

We Care Services staff member Audra McDonald, who has two children with autism, agreed.

“This is a great program,” she said. “I can go places I normally couldn’t go without getting unsolicited advice about my parenting.”

Facilities provide accommodations, making the experience more enjoyable for children on the spectrum who might have behavioral or sensory issues. Brendan Theaters in Concord, for example, has reserved a theater for ASFP families in the past, lowering the volume and keeping floor lights on to help children who might have sensory issues enjoy the show.

“Behaviors can make regular activities challenging,” Ibarra said. “Going bowling or to a movie or restaurant simply isn’t something we can easily do. Having these accommodations reduces parent anxiety about the event. We don’t have to worry that my son is walking up and down the stairs or talking during the movie. And we’re with other parents who understand.”

Most events are free to families, but occasionally include a $10 fee. There is no membership fee to join ASFP.

Over time, as their kids get older, Ibarra says parents rely less and less on the group.

“They’re no longer calling to ask as many questions. They’ve learned how to navigate the system,” she said. “Kids have teachers, speech therapists, occupational therapists and behaviorists on their team, empowering them. We hope to empower parents.”