Olga Chinchilla, then 18 and pregnant, sat glued to the television screen, intrigued by a report on a developmental disorder that impairs social skills.
"I remember sitting there and had never heard about the disability before,” said Chinchilla. “Little did I know that in three years my son Anakin was going to be diagnosed with autism.”
Initially, she said she ignored signs that her son potentially had autism — a developmental disorder that is exhibited in impaired comprehension, language barriers, and repetitive behaviors — because she was in shock and did not quite know what to expect. “I was the one in denial,” she said. Her family's reaction did not help. “Being Hispanic, the typical thing they tell you is that ‘it’s okay, he’s a boy. Boys develop a lot slower than girls do.’”
But there was something alarming and oddly different about Anakin’s behavior. At 12 months, he could not walk or talk. There were many times when Anakin could not even look his mother directly in the eyes. He did not like it when anyone touched him and he would often slam doors and spin objects in a repetitive manner – warning signs that eventually prompted Chinchilla to seek help from a pediatrician, a health center and then a psychologist.
Chinchilla, now 24, has transitioned from initial disbelief and denial of her son’s diagnosis, to struggling as a single mother to find the right resources for Anakin and later advocating and educating others about the rights of families of children with developmental disabilities in the Alhambra area.
Anakin was diagnosed with autism at 22 months and later began receiving funds for ABA therapies at age four at Alhambra’s East Los Angeles Regional Center (ELARC), one of 21 resource and service centers in the state of California catering to individuals with developmental disabilities.
Gloria Wong, executive director of ELARC says that 38 percent of their clients are diagnosed with autism, the second largest diagnosis at the center, after mental retardation. Nationally, autism cases have spiked in recent years. According to the Centers for Disease Control and Prevention, 1 in 88 children have been diagnosed with an autism spectrum disorder, a 23 percent increase from CDC’s 2009 report. Additionally, more children are being diagnosed at an earlier age and the disability seems much more prevalent in boys than girls.
“There is really an unknown reason for that spike that continues to grow, but there have been studies in terms of what is spiking the ongoing growth in California,” said Wong.
Shortly after her son’s diagnosis, Chinchilla recalls struggling to work as a full-time medical assistant while providing Anakin the special care he needed.
“I was in Rosemead at one point, and I tried two different daycares within a week,” Chinchilla said. “I would get off work and get there crying….You try to make a living for your child, you go to work – but the whole day, you wonder, ‘how’s my kid?’”
Chinchilla realized that Anakin needed more than just regular daycare service; he needed a place that catered to children with developmental disabilities. But the search for special daycares was a challenge, and as a single mother, she was not able to afford the cost – many of which were well over $30,000 a year.
Chinchilla decided to quit her job in order to take care of her son full-time. Shortly after, Chinchilla and her husband divorced, a common occurrence in families with children of autism, she said.
“The divorce rate and marriages with kids who have autism are very high, and it’s many times due to the fact that one parent or the other can’t deal with emotions and challenges of having a child with autism,” said Chinchilla.Unemployed and on her own as a single mother, Chinchilla moved in with her brother in Alhambra. She soon discovered In-Home Supportive Services, a program that helps pay for services provided to individuals who are disabled, blind, low-income elderly, including children.
“I had to fight for a year and a half because they [State of California] didn’t consider autism would fall into the category of having to be watched 24/7,” she said. “I went around my community, collecting letters and having his [Anakin’s] supervisor write letters as to why he can’t be alone for a minute and why he can’t take care of himself.
Families like Chinchilla’s may be receiving financial relief in the form of SB 946, a new state law that requires health insurances to provide behavioral services to individuals with autism. “We have up to 200 families affected by this requirement,” said Felipe Hernandez, Chief of Consumer Services at ELARC.
According to Chinchilla, the new law serves as a financial relief for her family. But after speaking to other families in the Alhambra community, she came to realize that many were not informed about their rights and resources. She wanted to do something to educate others about autism by participating in various fundraisers, car washes, autism walks and baseball tournaments in collaboration with Autism Speaks, an advocacy organization that supports autism research and advocates for families of individuals with autism.
With the support from her community, Chinchilla was able to reach out to local businesses and friends and family members to help raise money for autism research, and spread awareness about autism in communities like Alhambra and the Greater Los Angeles area.
“We raised $9,200 this year and $5,600 last year,” she said.
Chinchilla knows that the fight is not over. Anakin progressed from not speaking a single word to later speaking in full sentences. But there is still a lot more help that he and other children with developmental disabilities need.
“We walk not knowing what the future will hold, but we walk with faith that he will be independent himself,” she said. “One day, we will look back and say: ‘we were able to face these challenges in life.’”