Christine Chiang’s son is a high-functioning 10-year-old, “very curious about the world, very adventurous,” she said.
But his autism poses myriad challenges. Frustration can turn to anger and lashing out – a physical as well as emotional struggle for families.
“The biggest fear I have, in my situation, is that he will let out his feelings in a physically aggressive way,” Chiang said.
Her son was enrolled in school, but she took out and opted to home-school him. She feared the impacts on the other kids.
The U.S. Centers for Disease Control and Prevention describes autism spectrum disorder as a developmental disability causing “significant social, communication and behavioral challenges.”
People with autism communicate and learn in different ways than other people – their abilities can range from gifted to severely challenged, according to the CDC.
Silicon Valley, with its collection of brilliant technical minds, has long been recognized for having more than its share of people on the autism spectrum. One of the most famous people with autism, animal behavioral guru Temple Grandin, told the Mercury News in 2014, “Half of Silicon Valley’s got mild autism.”
But while geeky genius can be a byproduct of autism, those on the high end of the spectrum can experience suffering, along with their families, that lasts a lifetime.
Los Altos Hills resident Saba Torabian is mother to two boys with autism. She said children with autism and their families are “one of the most underserved populations. … These families end up on wait lists that are years and years long.”
An adjunct professor of psychology at San Jose State University, Torabian was driven to start the Mountain View-based Intervention Center for Autism Needs (ICAN) in 2017. The center provides in-home and center-based applied behavioral analysis and speech therapies, nutrition consultations and marriage and family therapy for parents and siblings. ICAN also conducts research to improve treatments.
Torabian speaks with kindness and empathy, but also urgency as she relates the frustrations of families that have been underpaid or rejected by their health insurance. She bemoans the shortage of qualified service providers.
“Not many people know what’s going on in this field, and the reason for this is because most of these families who are affected are too exhausted and have no time to advocate or speak up mainly due to taking care of these children with special needs,” Torabian said. “Most of them are suffering from mental health disorders such as depression and anxiety themselves, and they just go through the motions of day in and day out taking care of these kids.”
She told the story of a tech entrepreneur who became a stay-at-home dad to care for his 17-year-old son with autism. She described him as always begging for help. She paid a visit to the house and saw “all these locks and chains” on the doors to contain a physically strong young man unable to verbally express himself.
“It’s a huge struggle to find suitable providers,” said Chiang, who described hours on the phone seeking appropriate treatments for her son. “A lot of them are overcapacity. Many did not accept insurance plans.”
Despite the shortcomings, Chiang said the autism services in the U.S. are downright “abundant” compared with the rest of the world.
There’s an obvious reason insurers are trying to find loopholes to exempt themselves from providing autism care – it’s a financial black hole. According to the Autism Speaks organization, costs of care in the U.S. are projected to rise to $461 billion by 2025, up from $268 billion in 2015.
Paying for services is one thing, finding people to perform them is another. Turnover in the mental health field is significant, Torabian said. Reimbursements from insurers are low and so too is the pay for therapists.
“They could make the same amount of money at Starbucks, where they’re not going to get punched and hit,” she lamented.
Schools also are overwhelmed.
“They simply do not have the budget, manpower or resources,” Torabian said.
There are not enough doctors who can diagnose, much less provide support for families after diagnosis, according to Torabian.
“The story becomes even more painful after they become adults,” she added. “They literally have no place to go and end up living in their parents’ basements. The combination of all the above make this world one big mess for this population.”
Despite the disheartening circumstances, Torabian soldiers on, much to the appreciation of her clients. Chiang describes Torabian as a “superhero.”
“The clinic has completely transformed our lives,” she wrote in a Yelp review. She called ICAN “a personable and professional clinic that was completely child-centered, flexible, understanding, and easy to work with.”
Chiang said her child’s behavior is improving through Torabian’s assistance.
For more information on ICAN, call (650) 930-9550 or visit icanautism.com.