By Rob LeDonne
April is Autism Awareness Month and one person who no doubt is taking part in awareness activities is Thomas Ohno-Machado, a 2013 graduate of Torrey Pines High School, who is currently attending UC Santa Cruz.
“Autism affects people who can’t help themselves and have no voice because it’s silenced by a great majority of people who don’t understand what they’re going through,” Ohno-Machado said. “It’s important because the rates are increasing and people will know at least one person in their lifetime who has autism. It’s the most common developmental disorder right now.”
Autism is close to Ohno-Machado’s heart for many reasons, mainly because his middle brother, Andre, has the disorder. “He was diagnosed when he was just 1 and a half,” remembers Ohno-Machado. “I first learned about autism by attending group sessions for young kids with siblings that have it.”
Andre’s diagnosis took the family by surprise, especially Andre and Thomas’ mother, Lucila, who is currently the associate dean for informatics for the UC San Diego School of Medicine, and professor and chief of the Division of Biomedical Informatics in the Department of Medicine.
“It was a learning experience for all of us. There’s a big difference from studying something on the outside to experiencing it inside your own family,” Ohno-Machado said. “She was completely new to how things work. You can talk about numbers, statistics and medicines all day, but what it really comes down to is how autism impacts not only the person, but the people around them. My parents understand that well, and all the values I have I’ve gotten from them.”
Ohno-Machado’s mission to raise awareness for autism can be traced to both the local and national level. While at Torrey Pines, he founded the Autism Awareness Club because when he arrived at high school, Ohno-Machado “was thinking of doing something philanthropic,” he said. “I knew a lot of my friends hadn’t even heard of autism, and the ones that did didn’t know much. Plus, I view autsim as a sub-topic of the larger one of treating people equally.”
The club was active throughout Ohno-Machado’s time at Torrey Pines, whether it was attending charity events, holding fundraisers, or volunteering. One highlight was bringing to TPHS guest speaker Peter Jensen, whose autistic son (who attended Torrey Pines) perished during the 2004 tsunami in Thailand.
In addition, Ohno-Machado has traveled to Washington, DC, multiple times to meet with California Senator Barbra Boxer (D) to advocate for better government funding. “I was doing some research and saw that funding was a big issue; some of the numbers are absurd to look at,” Ohno-Machado said. “I wrote a bunch of emails to public officials and got some responses, including from Senator Boxer’s staff. The first time I met her was nerve-wracking for me, but this year my public speaking got a lot better. It was a great experience, but I’m still learning more about it every day.”
Throughout his advocacy, Ohno-Machado is still helping his brother Andre (who currently attends the Institute for Effective Education in Mission Hills) cope with the disorder. “Andre has his ups and downs. Right now, he’s doing well and likes biking and swimming. We always try to keep him active and on a healthy diet.”
As for the progress Autism Awareness has made in the past few years, Ohno-Machado says it’s “nice to see” but more can always be done. “The main reason for the extra awareness is that rates have been going up so quickly. More and more people are being affected by it,” he said. “There’s still a lot of progress to be made in the autism and mental disability area, especially with vocabulary and the way people are portrayed in the media. There’s more to be done, and I hope that happens sooner than later.”