New directions for mother and son after long road to autism diagnosis (UCLA Health Newsroom)
New Directions for mother and son after long road to autism diagnosis
Lorena Garcia traveled from Mexico so her son could see a specialist at UCLA Health.
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Lorena Garcia was willing to wait as long as needed and travel more than 1,700 miles to bring her 10-year-old son to a doctor at UCLA Health.
Her son, Fernando, was struggling. He had seen a number of doctors, who’d prescribed various treatments that didn’t seem to be working. Garcia and Fernando were exhausted and needed help.
“I was looking for a concrete and professional diagnosis and a plan for my son’s development,” Garcia says in Spanish during an interview from her home in Mexico. “What I was looking for at UCLA was a place where my son would have the opportunity to be self-sufficient; a place where they would guide me to help him reach his potential; to help him be a happy child and have adequate treatment so he can function as a successful and independent person. I believe in and recognize my son’s abilities and talents and want to support him to reach his goals.”
A friend had come to UCLA to seek care for a child, so Garcia knew it was possible, if not exactly how. She connected with a bilingual patient navigation services coordinator at UCLA Health, Sandra Lopez, who served as translator, advocate and organizer for the Garcias.
The Patient Navigation and Business Services department receives about 3,000 international inquiries each year, Lopez says. About half of them become patients, who are supported by bilingual navigation coordinators throughout their journey.
After a year on a waiting list, Garcia and her son met with Patricia Renno, PhD, a clinical psychologist with the Child and Adult Neurodevelopmental (CAN) Clinic at UCLA Health. And everything started changing for both mother and son.
Appointments with CAN Clinic providers include a comprehensive evaluation that can span several days, Dr. Renno says. Children undergo multiple assessments while clinicians conduct extensive interviews with parents and family members.
“I think it’s really helpful for parents to feel understood,” says Dr. Renno, adding that the team regularly treats international patients, with families coming from China, Kuwait, Argentina, Indonesia, England, Ireland and Mexico.
“We see families of children who have been diagnosed with a lot of other diagnoses and they don’t really capture what the child is experiencing,” Dr. Renno says. “The parents aren’t satisfied with those diagnoses and feel like there’s a piece that’s missing to really be able to understand their child.”
Having an accurate diagnosis not only helps parents grasp how their child learns, she says, it illuminates pathways for treatment.
This was Garcia’s exact experience. Hearing Fernando’s diagnosis — autism spectrum disorder with attention deficit hyperactivity disorder — and recommendations for his treatment gave her new hope.
Just going through the interview process was emotional and healing, she says: “I had waited so long to have this appointment, and by the end, I knew we were in the right place where I felt supported by the professional attention to my son.”
Dr. Renno recommended Applied Behavior Analysis, or ABA, for Fernando. There are many types of this common therapy for autism spectrum disorder, she says.
“We tend to recommend more naturalistic types, and for young children, those tend to be play-based,” Dr. Renno says. “They work on increasing a child’s language, their play skills, their social skills and their daily living skills, so things like dressing themselves, eating independently, things like that.”
Some naturalistic ABA therapies for children have been developed at UCLA Health, including JASPER — a play-based intervention that helps toddlers and preschoolers with autism spectrum disorder cultivate social communication skills — created by Connie Kasari, PhD, a professor of psychiatry at the David Geffen School of Medicine at UCLA.
Garcia says ABA has been transformative for Fernando. Before treatment, she worried about going out with him because his behaviors were so unpredictable and potentially turbulent, she says. Now, everything has changed.
“He’s improved so much,” Garcia says. “The crises he had are now very sporadic or almost nonexistent. He handles his emotions in a different way now. He expresses himself clearly, asks for what he needs, can handle the word ‘no’ and remains calm in different scenarios that were previously reasons for crisis.”
Because ABA therapy wasn’t available in their hometown, Garcia and Fernando relocated to Hermosillo in Sonora, Mexico, where he has spent months attending Walden Center, a program Dr. Renno supported.
“In Michoacan, we wouldn’t have this level of emotional and educational support for Fernando,” Garcia says. “This has allowed me to understand education in a different way – a comprehensive and inclusive education that really focuses on meeting the needs of each child, enhancing their talents. That’s why the Walden Center and UCLA have been such blessings for us.”
A new direction
Garcia and her son long to return to Michoacan, but they don’t want to give up the progress they’ve made nor the support available in Hermosillo. So Garcia is preparing to become a bridge for Fernando and other children on the autism spectrum. She’s changing her career — she earned a master’s degree in psychology and child development and is getting trained in ABA.
She’s working with Walden Center while she and Fernando are still in Hermosillo to get hands-on experience.
“I want to be a medium so other children who don’t have the same opportunities can be cared for in Michoacan,” she says.
Garcia is also planning a return visit to UCLA Health so Dr. Renno and her colleagues can assess Fernando’s progress and make additional recommendations. Garcia hopes to get guidance on his diet, medications, school plans and services in Hermosillo.
“I think this is just the beginning and we still have a long way to go,” she says, adding that Fernando still struggles with his self-esteem and says he has trouble making friends. But she is hopeful.
“Before, I couldn’t see a promising, independent future for Fernando,” she says. “Now, it’s a different story.”
Garcia also wants to encourage other parents whose children are on the autism spectrum not to give up hope.
“There’s always a road where we can find light and where we can find community and where we can find strength,” she says. “I feel like if we have the blessing and good fortune to have children with different talents, we, as parents, need to lead ourselves in a positive way so we can give them the support they need.”