Navigating autism in Asian American families

By Nina Huang
NORTHWEST ASIAN WEEKLY

*names changed to protect anonymity.

Asian children in the United States are diagnosed with autism spectrum disorder (ASD) at a notably higher rate compared to other racial groups, according to recent data from the Centers for Disease Control and Prevention. Autism affects an estimated one in 36 children in the United States. And approximately 5.4% of Asian children, or one in 19, have received an ASD diagnosis.

Navigating the diagnosis

Sarah Chan is a mother of two young kids. Her older son, Quinton, 5, was recently diagnosed with ASD.

After Quinton was born, he hit all the milestones by age, but it wasn’t until he was about one and a half years old when he wasn’t quite speaking or blabbering like peers his age would. For about two years, Chan put him in different therapy sessions to help with his development and speech delays as well as preschool services, but no one had recommended Quinton to get a full evaluation done until he was three and a half.

“We need to get answers. Something’s not right. I didn’t understand what was going on with him and we need more help,” Chan recalled.

When they finally got an evaluation from the International Center for Autism and Neurodevelopment (ICAN) in Bellevue last summer, Quinton was diagnosed with ASD.

“My mind was going all over the place. Once we got the evaluation and diagnosis, that really answered everything,” Chan shared.

Chan shared that ICAN providers were helpful in outlining next steps for them as well as resources, books, activities, and therapy options.

“We are doing everything we can for him, I’m still learning and reading about it to understand how his mind ticks,” she added.

“I didn’t know too much about autism prior to his diagnosis. I really wish that I did then. Maybe I would’ve been able to get him diagnosed sooner or get the right help sooner,” Chan said.

Chan hopes more people can be open to learning and understanding, but gets that it’s one of those things where you don’t go out of your way unless you’re affected by it.

Chan’s family has always been supportive. They’re the ones that pushed her to be more open about it. She was hesitant to share their family’s journey at first, but eventually created a separate Instagram account because she wanted to share it with people within arm’s reach.

“I want them to learn about him and I want to get people to understand that people are different and have different abilities, and just be open to understanding that,” Chan said.

“Growing up, I saw people that were different, and I wasn’t the type to judge, but personally I was scared to approach them or if they were next to me. I wasn’t sure what they would do because no one taught me that people can be different,” she said.

Quinton is in a general education classroom.

“Kids like Quinton learn a lot more when they’re with peers that are typical,” she said.

Right now, Chan’s focus has been trying to understand her son’s behavior and supporting him as best as she can.

Finding support through therapy

Quinton recently started applied behavioral analysis (ABA) therapy at a private clinic, Washington Behavior Specialists (WBS). He works with Angelo Ocampo, board certified behavioral analyst and licensed behavioral analyst. 

Ocampo has been working in ABA since 2018. In college, he took a brain and behavior class that fascinated him so he started looking at related jobs. He tried that out and fell in love with what he was learning and it really opened his mind about how behaviors work.

“It was fascinating for me to find out that since behaviors happen all around us, the interventions we use in ABA can be applied in a variety of situations, not just during sessions. Throughout my experiences in the field, I’ve learned many different terms and strategies that have shaped me as a person and how I perceive the world. When I started at WBS, I learned more about cultural competency. Working with different families that have different dynamics in their home helped me learn more about being culturally competent, ” Ocampo said.

He joined WBS in 2022. WBS was founded in 2020 by Filipino Americans Louelle Nadela-Asuncion and Kizztophe Asuncion to provide high-quality services to children 0-18 years of age diagnosed with autism in underserved communities in King County.

Ocampo shared that WBS is the first clinic he’s worked with that mainly has Asian American Pacific Islander (AAPI) staff and clients. Ocampo currently has about nine cases ranging from 3 to 13 years old. Every case they work on, they individualize their care, depending on the client’s range of skills.

“It’s important to understand that like anyone else, individuals on the spectrum have different ways of interacting, communicating, behaving, and also ways of learning. Everyone has a different way of going about life,” Ocampo said.

Research suggests that an experienced professional can reliably diagnose ASD at the age of 2.

Ocampo said that they refer to children as “learners” because it’s the most appropriate term as they are learning.

“We’re teaching them how to live a better quality of life,” he said.

Breaking stigmas

“Challenging behaviors are learned through past experiences as a form of communication or gaining access to certain things. Here, we try to figure out functions of maladaptive behaviors and try to find a replacement behavior,” Ocampo said. “We also identify reinforcers for each individual and reinforce all appropriate behaviors.”

Ocampo also shared that another stigma from some AAPI families is the feeling of shame. They may feel ashamed of their children’s diagnoses and tend to avoid disclosing their diagnoses. Some families may also stray away from evidence-based therapy and lean towards spiritual means. Because of that, they don’t take the necessary steps to get diagnosed.

“Let’s break that stigma. Don’t be afraid to get diagnosed and don’t feel shame. Your kid may just have a different way of learning, and we try to help them find a better way that works for your kid,” he said.

Ocampo said that if someone didn’t seek therapy and if families were to stray away from experts, they might be less aware of what’s going on and may potentially reinforce the wrong behaviors.

Signs to watch out for

Ocampo said the most common symptoms of folks on the spectrum include delayed speech or language, delayed cognitive learning skills, unusual eating or sleeping habits, unusual mood or emotional reactions, as well as a different play style that includes lining up or stacking toys, or not being as motivated to interact with others. Parents should reach out to their pediatrician if they are experiencing these symptoms.

“Therapy is really individualized for each kiddo. It varies on the learner—one might need it until their 20s and some might not need it after 5, it depends on their progression and preference of the parents,” Ocampo said.

“What I love about being in ABA is that it’s very rewarding seeing the progress these children make. It’s even more rewarding, being raised in an Asian American household, to teach these parents who I can relate with. Teaching them and letting them be more aware of autism and having them accept a more neurodiverse space feels great,” he said.

Autism in the family

Grace Lee* is autistic and has attention-deficit/hyperactivity disorder (ADHD). Lee has four children who are autistic and autistic with ADHD. Her two younger children, twins, were diagnosed around age 8 and her two older children were diagnosed in their teens. Lee was diagnosed at almost age 50.

Lee said that looking back at life, she found certain aspects difficult, and now it makes sense to her.

“If I had known and been more aware of it, I would have made different choices,” she said. “But I probably would not have been diagnosed as autistic with ADHD. Research in neurodiversity has made incredible advances in the last decade. I first raised concerns that my twins were autistic when they were 4, but the neuropsychologist said that my twins could not be autistic because they made eye contact and were social. Research has now shown this to be incorrect.”

Lee compares being autistic to speaking a different language than everyone around you. She says it is a communication issue and can be frustrating when people don’t understand you and you don’t understand them. 

Lee recommended books written by Japanese author Naoki Higashida who was diagnosed with autism at age 5 and is nonverbal, but wrote books using a homemade letterboard.

“You come into this world and you don’t speak the language. If you have an autistic brain, it’s like having black hair, it’s just a feature you have. It’s genetic and if your child is autistic, you should get yourself tested. Any kind of parenting is about parents being more aware of themselves, so I would recommend parents get tested,” she said.

“In Korean families, you are told you have a sensitive child and they have to either grow out of it or they need to suck it up. There’s a lot of shame encompassed around it,” Lee said.

“Looking at my children and when I get that reaction from my family… my response is, first of all, they’re not your child, and, second of all, it’s not a big deal to give them a red cup instead of the orange cup, if that’s what they want,” Lee said.

Alternative education

Before moving to Seattle, Lee and her family lived in the Northeast, where her two younger children received special education services. She found services in Seattle to be inadequate. Lee’s two younger children currently homeschool and mostly unschool.

Unschooling is a child-led learning approach that allows children to pursue their own interests and curiosities without requiring formal classes or schedules.

“When you have neurodivergent children or all children, really for all children, you have to tailor the education to them. When you force a child to go to a school that they don’t want to be at, it’s like having a bad job, at some point, you’re going to break. You have to give them the choice to decide what to do,” she said.

“Doing traditional educational activities has gotten more difficult for my two younger children as they’ve gotten older and unschooling allows them to explore their own interests. They can read, they learn how to budget, and it’s more focused on life skills,” she added.

Lee referenced two books by Dr. Ross Greene, “How to Raise Humans” and “The Explosive Child,” about collaborative parenting and how to work on problems together instead of having a combative relationship.

“I like his approach because it makes you start with your opinion of why you’re reacting to the situation. You’re evaluating yourself and realizing that parents are throwing a tantrum about the kids throwing a tantrum. It’s about removing that power dynamic and making it a collaborative relationship,” she explained.

Chan is also reading “The Explosive Child.” She said it’s not just about understanding neurodivergent children, but approaches that can be applied to all children including her younger daughter as well.

She also recommended “Unconditional Parenting” by Alfie Kohn, a book that addresses the ways parents think about, feel about, and act with their children.

“I don’t think my parenting is specific to neurodivergent children. I think, especially in the Asian community, there’s a lot of control exerted over needless things. I just do what I believe is a parent’s role in a child’s life, which is supporting them and helping them develop skills to make their own choices about their life,” Lee said.

Navigating a life changing diagnosis

For another mother, Mae Lu*, her son’s diagnosis was a hard pill to swallow; almost like a death sentence.

Lu’s son is now 11, but he was diagnosed with moderate autism when he was two and a half. Their pediatrician had a doubt about his behavior and referred them to the Seattle Autism Center. From there, he was diagnosed because of his language delay.

“He’s my first kid and I didn’t think he’d be on the spectrum. I had never seen an autistic child or adult in my life so I had no idea what autism looked like. At first, I was confused, in denial, and I didn’t know what was going on. I didn’t want to accept the fact that my child had a disability. In Chinese culture, disability is a shame and hard to accept,” she shared.

The hospital provided them with resources to read and referred places to seek speech, occupational, and ABA therapy. I started to do research and eventually got her son into the different therapies as prescribed during the diagnosis.

“Going into the sessions, I started to learn more about the different therapies. Together, my son and I learned what therapy looked like,” she said about navigating the different routes of raising a child with autism.

Refreshed perspectives

“In my own culture, I’ve never done any therapy, this was a new world to me. We’re entering a new world with him together,” she shared.

Lu shared that her son is academically high-functioning and doesn’t ask her for help. If she tries to help, he tells her that he’s got it and she’s OK with him not needing his help.

She’s very proud of him. Her son is doing the best he can, but still has his own challenges like everyone else. His strengths are that he loves learning, is very adaptive, resilient, fun, and happy. He also likes making new friends and has come a long way over the years.

When the diagnosis came, the doctor painted a gloomy picture of the futures of kids who are on the spectrum.

“When I first got his diagnosis, I just thought his world was gone, his future was gone, and I had a very mixed picture of that. I just felt very depressed and hopeless. But a few years later, I realized he could do a lot of things and became more hopeful,” she said.

“There was a moment of trauma when he was diagnosed, but now he’s very brilliant in his world. He’s humorous, honest, and kind, and I can’t ask for a better kid. I’m just so proud of where he is now,” she said.

If Lu could go back in time and give herself advice, she’d tell her young self that it’s OK to be anxious and traumatized.

“Leave some time and space for yourself and be very good to yourself because you’ve done enough. Even with those frantic stages of life, that’s the best you can do,” she added.

“If they don’t see that perspective shift of seeing autism as a gift to the family and to the individual, it’s because they didn’t get the support they needed,” she said.

The importance of a strong support system

Lu shared that if anyone who is of similar cultural backgrounds and is going through something similar, she suggests finding support.

“Give great support for yourself first because you’re in it for the long haul, you can’t give the best support for your kids unless you support yourself,” she said.

“Parents need to get support for themselves first before supporting their kids,” she said.

Lu considers herself lucky because she found support and strength from seeking self therapy, as well as support from her community.

Lu said that she doesn’t want to call it a disability, but prefers diagnosis—which has really shifted her perspective.

“With or without the diagnosis, I certainly would’ve chosen a life with the diagnosis, I know that pain is something I wanted to avoid, but now I will embrace it,” she said.

“There are many gifts in one’s life. The greatest gift comes from the greatest pain. In my case, it’s my son’s diagnosis,” she added.

Nina can be reached at newstips@nwasianweekly.com.