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The Hidden Generational Condition: Autism in the Asian Community

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In 1981, I came to America as an immigrant from Vietnam. Growing up I tried to fit in, but I stuck out of the crowd. I even changed my name from Bang Chau to Julie. I knew I was different yet the same. I was a rebel who grew up in a Buddhist household and enrolled in a Seventh-Day Adventist University. I had strong values and strong convictions. I knew who I was, but it took a long time to become who I am today. I was undiagnosed and did NOT receive the services I needed until I was in my forties. I struggled with my mental health and Autism in my earlier years. When people started believing in me, it changed me. My mom was the first. No matter what grade I brought home she always told me I was smart and beautiful. The second person was my sister; she inspired me to go into healthcare. All my siblings supported me financially to afford a private school education. The next person was Kathleen “Katie” Peters, a pioneer in the field of speech therapy who introduced me to the profession. Looking back, I was blessed to be mentored by trailblazers and respected leaders. At Loma Linda University, Dr. Shirani De-Alwis Chand, a woman who Mother Teresa herself mentored, taught me about Mother Teresa’s kindness, and how she served the world. At the University, I also worked as her secretary, yet I had dyslexia, ADHD, and Autism. When I picked up the phone to take a message, I always took down the wrong number. Instead of firing me, Dr. Shirani promoted me. She knew that my disability prevented me from doing a simple job, but not a challenging one. She made me her personal assistant when I was nineteen and offered me a teaching position at Loma Linda Graduate School when I was twenty-one.

By the time I was 23 years old, I got my master’s degree from Loma Linda University as a Speech-Language Pathology major and an Audiology minor. About 20 years later, I got a postgraduate degree in ABA therapy. When people talk to me, all they see is the outside, the smile, and the success of who I am. People don’t see the pain and the strife underneath. I have Autism yet when people look at me, they can’t see my Autism, only my accomplishments. I also have chronic depression and anxiety, and I was suicidal. I drove myself to the ER twice. I was begging for help yet when I told my husband and my sister, no one believed me. One in five people grapple with mental health issues. I would like for people to know about how I’ve had to grapple with my mental health, how I overcome it, how it contributes to my passion, and, more importantly, my calling.

Several years after I graduated, I got married and started a family. My mom passed away early due to untreated mental health conditions that became physical health problems. She died at 57 while I was thirty with a 6-month-old child. After that, I did some soul searching and that’s when I quit my job, opened my practice, and later started the OC Autism Foundation. I was remarkably close to my mother and losing her pushed me into chronic depression. My mom died on July 4th, my birthday is July 5th, and by my 31st birthday, I had found I had lost myself. When you’re busy hiding your pain, you’re not truly living. I pretended that I was okay and continued with my life for the next 15 years trying to mask the enormity of the pain by helping others. I have had friends, whose spouses died quite young. Despite my encouragement, they refused to get help, yet still went to parties, not allowing themselves time away to feel the immense pain to the fullest. In the World of ASD, we call this masking. I hadn’t even allowed myself to really cry about my mom’s death until recently. As someone who went through this, I implore you, even if you haven’t overcome your pain, to share your struggles so that others can help you. You are not alone in your journey.

Growing up, I was embarrassed by my family’s struggles and my Vietnamese heritage. After my mom passed away, I eventually learned to accept who I was, and be a proud Vietnamese American, including my Chinese roots. When I opened to Buddhism over 5 years ago, I was able to better understand the meaning of “Our Community (OC)” and how our past and ancestors contribute to our everyday success. I wanted to understand the fire in me. The trauma that my mom and dad went through during their refugee experience is called generational trauma. Scientifically, the trauma is in my mom’s DNA and genetically passed on to me and my siblings. When I was noticeably young my mother collapsed, and I remember my family called 911, and when the ambulance came, they claimed there was nothing wrong with her. My mom had a panic attack. She didn’t take care of herself, and it became a mental health problem – she got obese and gravely ill. From my personal experience, I can see now that obesity, incarceration, drinking, and gambling are all related mental health issues in my family.

I am one of five kids. Two of my brothers have been on drugs and incarcerated. My youngest brother Huy was in jail (pronounced “Yale” with a Vietnamese accent) for 20 years. For the last five years, he managed to stay out. When he was away from the family, we joked that he was in the Ivy League. Sometimes humor helps you cope with the pain, but it also helps you escape and avoid the real problem. My other brother, Cuong, helped me pay for college, which allowed me to better serve the community. He was working in the tech industry, but during the 2001 crash, he lost all his money and got into drugs, and as a long-term consequence suffered multiple strokes and seizures. He checked into a nursing home at 50 years old. He just recently got out because his wife took him back and I love his wife because she has the strength to come back for him. I learn to be proud of my family no matter what. My siblings struggle with drug addictions, and gambling addictions and have been arrested multiple times, yet I’m proud of them for confronting their mental health conditions and refusing to give up. I will continue to cheer them on and pray for their full recovery.

For the last five years, I have been getting better thanks to my teachers, “Thay” the Venerable Thich Nhat Hanh, and Sister Chan Khong. I would sit in a room with them, carry on a conversation, and practice eating, drinking, and walking meditation. They taught me to enjoy the moment, the experience, and the people I’m with. “Thay” taught me to love myself, to believe in myself, and to trust the cosmos. He made me feel that I was the smartest and most worthy person in the room even next to him. When you have a teacher who serves you tea, holds your hand, and puts his hands over your head, it’s the sincerest form of love. I apply the same principle to my patients. When they are with me, I treat them like they’re the smartest people in the room. I believe that they’re smarter and more beautiful than I. When I hold that belief, and so do my patients, they will be able to perform and get better. Together we can heal ourselves and each other. Understanding the power of our collective energy and the sense of community guides me to this day.

The OC in OC Autism stands for “Our Community.” We help the Vietnamese American community, as well as the community at large. When you help a child or a family, the community becomes healthier and more balanced. When Autism became a major issue in the community, people started coming to partner with me. They believed in my vision, and my ability to help the Vietnamese Community, specifically those suffering from mental and behavioral health issues. OC Autism is not just about helping children with Autism. The children are our focus, but their wellness is only a facet of the well-being and happiness of the community.

People with disabilities and healthcare providers experience disproportionately more problems during the pandemic. The needs of the community have grown exponentially, so we must recalibrate. We need more people on board, but staff retention and hiring have been difficult during this uncertain time. With my qualifications, I too can make more money elsewhere, but I chose my trail, my calling, the non-profit path, and the uphill battle. I know that the people I help, the people whose kids have Autism and who struggle with mental health, all need my help. I can’t quit and walk away. This is my community, this is my calling, and God will not allow me to fail. Every time I feel exhausted or defeated someone comes along and helps me back on my feet. OC Autism is not going to close because God won’t allow it to close. I have faith.

Here is a BIG dream. Why do I care about building the Our Community (OC) Cafe and the Vietnamese American Cultural and Heritage Center (The Center)? We need to create opportunities, preserve our history, share our stories, and amplify our voices. This will in turn facilitate healing from our generational trauma that prevents us from receiving help. We Vietnamese Americans like to “show off” sometimes. Maybe because we have something to hide: our traumas, our Autistic children. I hope that when someone reads this article, it is going to let them know they are not alone. I hope it’s going to let them feel free to share their stories: the struggle, the journey, and the happy conclusion. And they will be open to telling others: “My kids went to jail too.” or “My kids have Autism too, and I’m so proud of them.” or, “My uncle committed suicide; he didn’t just die, he took his own life because he tried to deal with his mental health problems all by himself.”

The answer to helping the Vietnamese Community is simple, if expensive. My dream is to repackage my help, my services not as Julie Diep the Speech-Language Pathologist, the Autism expert, or the mental health expert. I want to reinvent my treatment as an Employment Center that hires people of all abilities, as The Center that helps people connect to much-needed resources. Then people will be willing to get support and receive the help they need for their kids, their family, and their community. Since we opened the OC Autism Community Center in Garden Grove, CA, people are only willing to come if they have accepted the fact that their child has Autism and that their child needs therapy. But if we come together to build the OC Cafe or the Vietnamese Cultural and Heritage Center, then people will be more willing to come to support, learn more about Autism and our history, and in turn get the support they need to address the root of the problem to help them and their families. Generational trauma prevents us from embracing our pains, receiving help, and healing from our mental health struggles.

We continually explore ways to acquire acreage to build our dream. If the Vietnamese American people, OC Autism standing for mental health and education, and all other Vietnamese-owned businesses come together, we will be able to get the land and grant we need to actualize the dream and heal as a community,

My dream is to build a comprehensive treatment center, so we can help eradicate the root of the problem, which is generational trauma. Vietnamese people prefer not to talk about Autism, mental health, suicide, and addiction. Vietnamese Americans and Asian Americans are good at masking. We are good at covering our Autism and our problems. Up to this point, I have exhausted my personal reserve. The next step now is for the community to be part of the solution and help resolve the big issue of generational trauma. People ask me how they can help, and now I say to them, and you, that we need a permanent home for OC Autism, so we can help the community uninterrupted and expand our programs. If we continue to lease, we must keep moving every 3-5 years when the lease is over, and the property owner gauges us and moving often significantly interferes with our service delivery. If we could build the OC Cafe, that would allow us to create more jobs, generate a steady stream of revenue and become more sustainable. If we build a gift shop or coffee shop where young adults can work, and children can get the skills to succeed that would be the next step. These kids don’t want to be at home alone all the time, they want to interact with others and be contributing members of the community.

In the end, I learned to love myself, my family, and my community. I learn to embrace my disabilities, my family trauma, and our story. I learned to connect with others, receive graciously with two hands and ask for or accept help openly. And I learn to transform all that into meaningful actions and a strategic plan to build The Center. We need the support of Our Community (OC) to succeed and actualize this dream to address the root of our mental health problems in the Vietnamese Community that prevents us from receiving help, working together, and moving forward. The future is unknown, but what I am certain about is the clarity of my vision for the community and the strength of the community to come together to heal. Together we can accomplish anything. My definition of success is being available to love myself, my children, my husband, and my community. When I’m successful at home as a wife and as a mother, then I’m successful in this lifetime. Mother Teresa said it simply, “If you want to change the world, go home, and love your Family.” I wasn’t the best mother, and I wasn’t the best wife during my mental health struggles. Still, my family is whole today. And when my house and home are in order, I can now serve the community and answer my calling. I hope you too shall find yourself, and your calling.

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