Article 4: A Vietnamese Family’s Journey with Autism
Bringing up a child with autism is a hard road for parents. Even though Autism occurs in 1 in 54 children in the U.S., many Vietnamese do not know much about Autism and stigmatize children who have developmental delay. Language barriers and feelings of shame in the Vietnamese families contribute to a later age at diagnosis, and delay entry into important early intervention therapies. One way the Vietnamese community can help is to recognize developmental delays in children and be supportive of families with children with Autism.
VFAAB (Vietnamese Family Autism Advisory Board) desires to promote a culture in the Vietnamese community where children with Autism are accepted in public, and community members are able to identify families in need and reach out to them. Vietnamese immigrants with autistic or developmentally delayed children face many challenges. The following story illustrates the strengths and challenges of one Vietnamese family. We received permission from Phung to share her experiences.
In 2001, Phung and her family left the Vietnamese Communist regime to join her husband in the U.S. Linh welcomed two boys into the family in 2002 and 2003. She enjoyed a healthy second pregnancy, working full-time and taking care of her eldest son. Phung recalled that her second son was born normal and healthy like any other infant. As he grew however, she realized Andrew was different from his older brother. It took Andrew a bit longer to learn to walk. At 14 months, he would not answer when called by name. At the age of two years, he was not talking nor did he make eye contact. Phung and her husband worried that he was deaf. He liked to hide, and Phung would turn on his favorite television channel to draw him out of hiding. She observed that he did not like to interact with other children. At home, he often played alone in a dark corner, such as in a closet or the corner of a sofa. Most of the time, he did not care about eating or being wet or dirty. Phung recounted that, “Andrew often waved his hands in front of my face and clapped his hands repeatedly. All of these hand gestures and not talking made me very worried, and I brought him to see the family doctor for help.” At first, the family doctor reassured her and told her it was just a speech delay. He told her he has two children of his own that were slow to talk and that she should not worry. He reassured her that by age 3 or 4 years old, Andrew would be talking. Phung did not accept this and pressed the issue with the family doctor who later referred Andrew to Seattle Children’s Hospital. Phung arrived at Seattle Children’s Hospital with Andrew, but she was not allowed to be in the exam room with him. She was told that they would be doing tests and drawing his blood when he fell asleep.
Around 2.5 years old, Andrew received a diagnosis of Autism from Seattle Children’s Hospital. Phung shares that, “at first I was very sad, and this drastically changed our family life.” There were many challenges, and she did not fully understand the scope of Autism. “Sometimes I feel tired and exhausted, but my mother's instincts do not allow me to give up. Since then, I have always tried to learn and keep going, although I have limited [English] language, I still persevere until today”. Though Phung’s English is limited, she does not let this impede her from doing her best to learn about Autism and help her son. Andrew is one of the lucky few to receive a diagnosis of Autism earlier in life. However, the challenges of navigating the medical system to obtain help and services offer another set of obstacles to overcome for Phung.
Step by step, Andrew received needed services. He started with speech therapy and early intervention. However both were discontinued when he turned 3 years old. The cost prevented the family from continuing speech therapy. Phung spent many nights quietly worrying, crying and feeling sad because her son was getting older and could not do things that other kids his age were doing. She remembered “it was difficult when you are out in public, and people don’t understand when Andrew has an outburst, and some people would give me hard stares, and I know they were thinking, ‘why can’t you teach your son so he doesn’t yell like this?’ But then there were some kind and understanding people who understood and would ask me if I needed help.”
Time went by, and when Andrew was 11 years old, a teacher shared with Phung about an open house for children with special needs, sponsored by the Developmental Disabilities Administration (DDA). She shared that she was trying to learn all she could to help her son, so she attended the meeting. The specialist that evening helped her fill out the application to apply for DDA services for her son. Andrew was deemed eligible and received much-needed services that helped to integrate him with the community. He was enrolled in swim lessons, camping trips and Special Olympics.
After 4 years on wait lists, Andrew finally started Applied Behavioral Analysis (ABA) therapy at age 16. Ideally, ABA is started as soon after diagnosis as possible, preferably before age 3. Despite this late start, ABA therapy helps Andrew to control his outbursts, develop better speaking skills and understand his studies better. He also learns how to navigate daily activities, like street safety and how to select his own lunch items from the school menu. Phung shared, “one of the most difficult situations that I am still dealing with is when Andrew hears a baby/child crying, he gets disturbed and he wants to hit the baby/child.”
Phung reflects that it is difficult to raise a child who has Autism, especially when living in a new country and facing a language barrier, but she did not let that stop her. She now advises parents to ask for a Vietnamese interpreter at appointments, because she found this to be instrumental in helping her learn and navigate the medical process, one step at a time.
Andrew is now 17 years old and Phung shares, “I am getting better acquainted with the surrounding environment and participating in group activities. There has been growth and positive improvements. I would like to see other parents with children with developmental delays have a better future. A helpful advice I would like to give would be to accept your child who has Autism and don’t be afraid to go out in public. Do not keep your child locked in the house. Please bring your child into society, because that really helps with their development. Each Autistic child has something special, and for my son his special talent in singing and dancing. When I was first dealing with this there was nothing out there, but now there are more resources. I’d like to recommend HopeCentral Pediatrics and VFAAB. The earlier you get help for your child, the better. In closing, I would like to say to families, especially the Vietnamese community in particular, if your family unfortunately has a child with Autism or any other disability that needs help, then boldly seek help from centers of authorities. For example, VFAAB has been helpful for me. VFAAB works to increase awareness and provide education about Autism. Ultimately, I want our children to be happy, to have an optimistic life and to integrate into society.”
It is our hope that families with children with developmental delays feel accepted in the Vietnamese community. We want to engage local and trusted community members to reach families who lack awareness or avoid addressing the developmental delays. We want community members to be able to recognize when a child is not meeting developmental milestones and be able to encourage the family to take the child to the doctor for further evaluation. Furthermore, at your child’s well child checks, when the doctor gives you a questionnaire form such as the Modified Checklist for Autism in Toddlers-Revised (MCHAT-R) at 18 months and 24 months of age, please complete the form. The MCHAT-R form is important for screening for Autism. You can ask your doctor for the questionnaire form in Vietnamese. If the form indicates your child is at risk for Autism then your doctor will refer you for an Autism evaluation. HopeCentral Pediatrics and Behavioral Health is able to do Autism evaluations and is actively involved in educating doctors and other clinicians about ways to diagnose and treat Autism, as well as services available to families with autistic children. A toolkit is available for medical professionals (LINK). Remember, the earlier the diagnosis the better the outcomes achieved through early intervention and treatment.
As National Autism Awareness month draws to a close, VFAAB hopes that this month's articles have helped the community better understand Autism and come rally to support families who have children with Autism. Our best advice to families is to be aware of the milestones that young children are expected to reach at each age. If your child is missing an expected milestone for their age, please bring it up with a teacher or your doctor, or call the Help Me Grow hotline at 1-800-322-2588. If you have a child with Autism, and you are looking for more information or community, please see the VFAAB website at www.VFAAB.org.
Already translated milestones for birth to 6 in Vietnamese:
https://www.dcyf.wa.gov/sites/default/files/pubs/FS_0030VI.pdf
Additional Resources
Help Me Grow Washington https://helpmegrowwa.org/developmental-screening
Hotline 1-800-322-2588
A Few Autism Warning Signs to Look for:
Social differences
Doesn’t keep eye contact or makes very little eye contact; Unable to make friends or uninterested in making friends
Communication differences
Doesn’t say single words by 16 months; Doesn’t respond to name being called but does respond to other sounds
Behavioral differences
Rocks, spins, sways, twirls fingers or flaps hands