Lost in Translation: Asian American Children and Autism
By Audri Lu-Uhlken
Being raised in a strict, first-generation Asian American household in Iowa meant silence prevailed over all else in order to “save face” from our Southeast Asian community. “I love you” was rarely, if ever, exchanged, and interpersonal violence and family struggles were shielded by laughter and smiles in front of others. Any social or health deterrence outside of the able-bodied, two-parent, heteronormative household narrative, especially mental or physical disabilities, was met with denial or kept a secret, resulting in isolated suffering from unspoken issues.
I thought my family was alone in burying problems out of fear of perception. It turns out that we were adhering to a much larger cultural system enforced by a majority of Asian communities who hold similar beliefs of suffering in silence to prevent disgrace from “outsiders.”
Several Asian cultures believe physical, neuro-behavioral or mental health disorders mean family lines have “tainted blood,” as my own relatives maintain. Others tie such medical diagnoses to “bad karma” from people’s wrongdoings in their lives.
Autism Spectrum Disorder
April is Autism Awareness Month. My interest in autism first arose in 2020 when I became pregnant. My husband and I were kicking around the idea of getting him tested for high functioning Autism Spectrum Disorder (ASD), formerly named autism and used interchangeably, a neurological and developmental disorder affecting social skills, communication, learning style and behavior. ASD includes several conditions within the spectrum. He was 33 years old at the time, but there were several signs that pointed to him possibly being “on the spectrum” in adulthood:
- Literal language and communication – difficulty understanding sarcasm or certain phrases, such as “cat got your tongue?” from others who are neurotypical
- Viewed as being blunt or rude when this is not the case
- Having obsessive routines and discomfort with changes
- Experiencing sleep disruption and restless movement
- Apparently missing social cues or having trouble understanding social “rules”
- Overly observant of small details, patterns, smells and sounds
- Meticulously planning of details before taking action
- Childhood diagnosis of attention deficit hyperactivity disorder (ADHD), a neurological condition affecting behavior, which may lead to trouble focusing, impulse-control and organization. ADHD is the most common coexisting condition in children diagnosed with ASD; nearly half of all individuals diagnosed with ASD also have signs of ADHD. 1 in 4 children diagnosed with ADHD have low-level signs of ASD.
My husband and I never moved forward with getting a diagnosis because our contemplations took place during the same year as the COVID-19 pandemic, but my curiosity about autism in motherhood peaked. Since the first autism study in 1977, evidence shows that ASD is highly heritable. However, genetics is not entirely responsible for the condition—as research shows environmental factors are also a contributor. What if our child turned out to be on the spectrum? I wanted to be prepared to better understand and advocate on our child’s behalf.
Asian American Children with ASD & Systemic Barriers
Roughly one in 36 children in the United States is diagnosed with ASD, and boys are four times more likely to be diagnosed with ASD than girls. For the first time, in 2020, the U.S. Centers for Disease Control and Prevention found that autism is being diagnosed more frequently in Black, Hispanic and Asian or Pacific Islander children than in White children. Yet, less than 1% of Asian children residing in the US are getting treatment after the diagnosis, the lowest of any racial group.
And as Asians are the fastest growing racial group in Iowa and in the United States, more disability advocacy for Asians is critical to help improve the overall health of diverse Asian American communities. Several research studies indicate that Asian traditional values and stigmas against disabilities, mental illnesses and seeking help from “outsiders” can negatively affect the acceptance of diagnoses, and even prevent families from seeking a diagnosis.
Other factors contributing to the underdiagnoses include cultural and language barriers, misinformation about disabilities, socioeconomics and the oversimplified model minority stereotype, leading to structural systems glossing over Asians with disabilities in the United States.
Autism American Children & Education
In the education system, 20% of public school students in the United States are being served under the Individuals with Disabilities Education Act (IDEA). But when data is disaggregated by race, only 7 percent of Asian American children — the lowest of any racial group — are served.
Implicit biases held by educators and evaluators, met with parent hesitancy, has led to largely unmet needs of Asian American children with disabilities, according to NBC Asian America. The model minority myth – the stereotypical belief that Asians are naturally more academically successful – hinders how systems look at and treat Asian children residing in the United States.
Clementine Karl, a family navigator for the Regional Autism Assistance Program and who serves several Asian families whose children are diagnosed or seeking diagnosis of ASD in Iowa, said language barriers and cultural confusion are a few of the gaps needing to be addressed in providing more adequate care for Asian children with ASD.
“Many families believe they are in trouble with the system if their child receives an ASD diagnosis. Oftentimes school services are declined by families because of this so they are not a ‘burden’ to the education system,” Karl said.
Thus structural systems’ neglect, combined with cultural hesitancy from parents or caregivers, often results in Asian children with ASD from being served inadequately in schools.
Autism American Children & Sexual Assault
April is also Sexual Assault Awareness Month, and it is important for parents, caregivers and communities to be educated on the higher risks of sexual violence that children with ASD face.
National Public Radio reported on unpublished statistics from the U.S. Department of Justice that showed persons with intellectual disabilities are seven times more likely to be sexually assaulted than non-disabled peers. In girls, that rate is higher. Recent evidence shows that nine out of ten autistic women have been victims of sexual violence.
All children with autism, but particularly girls, have a higher risk for sexual assault because harm-doers may target them as a more vulnerable group. More than 90% of victims and survivors of sexual violence know their abusers, and for people with intellectual disabilities, this percentage is higher. The assaults are often perpetrated by people whom children are taught to trust. And it many cases, the assaults occur repeatedly.
When children (and adults) with ASD are sexually assaulted, the victims may show indicators in ways that get ignored or misattributed to ASD symptoms rather than to assault. In addition, challenges with communication may hamper disclosure, but if there is disclosure somehow, victims may receive skeptical responses – which often happen with neurotypical victims as well.
These potential occurrences reinforce the dire need for community to be vigilant in recognizing signs of sexual assault against children and adults with ASD and other disabilities.
Autism & Caregivers
Research shows that parents and caregivers of children with ASD often report increased levels of stress, depression and anxiety. Unmet mental health needs of parents and caregivers of children with ASD pose a significant risk to their overall well-being, and in turn may affect the development of such children.
There are several online personal accounts of Asian parents residing in the United States feeling overwhelmed by guilt, shame and embarrassment from the ASD diagnosis of their children. One mother, Melody Cao, wrote in University of Southern California’s Center for Health Journalism: “In Asian families, raising a child with autism spectrum disorder means not only piles of bills, long wait-lists and underfunded programs, but also a life in double isolation.”
Autism & Community Care
My daughter is now almost 3 years old, and does not appear to display signs of being on the spectrum. Yet, as an Asian American mother, I strongly support comprehensive responses and services for neglected children in all marginalized communities. If structural and cultural systems are working against Asian children residing in the United States with autism and disabilities, and there is a pattern of them being taken advantage of, who should take on the responsibility of advocating for their needs?
The shared, communal mentality of suffering in silence from previous generations has prevented thousands of children from receiving the care they deserve. As a community, we must help take a load off parents and caregivers of children living with ASD by fully embracing the diagnosis with love and compassion rather than shunning it as a communicable disease. Undoing cultural stigmas around disabilities, mental health and professional services by pushing for the acceptance and understanding of ASD and disabilities among Asian American children is a step forward. If not, Asian children residing in the United States with ASD will continue to be lost in translation.
‘Asian American’ and ‘Asians residing in the United States’ are used interchangeably in this blog.