Written by Marisa Hamamoto
It’s Asian American and Native Hawaiian/Pacific Islander (AANHPI) Heritage Month! AANHPI Heritage Month is a time to reflect upon and celebrate the remarkable role of the AANHPI community in our nation’s history, and also reflect on challenges we face, including experiences of families navigating autism within our cultures.
Recent data highlights that, while autism is prevalent across all demographics, Asian or Pacific Islander children show a slightly higher rate of 3.3%, compared to the national average of 2.7%. This increase suggests improvements in the number of assessments. Yet, the average age of autism diagnosis among Asian American children often lags behind due to various factors, including cultural stigma and lack of awareness (Centers for Disease Control and Prevention).
In many Asian cultures, academic success and conforming to social norms are greatly emphasized, often leading to a reluctance to accept an autism diagnosis. This cultural stigma can result in significant delays in seeking diagnosis and treatment. Many Asian American parents grapple with internal and external pressures, fearing judgment and isolation from their communities if they acknowledge having a child with autism (Autism Parenting Magazine).
I was diagnosed with autism at 40. I’m 42 at the time of writing this article. Reflecting on my own lived experience as an Asian American, I don’t think my parents knew what autism was when I was a kid. I was a straight-A student during my entire K-12 education. Looking back there were many signs of autism: noise sensitivity, challenges with understanding jokes and figurative language, and challenges with social interactions.
While a Freshman in high school, one of my only school friends betrayed me through a class group assignment. I was hurt and couldn’t cope to the point that I convinced my parents to let me homeschool for my Sophomore year. Because I did well academically, my parents didn’t think I needed professional intervention. For my own family, more than stigma, there was a lack of awareness.
However, the stigma within the Asian American community is real. Shortly after my autism diagnosis, I told a respected Asian American leader about it, and their first response was, “I’m sorry to hear that.” This response represents the collective shame behind autism and disability within the Asian American community.
As I navigated life after my autism diagnosis, one place I turned to better understand autism was social media. There were a decent number of autistic creators sharing their first-hand experience with autism, and it put me at ease that I wasn’t alone. However, I noticed that there were very few creators who were Asian, AKA who “looked like me.” Because of the weight of shame associated with our cultures, many autistic Asians were reluctant to come out.
At the time of diagnosis, I was already a disability inclusion advocate through leading Infinite Flow Dance, a dance company that leads a global movement to advance disability inclusion. I knew the power of representation, yet I was initially reluctant to come out about my autism diagnosis because of the shame associated with my culture. I confronted my own ableist beliefs for a few months, then decided to come out publicly. Since then, I’ve received a plethora of messages from fellow Asians who are autistic or are questioning, expressing their gratitude towards sharing publicly – they were not alone.
Whether you are Asian American or not, if you are feeling shame about your autism, here are three actionable suggestions:
- Connect with others through support groups or online communities. Sharing your experiences can validate your feelings and provide comfort in knowing you’re not alone.
- Embrace your unique qualities and strengths. Autism is a part of who you are but does not define your entire identity or worth.
- For the next week, start each day by writing down one thing you’re grateful for about yourself. Science shows that feeling gratitude can increase experiences of positive emotions and decrease experiences of negative emotions, like shame.
By taking these steps, we can build a more accepting and inclusive community for everyone.
Note: I am just one Asian American with autism sharing from my own experience. Each Asian American autistic will have their own unique story.
Need more inspiration? Want to be part of an awesome community promoting wellbeing and happiness in the autism community? Join the Autism Wellbeing Alliance!
References:
Autism Prevalence Higher, According to Data from 11 ADDM Communities | CDC Online Newsroom
Why Can’t We Talk About Autism in the Asian-American Community?
