Q&A: On Autism Advocacy and Language

Note: This question and answer spotlight is featured on Habesha Mom’s Facebook Group — an online space where mothers of Eritrean and Ethiopian descent congregate to support one another in raising the next generation of bright, motivated individuals. Interviewed by Beri Gebrehiwot.

IMG_3399Beri Gebrehiwot: Where are you from and where do you reside.
Ariam Alula: New York City is home. I grew up in a multicultural neighborhood called Parkchester in The Bronx. I loved that neighborhood a lot and cherish the memories of my exciting childhood. My family moved out of the neighborhood halfway into my third grade school year, and we’re still living in the same neighborhood.
BG: Tell us a little about your background and why you are passionate about equipping and advocating for Autism in black communities.
AA: Here on Earth my purpose is to simply serve, and not only serve my family but a generation of families who reflect mine in numerous ways namely immigrant families, families of color, first-generation Americans, siblings and caretakers of individuals with autism. I like to believe that had my parents received the support of a younger, cooler and more absorbent representative from their background in the late 80s/early 90s, during my brother’s infantile years, they would have felt more equipped to navigate the unique challenges one faces when parenting a child on the spectrum.
BG: From your experience and personal research, what would you say is the greatest lack or shortage in black communities when working with ASD in their own families and community?
AA: Empathy and lack of knowledge of the disorder itself. I wouldn’t be surprised if relatives from either side of the family didn’t know what to call my brother’s disability if I asked. How would I know that they don’t know? Because they’ve never asked. How can anyone learn if questions aren’t made? And on a sadder note we’ve failed on our part as caretakers to sit them down and explain what autism is to them. But to drive my point, nobody asks. Here’s why I think that is. People feel bad. People want to know but are afraid to ask. People don’t care enough to know unless they are personally affected.
I understand the perspective of one fearing to highlight what makes someone different because it may seem impolite or embarrassing or inconsiderate of how the other party may react/respond, but I don’t see it that way. The one time I have noticed another person genuinely curious and open to know more about this issue happened in Eritrea, or as we Eritreans like to call our home, Adi. One afternoon I happened to be sitting in my aunt’s living room when her and my mother were discussing my brother in his formative years. Also in the living room was a younger cousin who caught wind of their conversation. He was curious to uncover what my brother has. “Intay alewo?”, “Intay alewo?” he asked. They continued on. Neither of them stopped their conversation to address him. While they may have unconsciously dismissed him, I calculated it as a missed opportunity. On the other hand it highlighted the sensitivity of the topic and how cautious one can be in discussing the life of a disabled individual, sometimes even with one’s own blood.


BG: What is the disparity between communities of color and white American communities in terms of living with ASD? Why do you think that is?
AA: I once read an article that boldly stated that Black and Latino children are less likely to be diagnosed with autism than their White peers. I don’t know this to be factual. In fact, revisiting this tidbit found on the internet makes me wonder what other kind of information is available to use that we’re not catching. During an effort to collect stories from other Black families, I made careful note of an article about a father’s fear of his son interacting with a police officer. “…My biggest fear is what happens if a cop sees my son and feels threatened because my son doesn’t fit within a cop’s normative ideas of proper behavior,” said the author in the Medium writeup. This parent’s worry isn’t far fetched as I believe being Black and autistic in the United States can be seen as a “double disparity” given the tarnished reputation between minorities and law enforcement.
BG: In the perfect world, what would your family have had in the early moments of when your brother was first diagnosed. What differing outcomes might that have had today?
AA: My mother likes to flirt with the idea of my brother being a police officer because throughout his childhood and early teen years he showed interest in living as one. (We still have photos of him dressed in his navy blue New York Police Department uniform for halloween– police hat, club, and everything!) What I wish for my parent’s to have done more starting in my brother’s early years is to have promoted self-independence on his behalf. Independence looks like several things. Training him to use public buses and trains. Letting him run wild and free in the park. Wash his own dishes and cook his own meals more often. Allowed him to have fallen off his bike. I believe they allowed these things to happen to a degree and may have pulled back from letting these type of independent practices from happening for fear of my brother’s safety. He could have disappeared, vanished, been abducted, ___(insert a parent’s nightmare come true here)____ but the point I’m making is that my parents could have allowed my brother to scrap and fell and bruised his knees a few more times because that would have promoted a greater sense of independence and trust between him and my parents today.


BG: If there was one (or two) things you would want to share with the Eritrean/Ethiopian community regarding ASD, what would that be?
AA: I challenge these communities to step outside of what feels comfortable for them and ask questions about ASD. Is there someone you know who is living with ASD? Reach out to that person today and see how you can be of help to their lives. Another frame of reference is to visualize yourself in another woman or man’s shoes and ask yourself: If I were a person living with autism or caring for that individual, what kind of help would I want?
BG: You’ve mentioned the importance of “language” used in regards to Autistic children. Can you share more about that and do you think it is more problematic within minority communities?
AA: The language I’ve observed is through the lens of being an American raised among Eritreans, and reading the emotions of individuals when hearing “autism”. I do want to make note that there isn’t a word for “autism” in Tigrinya or Mandarin Chinese.
Nothing annoys me more than hearing slurs used to describe or reference a differently-abled individual because whether or not we feel the immediate impact of our language someone else probably will. At 20, I traveled to Walt Disney World Studios with my family. I had to sit in a separate row from the rest of them so that they could be seated next to one another. In trying to explain the seat change to another crew member I heard one attendant use the word “retarded” while referring to my brother. I overheard a member of the flight crew call my brother “retarded.” I felt instant rage. If that’s what he thinks my brother is he’s mistaken. I thought. I sat there trapped in thought and infuriated on my first plane ride out of New York since ‘99 all because of someone’s language. Other words that I’ve heard people use to refer to individuals with a mental and physical impairment are slow, dumb, loser, re-re (an abbreviation of the already abbreviated “retard”), and stupid.

I went through an outer body experience once at a diner when I heard another customer joke about his friend being “autistic” because she was laughing hysterically. Language is a beautiful part of life yet we use it in ugly ways all the time. And it’s not only in the English language but in my family’s language of Tigrinya. Words like humum and tsulul, the English equivalents for “crazy” and “sick” are used as descriptive adjectives for individuals with a disability. (These words also function as curses.) I’m still waiting to learn what the word for autism is in my mother’s first language.

TaiwanFashionPhotographer_Hsinchu-3 (1).jpg

BG: You’ve travelled quite a bit over the years. What have you noticed, if any at all, about the ASD community? Have you come across or sought information about the diagnosis, treatment and life of individuals with Autism?
AA: Somewhere in the midst of being on the receiving end of an administration that micromanages its teachers and puts parents (and their wants first), I facilitated English lessons about plants, people, mathematics, pop culture and more to children ages 2 to 12 in Northern Taiwan from August 2016-17. The students exhibited various capabilities and interests while working with them. One of my favorite students exhibited traits that I instantly recognized. He spoke out of turn, didn’t sit peacefully, repeated targeted words and phrases, and answered “What’s your name?” when you asked for his name. He also made poor eye contact. Little Daniel loved toy cars and excelled at every task that I and other teachers set out for him to do in spite of an instinct of mine that told me he had autism. I voiced this in front of other foreign teachers in our weekly meeting, and it was the surest I had ever been as a young teacher, new to the school and the island. I spoke to the head of the school about this and alluded to his display of classic autism signs to Little Daniel’s parents in the comments section of his progress report. This wasn’t the only time I self-diagnosed a child with having autism but it was the first time I had said something to anyone about it.

It’s too early for me to say how Autistic individuals are treated because my experience working with autism comes from the home, as the younger sister of a gentle man-boy on the spectrum. In Taiwan, when reading a comment from a parent whose son I suspect is on the spectrum, I noticed the word “disease” was used. “Are there many other people in America who have this disease?” the parent wrote. I was thrown off by that word but also enlightened because it reflected that some individuals may in fact view ASD as a disease and not for what it actually is — a spectrum disorder where one individual with autism can look/live/behave/communicate differently from another individual on the spectrum. As I wrote in this timeless blog post here, “No two individuals with autism are the same.” One of my co-teachers who was Taiwanese and served as a disciplinary to the nursery-aged students treated the child with harsh love. She exerted force when disciplining this student because he was hyper. I honestly think that her not working with students of varying abilities and behaviors might have caused her to treat him this way. Still, I believe the school I worked for tried/is still trying to work with the child who I suspect has autism.
BG: Please feel free to share any upcoming events, resources or surveys you have coming up and may be a great fit for our community of Habesha Moms.
AA: Here’s a mind mapping tool I created during the process of applying to graduate school. https://docs.google.com/presentation/d/17EZopDzLzb16Qd8RB2d4FWzGFzTCsJal6xDchWuaUxA/edit?usp=sharing
You’ll find that I enjoy asking questions because I strongly believe that we’re all meant to seek life’s biggest questions. This self-compiled resource will also lead you to other narratives highlighting the unique challenges of families touched by ASD. Feel free to view the slideshow, take notes, and recycle any link you believe will benefit you or a friend. Additionally, I’d love to hear what you think of my blossoming project through the available channels below:
https://www.linkedin.com/in/ariamalula/              https://www.facebook.com/fiercelyeritrean/

Thank you once again for taking the time to share your passion and desire to reach and advocate for individuals and families with autism.

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