Afrotistic, page 10
“I hate my school!” Will shouted angrily. “No one ever notices me.”
B wrote “venting”.
“Sorry to hear that, Will, and thanks for that suggestion,” I said “I also don’t like it here. The gossip girls suck.”
Blank stares.
I continued, “And if it weren’t for this guy here,” I nudged B a bit, his serious expression didn’t seem to budge. “I would have been lost roaming the halls for the whole first week at least.”
Now I was receiving some nods and “me too” mutters.
“What about design principles!” I said, a bit too abruptly for Mason, who jolted up in his seat. “Sorry, Mason,” I said and then lowered my voice slightly. “How about we create suggestions for people like the gossip girls and the floor plan team. That way we can send them to people like Mrs. Johnson here to pass on to the administration! Maybe they can do something!”
“Why?” Mason said. “I go to West too, and everything’s fine to me. I like it here. Why does this group have to whine and complain about everything?”
Mrs. Johnson interrupted and lectured about how we shouldn’t downplay the struggles of some just because others don’t experience the same challenges. I thanked her and continued.
“But that’s a good point, Mason. Maybe other times we talk about autism, what it is for some and what it is not for others. Not complaining, but just talking. We can even bring in adult speakers.” I smiled, proud of myself for thinking on the spot. “Hey, I know a college student from the Disability Studies Center at the University of Buffalo! Maybe she can talk and help us find other autistic adults who can give us advice.”
“Yeah!” Andrew said from Zoom. His mom beamed. B did too. Mrs. Johnson had her head down, taking handwritten notes with vigor. Our designated secretary, I supposed.
Mia yawned loudly, and with the thickest valley girl accent she could muster, she said, “This all sounds good and all. But didn’t Johnson say this group thing is also welcome to other people too? Not just people with autism?” It was hard for most of us to hear her with her accent, and hard to adjust to the fact that she was referring to Mrs. Johnson as Johnson. Mrs. Johnson nodded to confirm. Mia leaned back in her seat and popped a West-contraband stick of gum before saying, “I doubt I even have autism.”
“This group can also help to teach others about what autism is,” I said, trying my best to stay positive.
B took a step toward me while saying, “What about comorbid stuff? Like things that sometimes happen with autism, like depression, anxiety, or…” He shifted awkwardly before muttering, “Other disorders.” Andrew became stiff for a second on the screen, and his mother smiled, probably trying to tell B that it’s okay to just say the word.
“That’s great, B,” I said, without fully realizing that I came to B's rescue from his embarrassment.
“Why is your name B?” Mia said, looking annoyed.
“Because I’ve heard I look like a B-word name,” he said, and I tried to hold in an embarrassed blush. Mia rolled her eyes. She was beginning to be too judgmental for my mental state.
“Whatever. Look, guys, I want to run for District Vice my senior year,” Mia said.
“Vice?!” Will shouted.
“District Student Vice President!” Mia said with an even stronger annoying valley girl accent, if that was at all possible. “I want to meet as many people as possible. I don’t even feel autistic anyway. I just like, got ‘diagnosed’ like a couple of years ago. Mi Abuela’s fault.”
“Su Abuela?” Mrs. Johnson asked.
“Yeah,” she said, like a classic clique series girl. “My grandmother.”
“I know, dear, but why was it her fault?”
“Because,” Mia sighed, “she and her siblings used to be so loud growing up. She thought I was too quiet and weird compared to my siblings and cousins on her side. I’m cool with my cousins on my dad’s side though.”
“You act the same way?” said Will, shouting again.
“Yep. It’s easy to be cool around my other cousins. For the most part.”
“Are they Mexican too?” Mason whispered.
“Nah, they’re German and Scandinavian. They’re more chill than my Mexican side.”
“Interesting,” Mrs. Johnson whispered, except we all heard, so she arose from her notes and looked up. “Some autistic traits are more obvious in certain contexts. Maybe your Abuela’s side is one of those contexts.”
“Could it also be a cultural thing?” B asked. I was impressed with how in sync he was with the group.
I looked in B’s direction while staring into space before adding, “Right? My cousins from Sierra Leone are so much quieter than my cousins in Atlanta. It was my dad and his side that thought my brother and I were autistic.”
Mrs. Johnson smiled, shrugged, and winked at me, but I didn’t understand why. After a brief pause from all of us, she patiently smiled again before going, “Perhaps you have a topic for that English paper. Maybe Noa can show us what she finds at the next meeting.”
Not wanting to look confused, I carried on. I decided to spare everyone from the fun facts nightmare, to everyone except loud Will’s delight. Since he was upset to not state a fun fact, we had him state one for good measure, which he said he’s going to Morocco for vacation over the holidays this year. “It would mark continent 6 out of 7 for our family vacations,” he said proudly. We all snapped instead of clapped. Mason flapped his hands. Mia looked like she was going to also flap, but then as if suddenly embarrassed, she looked around and stopped herself. We concluded the meeting after 40 minutes, and I promised I’d share a Google doc so we could draft a mission statement and goals over the next couple weeks. We, as founding members, could all e-sign the document before Becca signed us off as an official student organization. One step closer to making Dean’s Merit! (except I didn’t say that last part)
As for Mrs. Johnson’s statement, it took me a little bit to further understand what she meant by a topic for my next essay, long after I returned home from walking with B. Once I did, I was inspired. I quickly began to write. I wanted to turn in the assignment a few days early this time.
CHAPTER EIGHTEEN
ENGLISH ESSAY
Ms. MacMillian
English 10
Prompt: Discuss a topic that you care about, citing two sources.
Title: Is my diagnosis la verdad?
I recently read an article on bone marrow transplants of the donors and the patients. Although it is getting better, the US has a chronically non-diverse bone marrow registry (Johansen et al., 2008). The database contains information on people who are largely those of European ancestry, meaning that people with diverse ancestry like those with Asian, African, or Hispanic descent do not always find a suitable match. These outcomes can be fatal for these patients, as they are unable to either receive the donor, or they have a higher possibility of complications if they do receive it (Haughton & Caputo, 2021, 11:30). As mentioned before, there are many initiatives to help combat the severe lack of cultural diversity in the bone marrow registry, but why isn’t it like this in other health sectors?
For diagnosing autism, most youths need to complete a social response scale. A scale where the youth and parents or teachers mainly rate how social s/he is. Frankly, we’re rated on our “coolness” if you will. This scale was developed and tested using mostly White Americans, confusing those from more cool or uncool countries into wondering if their diagnosis is true or just over or under exaggerated from the cultural norm. Even worse, artificial intelligence is hoping to automate this process by modeling participants of—once again—White people from America (Abbas et al., 2020). I argue that this does not make sense at all, and, since no one seems to be paying attention to it, can even cause overdiagnosis in some cultures and underdiagnosis in others.
While not always true, of course, some Hispanic communities can be described as louder than the average American household. Language is often spoken differently, as some Hispanic and other ethnic cultures like African Americans are louder and more vibrant in their speech patterns. When a child simply does not speak loudly or does not engage in vibrant and vocal activities like others in their culture, one could probably be perceived as odd. For example, my father and his friends always traveled to the Mardi Gras festival in Louisiana. My father, my brother, and I hated it there. It was way too loud and vibrant for our comfort zones, and it made us seem odd as Black people not enjoying the cultural festival.
My mom and my godmother were quick to rate me very low on the social response scale and cited that I: “Don’t seem self-confident when interacting with others”, “Avoid eye contact or has unusual contact” and even “Have a strange way of playing with toys”. Mind you, these references were cited all from three months before I was diagnosed. Back then, I was usually stuck trying to study on weekends in environments where everyone was over at our house. The adults were way too loud in the next room, shouting in both Krio, Nigerian, and American English. Then there were the younger adults dancing to the Electric Slide immediately next to me, and the other teens and children always “playing cops and robbers” or “freeze tag” (I never liked either game). To my despair, events like this happened nearly every weekend when we lived in Orlando, up until my brother got diagnosed and Ms. Angela suggested the house become quieter.
Does struggling to cope in obnoxiously loud environments necessarily mean I’m autistic? What about parents who rate their children low because that child retreats differently to naturally quiet households? In such a case, that kid’s score is just as autistic as my score, thanks to my mom and Aunt Ohunene (my godmother), and this doesn't make much sense.
The social response scale has even been proven to not work in some countries. Finland is known to be a quieter country (I won’t cite it because I’ve learned that in a meme or somewhere before), but as of 2020, researchers found that the social responsiveness scale wasn’t valid in Finland. Too many kids were quiet, and it was over diagnosing and yielding too many false positives (Jussila et al., 2015). It looks like China even had to make their own scale called the Modified Chinese Autism Spectrum Rating Scales (Zhou et al., 2017), and who knows what’s happening in developing countries like Sierra Leone or Nigeria. My cousins and god cousins are my age and didn’t know what autism was until I told them! Are the doctors there comparing their patients to White Americans too? (If they're using the social responsiveness scale, then the answer is yes, yes they are.) My god cousins always knew I was an “Ozoga”, or a strange one, so I’m positive I would’ve flunked the test in their setting too.
Now, I understand that I took a super long assessment that day when I was tested for autism, and the social responsiveness scale was just one test out of many. But it must have a lot of weight in our overall score, as artificial intelligence researchers are comparing the Social Responsiveness Scale to their new algorithm (Abbas et al., 2020). Essentially, they’re streamlining autism diagnostics to make them more efficient and accessible for everyone involved. Every model consists of samples, and these samples were from a database of Americans, mostly male, White, and middle class. I know, I know, everyone thinks AI is colorblind, neutral, and amazing, but if the normal results have already yielded confusion in some cultures, and invalidation and others, wouldn't AI results just amplify the significant lack of diversity? And that’s just in our country alone.
In conclusion, I wonder why anyone isn’t motivated to diversify the samples used in scales like the Social Responsiveness Scale to represent cultures around the country. It’s finally happening in bone marrow registries, why not with scales labeling autistic people? I also wonder why the American sample is set as the standard, so that when (and largely if) different countries remake one, it has to be listed as “revised”? I guess the answer here is that we need more diverse kids tested for autism in the first place. When they do, however, perhaps clinicians shouldn’t always consider that their loud and vibrant god cousins always call them “Ozoga”.1
* * *
Phew, done! That was so quick. Speaking of my god family, Aunt Nene was visiting from Cambridge, MA this weekend. My parents invited the O’Brian’s again and challenged both Ray and me to invite a friend from school. A tough feat for a girl who’s still trying to salvage that meltdown incident. I only had one friend who currently knew about my family and me, so I decided to just text B.
B: “Awesome. I was practicing some dance moves. Maybe your folks and friends can help me with it. They like to dance, right?”
Noa: “Or my fellow Ozogas,”
B: “You and your what?”
Noa: “Never mind.”
CHAPTER NINETEEN
Ray hurtled to Aunt Nene in his signature Teletubby style. Aunt Ohunene, or Aunt Nene, was the first one to arrive. She had a conference at the University of Toronto and decided to stop by for the afternoon before taking the bus up to Canada after our gathering. She specified those details to my mom when we went back-to-school shopping at the store a few weeks ago, but I couldn’t remember. Even though she’s not related, she’s still our favorite aunt. She tells us stories of Nigeria far more than my mother tells us stories of Sierra Leone. You would think that my mother didn’t have much to talk about through her secondary school years, but she always seems to share with Aunt Nene. She and my dad have remained great friends since meeting in graduate school. Their friendship makes me hopeful that I might have lasting friendships like that someday. One where I could have my potential children call my friends “aunt”.
“My son!” Aunt Nene said, arms outstretched. She had two bags full of gifts each dangling on one arm. She had a suitcase behind her from her flight from Boston, and my dad quickly picked it up and gave her a gentle hug with Ray enclosed.
“And my brother!” she exclaimed to my dad. “Oh, God bless you and your beautiful family.”
“God bless you too, Ma!” I exclaimed in the way my mom taught me years before. I love how much Aunt Nene stuck to her culture, especially for someone of her pedigree, going from Berkeley undergrad to MIT for grad school. She was always wearing beautiful Ankara and never tried to hide her thick Ebira accent. She sounded just like her mother, whom we met in Nigeria along with my god cousins back when I was six years old. She’s the exact opposite of my mother in this regard, who quickly traded in her Ankara for jeans, and now speaks in a mid-western accent that fits in even better here than my dad’s southern accent. Don’t get me wrong, my mom does love where she came from. While Aunt Nene keeps her culture on her body, my mother keeps her culture in her soul. It’s evident every time Aunt Nene’s around like this.
“God bless you more! Nene!” my mom said, hurtling towards Nene too in her more graceful fashion. They gave a tight, jumpy embrace. My mom had slight tears in her eyes. I realized it had been a couple of years since they had seen each other in person.
“How far now!” Nene said, reaching over to Ray who was still hugging her leg. It was Nigerian pidgin translation to “What’s up?” Ray beamed. Aunt Nene and my mom settled on the couch right as the doorbell rang. It was B.
My mom chuckled, “Noa, the other guests aren’t supposed to come until 1 pm for lunch.”
Whoops.
“Sorry, Mom. I thought you said 11 for all guests. I told B to come on time.”
My mom and Aunt Nene shrugged before continuing to talk. They both got up to meet my guest. Aunt Nene raised her eyebrows at both my mom and me suspiciously when she saw I let a B-word-type male figure enter the house. I smiled at B, encouraging him not to stress.
“Hi everyone, thank you for having me,” he said simply. Everyone smiled back politely without saying much else. “Um, I was one of Noa’s orientation leaders on the first day. We’re in Psychology Club and our new unnamed club together,” he added.
“Are you autistic too?” my dad asked, referring to our unnamed club.
“No, or at least I don’t think so,” B said, trying to make a joke, but it looked like he was becoming slightly nervous now.
His response was met with blank stares all around.
“There’s an autistic student in my Youth Group downtown. I hope I can learn from Noa and her colleagues how to be more friendly and respectful to him.” The adults nodded approvingly. I looked at B in shock, not knowing or at least not remembering this information. Maybe he was still talking to me on that walk back to school when I put Mozart on for the second half of the trip. I forgot.
We spent the next two hours on our five-seater couch in front of our unplugged TV. For comfort, Ray sat on the floor playing with his bioNickles, and B took another chair from one of my parent’s office rooms, forming the dreaded horseshoe. Luckily for me, this was the most loving horseshoe arrangement I could ever be in.
Aunt Nene asked B more about what his Youth Group was like. B chatted about the Youth Group so positively and vibrantly.
“Wow, how time flies. Do you guys remember that one guy at GCF? Who was it? He has a B-word name too,” Aunt Nene said, her extroversion coming out in full force.
“Brandon,”' my parents said at the same time, both rolling their eyes.
“My goodness,” my mom said. “What a jerk. Always acted like he was the only one going to Heaven because he evangelized 24/7. Lord knows when he ever slept.” It was the first time in a while I heard my mom refer to God like this. “You have to admit his research focus was cool. I mean, who goes from a bachelor’s in Theology at Liberty to a Ph.D. in Computer Science at MIT? Wonder what he’s up to today,” my mom said nostalgically.
Aunt Nene shifted on her space on the couch. “He’s actually at the conference I’m attending. He’s on the front page and all.” Aunt Nene proudly broke out the brochure of the project.
My mother laughed. “I see you’re still collecting conference brochures,” she said teasingly.
