I Bite My Tongue
“They just got the official diagnosis.”
“Really? Poor thing. How’s her mom doing?”
“She’s taking it pretty rough I think.”
“That makes sense. I remember when we found out about my youngest. I just cried in the car for hours.”
This is the conversation that I overhear during my first week at my new teacher’s aide job. The two teachers I will be working with that year are discussing a student who has recently been diagnosed as autistic, but from their somber tone and hushed voices you’d think she’d just been given a cancer diagnosis. I want to ask them why this is such a tragedy. I’ve met the student they’re talking about. When she’s happy, she hums. When she’s stressed, she flaps her hands and rocks. She likes her personal space and will make it clear to you when she doesn’t want to be touched. At this preschool, they do little write-ups for the parents about skills their children are developing; sometimes they’re about fine motor skills or language development. Will her stims and behaviors be included when they write to her mom about how she communicates? My guess is probably not. Maybe if she were communicating verbally or using her hands to form the baby sign language that they teach the students. But her stims and hums and grunts are just quirks to them. Behaviors that will be considered less and less acceptable to society the older she gets. I suddenly find myself faced with the choice to disclose my own diagnosis or keep it to myself. I decide on the latter, a decision I will continue to make time and time again over the next three years working with children.
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This year I am moved to a different classroom based on some scheduling changes. I’m entering my third year of nursing school and I’m thankful to have a job that accommodates my schedule. I’m working with a new teacher named Lindsay that I don’t know very well. Despite my social anxiety, I really try to connect with her. I ask her questions and am met with one word answers. Any attempts I make to get to know her better are brushed off. Whenever we interact, I get that same bone-deep feeling of being disliked. Being a high-masking autistic person, I have developed a sixth sense for this sort of thing. Neurotypical people often can’t tell that I am autistic, especially when I’m actively masking, like I do at work. However, while they might not be able to identify that I’m neurodivergent, they can always tell that there is something a bit “off” about me. That makes them uncomfortable. It doesn’t matter that I studied their social cues like there was going to be an exam on it, and learned what I was supposed to say, how I was meant to react. So Lindsay didn’t like me, that's fine. One day she tells me she’s leaving early for a class she’s taking. I ask her what class. (I still try to make small talk with her, old habits die hard). She tells me she’s studying to be an ABA tech and suddenly a lot more things make sense.
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As someone who has worked in healthcare for five years, and is currently pursuing my Bachelor’s of Science in Nursing, I hear a lot of off-color remarks from nurses about autistic patients. I’ve begun to learn during my clinical rotation this semester that pediatric environments are certainly no exception. Pediatrics is one half of the Peds/OB semester, the semester of nursing school I have been looking forward to the most since I started. I wasn’t expecting it to remind me so much of my job at the daycare, or my time in high school for that matter. The nurse I am shadowing that day doesn’t seem thrilled to have a student, she’s even less thrilled when she gets a new patient assigned to her. “Low functioning autism,” she sighs, looking over his chart disapprovingly. “This is gonna be a long day.” I think about explaining to her that functioning labels are actually widely disliked by the autistic community (1); then I wonder if I should refer to the autistic community as my community or just leave that part out. By then, nearly a full minute has passed, which I think is probably beyond the socially acceptable time to mention something. I leave it be.
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The nurse that I am shadowing the day of my next obstetrics clinical seems really sweet. She’s the primary nurse for a patient that’s in for a scheduled C-section. The patient arrives and goes to change into her hospital gown in the bathroom, while I awkwardly stand around watching the nurse make small talk with her husband.
“What does your wife do for a living?” She asks him.
“She’s an ABA tech,” he responds. “Works with autistic kids.”
“Bless her,” the nurse says. She clasps her hands together and makes a little noise. She’s acting like he told her that his wife rescues orphaned kittens and not like she uses classical conditioning to train autistic kids into acting neurotypical. His wife comes out of the bathroom and I take her vitals. I wonder what she thinks she is doing when she goes to work every day. What does she think of her autistic clients? If she knew that I was autistic would she still be as happy to have me assisting in her care? When her son is born several hours later he doesn’t cry. The nurses quickly take him to the warmer and assess him, then bring him back to mom and dad. Still, he is silent. His parents are worried. I’m a little worried too. I’ve never seen a newborn so quiet. The nurse tells us he’s completely fine. Both his lungs sound good. He’s just not very talkative.
“He’s perfect, so beautiful,” his mom says; she’s staring at his tiny face, amazed. He continues to remain completely silent, apart from a sneeze, until we take them to the recovery unit and he gets his first shots. Then, we get to hear his cry. His parents seem relieved that he can make those noises. I think about how my brother, who is also autistic, didn’t speak until he was three. Then I think about how one in thirty-six boys (2) in the U.S is diagnosed with autism, and I hope that this baby is not one of them.
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Lindsay and that child’s mother clearly aren’t going into ABA work with malicious intent. I’m sure that they actually think they are doing a lot of good, helping autistic children and all that. But intent doesn’t really matter when the impact is so profound. Applied behavioral analysis or ABA is considered the “gold standard” for autism interventions. The goal, according to those who practice and promote it, is to increase behaviors that are helpful and decrease harmful behaviors. It utilizes positive reinforcement to discourage so-called problematic behaviors and encourage good ones. But who determines if a behavior is problematic? Who determines when an action is harmful or disruptive to learning? I’ll give you a hint, it’s not autistic people. At its core, ABA is centered around “correcting” behaviors that neurotypicals deem problematic. No thought is put into what these behaviors represent. It rewards autistic kids for conforming and punishes us for being different. It is centered around modifying behavior, not understanding what said behavior is trying to communicate (3).
I often wonder how much contact these people have with the autistic community outside of the children they work with. What happens when autistic children grow up and become autistic adults? ABA teaches children to mask, to stop stimming, to make eye contact and respond to social cues. It teaches us how to make ourselves palatable to neurotypical people, instead of encouraging us to continue developing our own communication skills in our own neurodivergent way. I think about these things every single time I’m accosted with an insensitive or downright offensive comment about a child with autism. Sometimes I feel like a hypocrite. I never had to go through ABA, thank goodness, but I still spend so much of my energy trying to convince neurotypical people that I am like them (even if most of the time it is pointless). I could say something but I never do. I never tell them that all those autistic children that they discuss as if there were something wrong with them are going to grow up into autistic adults who will have to unlearn all of that. I know because I’ve had to unlearn the terrible things I have been led to believe about myself and my community
I don’t know exactly why I keep quiet. I think part of it is the fear of being judged, this worry that others will think that my being autistic will somehow make me less capable of doing my job. I hold out hope that it won’t feel this way forever. After all, I used to mask all the time, not just at work or school, but even when I was hanging out with my friends or family. It had become second nature to me. Most of the time, I wasn’t even aware I was doing it. Then I got to college and I met other autistic people, became friends with them, and learned more about the community- my community. Bit by bit, I found myself unmasking. I stopped suppressing my tics and stims. I started using my fidget toys that I hadn’t touched since a classmate made fun of them in middle school.
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I’m playing “police tag” with my students at work, a game that involves me chasing after half a dozen or so preschoolers and trying to catch them while they pretend to be “bad guys” running away. I’m out of breath and stop to take a quick break when I feel someone grab my hand. I look down and see Rosie holding onto me. She’s a student in one of the other classes. All I really know about her is that she’s autistic and has a difficult time socializing with her peers due to her tendency to sometimes push and hit them. She usually spends most of recess being closely surveilled by one of her teachers. “Run?” she asks, tugging on my hand a little. She spends the next hour holding my hand and running with me while we chase down the other kids. When it’s time to go back inside her teacher comes up to me and tells me that she’s never seen Rosie play with any other teacher like that. “Rosie and I just get each other,” I say, smiling. It’s not the full truth, but it’s something.
Works Cited
Functioning Labels Harm Autistic People - Autistic self advocacy network. (2021, December 9). Autistic Self Advocacy Network.
https://autisticadvocacy.org/2021/12/functioning-labels-harm-autistic-people/
Data and Statistics on Autism Spectrum Disorder | CDC. (2024, January 10). Centers for Disease Control and Prevention.
https://www.cdc.gov/ncbddd/autism/data.html
What We Believe - Autistic Self Advocacy Network. (n.d.). Autistic Self Advocacy Network.
https://autisticadvocacy.org/about-asan/what-we-believe/
About the Author
Madeline Ferris (she/her)
I'm a junior in nursing school. I'm originally from California. When I graduate I'd like to be a pediatric nurse.