Names and identifying details have been changed.
Five months after I left my mom’s house and moved in with my aunt, I had to get a psych evaluation. It was one of many new things I had to face as I entered the foster care system.
My aunt took me to an office in a hospital, where a woman with pale skin and long dark hair did the psychological assessment. The test also measured my IQ.
The test asked strange questions like “the similarities between 2 and 7.” (Afterwards I looked it up: Apparently they’re both numbers.) She asked me to make shapes using blocks. She wrote down some of my answers on paper; others I entered on an iPad.
That test showed traits of autism, and I had to go back to take another test a few months later. It was the same doctor from the psych eval, which made me less nervous. She led me to a room alone, adjusted her laptop, and read some papers.
She asked about my friends and my interests and asked if I had “stims” or “sensory issues.” “Stims,” she explained, is short for “self-stimulating behaviors” and refers to repetitive movements. Sensory issues are sensitivities to sounds, textures, visuals, tastes, and smells.
I felt apprehensive, because I definitely have sensory issues. I cut the tags out of my clothes because I hate the feel of them on my skin. I hate the smell of incense, candles, Febreze, or anything else perfumed. I even hate the texture of the sand at the beach. And when she explained “stims,” I thought of how I wave my hands, walk in circles, and bite my nails when I’m bored, anxious, or excited. Doing those things calms me down.
Should I be honest? I didn’t want a diagnosis that some people associate with being stupid. But if I told the truth, maybe I would know why I feel different from other people.
Some of my closest friends and relatives have been diagnosed with autism or ADHD. It’s actually easier to be myself with those friends, because I’m not as worried if they understand me. I don’t judge them for being autistic: Knowing their diagnoses helps me understand them better. But I also know there’s a stigma.
I decided to be honest and told her about my sensory issues and my stims. When we were done talking, she took me back to my aunt in the waiting room.
My Sister and Me
Three weeks later, I still hadn’t gotten results. Our social worker was visiting, talking to my aunt about my sister Alexis. I half listened as I watched TikTok on my phone in the living room.
Then the social worker mentioned “Alexis’s autism diagnosis.”
“Alexis is autistic??”
“Yeah.”
I opened instagram and messaged my sister:
Alexis, you know you’re autistic???” the social worker lady came over and said that she got the paperwork already and is working to get you accommodations
Alexis typed back: yea i knew
Then I turned to the social worker. “What about me? Am I autistic?”
It felt like the tone in the room changed.
“Yes, you’re autistic.”
I didn’t know what to say. So I texted my best friend James that he was right. He’s autistic and always thought I might be too. He points out that I avoid eye contact and that bright lights and the feeling of sand bother me more than they bother other people.
I headed back to my room to digest this news. I knew James would accept me, but what about my other friends? I thought back to a recent conversation with my friend Sam. Sam makes friends easily, and I had tried to explain how hard socializing was for me.
“Not everyone can be a hivemind like you, dude,” I told him. When Sam’s talking to people, they seem to all understand each other in a way I don’t.
“Just be yourself,” Sam said.
“Tried that, didn’t work. People are more complicated than that. You always know what to do and what to say; I don’t.”
Usually, the more I try to relate to my peers, the less we seem to have in common. When I talk to people, they don’t try to keep the conversation going. I end up feeling left out and wonder why I’m trying.
Sam was trying to be encouraging. “It’s not that hard. I just say whatever. Just speak what’s on your mind.”
“I feel like I’m always messing up though, and it took a lot of work to be this. And that’s skill, not talent.” I spend a lot of time figuring out what makes me different, and changing those parts of myself by copying how other people respond.
Sam said, “You think too much, that’s all.”
“You think too little.”
As I pondered the diagnosis, I wondered if it was even true. It’s harder for me than for people like Sam, but I can talk. I join conversations. I have friends.
And if I was autistic, could I just be open about it like James is? He told me his diagnosis when we first met.
I couldn’t shake a feeling of fear, though. I had finally opened up to my friends about my mom’s violence, about being in the foster care system and having a social worker. And now I had a whole new secret burden.
Understanding Autism
I did some research and found out that “autism spectrum disorder” is a pretty new diagnosis that people are only just beginning to understand. It covers a big range of behaviors, but a few things in the official diagnosis resonated with me.
One of the criteria is “Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).”
“If who I am is autistic, should I be myself?”
I think I have this, and I don’t think of it as a problem. Taking the same route every morning means I know what to expect. I know how long the route takes and when I’ll arrive. When I tell my friends I eat the same food every day, they are confused. But why is it bad to eat your favorite food every day and never get tired of it?
I remembered how I fixated over the video games Minecraft, Arcane, and Steven Universe when I first discovered them. But I didn’t see what was wrong with staying excited about something I love doing.
Another part of the diagnosis that sounds like me: “Hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).”
I thought of how I hate certain smells and the feel of sand and of shirt tags on my skin.
The official definition also includes “deficits in social-emotional reciprocity”—in other words, a lack of empathy. I thought of my sister: When I’d tell Alexis about something painful, I often felt hurt that she seemed unsympathetic.
Instead of showing empathy, Alexis would say matter-of-factly, “You have to handle it.” Lots of times people can’t help you with a problem, but they usually say something to let you know that they wish they could and that they are sorry you are upset.
Alexis didn’t say those words, and it sometimes made me think she didn’t care about me. But knowing what I know now, I realize she did care. Even if she doesn’t show it in typical ways.
I also wondered if people think the same thing about me. I’ve been told I have a straightforward, blunt way of speaking, but maybe that’s just a nice way of saying people think I don’t care about their feelings.
The diagnosis felt like a weight lifted, because I didn’t have to wonder anymore. But it also made me feel afraid to be myself: If who I am is autistic, should I be myself?
A term I learned in my research was “masking”— a strategy autistic people use to seem non-autistic. It’s what I was trying to tell Sam about why being with people was so hard. Reading about masking reminded me how much time I spend worrying about what I say, how I say it, and what I do.
I consciously try to copy the people around me. I make sure I make enough eye contact, and I try to find the most discreet stims like biting my nails, tapping my foot, and subtly pulling my hair.
Circle of Trust
A month after the diagnosis, I decided to tell my friend Sam and my cousin Jackson when we were hanging out at McDonald’s with James.
“Guys.. I have something I wanna tell you.” I said slowly.
“What is it?” Sam asked.
“OK, so…” I paused and looked around. “Me and Alexis…” I paused again. “Diagnosed with autism.”
“THE BOTH OF YOU?!” Jackson said.
“Yea-’
“I KNEW IT!!”Jackson said.
Sam didn’t say anything, but I knew nothing had changed when he started making fun of me like usual. I was happy about their reaction. It gave me hope that people wouldn’t treat me differently because of the diagnosis. That I can be autistic and that people will still like me.
Mostly, I’m exhausted after I go outside and talk to classmates, teachers, and even friends. I expend so much energy masking. Right after the diagnosis, I thought I needed to spend more time away from everyone, but that only made me feel more alone. Now I spend more time with family and friends who either are autistic like James and Alexis or who treat me the same, like Sam and Jackson.
But I still worry about fitting in. James is my best friend, and I fully accept him, but that doesn’t mean the rest of the world does. Recently on the train, I watched him while he listened to music on Spotify. He listens to songs with his whole body: He shook his head and raised his hands and moved them around, like he was conducting the music and playing instruments.
I felt annoyed and embarrassed for him because he looked weird on the subway. I understand now that he’s stimming, and I think it’s great he’s so open about being autistic. But I worry about him getting bullied or targeted. I wonder if people would hire someone like James and if he’ll be able to make new friends in college.
We are very close, and I’ve told him about these worries.
“I don’t care,” James says. I wish I could not care that way, but I do.
I’m grateful that my closest friends have accepted my diagnosis, but, at least for now, I don’t think I want to tell more people I’m autistic. I don’t want people to think I’m immature, dumb, or a freak who can’t make friends. I want people to know me for me, not my autism. I feel like I should be as open as James is about being autistic, but I can mask more easily than he can, and that might be an easier way to live in a world like this.