A journalist on the autism spectrum, Emily Brooks writes to change perceptions of gender, sexuality, disability, and education. Emily currently writes from Brooklyn, New York, where she works with young people with autism and other disabilities. To read more work or get in touch, please visit www.emilybrooks.com.
By Emily Brooks
Recently I was volunteering at a disability-related event when I noticed that a fellow volunteer was taking particular interest in me.
Maybe she’s being friendly. Maybe she’s being nice, I thought, careful not to jump to any conclusions about whether she wanted to be friends. When you have social issues, when you misunderstand others’ intentions often, when you’re like me, you’ve got to be careful. I’ve learned to never be too careful when interpreting social information.
Her actions started out small: She’d approach me during the event, smile, and compliment me on my work. It seemed I was doing the same work as all of the other volunteers, though.
Then it became a bit more obtrusive. “How are you doing?” she asked.
“Good. You’re doing great, by the way.”
“Thanks, you too.” Whatever.
Next she approached me to give me the additional information. I felt I was under her watchful gaze.
At the end of the day, the special attention was grating on my last nerves. It made me feel like I was standing out, and I don’t like to stand out in new and unpredictable social scenes. “You did such a good job today, Emily!” she squealed. That’s when I noticed that she wasn’t saying that to anybody else. Perhaps she thought I needed more positive reinforcement for some reason? I participated in her small-talk ritual and then tried to leave.
“How are you getting home tonight?” she asked.
An innocent-enough question. Sometimes people like to walk to the subway station together here in New York City. “I’m taking the Q train to Brooklyn,” I said.
“Oh really? I’m going on the F to Queens,” she said, “which is the opposite direction. Or else I’d ride home with you. Are you going to be okay?”
“Yes, I’m fine. I do this all the time,” I said, my patience wearing thinner than the fabric on our matching volunteer t-shirts.
“Are you sure you’ll be all right?”
She’s being too nice. That’s not very nice. She’s singling me out. Why?
The answer came to me after I left, when I was on the Q-train ride, being as all right as anyone ever can be on New York public transit. She knew I was diagnosed on the autism spectrum, so she thought I needed special encouragement. She didn’t think I could be independent because I have ASD.
I wanted to rewind time and shout, “I have a job coordinating and facilitating programs! I transfer trains and buses and live in an apartment! I went to college! Who are you to judge me?”
Only through the lens of a diagnostic term was she judging me. She wasn’t listening to see if I asked for help—and I wasn’t. She wasn’t looking at my actions to see if I was struggling—and I wasn’t. But honestly, even if didn’t have a job a college diploma and live in an apartment, I still would have deserved more respect that I received that day. Even if I had asked for help—I do when I need it—or even if I had been having a hard time with my volunteer tasks, it wasn’t her place to judge me. She was just my peer, a special education teacher, a fellow volunteer. Yet she wasn’t presuming competence. And that’s what caused me to struggle, in the end, at that volunteer day. As I felt her watching me and got the distinct feeling she was supporting me more as her client than as she would any other acquaintance, I found myself anxious about protecting my volunteer job “territory.” That was my major frustration.
This is a small experience, and I have been privileged to not experience situations like this more often. But it is an experience that informs me in my own life, in my writing, and in my work with children and teenagers who are on the autism spectrum themselves. It is my belief that autistic people will be empowered when given the chance to empower themselves.
Of course there will be different types of support needed for those affected differently by autism, and I am not saying that every individual will meet—or want—the same goals, regardless of their autistic or nonautistic status. What I am saying is that the messages that my family, friends, and service providers give me are that I am competent and capable, and so I meet those expectations, especially when I have the support that I need. Low expectations lead to victim mentalities and helplessness, and high expectations lead to empowerment and action.
Hopefully, before the next time we work alongside each other, the volunteer will learn these lessons: The autism spectrum disorder label doesn’t define what we can and cannot do—people with autism are constantly defying predictions by being amazing humans, but ability should be expected, not a cause for surprise. Condescension brings everyone down, and no matter how nice or caring you feel, condescension doesn’t feel nice or caring on the other side. It’s often best to wait until we indicate that we need help than to jump in and make us feel incompetent. No matter “how autistic” somebody does or does not seem, it is not anybody’s place to judge them or take away their agency. Helping as many autistic people communicate these needs and desires is the future. And, finally, no matter how trained professionals are in working with people with autism spectrum disorders, those of us who live as autistic are the experts on what we need and want.