The following essays were contributed by two individuals sharing their experiences of having a sibling on the autism spectrum. Both authors wished to remain anonymous.
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Loving Ben
It would be difficult to talk about my brother Ben without mentioning robots.
Some of my earliest memories of my older brother Ben include the two of us watching episodes or clips of “Robot Wars,” a TV show around the turn of the millennium. Put simply, the show revolves around tournament-style matches of 220-pound robots beating each other to pieces with various automated weapons: axes, spinning disks, flippers, and more. It was not uncommon to witness torn shreds of metal flying about, battery fires generating noxious smokescreens, or entire robots flung high into the air. I think you would be hard-pressed to find a young child who does not enjoy watching this kind of harmless destruction, and I was no exception.
We watched countless hours of this show: two brothers hunched next to one another by the computer or television. But it was always Ben who took the initiative to put on the next video or find the next episode. I was mildly interested in the show, but never enough to pursue its fandom independently, even as I grew old enough to do so. I always had an understanding that this was Ben’s hobby, not mine, and he was sharing his interest with me.
When I consider our relationship over time, I find this example helps to explain the dynamic between Ben and me. A conversation with Ben proceeds in much the same way: Ben will tell me about something he is interested in, and I will ask questions regarding various aspects of what he is telling me. This type of interaction is inherently one-sided, since I have little input on the course of this type of conversation. I find it especially difficult to ask questions if I have less interest in the subject at hand. He rarely asks me to talk about or describe the hobbies or subjects that interest me, and thus I find occasionally we have little to discuss, especially as our interests have diverged over the years.
On the other hand, sharing an interest with Ben is a pleasure I have learned to cherish. Not only is it an uncommon moment of connection, but anyone who knows Ben will understand his capacity to recall even the most obscure pieces of trivia. I am always pleased to discover we share an interest in some TV show or movie, as it means I get to hear Ben’s insightful perspective on the subject at hand. Perhaps I missed some overarching joke during the most recent episode of a TV show, or the significance of some object in the background of a movie we saw recently. I can always count on Ben to uncover and share these things with me. I believe part of having Ben as my brother means seeking these moments as often as possible and remaining patient during others.
I began to bring friends over more often as I grew older, especially in high school. As my father instilled a deep love of board-games in my brother and me, I would often teach my friends various games while sprawled out all together on the living room floor. We could be playing Boggle, Scrabble, cards, or a whole plethora of other games my father had taught us to play. Sometimes Ben would notice this and come sit down to play with us without asking. This was always a challenging situation for me. He was always pleasant to spend time with, and my friends knew he was on the spectrum, but I always felt awkward with him present. It was frustrating to have what I felt was an intrusion on my time I wanted to spend with my friends away from my family. How could I tell my older brother that I didn’t want to see him right then? I wish I had handled the situation differently; instead of feeling he disrupted the dynamic of spending time with my friends, it would have been valuable to discuss the concept of boundaries with him while I had friends over. But I wasn’t able to initiate such a conversation back then. To be honest, it would still be a difficult conversation today.
At the same time, this disregard for social boundaries and cues is one of the qualities I respect most about Ben. I find Ben to be one of the most dependable people I know. Ben is clear and direct in his communication. Whereas another person might hide behind half-answers of ambiguous commitment, ask Ben for a favor or a request and he will respond truthfully. This overwhelmingly forthcoming attitude takes some getting used to, but I am deeply impressed by his transparency during these types of interactions.
He also constantly seeks opportunities to be helpful. As an example, I can’t count the number of times over the years he has asked if I need help baking a dessert for some upcoming family gathering. I know I can count on him as a teammate, and as such I always look forward to when we can work together, regardless of the task, and I believe he does as well.
In the same vein, Ben is quick to provide advice or a solution to what he sees as a problem. Growing up, I was always happy to receive his advice. He was my older brother, after all, and older brothers know things that could help their younger brothers. What’s more, Ben is, frankly, just a really smart guy, so I find it wise to follow his guidance almost as a matter of course. He is ever-patient and has a gift for explaining the things he knows. Seldom does he ask me for advice, but that isn’t something I see as an issue. Personally, I just enjoy having a reason to talk together. Though my relationship with Ben is a little different from other sibling relationships, I am comfortable in the knowledge that Ben is someone I can always count on when I need it most. I look forward to how our relationship will develop as we grow into more prominent roles in our family. He would make such an excellent partner to plan a dinner party! Most importantly, he will always be my brother, and I wouldn’t change a single thing about him.
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A Sibling’s Reflections
INTRODUCTION
My experience as the younger sister of a person on the spectrum has always varied day-to-day, and shifts, changes and evolves as I continue to experience the world and practice self-reflection. Currently my thoughts are shaped by the research I am reading in my graduate program. I don’t know whether living with a person with a disability drove me towards studying education and neuroscience, but I wouldn’t rule it out. Some of what I’m sharing here is adapted from what I’ve written for class this summer.
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My brother’s Asperger’s diagnosis has framed my understanding of my own neurotypicality since I was a kid. My mom modeled Asperger’s to me by touching her fingertips on both hands together, showing the typical neurological connections in my brain. Then, she would slide one hand over, disconnecting the fingertip alignment, breaking the links to show the differences in my brother’s brain. This was truly an excellent visual for a child, but also one that sent me the message that at best, our brains work differently, and at worst, my typical brain gives me an advantage my brother doesn’t have, particularly in navigating social situations.
Some of the readings from this week hit a personal note for me. Even as a person with a family member who has ASD/Asperger’s, I realized I have been promoting and acting under a neurotypical bias my whole life. I have been saying my brother is different from me because he cannot navigate social situations, instead of saying we are different from each other and handle social situations differently. When he doesn’t understand social cues, is it because he doesn’t understand social cues or is it because people don’t know how to communicate in a way that works for him? These questions help us understand what a neurotypical bias is. How could I be so close to the situation and yet act, speak, and think in ways that might harm him?
Navigating this topic is also tricky for me, because to be honest, ASD has affected my own experiences in a lot of challenging ways, many of which I struggle to accept. I strive to be a fierce ally to the neuro-diverse community on behalf of my brother by advocating for my students’ diverse needs, like recognizing where sensory overload might be affecting their performance and behavior, where breaks and wait time might help them — especially since I’ve seen firsthand the challenges public education (and excellent special education programs, at that) pose for students with ASD and their families.
I feel guilty a lot of the time for not being able to appreciate my brother more. This was easier as a child. I looked up to him so much that all of his interests were interesting to me, too. He chose what shows we watched, what games we played, and I was happy to follow. We enjoyed sneakily watching TV together before my mom got home from work–one of few rules either of us ever broke, but a secret we shared. (Later, I found out my mom knew about it the whole time.)
Though children often struggle with the need for attention, my difficulty with accepting how much attention he gets didn’t really hit me until I was a young adult. When people say, “Wow, your brother has come so far, done so much, is traveling on his own,” (and he has! He is! And it IS amazing), I always want to say, “Yes, but remember when I studied abroad alone in a non-English speaking country for four months? That was hard too, and I did it seven years ago.” I always want to say, “Do you understand how hard it is to live on my own? To remember to buy trash bags and be sure the paper towels don’t run out? To plan and prepare every meal? Some days, getting out of bed and going to work and pursuing a graduate degree and navigating a pandemic is hard.” So to have people say “wow, your brother is doing so much” almost feels like a personal attack — because we all know I’m doing more — like I’m expected to succeed in the world as a neurotypical person, a world that is built for me; like my experience and challenges are so regular they don’t matter.
But even writing this makes me feel self-centered, ungrateful, and worse, like a bad sister. My brother is such a good person and cares about me so much. As an adult, I finally understand how he expresses this: buying me gifts for every birthday and holiday, sharing his latest projects with me, buying my favorite candy when I’m home.
One time when we were all kids, we went for a short hike as a family. As soon as we got toward the top of the peak, it began to storm. I was petrified of thunder and had a meltdown thinking we would get struck by lightning. I fell and hurt myself on the way down, rushing and careless and in a panic. When we got home, my brother apologized: “Sorry,” he said, “l knew it was going to rain. The ants were walking in straight lines, which means there’s a lot of moisture in the air. I should have said something.” That is how I know he cares about me. These things all matter to me and make me feel loved.
I wish we were closer. I wish I was more interested in the things he loves and could see those things through his eyes. I hope he knows that in education, I fight hard for my students to have their academic and social needs met because I know how hard it was for him. He has given me such a diverse perspective on the world with his ability to focus on the details of things. He has shown me what it means to face fears. I know he has done a lot, is doing a lot, and has come a long way. In the moments I can forget about my own challenges, I have great joy in celebrating his accomplishments. I even tell parents who have kids on the spectrum, ”My brother has it and he’s traveled on planes by himself!!” I hope he knows I AM proud, even when I struggle with how that all relates to me.
I don’t want to speak for all siblings of people with Asperger’s, because like our siblings, all of our experiences are different. But I will just leave you with the gentle advice to remember that even as neurotypical people, we face challenges too, and sometimes it’s nice to be recognized for that. It’s nice to be recognized that being a sibling of a person with a disability is a challenge in itself, and it’s hard to process, and it’s hard to remember all the times we’ve seen our siblings fail and get bullied and not understand why, and it’s hard to accept we can succeed because of the privileges our brains have given us and watch our family members struggle in ways we cannot conceptualize.
I guess sometimes I just need a little extra support, pride, love and attention too, so that I can be my best for my brother.