Headline: O body, where art thou?
My hands repeatedly go up to my face, down to the arms of the chair and then back to my lap. My leg and my body keep making small movements. The girl sitting next to me in the lecture hall looks askance at me several times because I appear to be constantly fidgeting.
The lecture begins, and the picture of the somatosensory map in the brain flashes on the screen, followed by other neuroscience concepts such as mirror neurons. My brain, ears and eyes all perk up in interest.
Even as I am sitting there listening to the lecture, my mind is busily trying to extrapolate the lecture material to what is currently known about the neuroscience of autism and how it plays out in my life every day, since I am an individual with autism.
I am especially intrigued by the body map that the brain forms of the different parts of the body in space and time. My mind tries to pull in strings of thought and form a web of understanding as I ponder whether this body map underlies many of the challenges we autistics face. By linking the neuroscience of autism with observations of my functioning, I am better able to understand my everyday challenges.
You see, for a subset of autistics like me, the brain is not able to form a proper map or body schematic. I can at times feel like parts of my body are missing and that I am not grounded.
My body adapts through movement. For example, the brain asks the hand where it is, and a connection is formed when the hand moves. The brain is now able to map the hand in its body schematic. But these connections are temporary, which means that if I sit absolutely still for too long in the lecture hall, I may just fall asleep. What other students see are the constant impulsive body movements.
I also tend to rely on vision a lot to help me know where my body is. When I see my leg, my brain registers its presence in my body map. I don’t like to close my eyes during the day because I may lose track of my body.
For my brain, it’s like looking at a fun house mirror that gives a very different image of you every time you look into it. The image in the mirror is what you are and not who you think you are.
I tend to use the presence of people around me to help keep my body space organized and keep me grounded. I would feel lost and helpless in a large room with no people. Touching someone or someone touching me even very lightly can help my body parts feel connected to each other and makes me feel grounded.
I think about the slide on mirror neurons from lecture. Mirror neurons in the brain activate when you see another person perform an action — it’s almost like you yourself were performing that action. Mirror neurons are thought to be linked to perception, language ability and even empathy.
Many professionals believe that there is a delay in the formation of mirror neurons in autistics like me. I wonder if that is because of my imperfect body map, since I am not able to repeat the same neural pathways as many times as non-autistics can.
I try to pull in more strings of neuroscience, such as apraxia, into this body map puzzle that I am pondering. Apraxia is the difficulty with complex purposeful movements needed for everyday life, such as speech. It is possible that my imperfect body schema contributes to the apraxias that I and many other autistics face.
I attempt to straighten out a string that’s been hanging loose on my web of understanding. It’s a catch-22 when you factor in sensory input from the environment. I believe that my sensory input from the environment has to be uniform to form a good body schematic. At the same time, I need to have a good body schematic to interact well with the environment. But I don’t have a good body map, so the sensory environment can be overwhelming and intense for me at times.
I leave my lecture that day feeling very contemplative as I walk down Oppenheimer Way. My web of understanding still feels somewhat incomplete. While I am excited at all the progress that has been made in understanding the neuroscience of autism, I can only hope that solutions will also follow soon — ones that will help us autistics have a better life.
Headline: First transitions
The first semester at a vast university such as UC Berkeley is hard for most students. We all fear the unknown, which brings about its own set of anxious thoughts. When you factor in my type of autism challenges, the process is even more nerve-racking.
We autistics fundamentally have difficulty with handling transitions. A transition is like a doorway: The other side is full of potential unknowns, and our unpredictable autism bodies may not cooperate with us even if we have crossed this doorway before. It’s the idea of change itself in addition to the actual change that comprises transition. The doorway latches on to our anxiety.
As a child, I really did have a problem entering a building or a classroom. Even now, I rush through physical doorways. The metaphorical doorways for me now are the transitions that occur in everyday life, at college, at home and especially during travel. Interactions with people, trying new food, navigating the campus walkways and buildings all involve crossing a doorway.
Last fall, a day before Golden Bear Orientation, or GBO, the Disabled Students’ Program, or DSP, had thoughtfully organized its own all-day event at Zellerbach Auditorium. But within half an hour of the program, I was completely overwhelmed at the thought of all the transitions I would potentially have to face. I rushed out and sat in the lobby for almost two hours before attempting to go back in.
GBO was a hectic eight-day program with events and discussions that often started at 9 a.m. and ended at 11 p.m. I was surprised that I was able to handle most of them as well as I did. I think what helped was that I was able to return to Zellerbach Auditorium that first day, even if I had to miss two hours, rather than give up and go home — that gave me confidence.
I had to stand in line outside Memorial Stadium for more than three hours on the first day of GBO, but I still went in. The incoming class was breaking the Guinness World Record for the largest human letter C. The systematic immersion at GBO helped prepare me for the semester.
Then came the first day of classes. I was in Psychology C19: “Drugs and the Brain,” which is a popular class — there must have been about 800 students in Wheeler Auditorium that day. I was a nervous lone figure right at the back, very close to the exit, ready to bolt anytime. But at the same time, part of me was absolutely thrilled to be there.
There is really no other way of handling transitions than systematic desensitization — repeatedly walking through the doorway and thinking through the steps before going in to reduce that unknown factor.
I sat in the same seat at the back of Wheeler Auditorium for nearly half the semester before moving up row by row. I made it all the way to the fourth row by the end of the semester.
I also realized that a large class offered lots of anonymity, which was a perfect cover for my offbeat autism mannerisms. There was enough ambient sound to cover any noise I was making. I actually ended up really liking Wheeler Auditorium. It is also quite thrilling to be learning in a classroom that held a Nobel Prize Ceremony.
The first semester of college was tough, with its innumerable transitions, and it took a lot of kickstarts to get me going. I had introduced myself to my professors via email but it took me more than half the semester before I physically made it to their office hours just to say “Hi.”
Taking anticipatory steps when possible really helped me. For instance, I worried about how a nonverbal individual like me would participate in a debate during one of my discussion sections. But I finally took on the role of delivering the opening statement for my team — that way, I could prepare ahead of time and let the text-speech app on my iPad be my voice.
My exams are at a different testing site and in a room that was unfamiliar to me. DSP Proctoring took note of my concern and let me preview the exact room at Moffitt Library a few days prior to my first midterm. They also made sure that I was given that same room for all my exams last semester.
Life is going to be full of transitions for us autistics. The only way to move forward is to proactively seek transitions.
This semester, I have sought new doorways — writing this opinion column for The Daily Californian, for example, also entails attending staff meetings and editing sessions. I hope I can continue to attempt more doorways and become more at ease in stepping outside my comfort zone.
Headline: Sensory walkabout
I have a rather curious relationship with my environment. You see, my particular brand of autism is accompanied by sensory dysregulation, which means that I often experience my environment in a different and quite extraordinary way.
A walk through Sproul Plaza is a testament to this unusual relationship. For many, Sproul Plaza is usually a fun and lively place to walk about.
Booths line either side of the Sproul walkway, promoting the various clubs and activities on campus. Musical groups on the steps of Sproul Hall, outside The Golden Bear café and under Sather Gate entertain passersby. A food delivery Kiwibot meanders through the crowd on a mission to feed a hungry student. Students protest near Sather Gate to make their voices heard. Vibrant energy rolls off the 200 or so chattering students milling around.
But my unregulated sensory system has a different take. I can hear conversations and music from near and far, except they are all at the same volume. I try, unsuccessfully, to filter through this deafening noise and focus on the music nearby. It’s like walking into a party and hearing all the conversations at once and being unable to focus on just one.
My senses cross over where my eyes can smell and feel, not just see. My eyes can feel the texture of the blue canvas that cover the booths. The white text on the blue canvas feels abrasive on the cool blue, and the canvas moves like a sine curve in the wind.
A student walks quickly by me, carrying a small blackboard easel. The words “Know your ...” are chalked on the board. I want to read but the rest is lost as she scurries right past.
The Kiwibot looks like a little dog — I want to touch it; I feel compelled to pet it. I reach down, but it just continues on. When I go behind it, it stops and simply stands there. I have a fleeting thought — did I just break the bot?
All these observations — and more — have happened in the space of less than a minute. Hundreds of minutiae flash through my senses.
I actually love the energy of Sproul Plaza. But my body is reeling and overwhelmed from trying to process it all. This kind of sensory bombardment is both exhausting and exciting for individuals like me, whose systems often struggle to cope with it.
For most people, the reliance on your sensory system for daily functioning is so automatic that you don’t even think about it. But most people have an inbuilt coping mechanism by way of filters. It requires some effort, but most of you are able to filter out noise and distractions so that you can focus on only what you want to see, hear or do.
But for people like me, these filters are less than efficient. Even the autism meltdown can be the result of sensory overload.
A sensorily disorganized body like mine comes up with its own set of coping mechanisms to drown out the sensory overload. These mannerisms are called “stims,” or “self-stimulatory behaviors” in autism. Flicking your fingers helps filter incoming lightwaves. Verbal noises can be an attempt to drown out external sound.
But stims that start off as a coping mechanism can also become habits that are hard to kick and look potentially inappropriate as we grow older.
What other students see is an individual who is constantly fidgeting, with an awkward gait and a bunch of offbeat mannerisms. I am aware of standing out, which adds to my anxiety and makes me appear to stim more.
The skin is the largest sensory organ in the body, so there is sensory input coming in literally from head to toe. It is both agony and ecstasy.
On the flip side, people like me pick up so many more cues compared to our typical peers, which makes our powers of observation that much more astute. The outward body may not exhibit it, but our minds are thinking, observing and inferring constantly.
Our atypical sensory system actually works to our advantage in the field of academics, especially in critical thinking and analytical skills. We have a lot to contribute to society since thinking out of the box is really second nature to us.
We notice things at the gross and subtle levels, even changes in energy levels. When we truly love something and are happy, we enjoy it at a different sensory level — to the point of bliss, at times. The rhythm of a waterfall can, for instance, touch the very soul. It is a heady sensation.
Even as I try to cope with a body that is often at odds with the environment, I also experience my environment in a most amazing and extraordinary way.