O Body Where Art Thou

In the Daily Californian, 2 years ago

https://www.dailycal.org/2018/04/19/o-body-where-art-thou/

The lack of Body Awareness or inability of the brain to form a Body Schema is a little known phenomenon in autism. I attempt to explain the neuroscience. 

This is the ninth of my series of 10 articles for my weekly opinion column "The Person Inside" for the Daily Californian. 

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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.  

Compulsion Complexity

Written for for the Daily Californian 

https://www.dailycal.org/2018/04/12/compulsion-complexity/

I explain the phenomenon of obsessive-compulsive and repetitive behaviors that can often accompany autism. 

This is the eighth of my series of 10 articles for my weekly opinion column "The Person Inside" for the Daily Californian. 

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Headline: Compulsion complexity 

I’m sitting in one of the smaller classrooms in Tolman Hall for a psychology discussion section. A student

walks in, and the door swings shut behind her. I’m pretty sure the door didn’t close properly, so I get up

and make sure it did. I repeat this action for the next student who walks in.

The class begins and Mike Dolsen, my GSI, starts speaking about the paper that is due in a few weeks.

Just at that moment, a third student walks through the door. I jump up to go fix the door. 

Two more students walk in. This time, Mike, who has been observing me, goes and shuts the door before I can get to it. Every time a student walks in after that, Mike makes sure the door is shut. 

Obsessive-compulsive behaviors is one of the comorbidities that many people with autism — like me — have to deal with. 

When most folks think of obsessive-compulsive behaviors, the first image that comes to their mind is of people washing their hands until they bleed. While compulsive behaviors don’t have to be that extreme, they can nevertheless be quite disruptive to the functioning of the person engaging in them.

Another example of this behavior in my case is how I react to the lint on people’s jackets. I am hard-pressed not to rapidly walk over and remove that piece of lint. Such an action of course would be viewed as highly inappropriate behavior, but all my thoughts are all aimed at that piece of lint.

Obsessions are the unwanted thoughts, and compulsions are the impulsive behaviors that occur in response to those thoughts. I, like many on the autism spectrum, have a laundry list of such obsessive-compulsive behaviors to suit every occasion. 

As a small child, I used to line up all my toys and building blocks in a perfectly straight line. My line had to be in the precise sequence of red, blue, green and yellow, with the black and white ones at the end. My line would stretch right across the room. 

The best way to tackle these compulsions is systematic repeated exposure in order to recondition your brain. It’s called exposure and response prevention. To tackle my lining-up behavior, my therapists would rearrange the color sequence or break my line, and I would not be allowed to go near to fix it. 

It’s kind of like what Amy Farrah Fowler attempts to do with Sheldon Cooper’s compulsion in the TV series “The Big Bang Theory.” Sheldon can’t stand an incomplete sentence or task, so Amy makes Sheldon watch as she intentionally exposes him to incomplete songs, activities and sentences. 

It’s terribly hard at first. Just like Sheldon, I would re-engage in the behaviors as soon as people’s backs were turned. Eventually, I came to accept that I should not obsessively engage in that specific behavior. 

The support of therapists and people around me was important — they monitor me and helped me transition. My therapists would only allow me to engage in these behaviors a certain number of times in order to help me reduce and fade the behavior. For example, I would be allowed to close the door three times before I had to stop.

Compulsive behaviors, however, are much easier to quash when the behavior is directed at objects. The availability of an object can be externally manipulated by a therapist. 

But it is harder to address behaviors that are more cerebral in nature or when the compulsion is in reaction to the behaviors of others in a public setting since we can’t control their behavior. People crossing their legs bothers me, but it’s inappropriate to attempt to straighten out their legs.

Engaging in these behaviors brings about a mixture of emotions. On one level, they are strangely comforting. It feels good to have something just right — a perfection of sorts. It’s the familiar sound of the click of the door as it shuts. It’s that jacket that’s untarnished by lint. 

At the same time, these behaviors are highly annoying, irritating and exhausting. My brain is well aware of this second obsessive track. Each time I repetitively engage in these behaviors, part of my brain stands aside and exasperatedly remarks, “Really, you gotta be kidding me!” or “Here we go again!” But that compulsion just overrides over any logical or intelligent thought. 

Increased anxiety is the end outcome as you struggle to cope with this set of conflicting emotions and this addiction. These parallel loops of anxiety may lead to other more dysfunctional autistic behaviors in turn, and even a meltdown. 

It could well be that obsessive-compulsive behaviors are coping reactions by us autistics to the world of chaos around us. These behaviors give me a subconscious but misguided feeling of control over my body and environment. But pushing myself to not engage in these compulsions gives me the real power here.

The Access Ramp to Volunteering

In the Daily Californian

https://www.dailycal.org/2018/04/05/access-ramp-volunteering/

Lives whether abled or (dis)abled have to be worth living. The importance of volunteering vs just being the recipient of volunteering for people with disabilities.

This is the 7th of my series of 10 articles for my weekly opinion column "The Person Inside" for the Daily Californian. 

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Headline: The access ramp to volunteering 

Entrée to volunteering

No matter our challenges, we all want to lead productive lives. We all want to be change-makers at some level. Part of this sense of accomplishment and satisfaction comes when we feel that someone else has benefited from something we have done. By volunteering, we enrich the lives of others. There are many intrinsic and extrinsic benefits to volunteering.

Most folks take the access ramp to volunteering for granted because volunteering is easily available to them. But being differently-abled puts a whole new light on this access. The fact of the matter is that people with disabilities are, more often than not, excluded from the arena of volunteering.

Disabled folks are often regarded as the recipients of volunteering rather than the providers of service. In the past, I’ve had myriad high schoolers spend their time with me, helping me through art and dance classes or playing basketball and video games. 

Many people traditionally think that volunteering requires social interaction skills and the ability to handle oneself physically well in face-to-face interactions. There are many nuances to volunteering — you may have to travel somewhere, meet people, explain, physically assist and have decent fine motor skills. 

Given my lack of verbal communication skills and my disorganized body, these requirements seemed like an impossible bar for me to meet. For the longest time, I wondered if individuals like me would ever get the experience of volunteering. 

Fortunately for me, I discovered that there are nontraditional ways that one can volunteer — I just needed to not be boxed into the mindset of the traditional skill set. So I drew upon my writing skills as a source of volunteering. 

During my high school years, I embarked on projects such as image description for Bookshare. Bookshare is a resource that converts textbooks into accessible formats for folks with print disabilities. I was part of the team that created a detailed description of the diagrams in these textbooks so that they too could be included in the audio format. I’ve also done other volunteering tasks, such as translating data-heavy field reports about the plight of the children of migrant brick-kiln workers into web-friendly content for a literary project. 

Volunteering in these nontraditional ways made me feel like I too am a contributing and productive member of society, no matter my disability status. 

I had expected to find more such opportunities when I joined UC Berkeley. After all, UC Berkeley is known for its activism and service organizations, so I assumed that there must be some role for me. A majority of the booths that line Sproul Plaza are aimed at service activity and actively seek student volunteers. I’ve even heard stories of students being overwhelmed by the number of flyers pushed on them as they walk down Sproul. 

Alas, I usually walk away from Sproul “flyer-less.” Apparently, the outward face of disability does not invite the receipt of flyers. A series of students walking in front of me are handed a flyer. But when I approach, the hand that is raised up to hand out flyers drops down to the side and the student very politely waits for me to walk past. 

I wonder whether there are subtle behaviors that precede the receipt of a flyer. Perhaps there is a certain level of eye contact, fleeting or otherwise, that takes place before a flyer is handed over. Making eye contact is not something that we autistics are known for. 

Likewise, when I walk up to a booth to inquire about volunteer opportunities, I am usually met with bemused or skeptical looks. The presumption is that I would not be able to do it anyway. 

At the end of the day, it’s not so much the flyer we seek — rather it’s the opportunity to make our small mark on society. 

I’m still trying to figure out how to get involved in volunteering at UC Berkeley and what my role could be. I am not the ideal person for the “clean-up-the-park” kind of physical volunteering, but there must be existing tasks or potential tasks that do not require body coordination and verbal skills. 

In the meantime, I’m trying to get involved in other ways. This semester, for example, I’m writing this column for The Daily Californian. An opinion column in a newspaper publication is not technically “volunteer” work. Nevertheless, I am excited at its reach in raising awareness about issues that differently-abled students like me face on a daily basis. If I have helped contribute toward improving the quality of life of even one other special-needs individual by changing attitudes of people around them, the effort on my part is totally worth it.

To the student handing out flyers on Sproul Plaza and manning the booths: Take a chance on the rest of us, even if we don’t fit the typical profile. Presume competence. There is actually a lot of untapped potential and new perspectives that can be gained when the differently-abled like me are involved and included in volunteering efforts too. 

First Transitions

Exactly 2 years ago

https://www.dailycal.org/2018/03/15/first-transitions/

In "First Transitions", I explain the rigidity and difficulty with transitions that can be characteristic of autism

This is the fourth of my series of 10 articles for my weekly opinion column "The Person Inside" for the Daily Californian. 

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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.

Sensory Walkabout

Two years ago  was the third of my series of 10 articles for my weekly opinion column on Autism ("The Person Inside") for the Daily Californian, 

 

https://www.dailycal.org/2018/03/01/sensory-walkabout/

In "Sensory Walkabout" I write about the way many of us autistics experience our environment in quite a different and quite "extra-ordinary" way. 

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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.

NonVerbal and College Bound

My second column on Autism in the Daily Californian 

https://www.dailycal.org/2018/02/22/nonverbal-and-college-bound/

In "Nonverbal and College Bound," I ask what does it take for a non-speaking autistic like me to access higher education. 

This is the second of my series of 10 articles for my weekly opinion column "The Person Inside" for the Daily Californian, where I speak of my lived experiences with autism. 

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Headline: Non Verbal and College Bound

SEO Headline: What does it take for an autistic student to survive college?

I took the other fork on the road in my journey to UC Berkeley. As a nonverbal autistic student, my road is not only less traveled by, but it is also fuzzy.

I had no idea how I would even survive university. Unlike my neurotypical peers, there were not many role models for me to follow on this road to higher education. 

Last summer was a very exciting time for me — I was admitted into all the UC schools I applied to. But students like me can’t just toddle off to any school, because we need strong support systems to help navigate our university life.   

When I was applying to the UC schools, I was aware that they all had a Disabled Students’ Program, or DSP  — but what exactly the program did was a veritable black box to me. So it was not without some apprehension and anxiety that I met with counselors in the program at a few of these UC schools as my acceptances started coming in. 

My meetings with the program counselors were encouraging on the surface. They seemed open to working with me. But I could see puzzlement in some of their eyes — I was a new type of differently abled student for them because of my atypical communication, sensory disorganization and impulsive body mannerisms. 

In fact, my good friend David Teplitz and I are the first nonverbal autistic students to join UC Berkeley, according to campus DSP Director Karen Neilson. We both type to communicate and have other similar sensory challenges. Needless to say, both of us are thrilled to be here and will not give up on creating shifts in attitude.

UC Berkeley had been my dream school for more reasons than the obvious ones, such as its world ranking and its top notch academic programs. UC Berkeley is also the birthplace of the disability rights movement. 

The movement was spearheaded by Ed Roberts, who was severely affected by polio. He challenged the system in the 1960s, paving the way for other physically challenged students and helping to establish DSP. The program was later expanded to include people with learning and intellectual disabilities. 

I sat down with Neilson on Feb. 9 to talk about the services on campus. I liked the program’s functional approach to disability, wherein disability is essentially anything that affects major life functions, be it a broken hand, a medical condition such as cancer or a learning disability such as autism. 

Disabled students are held to the same high academic standards as their typical peers, which means that they don’t get an easier or modified curriculum. But a student can, for example, get additional time for an assignment, although the number of papers has to be the same as for other students. The end goal of such DSP accommodations, as dictated by law, is to provide “access” to the educational environment.

Some of my academic accommodations include additional time for exams, use of a iPad (it’s my communication device), a laptop (I have no handwriting skills) and the use of specialized software such as MathType for my statistics and other math exams. I’m also given a notetaker for classes and allowed to take fewer courses every semester.

Neilson and I also spoke of the necessity to adapt services to suit the needs of the growing number of autistic students, as they do not fit the traditional mold of a disabled student. Neilson pointed out that many in the autism spectrum need more assistance with social skills, executive functioning and making friends. Traditionally, these issues are not thought of as accommodations, but these are essential to an autistic student’s success.  

There is now a newer subset of autistic students who are college-bound — the nonverbal and the sensorily disorganized autistics like me. 

While we nonverbal autistics are very much capable of meeting the highest of academic expectations, we present some unique needs with our atypical communication — such as the need for a communication partner or assistant to help keep us organized and navigate the campus — to be successful.

“Providing assistance to students with autism with communication and executive functioning is a must if we are to provide them with full access to Cal and to allow them to meet their full potential here,” Neilson said in an email.

We are, in Neilson’s words, challenging universities to think differently.  

I have found DSP at UC Berkeley very willing to listen and think innovatively, which is very encouraging. It’s a learning experience for both us autistics and DSP as we figure out how to move forward. Access and services at UC Berkeley has been shaped over the years by what its students have demanded of it. At the end of the day, the continuing inclusion and success of nonverbal autistic students may well rest on us refining what “access” means and what “accommodations” mean. 

You can be sure that students such as Teplitz and I will be part of the change we want to see. 

Hari Srinivasan writes the Thursday column on his experience as an non-verbal autistic student.