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.

Remote Instruction till semester end

 

Remote Instruction through semester end for all classes at UC Berkeley

The Women in My Life

Revisiting this article written exactly two years ago for International Women's Day.

https://www.dailycal.org/2018/03/08/women-in-life/

'The Women in My Life' is a tribute to the women in my life who gave that extra helping hand. 

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: The women in my life

My autism has meant that I’ve been surrounded by therapists for most of my life. As it so happens, the field of school education, counseling and therapy is often dominated by women. 

Thursday is International Women’s Day, so this column is a tribute to the amazing women in my life — especially one who literally turned my life around. 

Up until middle school, I was going nowhere and learning nothing. I was nonverbal and had no means to communicate. I was in a series of short-lived special education classrooms — teacher after teacher was eager to hand off the “difficult” autistic kid. 

I first met Janna Woods, with her purple hair and pink pants, when I was 13. It was chance when my parents attended a seminar and met Tyler Fihe, who was, at the time, a college-going and nonverbal autistic typer. Janna had been his therapist and, after meeting my parents, she came to work with me. 

Janna changed my life by teaching me to type and, as a result, communicate. She loosened that first brick in my Berlin Wall of Silence, and she helped the world see the person inside. 

As brick after brick was dismantled with one slow letter after another, thoughts poured out of me. I was able to have deep conversations with others for the first time in my life. I remember once telling Janna that typing had taken me from “personless” to “personhood,” and she replied that that was because communication is foundational. 

Janna encouraged me to do creative writing. She believed in me and my potential with a confidence that even I had ceased to have. She became my Angel Janna. 

With communication, I was able to enter the world of mainstream education. Janna trained other therapists to work with me and took me to weekly cognitive behavior therapy sessions to help me manage my emotions and anxieties. 

Janna gave me my first job: taking care of her huge dog when she went on vacation. I was thrilled that someone would actually entrust me with such responsibility and pay me for it as well.

She had insisted, even back then, that college was a definite possibility for me. Janna, you would be so proud to see me at UC Berkeley today. 

 

Unfortunately, Janna joined the angels above after fighting cancer two years back. She was too young to die. Janna helped many kids like me that the world had given up on by giving us a voice. 

We can’t underestimate what the women in our lives do for us — especially if they are not family members, with no vested interest. I’ve been fortunate to meet a few wonderful women who have given me an unexpected leg up or helped guide me along the unclear path of my autism journey. They have shown me compassion and empathy. They advocated for me, which a differently abled individual such as myself sorely needed. Most importantly, they have had faith in me. I am amazed and grateful. Janna was just the beginning. 

Cherie Azodi was the behavior therapist behind the dozen phrases that I am able to verbalize today — she would insist on having a conversation with me even if the phrases were rote. She did more than any speech therapist I’ve had ever managed. 

Cindy Riley first noticed me in a park as a toddler and brought her three kids over to my home every week for over eight years so that this young, autistic only child could socialize with his peers.

Viji Dilip is the founder of Access Braille, a nonprofit that supports literacy access for the visually challenged. She showed up out of the blue and made me the editor of a Braille periodical, which accompanies free Braille teaching kits distributed in many countries in Africa and Asia. Madhu Krishnan is a co-founder of Inclusive World, a nonprofit that provides training and volunteer opportunities for the differently abled population. These two women sent many interesting internships and projects my way. They made me feel that I too was a contributing member of society.

 

The college counselors from the Disabled Students’ Program are the enablers of my path to higher education. Their open attitude and faith is a wondrous and refreshing change from the days of my district’s special education teachers. 

All these women chose to believe in the possibility of individuals like me. All these women helped me build confidence and contribute to making the individual I am today. I want you to know that I truly appreciate and admire you, and I look forward to meeting many more such amazing women in my life.

A Growth Mindset - Reimagining the Possible @UCSF

I  presented at the UCSF CME-19th Annual Devt. Disabilities Conference for Health Professionals. Thanks, Dr Clarissa Kripke, for the opportunity.

 https://www.ucsfcme.com/2020/MOC20001/info.html
Conf Brochure

Atypical

 

Plainspeak. Plain Language Version

What "Atypical" Means in Autism

In autism, "atypical" means having behaviors or traits that are different from what most people without autism (neurotypicals) have. These different behaviors can include things like:

• Repetitive Movements: Doing the same movements over and over.
• Social Communication Challenges: Finding it hard to talk to and interact with other people.
• Sensory Sensitivities: Being very sensitive to lights, sounds, or other sensory inputs.
• Intense Interests: Having very strong interests in specific topics.

We use the word "atypical" because these behaviors are not common in people without autism. But it's important to remember that "atypical" doesn't mean bad. Autistic people have special strengths and abilities that are different but still important and valuable. Understanding these differences helps us support autistic people better and appreciate their unique contributions.

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Read more on Atypical: [PlainSpeak Version] [For the Academic/Scientific Audience], [A Simple Definition]

Daily Cal Weekender

Another Meeting this time in the Daily Cal courtyard 3/1

First meeting with Weekender Dept of the Daily Cal on 2/9.

Too windy to hold meeting out in the courtyard today. This is a large dept and there was barely any space inside the cubicles for all of us.  Next week new hires will be joining us as well.

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.

Birthday with Daily Cal Weekender

Birthday with the Weekender Dept of the Daily Cal at one of the student co-ops. 

GFCF Choc Double Layer Cake with

The evening ended with a family dinner in San Francisco

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.

Daily Cal Orientation

Every semester, the Daily Cal has a new staff orientation. The Hearst Annex A auditorium was packed. It is a very large organization with many departments all of which have to run in unison. 

This was a fun orientation starting off with a Kahoot about the Daily Cal.  I learn more about the Daily Cal at each orientation. 

Communication Conundrum

What exactly intelligence is indeed still nebulous. I think, In my article, I was trying to frame the idea in a way that my typical peers could understand it. so perhaps that influenced my phrasing at that time - I was so nervous during my first edit meeting. A better word may perhaps be an exhibition of cognition/understanding maybe - the world around us uses the explicit outward exhibition of this ability to judge and decide whether to open opportunities or gatekeep us. I learn more every day about autism itself in the wider world - I never knew for instance that I should be using the phrase non-speaking instead of not nonverbal at that time.

https://www.dailycal.org/2018/02/15/communication-conundrum/

In "Communication Conundrum" I address the importance of communication and presuming competence.

This is the first 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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THEME: The Person Inside

HEADLINE: Communication conundrum

What if you had no voice and no handwriting skills? What if your body was so disorganized that you couldn’t even do sign language or consistently point to what you wanted? What if there was no way for you to consistently communicate your thoughts and feelings to those around you? Would any of your needs be met, and would you be able to engage in any sort of meaningful social relationships and friendships?

For many nonverbal individuals with autism like me, this is our daily reality. It underlines the fact that communication is fundamental to society. 

Communication issues often mask intelligence in the autism population, affecting our inclusion in society. If you don’t have the ability to communicate effectively, you are hard-pressed to exhibit your intelligence. If you add body disorganization to the mix, you can’t consistently point to the right response among the set that the therapist places in front of you. After multiple incorrect responses, the therapist arrives at what seems like a logical conclusion: “This individual is incapable of learning.” 

This was my story until I turned 13. 

Learning to communicate through typing as a teen totally turned my life around. That was the start of my journey to UC Berkeley. With communication, I could exhibit that I was an intelligent individual who deserved access to the mainstream education that many of my neurotypical UC Berkeley peers have taken for granted all their lives.

 

A child that is perceived to be intelligent will automatically be placed in a stimulating classroom. A child who may be as intelligent but who is perceived to be incapable would be placed in a drastically different environment. The outcome for the former would be positive, while the outcome for the latter can only be frustration, often expressed in the form of maladaptive behaviors — which is a catch-22. Adding insult to injury, the latter is now labeled as both unintelligent and difficult. 

I was that difficult child acting out in frustration and dismay. 

The basic issue may be pure confusion over input and output systems. I believe that intelligence is an output issue, since you have to exhibit your intelligence to earn that label. But I learn at the same rate as my typical peers through observation and inference — in other words, my input systems are functioning fairly well. The mind of an autistic person can truly be a marvel, since we interact with our environment in rather unique ways, which lends unique perspectives. 

What differentiates us is our inability to exhibit those skills, especially if you are nonverbal like me. Nothing beats being able to talk. The speed and social opportunities it offers cannot be overstated. I find it frustratingly awkward to slowly type on a device while another person fidgets near me, not knowing whether to look at me or at my keyboard over my shoulder. 

The way I function in a social setting becomes so much more difficult when input systems are impaired. Think of it like static interference in internal signals — my mind may think one thing, but the signals get mangled in the motor task of carrying that out, be it through handwriting with my fingers or motor-planning speech with my mouth. We may end up smiling when we should be looking sad upon seeing someone fall. 

I am well aware of these deficits, which triggers parallel loops of anxiety, further worsening the signaling systems. Think about it: A typical student may get stressed during an interview and fumble as they attempt to retrieve information from their mind and formulate an elegant response. 

My every attempt at communication is like being under a stage spotlight — I get all nervous and start fumbling. My very attempt to effectively communicate may become a self-defeating prophecy further eroding my coping skills. Ironically, coping skills themselves are often tied to effective communication. 

If intelligence is thought to be an output issue, then we should not assume that an autistic individual is incapable of learning based on his mannerisms. Instead, the focus should be on improving communication skills while providing a stimulating environment. 

We autistics may yet surprise you, and we have a lot to contribute to society. I shouldn’t have had to wait for a chance meeting as a teen to lead me to communication. My special education teachers should have taught me typing instead of trying to restrict me to the dozen picture icons they decided I needed. Of course, other autism issues such as sensory dysregulation can make the act of typing itself hard. I am still a one-finger typer for the most part, and it took me a really long time to type out this one article.

Every day, I walk by the labs and research facilities on campus and I think, “Surely UC Berkeley can research a solution for us.” #InThisGen, I want to call on campus innovators to develop systems that make getting out what’s inside our heads easier, perhaps through the development of artificial intelligence or neural link technology. I want us all to help the world see the person inside.