Third Semester teaching an Autism Class at UC Berkeley

Autism DeCal at UC Berkeley

The DeCal is Up

Another exciting semester of teaching the 1:59 Autism Decal for the Spring 2020 semester. Looking forward to interacting with the 25 students enrolled in the class and the hearing from the guest speakers we have lined up. 

The weeks leading up to the start are hectic as we try to organize the speaker line up and the panels and the topics and material we will be teaching. 

https://drive.google.com/file/d/1TGHaMNI3SFH6wDxvfalDvhXZxoCP3C0D/view?usp=sharing

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Week 1

2/5: With fellow decal teachers - Juliana, Diana, Devina. Its good to have so many students interested in both attending and teaching the class. Like Julianna mentioned in class, it was nice for her to experience both ends - as a student and teacher. Devina was a student 2 semesters back and co-taught the class last semester. Julianna and Diana were students last semester.

With fellow student co-teachers Julianna, Diana and Devina

A very talkative and interesting group showed up this semester and participated with gusto in the icebreakers. It's gonna be a lively semester. 

Unlike previous semesters, we were not able to do the PollEv in the first class. There is no phone connection in this classroom as it is located on the 1st-floor basement of Moffit Library. 

So a word cloud was created on the board instead:-

"What word comes to mind when you hear the word autism"

Some of the responses were - Flow, Social Isolation, Sameness, Co-morbidity, Miscategorized, Communication Barrier, Specific Knowledge/Interests, Stigma

The class size Increases

Just heard, the class size is being increased to 30+ due to high demand!! I see 31 students enrolled in my CalCentral. It is kind of thrilling on many levels - that in some way I'm managing to make a small difference. And of course at a bigger level that societal awareness will increase - each new student will go onto being a snowdrop in the avalanche or autism inclusion. 

I love that we have such a wide range of majors - Applied Math/Integrative Biology, Architecture, Business Administration, Cognitive Science, Conserv and Resource Studies, Economics, Environmental Science, Linguistics, Political Science, Public Health, Sociology, and a few undeclared lower classmen. 

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Week2

2/12: We welcomed the new students who have joined the class and increased our class strength to 30. 

A student even emailed me after class today disappointed that the enrollment was now closed. The add/drop deadline is today and we were sent a reminder email about this by the Psych Dept Counselor, saying all class enrollments would be wrapped up today and all waitlists closed.

Our first guest speaker was Prof Clarissa Kripke of UCSF on Sensorimotor Issues. What an informative lecture and a real treat for the 30 students in the class. There was simply not enough time to cover all that she had to say. Students had questions for her even after the class had ended. 

The fire alarm went off in the middle of class as someone accidentally opened an emergency exit. It was an annoying droning sound that went for almost 10 mins. As you can imagine many of us autistics are extra sensitive to sound so if it was annoying to the NT students in the class, it had a multiplier effect on me. 

Prof. Kripke had some handouts for anyone interested: Clinical: Patient-Centered Care [Medical and Social Models of Disability], Advocacy Advice from Self-Advocates. What I Wish My Doctor Knew About [Me As a Person with Sensory Sensitivities], [Non-Traditional Communicators]. Training: Best Practices: Behavior Support. [First-Hand Perspectives on Behavioral Interventions for Autistic People]

One point which has been highlighted in my Disability Studies classes and discussed at the RadMad Disability Lab just last week was how many places in the campus had physical accessibility issues. Dr. Kripke also drew attention to how a wheelchair user would not be able to present in this class. 


This classroom has a stepped down auditorium type seating inside, leading down to the stage. You can get into the Moffit Library building and down to the 1st floor via elevator. But wheelchair user would have to stay back on the top row near the door of the classroom, they could not come down to the stage to present. That means that that a panelist I was going to invite to participate in our  ASD adult panel will not be able to as she is a wheelchair user!!

Rachel Kripke-Ludwig joined us in class today. Rachel goes to Open Mind School and points to a letterboard to communicate as she is a non-speaking autistic. It is good for the students to see all profiles of autism - how else will they understand what Autism is?

Feedback 

2/13: Got such lovely feedback from a student today: 

Hari, I just wanted to reach out and say thank you for the work you put into this decal. This is by far, the coolest class I have ever taken. I tell all my friends about how awesome this course is. I appreciate all of the hard work you put into it, and am eager to learn more.

Week 4 & 5 - ASD Panels

Our "Adults on the Spectrum" panels spoke of their lived experiences as an autistic. The class has so many varied and interesting questions for them.

1st ASD Adults Panel - Reid, Nate, Emma and David

2nd ASD Adult. Panel - Ari, Brazos, Brian and Esperanza

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Week 6 - Prof Steve Hinshaw

3/11: Another marvelous talk by Prof Steve Hinshaw at our Autism Decal class today on Stigma and Autism. In the last 2 semesters, (to my knowledge) at least 2 students have switched their major to Psychology, after hearing him speak at the 1:59 ASD class. Prof Hinshaw drew both on his own personal experiences as well as his work in the Mental Health, ADHD and Stigma fields.

Last week, the university was 'encouraging' classes be offered online and that became mandatory as of yesterday. We all received emails with different options to do online delivery and our team decided to go with ZoomPro as we thought that would be more interactive and work well for both our internal and external speakers. 

Of course we ran into glitches in getting the ZoomPro account set up - apparently the demand was huge from the faculty itself, and they had not taken into account that undergraduate student instructors would need ZoomPro too. Luckily our Psych dept advisor, was able to help us resolve this and we should be set with ZoomPro accounts for next week. For this week, Prof Hinshaw, who is the faculty sponsor for this class, graciously hosted the class using his faculty ZoomPro account. 

It certainly did feel different doing the class remotely. Still it went off pretty well I think.

Week 8 - Igor Silva

3/18: Igor Silva was the guest speaker at our Autism Decal class today to speak on "Autism as Superpower." Igor is a fellow autistic and international law student at Berkeley Law. Right off the bat, his passion for autism activism came through as he drew attention to the importance of political identity for the "autism movement", celebrated the accomplishments of autistics like Greta Thunberg and pointed out parallels to other movements like climate change, women's rights movement, LGBTQ movment etc.

I think the talk enabled the students in the class to think of autistics as beyond just a  group that faces mixed levels of everyday challenges with social-communication, sensory processing issues etc. 

And of course given our current online instruction due to the coronavirus, it was all via zoom. 

(Check out Igor's website https://igorpereira.com/)
 

Week 8 - Parent Panel

4/1: It's been an unsettling two weeks with the exponential growth curves of the coronavirus. We were back this week with a parent panel. Joining us were Christine, Denise, Nicole and Sarika to speak of the complex experiences of parenting autistic individuals, a task that does not end even in adulthood. We appreciate their being able to take the time in the middle of this pandemic which adds extra stressors not only for them but also in the care and mental health of the autistic member of their household. 

Here is a video of our parent panel and what they had to say

https://youtu.be/z_N7p9mHNvs

Week 9: Lecture/Discusion: Therapies/Interventions, Technology+Autism

Week 10: Lecture/Discussion: Disability Law, Autism+Covid, Careers in Autism

Week 11- Co-morbidities in Autism

Week 12 - Group Presentations on Representation of Autism in Media

Feedback about the class from Students - Thank you - this was an amazing class

This course has been one of the most eye-opening courses I have taken so far.

I wanted to give a big thank you to Hari and all of the facilitators. I try to take a decal every semester... This decal was very well run and educational, I feel like I learned more from it than any other decal I’ve taken at Cal.

After having been in several UC Berkeley psychology courses with Hari, and reading his writing in the Daily Cal and on his blog, I knew I wanted to take this course. I am so grateful to Hari, Devina, Juliana, and Diana for cultivating such a meaningful space for neurotypical and neurodivergent individuals alike—all of whom arrived in the classroom with a different relation to and understanding of autism—that left an enormous impact on me. From organizing thoughtful panels filled with amazing individuals (from college students to parents to professionals...all were remarkable!), to generating thought-provoking discussions on bCourses and in course assignments, to openly welcoming anonymous questions in every course, you all did a tremendous job at facilitating a class environment that was as comfortable as it was informative.... I am so honored to have been a part of this course—logging onto the Zoom calls and seeing each of your faces has been huge in not only my learning, but also my wellness. Each of you makes me feel so inspired, and I am fortunate to have been taught by you.

I enjoyed hearing Hari's inspirational story because it really reflects just how little society knows about ASD...

This course was such a fun addition to my semester,

Another aspect of the course I liked was that it was taught by a person with autism.  Hari could teach us about a particular topic while adding in his own experience, which made the class so much more interesting than typical psychology classes.

In this course, I learned many new things and got to see a whole new perspective as I didn’t know much about autism.

For any Cal student, I would definitely recommend this Decal. For me, this course was a blessing and helped me better understand what is autism.

This was the first class discussing disability studies that I’ve taken, and I loved it. I loved how so many facets of autism were covered. I loved the guest speakers, and the fact that autistic voices really shaped this class. The DeCal format made it so that the class was casual in the sense that there was less pressure on grades. Instead, there was emphasis on building community and providing space for discussion, led by facilitators who were knowledgeable, kind, and enthusiastic about the subject matter...Thank you for all of your hard work putting on one of the most memorable classes I will take at Cal and for a wonderful semester despite the unexpected circumstances...I am really thankful to have taken this course and am thankful for all the hard work put in by Hari and the Facilitators and everyone involved from even the beginnings of this course.

It was important for me to learn from Hari’s perspective (and many of the guests invited in) what It felt like to not be able to communicate thoughts and feelings...This was my first decal and this is my last semester at Berkeley. I’m very glad I took this class. I

I think that completing this decal has been deeply beneficial to me...Overall, this decal was a great success. The facilitators were incredibly supportive and passionate about the subject. There was no stress about grades. We were just there together to learn more about autism and the community it encompasses – from those on the spectrum to their friends and family. And we learned about this in the most successful way, through conversations with people whose lives were in some way connected to autism.

 I overall enjoyed the course and I hope this class and organization becomes huge. It deserves it entirely.

The course facilitators (Hari particularly) have worked extremely hard to get ASD community members to come share their research and experiences with a curious student body, and for that I am truly thankful…. I will certainly recommend this course to fellow students as ASD is a topic that needs to be shared not just with people interested in the topic, but with anyone passionate about changing the world

First off, I would like to express how grateful I am for this class...This class has opened my eyes to so many things...Hari specifically is one of my favorite things about this class. I am so honored to be in a class led by him. He is such an inspiration to me because I feel that people always want to put others down because they are different. But Hari is such an inspiration because he is pursuing a higher education degree while being nonverbal. It proves that just because someone may be nonverbal does not mean they lack the skills to communicate. Especially now with so much advanced technology, cases such as Hari’s should prove that with the proper tools, support system, and help, almost anything is possible. It is up to us to be more vocal about how we can further support the ASD community and create educational and honest dialogue that correctly re-introduces the public to ASD without creating any negative and untrue stereotypes. I can honestly say this class has changed my life. I feel so much more aware of what is going on around me having to do with ASD as well as any forms of disability. I am more conscious of language I may hear people use that is hurtful and derogatory and I will be able to correct others. I can only hope that with everything I have learned I will be able to inform others and create a less ignorant world. Thank you to Hari and the facilitators for putting together such an amazing course. I am honored to have been able to attend such an amazing class

This class has truly been a joy to take...Thank you so much to Hari for proving that it is possible to overcome many of the obstacles placed in your path...On a final note, I want to say that this class has been extremely eye-opening for me - someone who has had no previous experience with this subject. It has brought awareness to me and I have no doubt it will continue to do so in the future. I truly believe this class is an exceptional method to learning more about the spectrum

One main takeaway I value from this course is the falsity of the terms“higher-functioning” and “lower-functioning”. All of the presentations, readings, and panel demonstrated that these terms are not accurate ways of distinguishing people on the spectrum.We learned that being a person with autism who is non-verbal or who stims a lot, in no way means they are “lower-functioning” than a person with autism who is verbal or sits more still.This fact is something I really value. I think it is applicable to everyone and everything. Intelligence and capability is expressed differently in everyone...Thank you so much for a great semester.

I am so happy I took this decal because I have learned so much and it has opened my eyes to the different intersections of disabilities.

I am truly glad I took this class because Iseemed to have a pretty big paradigm shift. ..Another thing I learned from this class was the aspect of communication. Since my brother is verbal, I really only thought that there were two types of autistic people. One that is verbal and one that is nonverbal and unable to communicate at all. However, I learned that communication comes in all shapes and forms.From an iPad to a tapping system, people on the spectrum even if they are nonverbal may be able to communicate. And I think it is really important to empower those on the spectrum and give them the tools to allow them to do so.Instead of thinking that someone is unable to form an opinion for themselves we should try to stay out of their way as possible and just let them be because people on the spectrum are humans too.

Even though I had been exposed to autism my whole life, I feel like this is the first time Ihad my eyes opened.

This was a class that was much more eye opening than I initially thought it would be. As someone who did not have any prior knowledge about autism, I walked into my first class very clueless and unsure of what to expect. I am happy to say that by the end of the semester, I have learned a lot more about autism and can appreciate it much better...Overall, this was an amazing experience and I am glad that I decided to sign up for this class!

Thank you again for organizing such a great course and guide me through this wonderful journey to a new world! Hope I could make my contribution to help people with ASD enjoy a better life in the future

Having Hari as an instructor added to the course as someone with Autism; his personal experience and anecdotes personalized each lecture. .. I would gladly recommend this course to friends in the future .. I hope this course continues to grow in popularity as it has a lot of insight to offer our Cal community

Older Teaching Experiences

[Second Semester], [Teaching Splash@Berkeley], [First Semester]

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.  

Masking as an evolutionary advantage

What is Masking & Camouflaging

Masking and camouflaging are terms used to describe strategies autistics might employ to hide or minimize their autistic traits in social situations. These behaviors can include mimicking NT behaviors, suppressing stimming, or forcing oneself to make eye contact during conversations. 

It is often a coping strategy used by autistics to navigate social situations that can be overwhelming or challenging. It is a means to "fit-in" and also a question of basic safety for some, as the display of atypical behaviors can lead to aversive/negative reactions from others.  

There are subtle distinctions between the two terms.

• Masking refers to the conscious or unconscious effort to hide or suppress autistic traits or behaviors to fit into social situations. This can include copying social behaviors, hiding interests that might be deemed atypical, or suppressing feelings of discomfort in social settings.
• Camouflaging, while similar to masking, can sometimes be seen as a broader concept that includes masking as a subset. Camouflaging may involve more active efforts to construct a persona that is socially acceptable or to "pass" as neurotypical. This could involve learning and implementing specific social strategies, such as scripts for conversation or specific body language cues.

Consequences

• The effort to constantly hide one's true self can be exhausting and damaging to one's sense of identity and self-esteem (ie: more cognitive effort + more mental health issues). Can contribute to autistic burnout. 

Do only certain "type" of autistics engage in masking/camouflaging?

• No. Masking and Camouflaging is engaged in by autistics across the spectrum. 
• People with higher support needs very much try, but just may be "less adept" at pulling off camouflaging due to communication and sensory challenges. Everyone has the desire to be safe from potential negative consequences. For higher support needs autistics, it can come down to basic safety as the display of atypical behaviors can lead to negative reactions and consequences from others. eg: you can get thrown off a plane for displaying stims or you get additional security screenings at airports because you engage in some repetitive stims which cops may perceive as "suspicious."  

More common or effectively practiced by females.

While research shows both male and female autistics engage in masking/camouflaging, there is evidence to suggest that it might be more common or effectively practiced by females. 

Could Camouflaging be a contributing factor in the later dx in female autistics?

This difference has been proposed as one reason for under-dx or late dx in females.  Females might be better at hiding their autistic traits, leading to their struggles being overlooked or attributed to other factors.

In Prof Steve Hinshaw's class, I also learned that 'externalizing behaviors' is often more observable in boys from their first decade itself (eg: acting out, aggression, boisterous) - so they catch the boys early in terms of dx. In girls the externalizing behaviors become more observable in their second decade (eg: eating disorders, NSSI - non suicidal self injurious behaviors etc) - so catching them later. 

Can Camouflaging be an evolutionary advantage for females?

I think the idea that females are better at camouflaging as an evolutionary advantage is an intriguing hypothesis. The argument would be that this ability allows female autistics to better integrate into social groups, potentially providing benefits in terms of social integration. 

However, it's important to note the negative effects on mental health that come with having to continually engage (cognitive effort) in camouflaging.

When Masking/Camouflaging is layered onto Triple-Bind

I first heard of Triple-Bind in Professor Steve Hinshaw's class and immediately thought of how Masking would be layered on top of Triple-Bind

"Triple Bind," poses a multifaceted challenge for women (disabled or non-disabled), requiring them to navigate a complex labyrinth of societal expectations. Hinshaw's framework suggests that women are pressured to excel in traditionally male-dominated arenas, asserting themselves competitively and ambitiously. Concurrently, they are expected to embody the nurturing, demure qualities historically associated with femininity. Adding a third layer, women are also pressured to adhere to stringent standards of attractiveness and sexuality. This triadic set of expectations creates a near-impossible standard for women to live up to, encapsulating the pervasive societal pressures that contribute to stress, anxiety, and a multitude of other psychological burdens.

Autistic females, therefore, must navigate not only the stringent expectations laid out by the Triple Bind but also the added layer of disguising their neurodivergence (camouflaging) to blend into a world that predominantly values neurotypical behaviors.

A Disability Studies Perspective

Exploring the intersection of the Triple Bind and Masking/Camouflaging through the lens of Critical Disability studies and Crip Theory offers profound insights. These academic disciplines critique societal norms that marginalize those with disabilities, advocating for a broader, more inclusive definition of normalcy. They emphasize the value of diversity and challenge the structures that define disability as a deviation from an arbitrary norm. Queer Theory, in particular, enriches this analysis by highlighting how gender and sexuality norms intersect with disability, further complicating the social experiences of autistic women who may also identify as LGBTQ. By examining the experiences of autistic women in the context of these theories, we can uncover the systemic barriers that perpetuate exclusion and advocate for a society that celebrates rather than stigmatizes differences.

Psychological Measures 

The Camouflaging Autistic Traits Questionnaire (CAT-Q) was introduced in 2019 by Laura Hull and colleagues. It aims to quantify the effort and strategies employed by autistic individuals (particularly females or AFAB, assigned female at birth) to camouflage their autistic traits. It measures the discrepancy between the individual's natural autistic behaviors and the behaviors they exhibit in social contexts, essentially capturing the social coping strategies that are not naturally aligned with their intrinsic autistic characteristics.  A self-report  approach allows for the collection of subjective data on camouflaging behaviors, which are inherently internal and personal.

The questionnaire is divided into multiple items that assess various dimensions of camouflaging

• Masking: Efforts to hide autistic characteristics.
• Compensation: Strategies to offset difficulties in social situations (e.g., memorizing social scripts).
• Assimilation: Efforts to fit in with others by copying or mimicking non-autistic behaviors.

Research Citations

• Lai, M.C., Lombardo, M.V., Pasco, G., et al. (2011). A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS ONE, 6(6), e20835. This study provides insights into the behavioral patterns of adults with autism, including aspects that might relate to masking and camouflaging.
• Hull, L., Petrides, K.V., Allison, C., et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534. This article explores the concept of social camouflaging in adults with autism and discusses the implications for mental health.
• Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678–689. This study specifically addresses gender differences in social behaviors, including masking and camouflaging, among children with autism.
• Goodley, D. (2014). Dis/ability studies: Theorising disablism and ableism. Routledge.
• Hinshaw, S. (2009). The triple bind: Saving our teenage girls from today's pressures. Ballantine Books.
  

Related Posts

• Dont Cant Wont - Masking Camouflaging https://uniquelyhari.blogspot.com/2021/05/dcw.html

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.

Community Spotlight

https://www.facebook.com/photo/?fbid=1324643144411552&set=a.473050316237510

Spectrum: Autism at Cal

[Community Spotlight]

Our next spotlight is on Hari Srinivasan, who is Chair of our Education Committee for Spectrum: Autism at Cal.
Hari is a fierce advocate for autism and has also been the lead student instructor for the semester-long Autism DeCal course and writes about autism and disability for the Daily Cal. Hari is also on the board of the national autism advocacy organization, The Autistic Self Advocacy Network, ASAN. His wealth of knowledge, ideas, and experience has been integral in the growth of our organization.
A special thank you to Hari Srinivasan for his unique perspectives and wide support network; his significant contribution has allowed us to be where we are today

You can follow Hari on FB (Hari Srinivasan at Cal), Twitter (@harisri108), his articles in the Daily Cal (www.dailycal.org/author/haris/) or his blog uniquelyhari.blogspot.com.

“As a non-speaking autistic with significant other challenges that affect my daily life, I don't fit the traditional profile of the more put-together college going autistic. Today, I'm an undergraduate here at UC Berkeley majoring in Psychology and enjoying every moment of my interesting college experience which includes working at top notch research labs. So when I think of myself and about autism, the word that comes to mind is possibility, "Hari-as-possibility!" My road is uncharted for sure but without possibility there can be no opportunity. All of us, abled or disabled, want to be contributing members of society. So I hope to do much more in my life and continue to help others along the way.

This is my third semester as a student instructor for the autism course here at UC Berkeley. It has become an increasingly popular class with the initial class size of under 20 increasing to 25 and now to 30+. While acceptance of autism is still in its infancy, I am just so amazed, awed and encouraged by the students in the class each semester who want to expand their knowledge and perspectives on what autism is. My hope is that this will not only positively impact them in the way they come to view and interact with autistics in their future lives but also make them part of the solutions.

It was inevitable that I would be part of Spectrum:Autism at Cal here on campus, though I found out about the student organization only during my second semester, when I passed by the booth on Sproul Plaza. The experience has been very satisfying as the org has increasingly been working on increasing volunteering and community outreach and supporting local autism organizations in addition to raising campus awareness.”

Brian Liu

Thank you for everything you do Hari, and for being a great friend! You work so hard and have taught us so much

Debarshi Kundu

Thank you for being a fierce advocate for autism and autistic people, Hari!

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.