UN Panel for World Autism Day


I was on the panel for the United Nations observance of World Autism Day. Held on Apr 8 as Apr 2 coincided with Good Fricay. It is extra special to be on a UN Panel as my late grandpa used to work for the United Nations. This year the event focused on the right to employment with theme “Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.”

When: April 8, 10-11am EST
Topic: Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World
Recording of Event at: https://youtu.be/diZhgcTBPgk




My responses from the event


CV: Hari, How has the pandemic affected you?

Hello world. My late grandpa was a UN executive, so it's really extra special to be on this U N Panel today.

The pandemic has presented both challenges and opportunities for many autistics like me.

Many autistics have a hard time with uncertainty and the pandemic has been like the ultimate uncertainty. There is also the disorientation due to the sense of a loss of time with each day of zoom meetings looking exactly the same.

Worldwide there has been a surge in mental health issues; the anxiety is compounded in autistics and often manifests as upticks in obsessive and repetitive behaviors, meltdowns, sleep disturbances etc.

On the flip side, while I miss the buzzing energy and life of campus, it's actually been a fantastic year for me, and I'm involved in so many projects and conferences now. For instance I just got selected as a Haas Scholar at UC Berkeley where I will be doing a year long research on autism.

Remote learning via zoom, has been ironically equalizing. In a large lecture class, everyone is on mute, even students who can talk. Control of the camera puts me in charge of the amount of atypical body mannerisms that others get to notice.

Remote work also reduces a lot of the anxieties around the constant societal need for physical social interactions, eye contact, and trying not to draw attention to my atypical mannerisms; all of which takes up extra mental effort and energy. So I’m actually able to get a lot more done now.

I also love that we are now able to seamlessly interact with people from around the world without the anxiety of travel. I did not think I would get to hear perspectives from Africa or Ireland like today for instance.

In the post pandemic world. I would love to see hybrid solutions for autistics so we get the advantages of both the remote and physical environments.

CV: Hari, Do you feel the pandemic has exposed discrimination against autistic individuals?

The pandemic exposed systemic flaws in societal attitudes. One is the lip service that was paid to accessibility in the pre pandemic world. For years the disability community has been asking for remote work or hybrid solutions as many faced access barriers in education and the workplace. We were told remote work was impossible. Yet it suddenly became possible overnight when there was a will for it. We can only hope that such benefits will continue in the post pandemic world with the virtual workplace the norm for many companies.

But we need to watch for a couple of issues. Who will decide who gets to work remotely and who does not?. Will the disabled community continue to be less protected?. And also that remote work will not result in greater isolation for the disabled community.

Some of us autistics benefited from zoom education but what has been troubling is that while regular education was able to transition to remote learning, hands on special education services abruptly stopped. Remote education or tele therapy did not work for many who need that physical one on one support and have other needs.

The disproportionate access to services meant that many autistics faced regression in skills that take time to build up like building independence in the community.

Adult autistics living in group residential settings were at higher risk for the spread of covid as well as medical rationing.

This is just a small list actually.

CV: And Hari, How do you think virtual job interviews during a pandemic affects autistic jobseekers??

Interviewers often form impressions of you in the first few minutes. Much as we would like to pretend otherwise, there is a certain societal expectation of the body language of a candidate. So I’m trying to gauge their mood, body language on top of worrying about my own atypical body mannerisms, eye contact and other sensory stimulation. There is a lot of mental and physical effort going into these extraneous things.

So virtual interviews could actually be a blessing in disguise. There is more control. A familiar physical space, the chair at the right height and you can position yourself and get comfortable well before the interview starts. Somehow the behavioral expectations are far less in the virtual world which means there is less mental effort. Virtual interviews are also more amenable to scripting which many autistics rely on. So I hope virtual interviews continue in the post pandemic world.

There is another thing I want to add on the topic of employment. It is disappointing that many diversity hiring initiatives by employers have only certain profiles of autistics in mind. We need to think about employment and accommodations for all autistics who want to work, irrespective of their communication levels and support needs. So that is why it's important that we start having these conversations not just in the US but around the world.

Tech rehearsal 







I'm a Haas Scholar

I'm a Haas Scholar. Only 20 students are selected each year, so rather thrilled. Which means I get mentorship and funding to do my own independent research for a whole year.  This will also be my senior honors research thesis for my Psychology Major. 

 The last few weeks have been spent in getting my Human Subjects Protocol approved by the Institutional Review Board, I'm glad it did not go beyond one round of revisions.  

 I can move onto my next phase of tightening up my design and then participant recruitment.

 
 
 

 
More about the Program from hsp.berkeley.edu
 
"The Haas Scholars Program was founded in 1997 through the generous vision of Robert and Colleen Haas. Each year, twenty highly qualified, academically talented undergraduates... come together to build a supportive intellectual community during their final year at UC-Berkeley. Haas Scholars come from all walks of life and every major on campus, but they are united by their desire to strive for excellence–both in their individual academic pursuits, and as an interdisciplinary cohort...
 
Applicants are evaluated primarily on the merit and originality of their proposal for an independent research or creative project that will serve as the basis for a senior or honors thesis. Once selected, Haas Scholars receive close mentoring from members of the UC-Berkeley faculty, seminars and workshops to assist them in the research and writing process, the opportunity to present their work at a professional conference...

Haas Scholar alumni have gone on to become leaders in their respective fields, including academia, medicine, law, industry, the arts, and public service."

Banana Leaf Lunching



Warm delicious Paati samayal (grandma's cooking) on a freshly cut banana leaf from the garden.

Eating traditional style on an organic, eco-friendly, biodegradable plate with extra nutrition thrown in.

Extra nutrition? Polyphenols (think micronutrients in plant based foods packed with antioxidants) in the banana leaves get stimulated from the warmth of the food and get absorbed into the food along with Ascorbic Acid, Citric Acid, Ca and Carotene in Banana Leaves. 

Can I get a banana leaf every meal?

Eating with fingers? Its a natural exercise and builds dexterity for the fingers and the hand (kind of useful for someone like me actually with poor fine motor skills). It's slows down eating and brings about greater awareness of texture and taste, a.k.a mindful eating. 

And isn't seeking sensory experiences an autistic thing? LOL Using silverware actually lends to faster eating. 

Faster eating is linked to Type 2 Diabetics. Silverware actually lends to faster eating.

Ayurveda says nerve endings on the fingers stimulate digestion and improves blood circulation. Incorporating the five elements represented by the fingers - starting with thumb - space, air, fire, water, earth - is holistic eating. Somehow the Colonial legacy has meant that such indigenous cultural practices were frowned upon. That such things were "inferior" and made you "less than"

This sound familiar? - that the disabled mind-body is somehow "less than"

Image Description: Young male of South Indian origin eating food served on banana leaf. Also seated at the dining table is his grandpa with his grandma serving them food.

#PaatiSamayal #GrandmaCooking #EatingOnBananaLeaf




 

Boundaries

 Boundaries

Lady Liberty beckons

All to gaze at the wall in Nogales

brave hidden water in the blazing sands.

Nature weaponized!!

Boundaries


Arbitrary line drawn in world geography

Geomorphology gone extinct

Political land redistricting 1848

Human and nonhuman alike


Othering 

.. the BIPOC body

...the disabled body

...nonhuman bodies when it suits power needs. 

Nature exploited for supremacy


Categorize and disconnect. 

Who decides?

Who gets Agency?

Binary, privilege v. pain. 


The migrant body, a physical wall

The disabled body, a societal wall

Ever at edge of resources and land 

Land is belonging and body

Deemed purposeless, cast aside


Inaccessibility, the ultimate price

Periphery. 


(written during one my Disability Studies courses @UC Berkeley)


Nungu Time


Chewing into delicious water-filled Nungu's

Nungu in Tamil, the Palmyra palm fruit is a wonderful dehydrater for the 99F heat of Chennai, packed with  Vit A, B7, C, K, Fe, Na and minerals. 

I have absolutely no idea why the Brits wanted to call a Palm fruit as Ice Apple. This is not a fruit I would associate with an "Apple" on any level. 



Research on Accessibility

 

Attention: Students/ Faculty/Alumnus of Berkeley who identifies as a disabled person

Our unique makerspace Disability Lab is doing a research project on accessibility.

If you are interested in participating, please contact
everett_wool@berkeley.edu or (818) 450-6743

www.disabilitylab.berkeley.edu

Centenarian Plus

 Still comfortable after a century.

Sitting on a centenarian spinning wood chair, from 1920 - belonged to my great grandpa, Sadagopan Iyengar.
From 1920 to 2021 - that's centenarian plus 

 

 



Triple Bind and Masking in Autistic Females





The concept of the "Triple Bind," as discussed by Stephen Hinshaw, poses a multifaceted challenge for women, 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 (Hinshaw, 2009). 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.

For autistic females, these societal pressures are compounded through the phenomenon of masking or camouflaging. Masking refers to the efforts individuals on the spectrum make, either consciously or unconsciously, to conceal their autistic traits and adhere to neurotypical norms. This can involve mimicking social interactions, suppressing stimming (self-stimulatory behaviors), or forcing oneself to maintain eye contact during conversations (Hull et al., 2017). Autistic women, therefore, must navigate not only the stringent expectations laid out by the Triple Bind but also the added layer of disguising their neurodivergence to blend into a world that predominantly values neurotypical behaviors.

The practice of masking, while a means to facilitate social integration, exacts a significant psychological toll. It can lead to feelings of alienation, increased susceptibility to mental health issues, and the exhaustion that comes from the perpetual performance of neurotypicality (Lai et al., 2011). For women, who are already disproportionately affected by the Triple Bind, the requirement to mask autistic traits intensifies their burden, magnifying the challenges they face in their daily lives.

Exploring the intersection of the Triple Bind and masking 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 (Goodley, 2014). 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 difference. We can challenge and dismantle the societal constructs that marginalize those who diverge from the so-called norm, paving the way for a more equitable and understanding world.

References
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.
Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., & Mandy, W. (2017). "Putting on My Best Normal": Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534.
Lai, M.-C., Lombardo, M. V., Pasco, G., Ruigrok, A. N. V., Wheelwright, S. J., Sadek, S. A., ... & Baron-Cohen, S. (2011). A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLOS ONE, 12(6), e0177835.

Office of Accessibility & Disability Services - University of Maryland, Baltimore County

Post by Univ of Maryland, Baltimore County, where I'm mentioned

https://my3.my.umbc.edu/groups/accessibility/posts/100498


April is known as Autism Awareness Month, including April 2 as World Autism Awareness Day (link).   In listening to many within the Autism community - there is a call for media to move from using awareness to “acceptance” this year to foster change and inclusivity for those affected by autism – read more about it from the Autism Society here.  Information on What is Autism is linked here.

People of all identities around the world live, go to school and go to work with the neurodiversity that Autism brings to a world, often with struggle and difficulty. UMBC's students, faculty, staff, and visitors have this neurodiversity as well.  While many learn and work well with best practices and accessible design,  students (both undergraduate and graduate), as well as faculty and staff who experience disability with a diagnosed health condition (which includes autism) may seek accommodations through Student Disability Services (link) for academic programs, as well as work-related accommodations via Accessibility & Disability Services

UMBC is not unique with inclusion, accessibility and accommodation of people with autism on the job- some employers have specialized programs including Freddie Mac (link)Microsoft (link), as well as Ernst & Young, in addition to requesting job accommodations generally. Symone, an adult with autism, was interviewed by Ask a Manager’s Alison Green about her work experience at a majority-autistic company (link) and reviews several modifications to the hiring process that provide disability-friendly solutions for Autistic job seekers.

Other Autistic adults share their stories:


Research on Autism is ongoing, such as what Wendy Chung explains here (link), however, like most people. those who have been diagnosed or identify as Autistic* are seeking dignity, understanding, respect and inclusion within their families, schools, workplace and community - not a "cure".  Take a journey with Steve Silberman to learn of The Forgotten History of Autism. He went on to write NeuroTribes: The Legacy of Autism and the Future of Neurodiversity - the future is inclusive of Autism Women & Non-Binary Network and the voices within All The Weight of Our Dreams: On Living with Racialized Autism.

For more reading - there are many, many books (memoirs, non-fiction and fiction) by Actually Autistic authors (link).  Most recently the 28 essays within Sincerely, Your Autistic Child share insight for parents and those who love Autistic children from those with lived experience. 

Additional Autism-focused media include:  Everything's Going to Be Okay, Please Stand By, My Name is Khan, Temple Grandin, The Imitation Game, A Brilliant Young Mind, Rain Man, Ocean Heaven, The Lighthouse of Orcas, Marathon, Extremely Loud and Incredibly Close, Atypical, Autism in Love, The Horse Boy, as well as Life, Animated.  Many are available through UMBC's library and public library options.

*The Autistic community is not a monolith  - it's important to respect how people individually self-identify.


IRB Approval for my awe research study



 

#TwitterVoices - Twitter and the Disability Community


I was a Panelist at a memorable Twitter event to amplify disability voices & issues along with Leroy Moore, @AliceWong Jordyn Zimmerman Antoine Hunter @DaniellePerez Tinu Abayomi-Paul @DustinGibson @JohnnieJae Mark Travis Rivera Moderated by @GodIsRivera with "Tweeps" (Twitter employees) Q&A on accessibility@Twitter.
 
At every event I find myself learning more and more about issues faced by the disability community which motivates me some more to be part of that change we want to see. I get to both contribute and learn. And it was so nice to have Accessibility conversations with (rather than for) Disabled Folks. 

#contributeandlearn #DisabilityAccess


 My responses as their is no recording of the event.

  • Who are you?
  • What are you up to and how are you using Twitter to do it?
  • What are key takeaways from your work, you want this group to know.

My response.

Thank you Twitter. Hi everyone. I’m Hari Srinivasan. I'm a college age male of Indian American origin with brown skin. He,pronoun. I have short black hair, wearing a blue shirt with the word berkeley on it and a cap with Go Bears on it. My current workspace has a blank blue wall behind me.

I'm a non speaking autistic. I am on the ASAN board and Council of Autistic Advisors for Autism Society. And coolest of all for me, I was featured on President Obama’s Instagram on the occasion of the 30th anniversary of the Americans with Disabilities Act.

At U C Berkeley, I’m Phi Beta Kappa, major psychology. minor in disability studies. This is my fifth semester as a student instructor for a semester long class on autism which I enjoy so much. I just got selected into the prestigious Haas Scholars at Berkeley and I will be using Twitter to recruit participants for my research on autism.

I got introduced to twitter when I joined the Daily Californian as a student journalist. Many of my articles have centered around disability. My article in the amazing Alice Wong’s Disability Visibility Project, with excerpts in Listen, got quite a bit of coverage on twitter. Twitter definitely helped amplify the message on media representation.

I help manage 3 other twitter accounts besides my personal one.

One twitter is that of the Berkeley Disabled Students which works on a lot of accessibility issues on campus.

Another twitter is the UC Berkeley Disability Lab which is a unique maker space lab hacking low cost accessibility solutions for the disability community. I’m a research assistant and head Team Propaganda. Our projects are directly based on input from the community.

A third twitter is Spectrum At Cal and I'm its first non speaking autistic president. We have harnessed the power of the virtual this academic year to create virtual volunteering and several outreach events. In fact we are rebranding from Autism Acceptance to Autistics Belong. A video tweet by Doha Debates in December where I talk about Belonging got quite a lot of coverage worldwide.

I am involved in a number of parallel projects but I do find time for some light fun too including writing poetry and connect with others through social media. LOL.

I truly believe that social media like Twitter can be powerful tools in spreading positive messaging and thus become game changers for our community in terms of opportunity inclusion and belonging.

If there is one key takeaway about what drives me and my work, it's my dream and yearning towards Belonging for non speakers, for all autistics, for all the disability community. I would like the audience to think beyond Acceptance and Inclusion towards Belonging.  







Frist Center Webinar on Media Representation

 


I got to be part of this panel on Autism + Representation organized by Vanderbilt University's Frist Center for Autism & Innovation.

My Responses


Introduction

I’m Hari. I used the He, Him pronouns. I'm a minimally speaking autistic. I was diagnosed at age 3 and my autism is very very visible which presents its own set of issues. At U C Berkeley, I’m a major in Psychology and minor in disability studies. Incidentally I notice my co-panelists have ADHD and I actually have that formal diagnosis too. The doctor pretty much gave me a dual diagnosis that time itself. I have so many things going on as well like oral motor apraxia, body schema, sensory regulation, social anxiety etc.

I’m currently visiting my grandpa in India so this is a new workspace for me with a big light just behind me. Hopefully you all can see me.

I am many things I think, scholar, writer, activist, philosopher, and poet. I’m a student journalist at the Daily Californian, research assistant at the Psychology labs and the UC Berkeley Disability lab which is this unique makerspace lab. This is my fifth semester as a student instructor for a semester long class on autism. I’m the first non speaking autistic president of Spectrum At Cal, which is the student campus org for autism. I am on the ASAN board, and Council of Autistic Advisors for Autism Society of America. I'm involved in a number of other parallel projects from academic to policy. And I do a lot of creative writing including maybe around 200 poems.

Why am I here today? 
So i wrote this really long article for Alice Wong’s disability visibility project in Feb on this very topic which got a lot of coverage. So I have a strong feeling that’s why I am on this panel today. LOL


Examples of representation you have grown up with.

I think at the time of my diagnosis, my folks were asked if they had seen Rain Man to acquaint them with what autism even was. So I overheard about Rain Man a lot when I was young. Others I can think of outside of documentaries and in the fiction arena are Forrest Gump, What’s Eating Gilbert Grape, I am Sam, Big Bang Theory, Imitation Game, and the Good Doctor. Of late there has been Pixar’s loop, The Accountant etc. And I recently saw Pixar’s Float which while it does not say autism, so spoke to me.

To address what you said Claire earlier about some show characters not given a formal diagnosis is probably intentional as then the writers don’t have to feel like they are boxed into what the character is allowed to do.


On Representation

On representation, There are 2 parts to representation that Judy Heumann talks about in her white paper for the Ford Foundation. If you haven’t read it, I would highly recommend it. So it's both authentic representation and positive representation. So let's break that down.

Let's talk about the positive representation part first and I will give you four examples.

A classic example is that most stories with a non speaker almost always are about the non speaking autistic having a meltdown as that is sensational and provides lots of drama, trauma, and entertainment value. My question is surely there is more to the non speaking individual than a series of tantrums. This is the case in Sia’s movie too. There are multiple times where the character of Music has meltdowns and people even sit on her as that is how they get to control her. So what is the message being transmitted about non speaking autistics to the community? That they are some sort of wild beasts to be controlled, to be sat on.

The second of course is the use of restraints. When a movie gets a Golden Globe nomination, it is bound to get even wider viewership which means that the use of restraints gets normalized in the public psyche and in one swift move over turns decades of advocacy against the use of restraints. It is reminiscent of the residential Judge Rotenburg Center where GED devices, which deliver electric shocks, were routinely as aversives in behavior therapy. After decades of advocacy by organizations like ASAN, congress finally got on board to urge F Dee yay to finalize its rule on banning these electric shock devices. While the FDA did finally finalize its rule towards banning these specific electric shock devices last year, it does not preclude other forms of punishments, harsh aversives, or restraints by the JRC or any facility. Currently there is little accountability or reporting and it makes the news only when someone dies. So there is still much work to be done. Movies like Music are a major setback to such advocacy efforts.

The third is the fact that the 90 journalists who make up the Hollywood Foreign Press Association, the ones that get to nominate the Golden Globes, thought it was perfectly ok to nominate Sia’s movie. No one talks about this but if you think about it, they are partners in crime and need to be held accountable too. Their action in nominating this movie directly amplifies such negative messaging.

Another disturbing messaging I am finding in all the movies, is to send autistics away to a facility which in my mind translates to institutions. What I found most disturbing in the movie Rain Man was the ending where the implication was that he is better off at an institution than living in the community. In the good doctor, I think it was in season 2, there is an episode where the character of Dr Shaun Murphy tells the parent she needs to send her autistic son away and he would get used to it just as Shaun had as a foster child. That analogy did not even make sense and seemed rather cruel to advise parents to send their kids away. Sia too wants to keep sending Music off to a facility, finally puts her in a facility, then takes her back to show character growth on Sia’s part etc. Overall the messaging is that a majority of autistics need to be tucked out of sight of society and out of mind of society at the earliest possible time, unless they have learned to so camouflage and mask their autism, that they can pass muster and be allowed to live in society.

We talked about positive representation so far. Let's come to authentic representation. Again a couple of things to consider here. One of course is that one that has received the widest publicity of late which a disabled character in a movie plot be played by a person who actually has that disability, just as a White person can’t be an authentic representation of a Black person.

But if we dig deeper it also means that non-speaking characters, like in Sia’s movie, need to be played by non speaking autistic actors and not just by any autistic actor. Else that is not really an authentic representation for someone like me. Therein lies the challenge as there are not really enough non speaking autistics around. And why is that. We go back to all the tragedy of systemic discrimination and gatekeeping that is keeping them out of education and other opportunities and most are headed for facilities where they are out of sight and out of mind of society.

This is where positive representation again loops back in. Positive representation goes a long way to normalizing what is acceptable in society and can reduce stigma and gatekeeping. Then we will truly see both authentic and positive representations across the spectrum.


The future of Disability; will it get better?
Yes it will get better and we have to work towards it.

We have to create more and more noise, consistently and frequently as public memory is very short and fickle.

You know I never used to hear about disability in India and this year. With all the free time during covid, I was watching their republic day parade this time. For the first time, they had a float for people with disabilities. So we have to keep chipping away.

And I want to quote the late John Lewis on this. "Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month, or a year, it is the struggle of a lifetime. Never, ever be afraid to make some noise and get in good trouble, necessary trouble."



Moz Fest 2021

I will Presenting at Mozilla Fest tomorrow

Friday Mar 12, 2:45-3:45pm PST.
Topic: Growth Mindset is a Shift of Perspective
its pay what you can starting at $0