A Day in the Life



This was an interview I gave for Zoom magazine. 
Interview Text follows. 

A Day in the Life of Hari Srinivasan, Promoter of Connection,Understanding, and Belonging


Hari Srinivasan is a minimally-speaking autistic advocate and college student at UC Berkeley, California. He works tirelessly as a student, research assistant, and teacher. He is a Psychology major with a minor in Disability Studies, and so far has a 4.0 GPA and is Phi Beta Kappa. At UC Berkeley, he teaches a class about autism, and this summer he will be starting an independent year-long research project on autism as a
Haas Scholar. Hari has a passion for learning about a variety of disabilities, as he feels it helps him understand autism better and gives him a broader perspective on the challenges that many people face.

Hari has been featured on President Obama’s Instagram to help celebrate the 30th anniversary of the ADA (Americans with Disabilities Act) and is a student journalist at the Daily Californian. He’s active on his college campus, even serving as the first nonspeaking autistic president of the student organization Spectrum At Cal, working to expand their outreach efforts and promoting “belonging” over mere “inclusion.” He also serves on the board of ASAN (Autistic Self-Advocacy Network), one of the few
organizations supported by the autistic community, and is a member of the Panel of People on the Spectrum of Autism Advisors (PSA) for the Autism Society of America.

1. What does a typical school/regular day look like for you (or, if there isn't a typical day, describe one that is representative of your life)?

A typical day during the pandemic is a lot of screen time, typing or in Zoom, interspersed with maybe a walk, some exercise, music, TV (more screen time), and staring at the view of the beautiful Bay and the Golden Gate bridge from my window.

2. What hobbies or interests do you have outside of your schooling or work?

Philosophy & creative writing, especially poetry. I have written over 200 poems. Yoga, music, watching football, basketball, cricket, & tennis (I’m learning tennis).

3. How does being autistic help or hinder your work, schooling, or hobbies?

A multi-modal thinking which uses all my senses, not just traditional audio-visual, can be a huge advantage as you are weaving in many streams of thought and consciousness.

The mind is a beauty with its ability to quickly grasp concepts, analyze, appreciate, and enjoy. It's a tremendous advantage to have this mind as I have to spend a majority of the time on the motor output part. For instance, in Calculus the instructor was writing out all the steps on the board. Even as he started, I had the answer, though if someone had asked me to type out all the steps, that would have taken me quite a long time as that is a motor task. I often feel I am on two complete opposite tracks with my mind and body.

If I have to do a motor task, I can get completely lost and disoriented and distracted even between point A and B. Honestly, that part is tremendously frustrating and drags me down and leads to all kinds of anxiety and more “autism behaviors” which further slows me down.

4. What kinds of changes or accommodations do you make in your life to allow
you to be successful?

I think I am still trying to figure this part out (LOL) as my needs go beyond just the communication part, which is hard in itself. I’m constantly having to look for workarounds for each and everything. It's the ADHD, oral-motor apraxia, anxiety, lack of body schema, sensory processing, fine motor issues, body coordination issues, obsessive compulsive behaviors, mood regulation, misc. health issues, allergies, etc.,
all in one package called Hari. There is only so much that goes into the disability accommodations which are very academic oriented. So each day is like a new negotiation with my environment which has been quite the task and frankly quite exhausting. Much of the time, I’m not really feeling all that successful and quite burned out as I am trying to navigate through my maze of a day, day after day.

5. Have you experienced discrimination or bullying because of your autism or autistic traits?

Oh yes, all the time. My disability and “autism behaviors” are all too obvious, much of it quite involuntary, though there are still attempts at masking and camouflaging in other areas. So I can get either completely ignored and excluded or stared at with uneasy or disapproving looks in many places. And that is just the tip of the iceberg. Many, many instances by educators, neighbors, programs, professionals, and just folk on the street.


6. What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?

No one is an expert on you. No one knows enough about autism to be an expert. Even
the “experts” are still learning. So no one gets to have final say on what your limitations,
capabilities, & needs are.

7. What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called "experts" do you think parents should ignore? How can parents best support their non-speaking or minimally-speaking children?

Communication must extend beyond just basic wants. Basic wants are just survival. The next step up are needs around school/vocational/skills/interests which are necessary for building self-confidence and getting ahead. But real quality of life is the ability to express thoughts and opinions. So aim for that in communication—irrespective of the communication methodology used and whether it’s via speaking or via AAC. On the “experts” part, I would repeat the advice to autistics above.

8. What was one piece of advice you received that helped you be comfortable with who you are?
“The human race is so puny compared to the universe that being disabled is not of much cosmic significance.” —Stephen Hawking

9. How did growing up without feeling represented in media affect you?
OMG. That was the essence of my recent article titled “Boy Like Me” for the Disability Visibility Project.

10. How does being a minimally-speaking autistic person affect your experience in higher education and in your advocacy work?

College has been an amazing experience for me as I have found a very supportive environment and faculty in Berkeley. I don’t know if this is the case in other places though. But for all that I get to do, I realize my college experience will still be just a fraction of that of my NT [neurotypical] peers or even my speaking autistic peers.


11. What kinds of topics do you cover in the college course on autism that you teach?

So it's a combination of lectures, class discussion, student presentations, and guest speakers and panels. I manage to pack in a lot in our weekly 2-hour classes—from history, education, therapies, issues across lifespan (childhood - adulthood - geriatric), autism terminology, disability law, housing, relationships, family dynamics, identity, healthcare, mental health, translational research, law enforcement, tech, representation in media, and a bunch more. The 12-13 weeks of classes each semester are not enough to pack in all the additional topics I would like to cover. It felt so impactful when a former student from Europe recently emailed me to say that takeaways from this class led to her current research work.

12. As one of the board members, in what ways do you contribute to ASAN?

I think I both learn and bring fresh perspectives as a both a minimally-speaking autistic
and a person of color.

13. What are some aspects of advocacy work that you find especially fulfilling?

It is the opportunity, that dream, to make a contribution, even if it's a pebble, that will lend to that huge ripple of change.

On a lighter note, I used to obsessively watch Thomas the Tank Engine as a kid. And Thomas always wanted to be a “useful” engine. I guess I’m being “useful” too, now.
LOL.

14. What would you like to do—given your education, work, and advocacy background—after graduation?

In the immediate future I hope grad school is in the cards for me. I’m passionate about learning and knowledge, and my mind is just thinking all the time and I want to do and contribute so much.

15. How can readers learn more about the experiences of non-speaking or
minimally-speaking autistic people?
 

Are there resources you'd like to point people to, or people online that you recommend following?

Just reading or following what a few of us are writing is not enough. Thought has to translate into action on the ground. Start by interacting with nonspeakers. There will be many in your neighborhood who are getting absolutely ignored or out of sight, tucked away in special education class or day programs. How will you learn unless you interact and start to include? Ask to start buddy programs at school if you are of school age. If a nonspeaker lives on your street, include them in your circle of friends and do things with
them. There are many small things you can do at the grassroots level which together will make a huge difference and normalize the presence of every kind of human being in everyday society.

16. Is there anything else you'd like to share?

While it's nice to see neurodiversity make inroads both in terms of awareness and on the DEI [Diversity, Equity, and Inclusion] front, there needs to be a bigger effort to include the more marginalized groups like minimal/nonspeakers, and their support needs in such measures and conversations.

17. What are the best ways for people to connect with you (if desired—anything you include in this section will be published, so only include information you want public)?  (Email, Twitter, Facebook, Instagram, etc.)

I have a bunch of media for interested folks. I write about many things.

Daily Californian: www.dailycal.org/author/haris/
Twitter/Instagram @harisri108
Facebook Page: 108hari
YouTube: tinyurl.com/108hari
Blog: http://uniquelyhari.blogspot.com
But more than FOLLOW, I want you to think ACTION.



This was part of the series.













 

Empowering a Future

 I was the keynote speaker at the ABLE - South Carolina, a Center for Independent Living at their Annual conference. www.able-sc.org

Empowering a Future is a professional development opportunity for educators and service providers working with youth with disabilities who are transitioning to adulthood. This year’s conference will include all the exciting sessions you’re used to – but in a user-friendly online format! Want to learn how to motivate and empower your students? It’s time to leave the deficits-based approaches behind and focus on new strategies to build strong, successful self-advocates. Session content will highlight virtual service delivery, supported decision-making, pre-employment transition services, youth leadership, and much more. This event is made possible through a partnership with Able South Carolina, South Carolina Department of Education, and Transition Alliance of South Carolina (TASC).

Link to any potential recording will be posted if available. 




 

Keynote - Empowering a Future

I was keynote speaker at Able-SC's Transition Conference

Empowering a Future is a professional development opportunity for educators and service providers working with youth with disabilities who are transitioning to adulthood. This year's conference will include all the exciting sessions you're used to - but in a user-friendly online format! Want to learn how to motivate and empower your students? It's time to leave the deficits-based approaches behind and focus on new strategies to build strong, successful self-advocates. Session content will highlight virtual service delivery, supported decision-making, pre-employment transition services, youth leadership, and much more.

“Being branded low [functioning] sets you up for low educational expectations, low societal expectations and gatekeeping from the get go, it sets you up for lifelong failure. No one willingly labels themselves as low, it is others doing so.”

We are so excited for Hari Srinivasan to be our keynote speaker at Empowering a Future 2021! Teachers, service providers and counselors: learn directly from an autistic student and disability scholar about how to empower students with disabilities. Tickets: bit.ly/eaf2021

 

Phi Beta Kappa


I got an invitation to join the UC Berkeley Chapter of Phi Beta Kappa,  a very prestigious academic honor society pbk.org & pbk.berkeley.edu 

As the email invite said on Mar 5 state: 

"It is my pleasure to inform you that based on your exceptional academic record in Letters & Science, you have been invited to join the Phi Beta Kappa chapter at the University of California, Berkeley.  
 
Phi Beta Kappa is the premier academic honor society for L&S undergraduates, and its members include seven of the nine U.S. Supreme Court Justices as well as many UC Berkeley professors."
 















Disability Lessons in Practice

Article mentioning me.

 

A mention in August Company

Crip Camp | President Barack Obama Moderates A Conversation on Disability Rights
with Disability Rights leaders and makers of Crip Camp movie. 
And... I got a mention. Oh wow!! Oh wow!! A mention in August Company. 

Atypical

 



In the context of autism, "atypical" refers to behaviors, traits, or abilities that deviate from those commonly observed in neurotypical (NT) individuals.  These atypical behaviors can encompass a range of manifestations, including repetitive movements (stereotypies), challenges in social communication and interaction, sensory sensitivities, and intense, focused interests in specific topics.

The term "atypical" is utilized to denote these behaviors because they diverge from the normative patterns expected in NT populations. For instance:

  • Repetitive Movements: These may involve neural circuit dysregulation in the basal ganglia and motor cortex.
  • Social Communication Difficulties: These can be attributed to differences in the neural substrates involved in social cognition and language processing, such as the prefrontal cortex and superior temporal sulcus.
  • Sensory Sensitivities: These may result from atypical processing in sensory integration areas, including the thalamus and primary sensory cortices.
  • Intense Interests: These could be linked to heightened activity and connectivity within the striatum and prefrontal cortex, contributing to focused attention and interest.

However, it is important to note that the term "atypical" should not be used in a negative or stigmatizing way, as autistics have unique strengths and abilities that may not be considered typical but are still valuable and important. Understanding the neural basis of these atypical behaviors can help in developing supportive interventions and highlighting the positive aspects of neurodiversity.

======

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

A Bingo Surprise

The team at NeuroNav had a birthday surprise for at the Team Meeting today.
it was "Hari Bingo"







IACC member

I got selected to be on the Interagency Autism Coordinating Committee as a non-federal member. 

Excited at the opportunity to contribute towards lot of meaningful changes.

 


I got mentioned in a Time mag article and more

 

TIME Magazine (Sarah Kurchak), February 25, 2021

https://time.com/5942094/sia-music-disability-representation/?fbclid=IwAR2_vIUk9XFVF2Kt2AKlCUQ3KSIpIiPWZx-uKipLGWq18SOtOZksuIWVVYA

The Independent (Helen Brown), February 25, 2021

https://www.independent.co.uk/arts-entertainment/films/features/sia-music-film-autism-maddie-ziegler-b1806871.html?fbclid=IwAR0ieF3bTTzDKilAQvAM254Hlzyg2qvIW_7x0tVV7rORboP7VJal1rQNtCI#comments-area




  •  As the film’s final contributor, Hari Srinivasan, concludes: 'If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics.' He says that we need to change the narrative around non-speaking autistics and improve visibility in society – and pop culture – so that more actors who might better fill a role like Music in Sia’s film can come to the fore and be seen, and I agree. It’s only those tired old stereotypes that deserve to be crushed.")

Canadian Broadcasting Corporation (Gloria Macarenko), February 18, 2021
  • (non-transcripted radio clip) ("One of the big organizations, I believe they are called CommunicationFIRST, ... and they were completely ignored [by Sia]. ... That type of false promise is so damaging for trust in terms of a disability community or a minority community against a majority voice that is trying to talk over us." "As autistic AAC users like Cal Mongtomery, Damon Kirsebom, and Hari Srinivasan said in the film LISTEN, which was made in response to Sia's film, 'Ask nonspeaking autistics. Listen to nonspeaking autistics.'")

https://cute766.info/disability-visibility-project-montage/






Female Protective Effect in Autism

The "female protective effect" hypothesis in autism suggests that females have a biological or genetic protection against developing autism. This hypothesis is supported by the observation that autism is more commonly diagnosed in males than in females, with a widely reported ratio of approximately 4 males for every 1 female diagnosed with autism. While exact mechanisms behind this protective effect are still being studied, there are several theories, including genetic, hormonal, and neuroanatomical differences between males and females.

One significant area of research focuses on the role of genetic differences, particularly those related to the X chromosome. Because females have two X chromosomes (XX) while males have one X and one Y chromosome (XY), it's theorized that the presence of an additional X chromosome in females may offer some protection against the development of autism. Here's how the mechanism is thought to work:

  • X-Chromosome Inactivation: In females, one of the X chromosomes in each cell is randomly inactivated, which means that it does not express its genes. This process could potentially mitigate the impact of harmful mutations on the X chromosome, as there is a chance the mutated gene is on the inactivated X chromosome.
  • Genetic Buffering: The presence of two X chromosomes in females provides a "genetic buffer" against mutations. If a gene related to autism is mutated on one X chromosome, the other X chromosome may carry a normal copy of the gene that can compensate for the mutation. In contrast, males, with only one X chromosome, do not have this potential buffering, making them more susceptible to the effects of mutations on the X chromosome.
  • Single-Nucleotide Polymorphisms (SNPs): Research has identified certain SNPs that are associated with an increased risk of autism. Some of these SNPs are located on the X chromosome. The female protective effect could be related to how these SNPs are expressed or compensated for in females compared to males.
It's important to note that while the X chromosome and the mechanisms mentioned above play a role, autism is a complex disorder influenced by multiple genes across various chromosomes, as well as environmental factors. The female protective effect is just one possible explanation in understanding the gender disparity in autism diagnoses.

References
"Sex differences in autism spectrum disorder: evidence from a large sample of children and adolescents" by Loomes R, Hull L, Mandy WPL. (Journal of Autism and Developmental Disorders, 2017) 
"The female protective effect in autism spectrum disorder is not mediated by a single genetic locus" by Werling DM, Geschwind DH. (Molecular Autism, 2015)