Halloween is my least favorite holiday

Halloween is my least favorite holiday. 

Why? 

It's a painful reminder of EXCLUSION, and not memories of joy. 

After usually avoiding/excluding kids like me for 364 days, the very same neighborhood kids & parents stood at my doorstep, arms outstretched demanding I give them candy. 

The irony!!

Doomscrolling

Came across a new term, rather a term that's been around for a while.

Doomscrolling is the act of compulsively scrolling through negative news or social media feeds, often for hours at a time, despite feeling upset or stressed by the content. The term "doomscrolling" gained popularity during the COVID-19 pandemic, as people spent more time online and were inundated with a constant stream of alarming news about the virus and its effects. This behavior can lead to feelings of anxiety, hopelessness, and helplessness, as well as difficulty sleeping and concentrating

 So it became this "vicious cycle  in which users find themselves get stuck in a pattern of seeking negative information no matter how bad the news is." 

It does not help that, online/social media algorithms are designed to feed us "attention-capturing" information and give us more of whatever we had clicked on. The result was a newsfeed of endless doom, which could trigger more compulsive scrolling behavior. 

The disabled/autistic are equally vulnerable to these influences, further compounding our mental health issues. 

Here is a research paper on this. 

Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing
Satici SA, Gocet Tekin E, Deniz ME, Satici B. Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing. Appl Res Qual Life. 2022 Oct 19:1-15. doi: 10.1007/s11482-022-10110-7. Epub ahead of print. PMID: 36275044; PMCID: PMC9580444.

National Society of Leadership and Success

From Cal Alumni Association.

Dear Hari,

I am pleased to share that you have been recognized as an exemplary college graduate and meet the criteria to become a member of The National Society of Leadership and Success (NSLS). Congratulations!

This invitation is only offered to a select number of UC Berkeley alumni, and we’re proud to extend this opportunity to further your leadership development....

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Appreciate the recognition from Cal Alum. Thank you. 

 

SIB and Suicide Ideation

• 30% of autistics have Self-Injurious Behaviors (Soke et al., 2016)

SIB in autism could in fact be a manifestation of psychological trauma and indicative of underlying suicide ideation or maybe a substitute for suicide itself. 

I had an autistic friend who attempted suicide first by swallowing the contents of an entire bottle of melatonin pills and then a second time by drinking a whole bottle of his dad's whiskey in his home. He had to have his stomach pumped in ER both times. All while he was a teen. 

Ironically, the very act of suicide as such, requires a lot of motor skills, executive functioning and motor planning. So maybe SIB's are the only tools available for some autistics as an outlet for built up trauma, stress or distress from other underlying issues. Perhaps it's not thought of as suicide ideation when the autistic does not have spoken language to express it as such, but don't actions speak louder than words. Where SIB's become a substitute or prologue to suicide ideation. 

Isn't this worth finding REAL solutions to, through autism research.

Currently there is little to no support for autistics engaging in SIB or families who are trying to support those autistics. 

Medication is currently seen as the only resort. And what are these drugs. All we have is Big Pharma recycling/ rebranding meds made in the 1950s. Minor changes in chemical drug structure allows for re-patenting and maintaining the exorbitant high prices/profits. I once heard Dr Antonio Hardan of Stanford mention that these drugs don't work the same way in autistics as in the general population - why then are we being over medicated from childhood with drugs that don't work for us. 

There is a paucity of crisis centers resources or supports available to autistics with SIB's/aggression and their families. Most families don't know who to approach; it's like they are on an island. The autistic's life often becomes a revolving door of stays in hospital psychiatric wards (like a few of my friends) and then sent promptly back to their families after their stay. Why revolving? - because they are on meds which have limited effectiveness in the first place. And many get sent off to live in group homes or residential facilities as the family can no longer cope living from crisis to crisis (irony is that many group homes don't want autistics with behaviors) . If this is the state of the family, imagine the state of the autistic themselves who often have much more limited communication - nothing to do with speaking ability here, think - how communicative is any person, disabled or not, in times of distress (like you choke up when crying!!). 

The limited number of meds available to us means along with being on meds, often since childhood, means many of us build tolerance to many of these drugs which further decrease their effectiveness. So even the ones that "kinda" worked don't work anymore. We are all going to live to 80 at least. What are we gonna do when we are in our 30s, 40s, 60s, 70s, 80s if nothing works. 

We need research done to develop therapeutics that will actually work for us? And given autism is a spectrum, we need to get down to a physiological level so that precision therapeutics are developed so we can reduce side effects. 

At the end of the day we also need to remember that psychotropic drugs only help to manage symptoms or dampen behavioral symptoms. So what is also needed is biomedical research into underlying issues at a physiological level that translate into affordable mainstream healthcare - its that research into gut issues, sleep issues, auto-immune issues, neuro-inflammation, movement issues etc - these are real issues that many autistics are facing - cuz if we get to the bottom of those, maybe we can reduce SIB by that much. 

My PD Soros Cohort

 End of Fall Conference. 

The full PD Soros cohort. 

PD Soros Fall Conference wraps up

Sunday

The morning started with some of the fellows having breakfast with Damian Williams, the first black US Attorney in Manhattan, heading the Southern District of New York. It was followed by his super interesting at today's conference. It was such an interesting keynote. 

Group photo as the 2022 class bid farewell and left with a box of Mithai (its Diwali tomorrow)

 

Dare to Grow

The sign all over campus so applicable to disabled life

"Dare to Grow"

Its the Vanderbilt Motto

I just love it. 

"Life is a Challenge. Meet It!!" - Sri Satya Sai Baba. 

Yes I dare to grow, 

and grow and grow

and then grow some more

even in the midst of barriers laid by societal naysayers. 

even in the midst of the challenges of a far-from-easy disability 

Yes I dare to grow, 

and grow and grow

and then grow some more

Will you dare to grow?

and then grow some more?

I dare to grow

My mind urges so. 

Seek paths of solutions, possibilities and opportunities

Key ingredient - empathy

Limits higher than the sky

For me and so many more

I dare to grow

It is just, it's a right!

We all can grow

Onward!

Degree

Guess what came in the mail. My official degree certificate.

Highest Honors and Highest Distinction  

Guess what came in the mail. 

My degree

more than a piece of paper, a signature, a golden seal

opportunity of education and knowledge

open avenues to contribute. 

paper of accomplishment .... an acknowledgement of me

soul satisfying 

Takeaways from CAN conference

The three day College Autism Network concluded today in Nashville TN. 

I managed to attend some of the sessions, I was especially interested in the sessions around employment.

Other than some very disquieting, very disappointing and very disheartening remarks at the Plenary session in this post, there were some great suggestions around focus on the rocky road to employment. 

NOW FOR THE BETTER PARTS of the CAN conference

The Thu morning session by Helen Rottier was my favorite, followed by Coaching the Coach and Peer mentoring.  I also attended the Thu plenary session by employers, and the World Cafe on Friday. Blending ideas from all these sessions. Missed Eric's Garcia's opening remarks on Wed (tornado alert got in the way). 

What can colleges do to help the rocky road to employment (often due to perceived lack of experience)

- encourage internships and campus employment. 

- get students in front of employers as career fairs don't often work (crowded/sensory overwhelming), smaller networking events to increase student confidence.

- its not just about knowing the door (resource) and getting to the door, its also giving the confidence to walk into that door and staying inside. For example in a college context, not enough to let the college student know there is a student writing center, need to encourage (gentle bump) to go in there, maybe make a few introductions and get them comfortable with that resource. Else it will just remain a theoretical unused resource. 

At the employer end - I think these are good starting points. 

- Better job descriptions by employers

- Matching interview to actual job skills. 

- Augment traditional interview. Applicant first consideration. (Look at the amazing tech being developed by Frist Center @ Vandy on this)

- Joining a large company can feel like being tossed to the wind. Assign a buddy and career coach for each new hire. 

- On a path of Awareness acceptance advancement

- Virtual safe space to get support.

- training managers "to be a human being". How to manage diff forms of communication. 

- sustaining employment by understanding what it entails eg: transportation, time taken to wash uniforms

- self regulation in the workplace with OTs etc..... 

Helen had us all start by stating something that should be taught to middle schoolers. such a relevant question as really a lot of ideas gets shaped at the school level itself.  

I feel its teaching middle schoolers self-esteem so they don't "settle." 

It really starts with elementary and middle school itself. For instance a majority of special ed kids are pushed into the non-diploma track in middle school IEPs (deemed not capable of being on the diploma track - the actual wish of the child be dammed). That in itself closes the college track for you - that is a choice the autistic should get to make well into high school, that choice should not be taken away from you by "well-meaning" educators, which ties into coaching the coaches. 

I think school educators need to be taught to get out of unconscious bias mindset of the end goal of special education being to create a good patient. That outcome is a dead end for the autistic. At the same time college guidance counselors struggle with motivation in autistic students.  How can a good patient be motivated if their life is one of compliance. There needs to be wholesale mindset shift of educators. 

 A student who likes himself, is liked for who is he -->  self-esteem and self-confidence -->  he can think about what he is passionate about which in turn may drive his motivation -->  that is the student who will succeed in life and in college. 

Maybe college is not for everyone. A good trial I feel is junior college, a smaller environment where you can get your feet wet and try out college expectations and it also gives you space to think and explore what you really want to do. What junior colleges lack in resources they seem to make up in terms of support and encouragement. Junior colleges are a very under appreciated resource for autistics. 

Helen also brought up accommodations. My experience has been that accommodations is only the beginning. Accommodations are like a very necessary but not at all sufficient for actual success. You can get all the accommodations in the world on paper but that alone will not make you successful.  Ultimately, it's the people around you which make those accommodations translate into success. In college it's the empathy of faculty and peers and disability counselors. It's those little tweaks and workarounds. 

Another point Helen brought up was around planning for any gap year. So true. Else your gap year will turn out to be a year long daze in front of the TV and you waking up bewildered and frustrated.  I know I would not do well with gap year without a clear structure of its beginning, in-progress and end -  it would like derailing a running train and it would be hard to get the train back on track. 

I was curious about what peer-to-peer mentoring entailed and how it was being  implemented so went for that session, I think this slide below captured my attention the most,  with many of the issues facing college students.

For instance - At Vandy,  I have weekly check in's with Dave Caudel (ND) at Frist Center which I find very valuable. For instance, Dave gave me valuable tips on how to read a scientific paper quickly which was like yay. 

The first 2 boxes, I will eventually will get down, the last two will be the continued challenge especially box 3. 

There was also discussion on whether the peers would be NT or ND, I think there is value in both.  The latter would definitely lend to more empathy. What helps even more is if peers are trained in all the campus resources so can at least point you to resources. 

What I was not so certain about was about peers getting paid a hourly rate for their "peer-ship" as in my mind it turns them into a sort of therapist vs a friend.  I have been surrounded by "paid" therapists/staff/respite_workers/aides pretty much all my life and part of me longs for people who are there not because they are paid to be, but simply want to spend time with me (my definition of friendship).  I don't to be a job for someone - paid people last a year or two and leave for the better paying job. I want connections with actual peer friends. 

At the World Cafe small group discussion on employment during the Friday session, I was able to reference back to this slide as really these "soft skills" is often the more challenging part for the autistic even in the employment arena. They may have all the skills in the world for the actual job but it's managing these other "fluff" around the job that makes the difference in job retention and job satisfaction. 

In Tordano Country

In Tornado country

Tornadoes twist and turn

Nature's fury unleashed

A dance of destruction

As homes and lives are breached

They roar across the land

Leaving a path of despair

In their wake, broken dreams

And a sense of overwhelming fear

But even as they devastate

They also have a strange allure

A force of nature's power

That we can't help but endure

So we watch with awe and fear

As tornadoes touch the ground

A reminder of the forces

That constantly swirl around

We can only stand in wonder

At their raw and primal might

And hope that we are spared

Their destructive flight

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Today was very unnerving experience for sure.

Emergency Tornado Alert.

Sat in basement with a helmet on. Channel 5 live updates said rotation part turned into "just" a thunderstorm before it hit our area. Still heavy rains and hail nearby.

Guess not making it to college autism summit session today.
Warning came as just about to leave, phones screeching with alert. Lucky was not on road.

College Autism Summit 2022

College Autism.Summit 2022 hosted By Frist Center for Autism and Innovation at Vanderbilt University.

Headed there in a bit. Looking forward.  https://collegeautismnetwork.org/

Changes in Big-5 during Pandemic

I always think of the exponential effects on autistics. 

https://www.nbcnews.com/health/health-news/pandemic-altered-personalities-more-neurotic-less-agreeable-rcna49595

"NBC News reported on a study published in PLOS ONE that indicated that personality changes from January 2021 to February 2022 were roughly equal to what’s normally a decade’s worth of incremental personality changes. Although people often become less neurotic, extroverted, and open as they age, adults under 30 saw a significant increase in neuroticism over the study period. Neuroticism “is a very consistent predictor of mental health outcomes like depression and anxiety,” said the study’s lead author, Angelina Sutin, PhD, a personality psychologist at the Florida State University College of Medicine."
(https://view.info.apa.org/?qs=ab2c9530baf7a6ce1051f3f9254b1595fbcf171f4a81ad3eed135b5a5f2cec4508d1f4b727d406c0bea89be99e8df4a9ad7fee31eba4572980be2e27faddf3b287ffdd23c1cb6fc2f324d4ab0e197f72)

Friendships in Autism Adulthood.

"In 1990, only 3 percent of Americans said they had no close friends; in 2021, nearly 12 percent said the same. The United States is in the grips of a loneliness crisis that predates the Covid pandemic."
https://www.nytimes.com/2022/10/01/well/live/how-to-make-friends-adult.html

 If this is state for NTs, imagine the situation for autistics who generally have little - no friends  through childhood.

However, some of the suggested ways to making friends is hardly the easiest for autistics either -  "You really have to try and put yourself out there."

So it's a continued conundrum.

245 years to get to Indigenous Peoples' Day

It just took 245 years to recognize Indigenous Peoples' Day as a National Holiday in 2021. 

Till I came to Berkeley, I had not been aware that a simple start (though by no means enough) was land acknowledgment, which I saw at many events; recognition that UC Berkeley sits on the territory of xučyun (Huichin), the ancestral and unceded land of the Chochenyo speaking Ohlone people.

Reflecting below on an assignment done on Zitkala-Sa for American Literature back in Grade 10 and an essay on Black Elk Speaks for my American Indian Ethnic Studies course a few years back.

You have to think about the terrific power play at work here (sarcasm intended) - the dominant party strips away the very identity and resources of non-dominant party (identity and resources which gives them confidence and which makes them strong), so the latter will stay second class and subservient in the former's socio-economic structure. 

I'm always felt very sad when studying history as it seems to be a series of such power plays, one group suppressing another. This has been the history of colonialism and occupation the world over. The first thing the invader does is to destroy the structure of the old culture, then replace it with the own religious structures and values, till the old culture becomes one of shame for its practitioners. After a few generations all knowledge of the old culture is lost to human memory. 

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School Days of An Indian Girl by Zitkala-Sa - Example of Realism
(Grade 10 assignment)

Zitkala-Sa’s recollection is a poignant account of the conflict and clash between two cultures and the frustration of ending up in a no-man’s land. She is a young Indian girl who is taken away to be assimilated into the white society; by teaching her the mannerisms and customs of the white race. The problem with assimilation seems to be an all-or-nothing attitude by the teachers. She is forced to forsake her own native customs and language (including cutting her hair) and then told to go live on the reservation. So she can never be fully Indian. Even her own mother is not able to relate to her and vice versa. Yet the color of her skin will always make her a second class citizen in the white community. She will never get full acceptance there either. She may have won the speaking contest, yet every time she goes to a new place it would be like starting over with the new set of audience. She would have to prove herself over and over again. The reader is profoundly affected by the stark realism and detail of her experiences in her narrative. The reader journeys with her on her loss of innocence - “ we had been very impatient to start our journey...” (207) to a dissatisfied state of bewilderment - “The little taste of victory in my heart, did not satisfy a hunger in my heart.”(221).

The story has all the elements of realism. It is devoid of emotionalism or melodrama. The events are presented in a very matter of fact way. “Their mothers, instead of reproving them such rude curiosity, looked closely at me, and attracted their children’s attention further to my blanket.”(208). At each stage there is another grim reality to be faced. There are outside forces (the assimilation process) and events that affect that affect her at every turn.

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South Hall

I heard it was like the only campus building (or one of the few buildings) to survive the 1906 SF quake. 

I'm passed this building countless times and even gone inside, but never had a class inside.

 

National Disability Employment Awareness Month

 First DSP (Disabled Students Program) in the country started by Ed Roberts.