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.

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.

You Never Gave Up on Me

Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there, 

on behalf of your extraordinary child.  

You Never Gave Up on Me

You held me in your arms, oh mother mine
When I was a mere wrinkled newborn babe
You gazed at me with love and joy
Just as all young mothers do.

I walked my first step and said my first word
With pride, you watched my every move
You expected me to walk the predictable path
Just as all young mothers do.

You watched me slip and slide away
Wondering why I didn't do what other kids do
I stopped making eye contact with you
And stopped the spoken words too

A well of sadness entered your eyes
The smile not always in place
Perplexed and puzzled
Do I know this child of mine at all?

But, you rolled up your sleeves
You never gave up on me

You took the other fork on the road
The one without the map
You struggled and searched for solutions
You fought endless battles for me

You put your fists up and took a stance
And you never gave up on me

Lost in the desert of sadness
You changed your perception of things
You summoned new strength and courage
From the unfathomable deep

You changed your whole life for me
And, you never gave up on me

You coaxed every small victory out of me
Pride overflowed from your eyes
Steps of this extraordinary child
Of quite the extraordinary mom

You do the job of a dozen people
And you never gave up on me

Exhausting is the journey you're on
Exhilarating only some of the time
I am not the typical child you thought you'd raise
New challenges lie in the path every day

To the extraordinary mom who holds my hand
And who never gave up on me.

------------------------------------------------------------------------

I wrote this poem sometime during high school. But I feel it is still so relevant even today. This poem is dedicated to all those wonderful and amazing moms and dads and parents out there who did not give up on their disabled child. Thank you for your dedication and fortitude, in rolling up your sleeves and taking on the world for us, without even knowing how to go about it.


I think back to the story of the frog who climbed to the top of the well amidst discouragement from the crowd that the task was impossible; turns out the frog was deaf so had not heard the discouragement, so made it all the way to the top.


This is what parents of the children seen as having more challenging disabilities face every day. From the get go, they are nudged to tone down expectations of their children, not to expect much. Lady Liberty did not hold up her torch of the American Dream for that child.

Over the years, I have seen many of my peers disappear one by one into the void of the system (out of sight and out of mind of society), as the once eager and enthusiastic parents reach a state of burnout and exhaustion, with this constant barragement of discouragement and lack of support. Other adult peers who have aged out of the special education system are sitting at home with their aging parents as adult day programs want “easy to manage” adults (sheep!!), even as there is a dearth of support systems for the ones with “behaviors.” It is like a battle for the classroom placements and supports during the school district years, starting all over again in adulthood for many.

Thank you to all the extra-ordinary parents out there, for your support and embrace, when the world seems to abandon us at every new stage, not just when we were children but as adults and possibly even when we are middle aged. For many with more significant disabilities, our parents and siblings are likely the only family we will ever have. I wonder who will be there as this lifelong pillar, when we are senior citizens ourselves, where we are not just battling aging issues but also the nature of our disability may mean that not all of us reach a level where we are able to take care of ourselves and have to depend on the largesse of paid staff for a decent quality of life.

Parents, Yours is truly a dedication of a lifetime. Thank you.

Hanging with friends

 

Hanging out with friends at Siddhu's birthday

Supports, Skills & Society - Integral Adult Autism Conference

Keynote at this conference. 

https://integralautism.org/presenters

 

Autism and Empathy

As I was doing the Literature Review for my Haas Scholars Research, I came upon this research paper from Oxford University.

https://journals.sagepub.com/doi/full/10.1177/1362361319883506

I'm being quoted in this paper. OMG. totally Unexpected and too cool. 

Where do the Autistic Crips Go?

In a few months, the California wildfires will be back.

We don't realize how much more disabling the climate change is for the disabled

Where Do the Autistic Crips Go?

I’m an autistic crip with sensory disabilities.

One of my many labels, too many to recount. 

Crips are not priority when natural disaster strikes.

2005 

... Katrina Disabled abandoned by caretakers

2018 

...Paradise CampFire, more of the same. 

We are ever the forgotten, not-accounted-for divergents. 

September 2020, 

...Bay Area Skies glowed red

Nuclear orange sky from countless wildfires. 

Evacuations were abound even with Covid around. 

It just was not safe to social distance at home. 

An autistic crip, I will just call him Zee 

Wildfires by his home, the air not fit to breathe.

He had legs to walk out, his was a different disability

But where would Zee go, evacuation is hardly easy

A shelter was not a place he could hang out. 

Sensory sensitivities, food allergies, social anxiety, compromised immunity. 

…. On top of sheer uncertainty. 

Where oh, where can autistic crips go?

Shelters are planned for the non-crip mindbody

Smoked filled air, but my home not in path of fire

Zee came, stayed a few days with me. 

It was not easy but it was better than a shelter.

Zee had a place to go for this round of emergency

The fires came close but his home did not catch fire. 

He was able to go back to his own home eventually

But where did the other autistic crips go?

Where will I go if this happens to me?

Next year, 

... the wildfires will be back.

Prepare and plan, says the authority?

Pack a bag with all that you need.

But...

How do you prepare for something like this?

How does one prepare sensory sensitivities and anxiety?

 

 

 

 

 

 

The Happiness Advantage

I'm reading "The Happiness Advantage" by Shawn Achor and wanted to pen my thoughts on it as I read along. And I'm taking the Happiness Advantage DeCal.

Watch this space for updates as I read more

Introduction: 

I would title this Waiting to be Happy, which kind of reminded me in a strange way of Samuel Beckett's Waiting for Godot. Essentially Acher says we are living milestone to milestone, in the false sense of belief that next milestone will bring us happiness. We think happiness follows success but the reality is the opposite. 

Discovering the Happiness Advantage

In this chapter the author writes of how he saw Harvard as a privilege that can open doors, yet many students lose sight of that, complaining incessantly about the workload. In contrast are the children of Soweto township, a majority of whom loved schoolwork, as many were the first in their family to even get schooling. 

I can personally relate. Berkeley is a privilege that I truly cherish and appreciate. The privilege comes with workload, but isn't that to be expected if you go to a top university.  I was starved of education till age 12. I was in a special education classroom that still taught me kindergarten level skills even at age 12. It was never expected I would get exposure to mainstream academics, get a high school diploma, let alone a college education.  College, and that too Berkeley is a privilege, which adds to my self-esteem, my self-confidence, my dignity. It will open different doors, that are closed in special education. So workload is just a one part of the glorious education. Education itself is a privilege. For this starving mind, the search for knowledge can never end.

Berkeley is my magical place, my Hogwarts and a bonus is that it is the birthplace of the Disability Rights Movement. I look beyond the workload to appreciate the high quality of teaching and the way it expands my perspectives in my world view, how it helps me grow personally, and how it nudges me in my future life towards working on social justice issues and hopefully making into reality positive societal changes too. 

I liked how Acher termed Positive Psychology as "what makes people thrive and excel" rather than bringing the focus on the unhappy and bringing them back to normal.  

I also feel for instance that Autism/Disability is treated as a deficit model which is very devaluing to the autistic. Team meetings during my elementary years  of ABA therapy for instance was invariably dominated with a litany of all that I WOULD NOT or COULD NOT do. Wouldn't it be nice if the child, (who is usually present in these meetings to demonstrate said lack of skill) could also hear a litany of what they CAN DO as well. There are going to be areas that we may never catch up on or never learn. Yet in other areas we may just outstrip our NT peers. It is going to be hard to be average. 

A parallel to Acher's "Cult of the Average" in the autism space is meeting the milestone of "age-appropriate behavior," which in itself is a moving target as society shifts attitudes. 

As Acher's points out we are starved of happiness since we are so focused on the negatives whether it's from external news or internal ourselves. Our brains have been crammed with facts and theory but not how to "maximize the brain's potential to find meaning and happiness".

7 principles

1. Happiness Advantage
2. Fulcrum & Lever
3. Tetris Effect
4. Falling Up
5. Zorro Circle
6. 20 second rule
7. Social Investment

Making Decisions

'

On Making Decisions about what path to take

Thoughts to mull over!!

One is something that the abolitionist, Frederick Douglass had said about education and knowledge being the key to freedom. This had struck a deep chord when I first heard it. I felt I had to go to college, not just because I loved knowledge and learning, but a college degree would also give me better access to a seat at the table. The table, that is apparently making decisions about me and my fellow autistics.

The second is a line from Robert Frost’s, Two Tramps in Mud Time. “My object in living is to unite my avocation and my vocation.” I too, truly believe that you will be happiest, if your work aligns with what you are passionate about. 

The third is that many people often end up doing something totally different than what they studied in college or imagined they would be doing. And that’s totally ok. You can act only based on your current information, you zig zag a bit, maybe loop a little too. I’ve started off with a Psych major here at UC Berkeley, but who knows what I will end up doing many years later.

-Hari Srinivasan @ ASAN - Transitions to Adulthood

 

Love Each Other

An Apt message for the Times @Albany Waterfront Trail

The Albany Waterfront Trail meanders behind the Golden Gate Fields Racecourse in Albany, CA and hugs the bay as it stretches to a little strip of land, simply known as the “Albany Bulb.” It’s a chance to see the Bay Bridge on one side and the Golden Gate Bridge on the other, even as the sun sets over the silver ocean at dusk. Nature and the universe continue to shower their infinite love upon all us humans living on this beautiful planet that we call home.

As I was ambling along the trail, I came across this sign painted on a wood bench:

“Love Each Other, Wear A Mask.”

It is such a simple statement, just six words, yet profound in its own way. We live in a time of global pandemic due to the spread of a new virus that we have not yet quite understood, and wearing a mask seems like a very simple ask. Do we not wear shoes to prevent harmful microbes on the ground from entering through the skin on our feet; it's not foolproof, but it gets the job done for the most part. And, it’s not uncommon for us to wear a mask when we catch the common cold so we don’t spread the cold to others or when we have the flu; both of which are viruses too. Given that COVID-19 is a respiratory airborne virus, it seems logical that we wear a mask to cover our nose and mouth. It is not just about protecting yourself but also being mindful of protecting those around you.

But what is even more timeless, is the first part of the statement, “Love Each Other.” We all witnessed the hoarding of toilet paper and panic buying earlier this year as soon as the Pandemic began. But during this time of global crisis, we also saw unprecedented levels of altruism, generosity and kindness towards strangers across the world. We had almost reached a state of “Agape,” the Greco-Christian term for unconditional love of our fellow human beings or the Sanskrit “Metta;” in transcending consideration of the self into seeking what’s best for others.

It turns out that humans are innately built for love, goodness, kindness and compassion.

So how do we consciously move towards this state so that this innate goodness becomes a part of our everyday existence?

In my class on “Basic Issues in Cognition” at UC Berkeley, we learned that loving kindness actually begins by developing acceptance towards oneself, and if there was resistance, it usually indicated feelings of unworthiness. If you cannot love yourself, you are an empty cup with nothing to give to others.

Professor Davina Chan led us through a simple loving kindness exercise, which can be practiced daily for a few minutes.

Start with Loving Kindness towards yourself by repeating.

May I be happy

May I abide in well-being

May I be secure

May I dwell in safety.

This warmth is then directed towards others, first to people you care about then extended to acquaintances, strangers and even those you regard as enemies.

Regular practice of simple actions can thus lead to an avalanche of profound change within ourselves and the world. The wood bench on the trail, sums it up - “Love each other. Wear a mask.”

Let us begin today!

This post appeared on the neuronav website where I was a communications intern.  https://uniquelyhari.blogspot.com/2020/10/love-each-other-wear-mask.html

Clarifications, not Mistakes

Clarifications, Not Mistakes. 

“Let us start thinking of mistakes as clarifications.

Life is never a straight line even for NTs. When you are autistic & that too nonspeaking, making mistakes will be inevitable - there are very few role models or navigation maps to follow.

So not only are we on Robert Frost’s less travelled road, but we often have to create this road from scratch. What all this means is that, we are going to not just make mistakes, but a ton of mistakes too.

When you think of mistakes as clarifications, it's a chance hopefully, to backtrack a bit, adjust a bit, and get back in there” 

-Hari Srinivasan @ ASAN’s “Transitions to Adulthood” Panel, Nov 2020

Creative Workarounds and Silver Linings

 

https://www.neuronav.org/post/creative-workarounds-and-silver-linings

A reflection for the NeuroNav newsletter

Crip Time

 Crip Time

"Crip time"  refers to the concept and practice of disability culture and community, which challenges the ableist notion that time is fixed and linear, and recognizes that different bodies and minds experience time differently.

It acknowledges that disabled people, including autistics, often need more time to accomplish tasks and may have to adapt their schedules and routines to their own unique abilities and limitations. Crip time also challenges the notion that productivity and efficiency should be prioritized over rest and self-care.

"Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds." Alison Kafer 

Essentially, Crip Time is a shift towards valuing and centering the needs and experiences of disabled individuals, rather than expecting them to conform to ableist norms and standards.

Related Terms: A Chara ,    Allistic,    Aspie,    Atypical,  Autistic Burnout,   Autistic Inertia,  Catatonia,   Crip Time,   Critical Disability Studies,   Disability Justice Movement,  Disability Rights Movement,   Disability Eugenics,   Feeble-Minded,   Imbecile,   Inspiration Porn,  Masking/Camoflauging,   Microaggressions,   Neurominority,   Ofa Ahi Latu,   R-Word,   Savant,   Spoon Theory,   Takiwatanga,  Trains,  Ubuntu,    Ugly Laws,   Upstander

Your health is as safe as that of the worst-insured

 Your health is as safe as that of the worst-insured.

Online is a critical disability accommodation for education access

The article below highlights how online and hybrid options are a critical but overlooked disability  accommodation that makes education accessible to many in the autistic/disability populations. 

https://www.onlinecollegeplan.com/can-someone-with-nonverbal-autism-attend-online-college/

"Communicating their needs is something that almost everyone with ASD struggles with so for someone who doesn’t communicate in a typical way, those struggles can be exacerbated, especially in school. "

"Colleges and universities across the country offer online programs and more and more of them are implementing support programs to help autistic students transition into college life more smoothly and to excel. These two things can come together and absolutely transform the future for students that can’t speak. The minimized interaction in a self-paced distance-learning degree program allows the student to focus on the things that they can do instead of having to consistently confront the things they can’t as they try to navigate their coursework. The support programs in place at many colleges are there for all students whether they are learning on campus or online and they can help to provide proper resources to students that need them, to help them stay motivated and organized, and to be there for the times that college gets to be a bit overwhelming. A nonverbal autistic student would be able to get the full college experience regardless of what method they chose to complete their degree, but it seems that online college would help reduce the stress of going to college and make communication between advisors, professors, and classmates a lot simpler."

Impact of Autism and Coping Strategies in Indian-American Families

Impact of Autism and Coping Strategies in Indian-American Families.

Hari Srinivasan

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APA Poster

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Abstract

This paper explores the impact of autism and coping strategies amongst  Indian-American families living in the San Francisco Bay Area. Descriptive information on the challenges faced, coping strategies and a stress score (as measured by the Cohen Perceived Stress Scale) was gathered from 18 Indian-American parents of individuals with autism. The study finds that  high levels of stress amongst the ASD families (sample mean of 19.2) compared to the non-ASD families (population mean of 13). The study found that the age of the ASD family member does not seem to influence stress levels. There is however  a direct correlation between the severity of challenging ASD symptoms and the level of stress.  

This study suggests that if causes are better understood about the underlying physiological conditions for each specific case of autism, rather than classifying autism into one broad bucket, it may lead to more targeted treatments and better support systems could be put in place as well.

Positive outcomes for ASD individuals lead to less stress for families. Families also need more comprehensive support and resources in planning and supporting the needs of their ASD family member. Less stress for families leads to better outcomes for the ASD individuals.

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The Anion needs to go on (Va)Cation

The Anion needs to go on (Va)Cation

Negative charge, the electrons latch on

Mood deteriorates, ionic bond

I am an anion that needs to go on (va)cation

Hang at the transition metal hotel

Sail continents and be a noble gas

A full valence shell, Non-reactive

That’s  (neuro)chemical Equanimity!

ok, this is a chemistry poem.  Taking Honors Chemistry this year, so this poem was bound to happen!
In case chemistry seems like a dim entity, here's a layman's explanation of some of the terms used. 
 Atoms have equal numbers of positive charge protons and negative charge electrons.Atoms can gain or lose electrons in order to form bonds with other elements. Usually they do this in order to complete their electron shells. When an atom loses electrons, it has a net positive charge -  called a Cation. On the flip side, when an atom gains electrons, it has a net negative charge  - called a Anion.
Noble gases have full outer (valence) electron shells so don't feel the need to react. So they are considered pretty stable.
Transition metals are a group of metals kind of positioned in the middle of the periodic table. 

  

A Hyphenated American in the nth Dimension

I am an “Indian-American;” a hyphenated-American in a land of millions of other hyphenated-Americans. Even the original inhabitants, the “Native-Americans,” have not escaped the hyphen.  Over the years the hyphen has become a proud celebration of the American in us and cultural heritage that we add to its salad mix. 

Choose Happiness

Abraham Lincoln said, "Most people are about as happy as they make up their minds to be." In other words, our personal level of satisfaction is entirely within our control. Otherwise, why would the same experience disappoint one person but delight another? Happiness is not an accident but a choice. 

Is happiness something over which people have no control, or can people choose to be happy?

===============

Is a glass half empty or half full? Both refer to the same glass of water with the same amount of water, Yet the word empty seems to infer some measure of dis-satisfaction in that something is "lacking".  Half-full on the other hand is far more positive, almost implying there is room for growth, that the glass could be full.

Our attitudes and perceptions does determine our state of happiness to a large extent. Life is filled with both suffering and joy. These are unavoidable axioms of life. It's how we choose to handle these situations, that matters. Happiness and sorrow are relative states. One can never truly appreciate happiness or a state of satisfaction without experiencing sorrow.

The Buddha spent years meditating under the Bodhi Tree pondering these very questions. He stated that there is suffering in human life and that you need to understand its causes. Ultimately it's your state of mind, that can help you overcome it. He expounded that we need to maintain a state of equanimity - one where suffering and joy has no effect on you whatsoever.

This state of perfect equanimity may be a challenge for most folk of today. But we can choose not to drown in the sorrows that life throws our way.

Look at my own life. My autism affects me in so many aspects of my life. Not being able to talk or having full control of my body is frustrating on a daily basis and many a time I do sink. But I also have so many other talents and the potential to make a difference in my life and that of others. This attitude has to be a conscious choice in order to make our life meaningful and productive.

We can choose to see the fullness of our life instead of its emptiness. We can choose to be happy!