Capturing Joy

 This time in Jan 2022

With my Haas Scholars Cohort on the UC Berkeley Campus. 

We were back to in-person meetings though fully masked indoors. 


Kevin, 2nd from Left, just got into Columbia Law. 
Huge Congrats Kevin! You will surely change the world with your work on prison reform. 


Freezing Rain

Ground temperature, below-freezing
Air temperature, above-freezing
liquid raindrops fall, temperature bends.
Drops hit the ground, instant freeze
Freezing rain, slick roads of unease.

Local vs Distributed Information

[Concepts in Sensorimotor Research]

Class Discussion  in my Multisensory Processing seminar class, see details of paper here. 


Implications for autism. Application and interventions is my big thought always.

I think by now it is pretty established that there are glitches in multisensory processing in autistics.

Past studies indicate TBW (Temporal Binding Window) larger in autistics - individual cortical columns were strong, but not talking to columns in other domains.


I want to highlight that this paper says that this balance between distributed vs local information can be a tool to explore differences in multisensory processing. The paper also goes on to say that this can be used to develop effective interventions aimed at improving performance on tasks requiring coordination between different sensory modalities.

So how exactly can we start to do this. What kind of experiment design can we set up so that we get to big goal of interventions. Do we first check for what regions of the brain are involved in autistics, while we do a task.


Melancholy

Melancholy creeps upon my heart
A feeling, deep and dark, it starts
A longing for something lost
A sorrow that comes at any cost.

Joy is the hope that comes with the belief that anything is possible

Contemplation, one line a day. #MentalHealth


 

A tempest tossed

 

A tempest tossed


In a world of noise and chaos,

My mind is a storm, a tempest tossed.

The overwhelming sensation,

Meltdown, a state of frustration.


My senses heightened,

Sounds and lights, so brightened.

A cacophony of noise,

A confusion that destroys.


A feeling of impending doom.

As I try to find an escape room.


But there is no escape,

From this overwhelming state.

I am trapped in my mind,

A prisoner of my own fate.


Is there a glimmer of hope,

A lifeline to help me cope.

To regain control, and continue on

But in the middle of the meltdown, all that is long gone. 


Apraxia, dyspraxia, oral-motor apraxia, Aphasia

[Concepts in Sensorimotor Research]

Pretty much every SLP I've been to over the years, has mentioned these terms. So what exactly are they. 

Apraxia, dyspraxia, and oral-motor apraxia are all related to deficits in motor planning and execution, but they differ in their specific manifestations and underlying neural mechanisms.

Joy is the courage that comes with facing our fears and overcoming them

Contemplation, one line a day. #MentalHealth


 

Snow Flurry

Ice from the clouds, in a frozen rain
A snow flurry falls, with a icy refrain
Pebbles of spray, scatter with a sound
On the ground, they patter all around.

To college I must still go
LASR lab awaits me, with experiments to unfold
EEG and sMRI, knowledge to behold

Joy is the curiosity that comes with learning and growth

Contemplation, one line a day. #MentalHealth


 

Stimulus Value Gates Multisensory Integration

[Concepts in Sensorimotor Research]


Application to Autism. 

The advantage of a good filtering system is less getting overwhelmed by your sensory environment in the real world, but the disadvantage was that you could lose out on critical information. This almost automatic value-based filtering ability is, I think, an issue many autistics like me struggle with. But even with extensive experience, value-based filters could vary around task domain, context-specific or even things like predictability.  Which is still, i think, why we still face challenges in trying to understand what exactly is going on in the non-neurotypical populations. 




Bean, N. L., Stein, B. E., & Rowland, B. A. (2021). Stimulus value gates multisensory integration. European Journal of Neuroscience, 53(9), 3142-3159.



Summary of the paper we discussed in my Multisensory Integration seminar this week. 

Joy is the comfort that comes with being surrounded by loved ones

Contemplation, one line a day. #MentalHealth


 

Historic gains in disabled employment during the pandemic.



"The increase in work-from-home arrangements and greater flexibility in work hours seen during the height of the pandemic may have permanently opened new employment opportunities for people with disabilities"

The question is how do we sustain the gain in employment seen during the pandemic due to hybrid work. 

Joy is the sense of awe that comes with witnessing the miraculous

Contemplation, one line a day. #MentalHealth


 

A Dual Pronged Approach to Autism

I believe a dual pronged approach is needed for autism and both approaches can & needs to co-exist for many autistics. I have a leg in both groups and I need help on both. Its not an either-or. 

Money, careers and fame

Autism is a proven profit-making industry. Everything in autism space costs money; not just average money but real $$$$$$. It's profit with almost no accountability. If an autistic does not progress, it because they were not going to show progress anyway, you are too old, it's too late, so don't deserve solutions for your challenges or opportunities for your strengths. 

Autism is also a career-making industry, with books published, speeches of fancy words at conferences. We are surrounded by money-making "autism-expert-celebrities" though no one still has a clue. 

Joy is the inspiration that comes from the beauty of nature

Contemplation, one line a day. #MentalHealth


 

Two birds in Frost

From my breakfast window: 

Frost on the green winter grass
Glistening in the rays of the emerging sun
Tiny birds bask on the mighty tree stump
My small moment of awe today. 
What joy!!

-Hari Srinivasan
 
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We pay so much money for all the therapy in the autism space. Here is something that is completely and absolutely FREE. The best part is, no one can gatekeep and deny its access for you or decide you are "not a good-fit."


It's AWE Awe is beneficial to the mind and the body. And you don't have to travel far on an expensive vacation to experience awe. It's all around you - that blade of grass, that tall building you walk beneath, images from the James Webb telescope, our BFF God (forever, gonna outlast us all), or even that tiny ant on the ground.


Let's make use of and benefit from this 

FREE, ACCESSIBLE & BENEFICIAL RESOURCE of AWE 

by engaging in small moments of AWE everyday. 




Here's another post on A Moment of Awe - Birth of a Star



Joy is the sense of freedom that comes with being true to ourselves.

Contemplation, one line a day. #MentalHealth


 

The worst enchilada ever

 

Thick and rubbery Tortilla and not tasty filling. 
The worst ever enchilada ever at Chuy's Tex-Mex
@nashville, TN

Trapped in Turmoil


Trapped in Turmoil: SIB and Meltdown


In turmoil deep, the mind doth rage,

A tempest wild, within the cage.

A meltdown fierce, the self doth harm,

A trauma deep, the soul doth alarm.


With autism's veil, the mind doth cope,

But oft it strains, and seeks to elope.

In self-injury, it finds release,

But in the wake, a heart doth cease.


Oh autism, thy ways are hard,

For those who bear thy hidden card.

Urgent call for solutions anon,

And hold us close, with open mind.


#autismsolutions

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A poem on self-injurious behavior which is a reality for many autistics and is terribly traumatizing and battering for both the autistics and others around. We need solutions urgently. 


See this earlier post on SIB & Suicide Ideation in Autistics.

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


Joy is the kindness that comes with making a positive impact on others

Contemplation, one line a day. #MentalHealth


 

Be Supported to Joy


Be supported to Joy, is what we need.
Empowerment, Solutions are the seed.
For happiness, our hearts will plead.

True want in life, to live in joy. 
Can we wake up to Joy,
every single day of our lives?


Inspired by Cal Montgomery's FB post. I love your comment Cal. Disabled or not, I think that's all we ever want in life, to live in joy. 
(And thank you Cal, for your kind words about me!!)

Text on Cal's FB post says

I saw this when it came out. It was so beautiful. May we reach a future where every child can be supported to joy. Hari Srinivasan , for one, is working on it.

The link should be open-access.
"“Your kid IS everything!!!!!!” Carey tweeted. “Knox, you made my day. Your JOY gives me and everyone watching JOY. THANK YOU for reminding me why I wake up in the morning and do what I do. I love you.”
“She loves me?” [Knox] asked his mom. “Mariah Carey loves me?”"
Image: Black autistic boy singing with his whole body in front of his classmates.








 

Joy is the generosity that comes with giving from the heart

Contemplation, one line a day. #MentalHealth


 

Straddling Two Worlds

Straddling Two Worlds. 

I straddle two worlds, so different it seems,
One of disability, where challenges are extreme,
The other of acceptance, where belonging is key,
But finding a balance, is where I long to be.

Joy is the sense of accomplishment that comes with achieving our goal

Contemplation, one line a day. #MentalHealth


 

Happy Pongal

All set for Pongal this morning, complete with Tiruman and Veshti (traditional attire).
Happy Pongal everyone.  


Ready to make some noise with a plate and spoon along with cries of "Pongal O Pongal" when the clay pot of (newly harvested) cooked rice boils over.
Happy Pongal everyone.
A Pongal lunch spread. While farmers celebrate the rice harvest, we celebrate their hardwork by feasting!! Happy Pongal everyone.






Cal Football

Looking back to to this day
From 3 years back - Basketball Game at Haas Stadium, UC Berkeley
Not gone to any games at new school, but hope to in 2023. 


 

Joy is the serenity that comes from acceptance and letting go

Contemplation, one line a day. #MentalHealth


 

BioMedical Research is IMPORTANT for Autism.

BioMedical Research is IMPORTANT for Autism. 

I wish people stop conflating all Autism Biomedical Research as a cure; cure being something the disability rights movement has been against. Honestly no amount of biomedical research is going to reverse disability but it can go a long way in alleviating some of its more troubling symptoms and health issues. 

Reality is that  a majority of a the moderate-high support autistic individuals do have significant health issues, and other behavioral issues that significantly impact their quality of life. 

WE NEED solutions, including BIOMEDICAL ones and TECH ones in addition to changes in SOCIETAL MINDSET that is the main focus of the neurodiversity movement to address these issues.  

Shutting down all and any biomedical research is a disservice to the autism community. 

SIB's are real. 20% of autistics have SIB. Why are we not looking at SIBs at a physiological level. SIBs leave you battered and traumatized from personal experience. It is something I don't want to live with and I would gladly welcome any research on it. It's not about a CURE, its helping me life a less stressful life - my "pursuit of happiness." 

How can these autistics get to the level of demanding acceptance, inclusion in education and employment that the neurodiversity movement is asking for, if the very same group is denying the very things that gives them to the platform of equity.  

Why can't I have both - the biology to help with my challenges and the accommodations/inclusion of neurodiversity. 

Joy is the happiness that radiates from within and touches others

Contemplation, one line a day. #MentalHealth


 

Light Snowfall

Snowflakes dance in the air,
Falling softly, without a care.

But to college neuroscience I must go
Blood brain barriers and biophysiology today
I did not like walking in that cold

The cold bites, the wind moans.
Goosebumps, hard to withstand.
Though it's harsh, it's also grand.

Snow today

Another round of snow today. Just a light snowfall like a constant drizzle of rain all day. Had to go to college anyway. Had to walk from the parking lot to class and then move from one building to next for the next class.  It was gloomy at 4pm and quite cold at 36 F. 

Thunderstorm Haikus




Thunderstorm going on in Nashville. Tomorrow - Snow forecast (which may mean housebound as the city is not used to frequent snow). 

Not used to getting so many severe weather alerts on phone.

Severe Thunderstorm warning.... 60 mph wind gusts. Half Dollar size Hail... 1.25 inch. Damage to Vehicle is expected. Expect wind damage to roofs, siding and trees. For your protection move to an interior room on the lowest floor of a building.  

Luckily it stopped at just heavy rains with thunder and lightning. We missed the 13mph twister that devastated 50 miles of Selma, Alabama located just south of where we are. 

In the meantime, dry California, which is not used to rain, is getting battered with the relentless rain deluge, wind gusts, flooding, mudslides and sinkholes with seven consecutive storms starting just before the start of 2023. Flooding is inevitable when you get 1 month worth of rain falling in one day with a cumulative effect with storm after storm. The annual wildfires and the continued drought had left behind bare hills and parched soil, which aggravate the mudslides and floods. 

Climate change in action.






Serenity is the refuge from the chaos of the world.





- Hari Srinivasan

Autistics must not Stim

Autistics and stims. Please rethink.



Autistics MUST NOT stim.
Please rethink….
Stimming serves a purpose, its true
A coping mechanism, a way to soothe.
Calming nerves, reorganizing thoughts
A brush with Somatosensory body remapping

Engaging in stims... is quite typical for neurotypicals!!

Society accepts these stims with ease

Oh, the irony!!

         ... nonstop clicking of TV remote

         ... mindless paper doodling

         ... obsessive loop of tik-tok and youtube shorts

         ... head buried in phone when walking - accidents waiting to happen.


So should autistics be allowed to stim mindlessly too?

Au contraire,  it's not always a breeze.

Stimming is exhausting, Energy consuming

A switch on repeat, an obsessive desire.

Runaway motor movements. No pause or stop

Maddening. All consuming. Overwhelming


Autistics and stims. Please rethink.

Some stimming can be beneficial, it's true.

But cross a threshold, and it becomes OCD,

The cutoff is something you need to determine. 

Find balance in stimming, it's key,

To regulate emotions and bring inner peace.


Elusive Sleep

13% of autistics have sleep issues compared to just 3.7% in the general population (Burman et al., 2023). Sleep disturbances may be around initiating sleep, parasomnias, maintaining sleep, frequent nighttime awakening, unable to go back to sleep, daytime fatigue. Sleep disturbances worsen other challenges associates with autism and adds to anxiety and impulsivity.

We urgently need research that leads to translatable solutions.


Elusive Sleep. 


Eyes wide open, mind in a haze

Sleep does not come, no matter how I try

Tossing and turning, pacing the floor

Thoughts racing, as the night goes on


A battle lost, sleep remains gone

The night seems endless, my mind won't compose

The hours pass, and the night wears thin

But sleep remains elusive, just won't restart


Frustration and exhaustion sink deep,

I try to relax, but my body is tense

Dreams elude me, as the night wears on

A prisoner of my thoughts, until the dawn


I'm trapped in a cycle I can't win

A new day awaits, but for now, I cannot cope.



Grad School - Sem 2







Birth of a Star - a moment of Awe

Saw this James Webb telescope photo on FB today. My small moment of awe for today. 



Birth of a Star - A Moment of Awe

In the vast expanse of space
brilliant light begins to trace. 
Swirling clouds of gas and dust
birth of a star, a cosmic spark, 
work of art, moment of awe
beacon of trust, a new sun born

power and heat, through space and time
At the speed of light
Illuminates the darkness, divine
reminder of the mysteries yet to unfold.
find our place, in the cosmic light








Academic Reading

Question I was asked. 
Are you able to read with your eyes or do you use a reader or other device?

Print vs e-copy
My fine motor means I don't have good control with turning pages, one page at a time. So I do prefer a pdf or e-copy. Advantage of electronic, you can zoom in, which is useful for those tiny numbers/labels in graphs or diagrams. 

Reader Specifics
The actual reader does not matter. Use any text-speech software/reader that works for you. 

For my laptop, I use Natural Reader, which can both read out PDFs as well as act as a text-speech voice for conversations; necessary for someone with very limited talking ability like me. 

If you know of other text-speech or reader software for laptop/iPad/phone, please drop a comment below. 

To use or not use a Reader
Using the actual reader is context dependent and mood dependent for me. 

Text Heavy Material
Readers handle most text-based social science/humanities materials well. 

For text heavy material, text-speech software is definitely useful in unexpected ways. 

For instance, Disability Studies scholars like to use complex, almost convoluted language, which is ironical as it then becomes inaccessible to the very disabled population being discussed. In some of these papers, it can take many paras/pages to get to the point of what they are really talking about. Which can be a very impatient reading experience for someone like me. So you can let the text-speech just go on in the background and your mind will pick up the important points of what's said somewhere in there without having to listen to every word. 

Science/Math Books
While text to speech software is great with humanities and a majority of social sciences, they are not as good with science/math textbooks. It can only be a supplement at best for science.

1. Mangles and Winces. 
Calcium ions Ca+2 is "ca two plus," (which sounds like someone is choking) or "California two plus"

Na+ is "nah plus;" someone just negating their 'no' with a plus. 

2. Images
And when the text to speech encounters diagrams it wants to just rattle off any readable labels it finds, sometimes in random order,  and may even skip some, which is very confusing. Not all labels are readable either. 

You want to spend just that little extra time on diagrams and graphs and that needs to be done visually. 

When using a reader with science and math, you may need the book in front of you when trying to read it and follow along and wince every time it messes up.   

Maybe there are solutions out there that I'm yet unaware of. If you know of any, please leave a comment. 

Speed of Reader Output
In general I find that the text-voice-output is too slow. 

I like to play my read-aloud voice software anywhere from 3-5x (or greater) speed as I still find that my mind is racing faster than it, and I get impatient with its slowness (ADHD factor?). 

So sometimes it just easier for me to quickly visually scan the page (with my eyes) rather than wait for the voice to play catch up. I do tend to read fast. 

Is 3x-5x (or more) reader speed too fast?

I've been told in the past that a faster (3-5x) voice-speed was "too fast" for me to be able to learn. 
Au contraire!

When I went to the PD Soros conference in New York last fall, I met another PD Soros fellow at Harvard Law who is also blind. His screen reader plays at 5x speed or more. He explained that he was hearing at the speed of reading with the eyes. That is his ears were acting like his eyes. Apparently, that is perfectly normal in the blind community.

I was rather relieved to know that my asking for a faster text-voice speed is not so unusual after all. And maybe reading much faster like visual scanning is not unusual either. I know my sensory system is all over the place, maybe my senses are compensating too. 

Optimize Input-Output Time

While not every autistic is the same, I think it's worth exploring what makes for a more effective learning style for each person. Think of how can you optimize input-output balance with respect to time.

A slower output (due to oral motor apraxia, fine motor and other issues) does not have to translate into slower input (absorption of cognitive material). I think that's how I've been able to manage academics time-wise. My output is clumsy and slow but my input is pretty fast. Which is probably the reverse for NT peers. They type away at enviable speeds. 

Focus & Attention

A caveat of course is that my ADHD and OCD's means I do tend to get easily distracted; makes me concerned as I may miss things that are important. When something interests me, I will hear every word and see every pixel and grain.  But how can I listen/read/attend if a variety of OCDs is for instance, keeping my focus on that piece of lint on a student's jacket that is five feet away and which needs to be removed immediately; or my ADHD that keeps my mind keep flitting from one thought to next.

Some fellow PhD grad students mentioned recently that they like to listen to brown noise/ pink noise while they study for focus. While I've heard of white noise (which I don't like as  I find it adds to more static-noises in my head), this brown and pink noise is new to me. I think its worth exploring though. 

Context and Mood dependent
Autism does not look the same every hour and every day. It's not predictable what the next hour will look like. Sometimes I'm more visual, other days I'm more auditory and some days I need both. Sometimes my mind is tired and sluggish and in a brain fog mode. Lots of causes - maybe a barometric pressure change, med effects, weather, you body just not there. There are days, not much sinks in visually. A text-speech reader of books is definitely helpful in those times as a supplement to tired eyes and tired brain. It's one more modality of input which can definitely help. A slower reader speed can potentially help those times. 

Tweak what works for you for each situation, each hour, each day. 
There is a lot of tweaking and fine-tuning involved. 

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Tell me more about your learning style. What works. What does not. What tools do you use? What tools do you need? What more can be done?
Comment below or use the anonymous google form.