Uniquely Hari

First Nashville Snow

First snow in Nashville in my PhD journey at Vanderbilt University

Saw 4 deer (including a baby deer) early morning munching on twigs amongst the leafless snow laden trees. Apparently, deer like to hunker down to keep warm as the baby deer is doing.

28K folks without power in Nashville. Wind seems a common factor behind power cuts. In CA it was wind + wildfires, here its wind + snow. Surely electricity tech should have the wind part figured out by now instead of rinse repeat each year.

The power went off briefly at my place, but in that 15 mins, the inside temperature dropped by 1 degree. Fingers crossed to escape further power cuts. It is cold. Nice from the inside (its winter break) but it's -1F (-18 C) outside.

Ventured outside for a bit in yard,
windy, pretty and cold despite layers.

Snowfall

Snowfall in the darkness of night

Green grass out of sight in morning light

A blanket of winter white on the ground.

Leafless snow laden trees, a background

Undeterred deer saunter around

Munching twigs quite nonchalantly

Baby deer hunker on the ground... to keep warm

Brown fur contrasts on the white ground.

Fresh powder snow so pure and bright

A winter's delight for the eyes.

But when it hardens and turns to black ice

Beware, for it can be a dangerous drive.

Housebound for 3 days...Winter break, so ok.

Ethics Certification

Completing the Ethics Certification for IACC.

2022 UC Berkeley News Recap

I got a mention for the month of April in the 2022 UC Berkeley News Recap

https://news.berkeley.edu/2022/12/13/top-stories-from-2022/

Synesthesia and Autism

[Concepts in Sensorimotor Research]

Paper was for my Systems Neuroscience Class this semester was on Synesthesia and Autism.

(I got an A+ both for this essay and the final grade for the course.)

Instructor Feedback: you wrote an excellent essay! Your essay was engaging to read and provided compelling insight into synesthesia and autism. You succeeded to find intriguing papers at each level of understanding and used those references effectively. The concise way of writing reveals a true talent to distill the key messages from complex papers from (very) diverse fields and to use them for your argument. This was overall very impressive to see! you wrote an excellent essay ! Overall, we grade your essay with an A+ Keep up this good work.

Happy Platinum Birthday Judy

Wishing the remarkably bad-ass and quite amazing Judy Heumann a wonderful platinum birthday and many more to come.
(and an early 101th birthday greeting as well)
Short video of my greeting.

And make sure to see the longer The Heumann Perspective videos/ podcast tribute for her birthday. 

YouTube: https://youtu.be/VQdR4iJ4vfA (I'm at ~15:30)
Judy's Website: https://judithheumann.com/happy-75th-birthday-judy/
Spotify: https://tinyurl.com/56b34dwz
Apple Podcasts: https://tinyurl.com/wrk6dbfy

#disabilityrights #disabilitylaw

Media Mention

https://www.stridelearning.com/insights/how-can-schools-best-support-students-on-the-autism-spectrum.html

"In the book, I talk about this where I said that I'm more of a fan of the term high support needs and low support needs, because I tend to think that functioning labels really flatten the experience. Because if you call someone low functioning, what it does is it gives a lot of incentive to almost patronize them or to say they're not going to amount to much, so we don't need to invest that much in them. Whereas I think that if you call people high functioning, it almost kind of erases the very legitimate needs that they have. That binary doesn't do anybody good, I don't think. A perfect example that I used when I was writing this book is that I profile a woman by the name of Aria. That's a pseudonym.

She's married, she has kids, all that, but she had trouble graduating college and she had trouble finding work. Whereas there's this young man I profiled, his name is Hari Srinivasan. He is non-speaking. He just graduated from Berkeley a few months ago. He's now started graduate school at Vanderbilt University. At that point, when you think about those things, you have to ask yourself, "Okay, by those standards, who's the high functioning and who's the low functioning one?" You realize that that binary just is... It doesn't work."

In a Different Key

The webinar is up at https://www.youtube.com/watch?v=039eGaw2Q1w

Curious about the first person who was diagnosed with Autism!!

And what Autism can look like at 90?
And all manner of issues in between.

Watch the Webinar https://www.youtube.com/watch?v=039eGaw2Q1w

discussing critical issues in the film "In a different Key" hosted by the Frist Center for Autism & Innovation.

A very relevant question in the face of a society that is underprepared to meet the needs of the ever increasing number of autistic adults of today who will go onto becoming the aging autistic seniors of tomorrow.

This is one of my responses in the webinar.

About the movie I want to start with a comment. What I absolutely love about this movie was the utter genuineness of autism. And highlighting how others treat autistics is both DARKNESS and HOPE but there is a chance to BELONG.

To give you a perspective on what autism can look like, A little more about myself, On the disability front, I do have significant challenges that present multiple obstacles to my everyday living. Having limited communication skills is just the tip of the iceberg of these issues and I do need constant care for most aspects of daily living. On the other hand, I like to think I also have strengths which have carried me here all the way to graduate school where I hope to do meaningful research that contributes to knowledge and solutions in the autism space.

I happen to straddle aspects of two often seeming disparate worlds. So I will go to the HEART OF THE DEBATE.

It troubles me that there is such a divide between both worlds, when I think ultimately both worlds often have the same long term objective. I often feel we are wasting time and resources arguing with each other instead of getting real work done.

I don't think it's an either-or situation. That it has to be this model or it has to be that model, with no room for negotiation in between. That it is a pure Medical Model which says the solution lies in medicine alone or a pure Social Model which says society has to accept and accommodate us and nothing more needs to be done.

I agree that all of us need and yearn for that ULTIMATE GOAL OF BELONGING, like what we saw Donald Triplett was living and experiencing with his community in the movie. That is what the Social Model is. That is indeed the ultimate dream.

But do you think that same community would be as accepting and inclusive of an autistic adult who had constant meltdowns, who was displaying self-injurious behaviors, who had significant social anxiety and a range of health issues to boot. Guess who is left holding the baby, so to speak. It comes down again and again to the family to cope and manage the best they can in terms of finances, resources and time. No wonder those families ask, what after us.

Believe me, life is far from a happy optimistic picture for not just the families but for these autistics too. Even providers don’t want to work with us, let alone society. I have peers stuck at home because no adult day program will take them due to behaviors. Group housing does not want the adults with behaviors. So where do they go? I have peers who can have a dozen seizures a day. I have peers who have to be on the toilet all night due to gut problems. Sleep for just 2 hours a day means both the autistic and family are sleep-deprived. And this stuff does not magic away in adulthood. Providers just get harder to find as you age, as everyone wants an easy case. I’ve had providers quit on me after just 2 days. The happy life of Donald Triplett will slip further and further away.

I want and yearn for belonging but I’m also beginning to realize that perhaps there are some missing steps, almost like accommodations to how to help adults and kids with more significant challenges. Maybe those solutions lie in understanding physiology and in underlying health and medical issues.

Unfortunately any movement towards those solutions is deemed as the evil medical model and therefore taboo, which is very frustrating. We are conflating health issues with cure. We are getting sidetracked honestly with this debate. I don’t think anyone deserves to be engaged in self injurious behaviors and be experiencing extreme mood swings which make inclusion almost a non starter. No one deserves to wake up in intense gut pain like me in my younger days and have it be thought of as something that can only be addressed with behavior therapy. And when behavior therapy does not work, because you are looking at the wrong thing, you are pushed into an even worse special education classroom as then you are deemed in capable of improvement and inclusion. Any dream of belonging goes up in smoke.

If your body internally feels better, and you have less health issues it will reflect in outward happiness and a better quality of life. What’s wrong with finding solutions? What’s wrong with looking for solutions on multiple fronts. We can all agree our environment has gotten more toxic and it is causing more and more significant health issues world-wide. Maybe some of our solutions are somewhere in that arena. Just medicating us with psychotropics can’t be the only solution, which also have their own long term health effects. Proactively taking care of your health and well being is not pathologising. We have to research solutions, so that guys like me and others with more significant issues can also dream of moving about in society with ease, and have a chance at opportunities and belonging like Donald Triplett.

At the same time I am so incredibly amazed by the strengths and possibilities I see in the autistics who are able to get out there in society and be able to avail of opportunities. There is so much unlocked TALENT and potential which can bring about significant changes in the world. It is very critical for autism to also be looked at from a STRENGTHS-BASED perspective for that acceptance, inclusion and belonging piece.

In fact, I would like to see this TALENT HARNESSED IN FINDING SOLUTIONS for the ones with more significant issues, so they too have the opportunity of inclusion and belonging. Solutions lie in many fronts, from medical research to policy to societal attitudes to caregiving issues to inclusion. We also help solve the unemployment problem this way by making everyone across the spectrum, especially those who have the desire to work, become part of the solution for all. So it can be a win win for all.

I also want to point out to a Sins Invalid principle of Disability Justice which says when you address the needs of the most marginalized, you address the needs of all. In fact I would point out that I admire that Donald Triplett is a healthy active senior but I doubt if many of us will be as healthy. Current research seems to point to a lot of health issues we are going to have as aging seniors. If you get a chance read Alice Wong's piece on caregiving for her recent health crisis. Isn’t it better to find solutions on both health issues and caregiving now when we are able to do something about it rather than when we are all tottering senior citizens. So I want every autistic and family member and ally to think about how they can be part of the solution.

So it's almost like we have different degrees of needs and some of us have legs in many issues so we need solutions on many fronts. Why then are we having factions and fighting?

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The documentary "In a Different Key" is streaming on PBS https://www.pbs.org/show/different-key/)

Based on the Pulitzer Prize-nominated book of the same name by journalists Caren Zucker and John Donvan, IN A DIFFERENT KEY follows the mother of an autistic son as she finds and then befriends the first child ever diagnosed with autism – Donald Triplett, who still lives in the rural Mississippi town where he was born nearly 90 years ago.

The mother – co-director Caren Zucker – undertakes a journey seeking answers to the unknowable: will the non-autistic majority embrace and protect her child when she is no longer here?

Our Guy Donald