Hari Srinivasan - Diagnosed low functioning Berkeley student

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ASPartOfMe
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12 Jun 2019, 2:10 am

Experts called Hari ‘low-functioning’ for years. Then, he found his voice

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When Hari Srinivasan walks through crowded public spaces, he hears everything. Surround-sound snippets of conversation. A water fountain burbling. The crack of a skateboard slamming the concrete. An airplane roaring overhead. And he hears it all at once.

Sensory overload. Because his brain can’t filter the sounds. Still, all that language? Hari’s mind absorbs it. He understands perfectly and has since he was a toddler. But for years, he couldn’t speak words of his own. Instead, his mouth gave him uncontrolled outbursts — hums, snorts and random outbursts known as vocal stims. His hands danced. His fingers flicked the air. Doctors and behavioral experts called him low-functioning.

Then, at age 12, Hari emerged from his prison of silence. Suddenly, he had a voice. It came out of a computer speaker when he typed, robotic and stilted. It changed his life.

It’s been more than a decade since Hari broke through his silence. He’s 24 now. The phrases he can utter in his spoken voice are limited and likely always will be, though he works hard at it.

That’s because Hari has a form of autism that includes has apraxia, so his brain struggles to give his mouth, tongue, lips, and jaw the messages he needs to speak. But typing on a computer or iPad keyboard — one slow letter at a time — has blown his world wide open.

“I’m a student at UC Berkeley majoring in psychology and minoring in disability studies,” Hari relays through his computerized text-to-speech software.

Hari is not just a student. In his two years at UC Berkeley, he’s been teaching everyone around him about the vast and complex spectrum known as autism.

When we meet for the first time at Berkeley’s Dwinelle Hall, his mom, Arya Baskar, is there to help. His regular aide couldn’t make it. Hari’s mind can’t control his body, so he needs someone with him at all times.

When we meet for the first time at Berkeley’s Dwinelle Hall, his mom, Arya Baskar, is there to help. His regular aide couldn’t make it. Hari’s mind can’t control his body, so he needs someone with him at all times.

Hari’s lanky and strong with a runner’s physique. He’s got liquid brown eyes and a beautiful smile. On this day, he’s wearing campus swag, a blue and gold UC Berkeley T-shirt. We take the stairs to the second floor, past the murmurs and echoes of student conversations, in search of a quiet space to “talk.” Hari hums.

When he started typing, his words often came out like poems.

No intelligence possible you say
Inside the body, that acts a certain way
What pray should I tell you?
Big mistake to judge a book by its cover
Because if typing laboriously is your only communication outlet, poetry makes sense. You choose your words carefully. You don’t bother with punctuation. With poems, Hari explains, “you can capture a lot in just a few lines.”

Hari’s written hundreds of poems. And he’s won awards, including a big-deal teen writing contest that landed him in a published anthology. He accepted that one at Carnegie Hall. His entry — called “An Irrational Body, A Perfect Mind”— is a blend of essay and poetry on his experience emerging from silence.

I remember at 3
The world torn asunder around me
Helplessly hearing a diagnosis that perplexed me
What is this autism they all talk about?
The future turned dull and the grass turned brown
“I remember at 6,” the poem continues, “A parade of therapies surrounding me…”

Those included Applied Behavioral Analysis, known as ABA, the go-to treatment for autism. It’s essentially behavioral conditioning, enforced through repeated drills, often with flashcards. With ABA, right answers bring rewards and a high-pitched kind of affirming baby talk that drove Hari crazy.

He wanted to obey. But his body wouldn’t cooperate.

Hari says he knows ABA has helped a lot of autistic kids. But for someone like him — mentally intact but not able to communicate or control his body — the repetition, dumbed-down material, and constant failure was punishing.

I remember at 9
“Why does he act so,” the general cry
“This body does not reflect my mind,” my silent reply
Repeating lessons that bored me to death
The future so dark and the day turned night

Hari hums. Humming and singing — a melodic kind of chanting — are among his vocal stims. He says people with nonverbal autism stim to self-soothe, and sometimes, to drown out the chaos of outside noises.

When he presses play on his laptop, out comes a description of dull special ed placements in elementary school that never challenged his intellect: “I was just a package the district did not know what to do, with and tossed around from placement to placement.”

Hari’s parents had tried just about everything, even Ayurvedic treatments on the banks of a river in their native India.

Then, finally — a breakthrough.

I remember at 12
Happiness arose as my words were typed
Potential of this bright mind now sets in
Wonder at the difference of the body and the mind
The future so bright and the sky’s now blue
His family was living in Cupertino when his parents met Janna Woods at a seminar. She was a trainer in what’s called supported typing.

takes Hari nearly a minute and a half. His answer is short and clear. He plays it twice, for emphasis: “Tough before. Bliss later. Tough before. Bliss later.”

When I ask him to share a bit more, he looks right at me, and starts his answer in his spoken voice with a clear “yes.” Then he types: ”Janna turned my life around.”

Janna dyed her hair purple and wore lots of pink clothes. It’s how Hari remembers her. But she wasn’t around to see him get accepted to eight universities. Because in 2016, she died of cancer. Hari types some more: “Angel became a real angel.”

Once Hari could communicate, his family enrolled him in an accelerated academic program in an online public charter school, where he became high school valedictorian. At San Jose City College, he did original research on autism and its impact on Indian-American families in the Bay Area. He set his sights on Cal because it was a research institution. And, he says, because “UC Berkeley is also the birthplace of the disability rights movement.”

Before Hari could do any of this, though, he had to pick a voice. His software now offers Mike, Rod, and Will among the repertoire of U.S. English accents. But the pickings were slimmer then and, Hari and other autistic typers say, still leave a lot to be desired. So like a lot of non-speaking typers, he picked the Ryan voice. He isn’t crazy about Ryan.

“The only voice with a male American accent that sounds reasonably OK is the Ryan voice,” he explains, “so all us typers sound exactly the same.”

That goes for Hari’s good friend David Teplitz. They met at a support group called Loud Talking Fingers, and both wound up accepted to UC Berkeley at the same time. They broke ground, becoming the first students with nonverbal autism to attend the esteemed university. The two of them meet for lunch and go on hikes (with their aides). And they talk, Ryan-voice-to Ryan-voice, something Hari hopes will change someday soon.

“The ability to communicate made me uniquely me,” he tells me, “and I want a voice that is also uniquely me.”

After one semester at UC Berkeley Hari became a columnist for the Daily Cal, the student newspaper. Now he’s a staff writer. So he’s got a bully pulpit to advocate for students with disabilities. He’s on the board of UC Berkeley’s autism awareness organization. And he recently interviewed a bunch of fellow autistic students for a story on the huge neurodiversity of autism spectrum disorder. The assumption that people with autism lack empathy? That’s the stereotype that riles him the most. For Hari and lots of others, the opposite is true.

When you have sensory dysfunction, you are overly tuned to the environment, which includes all the emotions of the people you are interacting with — even the unspoken emotions on their part,” he wrote. “The result can be an emotional roller-coaster ride for me as I try to deal with all this bombardment of information in addition to the words.”

That bombardment is with him every day — words and sounds and colors and textures all alive and roiling together. It’s intoxicating and really anxiety provoking all at once. Walking through crowded Sproul plaza can feel almost like an acid trip.

"My senses cross over where my eyes can smell and feel, not just see,” he wrote in a column titled “Sensory Walkabout.” My eyes can feel the texture of the blue canvas that cover the booths. The white text on the blue canvas feels abrasive on the cool blue. And the canvas moves like a sine curve in the wind."

Despite all Hari’s anxiety about crowds and new environments, this semester, he and three neurotypical students are co-teaching a one-unit class on autism spectrum disorders. Class starts in 15 minutes. But before we go, Hari recites a poem he’s been practicing — in his spoken voice.

Poetry is like a river
.. it flows gently DIP
.. it crashes over boulders in its path
.. it slows to a trickle
.. it pauses and turns the bend
In the end
.. it merges into the depths of the sea

Outside the classroom, the hallway is filling up with students. It’s chaotic and Hari’s dealing with it in his own way. His vocal stims get louder, and he yanks his T-shirt up over his face. But his mom’s right there, nudging him to pull it back down.

Inside the classroom, the theme is careers in the autism service world. Hari hits play on the part of his presentation that deals with ABA, Applied Behavioral Analysis, explaining that it’s considered “the gold standard” in autism treatments because it’s “evidence-based.” But for students like himself, he explains in his critique, it’s a poor fit.

“The politics of this evidenced-based treatment is that professionals equate to lack of progress in ABA to an inability to learn,” he tells the class.

Hari’s presentation also mentions Cognitive Behavioral Therapy — or CBT. A student asks what exactly that is. About five minutes later, Hari’s answer comes booming out of his computer speaker: “CBT is reframing your thought process so it’s more positive.”

It’s a little jarring because by now the class is discussing something else. But one of Hari’s co-facilitators makes sure the students heard what Hari had to say. Hari experiences those awkward lags whenever he takes part in class discussion. But he says he’s not going to let them shut him up. He’s at Cal to discuss and to learn. So he just has to press on.

Class ends and the students drift out, saying their goodbyes. Hari’s amped. He runs down the stairs. Outside Dwinelle Hall, he darts ahead of us. It’s a spring evening. The golden hour. Birds are chirping. Students are strolling and talking.

And Hari Srinivasan is almost dancing.


It really is a spectrum The neurodiversity of autism at UC Berkeley by Hari Srinivasan

Hari is one busy person but I hope one day he will join WP, Hari can teach us a lot.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

"The lunatics have taken over the asylum" - The Specials


cyberdad
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13 Jun 2019, 6:37 am

sorry is this an advertisement for ABA?



ASPartOfMe
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13 Jun 2019, 7:38 am

cyberdad wrote:
sorry is this an advertisement for ABA?

Nope, Hari said it did not work for him.


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cyberdad
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13 Jun 2019, 9:03 am

good for him!



jimmy m
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13 Jun 2019, 10:47 am

cyberdad wrote:
sorry is this an advertisement for ABA?


Contained in the article:
Quote:
Inside the classroom, the theme is careers in the autism service world. Hari hits play on the part of his presentation that deals with ABA, Applied Behavioral Analysis, explaining that it’s considered “the gold standard” in autism treatments because it’s “evidence-based.” But for students like himself, he explains in his critique, it’s a poor fit.

“The politics of this evidenced-based treatment is that professionals equate to lack of progress in ABA to an inability to learn,” he tells the class.


One of the most interesting things about this article is it represents a case where a low functioning (non verbal) autistic has transitioned into a high functioning autistic. In order for ASD to have any merit, any merit at all, there has to be a spectrum. And for the concept of therapy to be meaningful, there must be a pathway for LFA and MFA's to be able to transition into HFAs.



cyberdad
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13 Jun 2019, 5:40 pm

jimmy m wrote:
And for the concept of therapy to be meaningful, there must be a pathway for LFA and MFA's to be able to transition into HFAs.

Like Temple Grandin



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13 Jun 2019, 8:38 pm

cyberdad wrote:
jimmy m wrote:
And for the concept of therapy to be meaningful, there must be a pathway for LFA and MFA's to be able to transition into HFAs.

Like Temple Grandin


Precisely!