AHKN - Chats (Shital & Ashish: part 1)

We launched an offshoot to the AHKN series, called Chats, where we speak to disability families, friends and allies about their journeys and lived experiences. Just simple, honest conversations that demystify spectrum conditions. 

Releasing it simultaneously on IG and Youtube. With this addendum to AHKN we hope to spread awareness and sensitise people on conditions they may have no idea about. 

This is part 1 of 8 short sub 5-minute episodes. We're going to do a similar set of videos with Mr and Mrs Tiwari, as well as Gopika Kapoor. 

The Vir Kapoor blog is pending. Might upload it this week, or probably after the episode goes up.

Anyway, here's AHKN - Chats w/ Ashish & Shital (part 1) - 

Vir Kapoor on Alag Hain Kam Nahi

3rd ND meeting this month, 4th episode shoot. 

Met Vir Kapoor, son of Gopika Kapoor. Quite an interesting day. Relatively quiet day also. 

I've read about Vir in Gopika's book Beyond the Blue, so I know a little bit about him already.

IRL, he's shy and prefers to be by himself. But he's also very excited to bring you into his world. First he shows us this big puzzle that he's putting together, it's a wide-angle drone picture of Cinque Terre. Every time I read about Vir doing puzzles I pictured those 20 or 30-piece things that I used to do. But this was a giant, 200-piece puzzle that he was putting together. I ask him how do you do it? He doesn't reply. I tell him you just know where each piece goes, don't you, and he looks at me and said yes. Lol. 

Then he shows us his Meccano creations. A cable car, a windmill, an RC car, a radio... all things he's built from scratch. And things he's excited to show us. With his radio he's just changing channels, with his windmill he's showing us how the blades spin. I pick up a small aircraft model from his shelf and I see him quickly look at me and then look away. So I ask if I'm allowed to touch his things. He wants to be nice, so he quickly says yes. I tell him it's okay to say no, I'll back off. And immediately he changes his answer to no. We all laugh. 

We go down for a bit, and he shows me how well he cycles. We play with Jazz for a bit, until it starts to rain and we have to come back up. Every time I ask him something that's vague, he taps his finger on his chin to show he's thinking. Again, we take ample breaks, and every time Aditi or I pick up on a sensory overload we ask if he wants a break and he always says yes. 

I spot all these board games in his room and ask him which one he wants to play. He chooses snakes & ladders, so we play a game. It's relatively quiet, we're rolling the dice and taking our turns. Vir wins, and we all give him hi-fives. 

It feels like I already know Vir. Not so much because of the book, but because his face seems very familiar. Vir is extremely accommodating with us, and every time I tell him he can be frank and tell us to go away if he's getting irritated, he says no, he's fine and we can be friends. 

Since he's super into gadgets and technology, I spot him looking at my camera rig. I almost want to ask him if he wants to check it out, maybe take a couple shots. But then I realize I wouldn't have anything to shoot that with. Maybe another time we will go back and make him shoot something that we can put up on the channel? If he's into it, sure. 

Vir takes us through his family photo albums. He laughs at times because he's made a face in some pictures, or worn a wig, or someone's doing something funny. He shows us his distant relatives, his whole family, everyone, in a quiet voice... just simply saying, "my nani, my buas, my chachu, my cousins..." 

After lunch we sit and chat with Gopika and Gayatri. She speaks about their relationship and how protective she is of Vir. They like watching movies together, sometimes they do Wordle. 

The nicest part is when it's time for Vir's afternoon nap. Some time between 3 pm and 4 pm Vir comes out and asks if we're done with his portions so he can sleep. Not yet, I tell him, but - not wanting to disrupt his schedule - I say that if he wants to sleep he can. 

He thinks for a split second, then says, no it's okay, he'll wait. 

Vir's world is pretty interesting. At 17 he does Meccano and Lego already. He's learning how to code, he bakes, and has full plans to become a coder-model. He likes to dance, and he's part of a choir too. There's an evident creative spark in him. And funny things make him laugh, like seeing a picture of a snake wearing glasses or Jazz chewing on our tripod. 

Alag Hain Kam Nahi - episode 2

So much is happening, haven't been able to take 5 mins out and post about Risshan's episode. 

We released it last Friday, and it got a pretty good response straight off the bat. Slightly over 500 views, which is quite good for the 2nd video of a new IP on a new channel. 

Ashish made a post on LI, which Suresh Menon - among a few others - ended up sharing. Someone from Disney+ Hotstar loved it, and a few other prominent people from the industry. Ashish said he was getting 'universally good' messages about the episode, and before that he said, 'Rula dala bencho' after watching the first cut. 

Again, can't say this enough, quite proud of ourselves for putting this out. For the way the story turned out, and for the record time (4 days) in which we transcoded, edited, made music for, graded and mastered the film. It's a 20-minute film for crying out loud.

Anyway, here it is. Watch and make of it what you will :).

Beyond the Blue - Gopika Kapoor

 This is such a beautiful, easy-read book. It's the self-told story of autism mom Gopika Kapoor navigating her journey through her son's autism discovery. It's honest, perfectly paced, and informative in a way that doesn't get too overwhelming. There's a line in the book that reads, "To the autistic child, work is play and play is work." I read it and immediately connect, thinking to myself the word 'child' can just as easily be taken out of that sentence and substituted with adult. Because to me too, work is way more fun and easy to do than attending parties or making small talk with peers online, which seems the easier and more interesting thing to be doing. 

The stages of autism discovery in a child and subsequently its effect on the family is beautifully chronicled. Gopika makes autism easy to understand, and talks about all the wonderful work she's done within the community for other autism parents. The best part, she speaks about it from a mother's perspective, and it kind of painted a picture of what it must've been like for my mother bringing me up. Because I distinctly remember periods of high stress, social isolation, and her feeling guilty about wanting to take a break from having to run after me. A formal diagnosis and early intervention would've helped, but maybe the stigma would've been too overwhelming to deal with? Don't know. 

Gopika says that if you Google autism diagnosis and marriage, you'll find that over 80 per cent of the couples who've had a positive diagnosis with their child are divorced. Circles back to my childhood, 9th grade specifically, when the fights were getting more and more intense by the day. Then January 26th, the day of the Bhuj earthquake, when everything fell apart, and within days mum had left the house. I had no idea why this was, but somewhere deep down I knew I had a role to play in it. So many times in the past few years I'd behaved in ways that had annoyed either one of my parents. Because of which the other fought with them. But it's not like I could help behaving that way, either, which was the most confounding part of it all. 

Finished the book. Lots of good information, derived from personal experience. Also, gives a uniquely Indian perspective on things, so that's the best part. Also, it's got a Hindi translation, so really want to figure out a way to hand it to autism moms up North whenever we go shoot their stories. 

DD apartment of infinite loops edition

I've gone apartment hunting. It's a place in Juhu. Pretty dope interiors. There's no security guard or anyone at the entrance of the building, you can go straight up to the flat. 

I open the front door and walk right in. I start looking around, expecting someone to come greet me. A man enters the room. It's not the hall. This is some kind of holding area or lobby, with a bedroom to the left and a door that probably leads to the hall in the front. On the right there's another door, which I can't figure where it goes. This is easily a 4 or even 5 bhk. 

The man shows me around. He's wearing a necklace of some kind, with big, maroon, rectangular stones. He takes me through the door from which he entered earlier, and it does  turn out to be the way to the living room, which is huge. There's a couch in the center, and next to it a big pillar. Curios lie neatly arranged all over the place, and the room has a very modern and at the same time rustic feel to it. Off to the left is the master bedroom, with a sprawling balcony overlooking a lush green playground. I look down upon the road and figure it's one of those quiet bylanes in Juhu. 

His wife comes by, and there's some kind of a fight (which I don't remember). At the end of the fight, she wins, and leaves with his necklace, while the entire time I'm thinking it's the apartment she's fighting over. Then I realise this entire thing has played out exactly like someone once told me it would. I don't know who, and the harder I think the more the name slips away from my grasp. I walk around the house and it's totally empty now. The husband is dead and the wife has taken the necklace and disappeared. 

I go out through the main door, and enter again, and the whole scenario with the man and his wife coming plays out in the same order all over again. So it turns out to be some kind of recorded virtual sequence that is getting triggered every time someone enters the house.  

Across the lobby there's another apartment in which they're conducting a deal to sell the place, and my mother and father are making an offer. 

Mom and dad come out, and they're laughing with the broker saying the rate they've offered is okay for the place. Dad and I take a tour of the apartment together, and he says very happily that they're willing to let go of it for 3 cr, which is damn cheap for Juhu. And if we haggle a bit more, they might even come down to 2.7 cr. I'm thinking there's something suspect about the place,.if it's going for this cheap, but I can't tell what it is. But I'm getting some strange vibes, I think. 

I'm showing papa around the bedroom, and he loves it too. We see the master bedroom toilet and it's like a long train compartment with the pot on one side and the shower on the other, and I tell papa see how big the bathroom is. 

Only one thing, I wonder. If the sequence with the husband-wife is virtual then no one's actually been living here. So why is the goddamn bathroom floor wet? 

Made a sketch of the floor plan this time:

On a side note, don't know why I see so many random apartments in my dreams. Maybe I'll do one whole thing on the floor plans of my dream houses. Like not dream houses dream houses, but houses from my dreams. Lol. 

Risshan Patil on Alag Hain Kam Nahi

Spent last Sunday with Risshan Patil. What a beautiful day. What a talented soul. 

The day went by like a musical. 

The team spent the last three days editing the cut. There were smiles all round the studio the whole time we were watching the rushes. Good fun. 

We had an offline lock today. Not like there's a client to get approvals from, but still. Tomorrow's grade and sound design day, which is really the fun part. 

I mean, mastering is so fun. Making sure everything's on point, and all the levels are precise, and the right reverb's on the right channel, and the right amount of EQ-ing on tracks and the right colour on the right shot. 

It's just a bunch of things done the right way. 

'Looking forward', as the Delhiites would sign off.

I love my life. And I love my wife. 

Thinking in Pictures

 The Temple Grandin autobiography Thinking In Pictures kind of picks up around the same time period as NeuroTribes leaves off. 

Among other things, it helps validate a lot of speculations made by earlier scientists about the different neural makeup of autistic brains. For starters, the white matter in the frontal cortex of the brain (which kind of functions like the main command centre where all neurons come and converge) actually isn't wired up like it is in NT brains. 

Some wires are mixed up and some are just not connected to the right parts of the brain. Which actually manifests in chaos because unusual parts of the brain get fired up for things they have nothing to do with. Really explains a lot. I'll read through those specific parts once again and draw up a simple image of the brain with its different parts so that the neurology is easier to explain. 

Next she talks about three very broad types of autistic brains: 

1. Design/ visual: this is Grandin's type 

2. Music/ math/ pattern: 

3. Verbal/ logical: this I suspect is me, although I might be a little bit of a mix of all types.  

She clarifies that the continuum is actually more of a circle and not linear as perceived normally. This is quite a commonly held belief, but it remains to be seen until when considering Grandin also says very soon in the future we're going to be able to determine exactly what kind of autistic brain a person has through MRI scans alone. 

Grandin says the autism continuum comprises two extremes - cognitive deficit and sensory deficit. On this continuum, the cognitive deficit end is the high-functioning one and the sensory-deficit end is the low-functioning one. This is by no means a measure of the level of potential improvement that a young person with autism can demonstrate, as that can happen to people at any point on the spectrum. 

Different neural clusters in the brain are responsible for different functions. Even with a cognitive function like recognition, the neural cluster that helps recognise people's faces is different from the one that helps in the recognition of objects. This is what makes brain wiring so complicated to understand. Simon Baron-Cohen of Cambridge University has identified two types of emotional brain types: empathisers and systemizers. NTs are typically empathisers and ASDs are systemizers. 

The whole thing really comes down to cognition and sensory differences. Autistics are sensorily predisposed to sensitivities and other abnormalities that make them respond differently to situations than neurotypical people. Also, atypical neurological wiring usually means they don't experience the full gamut of human emotion that NTs do. For me, too, an absurd kind of fear was the most pervasive emotion around 2009 when I started working my first job. Still remember being so lost at the office, and thinking it was the job I hated when in reality it was just maybe the sudden change in atmosphere (new office, new people, new responsibilities), or the fact that the job didn't only involve writing (which I loved) but interacting with all kinds of people (which I'm way more comfortable with now). Grandin also recalls a specific time in her life when an intense fear and anger gripped her every time she anticipated being bullied. She talks about feeling an intense fear walking through college hallways thinking someone would call her names or tease her. I have had the exact same fears at various points, although I might have got over them in college, I think. 

So anyway, fear, anger and sadness are the only emotions experienced by one of the autistic people Grandin talks about. Some emotions they feel are an overlap of these three emotions, but nothing more than this, or even slightly more nuanced. Empathy is tricky too, because there's different kinds such as emotional empathy and visual empathy, and some autistics are better at visual empathy (me) while NTs typically have emotional empathy. Autistics - especially Asperger's - are also known to have a deficiency of mirror circuits, which help you relate to other people's experiences. This is why they may have trouble putting themselves into someone else's shoes. NTs connect through emotions, which autistics cannot relate to as their strong suit is logic and intellect. Even then, through therapy, physical pressure (to treat sensitive touch) and patience, autistics can be rehabilitated if therapy is introduced in the right time window. I also find myself kind of relating with not understanding very complex relationships - Grandin says she's never been able to grasp how people live with the whole "love-hate" dynamic. It's quite strange to me as well. 

The application of physical pressure as a means to work on the oversensitivity of sensory faculties is another big revelation. Always wondered why I like it when someone sits or sleeps on my hand (or applies pressure to my extremities). Helps ease the brain into becoming more comfortable with touch and physical contact. It's not like the autistic brain is averse to touch, it's that the brain hasn't had much of it and doesn't know what to make of it, and so perceives it as a threat. 

Fixations - things/ subjects that autistics latch on to with an obsessive interest. In my case: cameras, music equipment (MIDI synthesisers, DJ consoles, plug-ins), editing & grading software, trains and cars (formerly). I could've really done something in trains, if I'd pursued it. 

Grandin has had a moral upbringing (much like mine) and, because she doesn't have a strong social intuition, she splits up rules into three broad categories: 

1. Really bad: objectively bad

2. Sins of the system: harsh consequences, as bad within a particular framework (smoking & sex in school)

3. Illegal but not bad: speeding, illegal parking

I think this is such a smart way of categorizing what rules are okay to break and what aren't, because some rules are invariably going to be (and are) broken. So instead of treating all rules similarly, a smarter (possibly NT) way would be to figure out what's okay to do and what isn't. Now that I think about it, rule setters expect you to be breaking some of the more minor rules, and when you don't do it, that's weird. 

Autistics have a hard time finding work because companies are "turned off by our odd speech patterns, direct manner and funny mannerisms." A big 4 company rejected me twice in a span of three years. Both times in the final rounds. Some interviews seemed to go really well, where the interviewees seemed to be decent people, but some interviewees were just grade A assholes. It seemed they weren't even looking for an answer to their questions, it was more just a power play tactic to confuse you so you seem clueless. Makes sense why there's so many qualified autistics but very few that have jobs. How are they even expected to rise up the corporate ladder? 

Having a hypervigilant nervous system. Fear is the default emotion in autistics. 

The limbic system processes feelings and emotions. The cortex makes sense of those emotions and figures out how to express them. Usually the size of the cortex will determine how intelligently a mammal is able to express themselves. 

Why is the autistic such a threat to society? Because mediocrity is passed off as awesome and people are bullied by the media into either buying it or being the odd ones out. Autistics will never encourage mediocrity due to their high standards and attention to detail. Plus their disregard for social acceptance and conformity will never make them want to become part of a mass movement they don't identify with. 

Biochemistry works in some cases, but meds need to be carefully administered and progress constantly monitored. The types of neurotransmitters: norepinephrine, dopamine, serotonin, endorphins and GABA. 

Most great thinkers with Asperger's - Einstein, Darwin and Wagner included - were mediocre students. According to Grandin, Einstein - also a visual thinker like her - was able to put himself in the path of light (literally envisioning himself as a photon) and translate his findings into mathematical equations. That was his genius. As a student, he was poor at basic math and quite prone to sensory jumbling (as per firsthand reports from some of his students, he would drift off into lengthy segues midway through proving one theorem during his lectures). Another thing they had in common was complete absence of speech until age three or four. 

It is quite common to see autistics (Asperger's) excel in one field while their skills may seem particularly compromised in a few others. Also, Grandin hypothesizes that quite literally, the size of the different areas of the human brain play a huge role in determining which skill a person may have since birth (talent) or what general area a person is more predisposed toward. 

Grandin's concept of a God. 

The last chapter of Thinking In Pictures deals with Grandin's concept of God. It's unique, because her logic-centered mind demands a logical explanation for abstract concepts. On a side note - through some of my recent readings (the writings of Tony Attwood that I came across in an article on Autcollab) I've found that some autistics/ schizophrenics are more inclined towards the abstract rather than the concrete. That there's a 'quasi-philosophical' quality to the writings of autistics and an abstract mode of talking, which he calls 'pseudo-philosophical thought disorder'. I don't agree with him one bit, and in fact find Grandin's concept of God quite similar to mine. She likens the concept to quantum theory. To her, it's an energy, an assimilation of subatomic particles that mesh together to form an energy consciousness that controls or rather defines all visible and invisible order. 

This concept assimilates with the Hindu concept of karma (the power of human deed, which I find to be one of the most absolute truths of the universe). Early on in the book Grandin mentions how a lot of autistics are inherently inclined to believe in an afterlife, their egos or the way they perceive energy intuitively tells them that life passes on over into another form after human death. Grandin says that bad deeds have the capacity to disturb the mesh of particles in a way that one set connected to another through that very mesh - at some other point in time though - stand to get disturbed by that action and present a negative outcome at another time. This is a far more complex (and undoubtedly visual) way of imagining this concept. But I like the sound of it. 

I have always believed that we're way too young as a species to be able to explain some of the things that happen in this world. While science has many explanations, it doesn't have all of them. Religion must evolve exactly as science does, to a point where the two find a point to merge and our understanding of things reaches its zenith. 

Lovely book overall. 

1 month to Spectrum

So something decently big happened for us today. A mid-size influencer posted about us on their stories, which drove a decent amount of traction back to our IG profile. That led to someone from YouTube noticing our content and writing a very sweet DM to us saying they loved our content and would be glad to assist with any problems we might ever have on the platform.

Of course we wrote back almost immediately thanking them and expressing gratitude for taking interest in the world of neurodiversity. Then we capitalized on the traction and did something even bolder that was totally out of our comfort zone. We had recorded a short parody version of the 'Congratulations & celebrations' song by Cliff Richard, changing the lyrics to 'Procrastination & delegation'. Basically turned it into a song about ADHD diagnosis. We shot a very quick video to the 20-second parody track and put it up on IG. 

We had already climbed up by 12 followers since this morning, and I think IG decided that was enough for the day, because the funny reel did not do anything to our profile at all. But Aditi says it picks up with time, so we'll just wait and see. 

I love Aditi's calm demeanour.

Anyway, on the WA group we have been added to, someone mentioned two kickass concepts today:

1. Disabled rest

2. Self-made vs Community-made

1. Disabled rest is a counter-culture movement to negate the ill effects of the hustle culture. I resonate with it 100% given how both Aditi and I need time to recharge after even the smallest bit of overwhelm. 

2. Self-made vs community-made is essentially specifically for the disabled culture. Having a community is so important to thrive, none of us is ever self-made. We're all who we are because of the communities around us. 

That's about it. Good day today, tiring week overall. 

Came across this gem and want to remember it forever

"As Rubin explains it, Murakami works not because he has an idea for a book, but because he feels compelled to write. It’s suggested that he often sits at his desk, writing whatever comes to mind, until the glimmerings of a story appear. Those who are familiar with Murakami’s novels can see this process at work."

I could say I feel a certain compulsion to be making videos all the time. I might not have an idea all the time, but holding up a camera to someone's face and having a conversation with them IS the idea itself. 

"The more I read Murakami, the less his work resembles genius, and the more it comes to resemble a symptom of autism or obsessive compulsion."

Apparently Jay Rubin, Murakami's long-time translator, said something of the sort in his biography Haruki Murakami and the Music of Words.

On another note - Murakami feels detached from his Japanese roots. I'm kind of the same way. Could this be another autistic trait? 

DD arms in Iran edition

Me and Nikhil decide to smuggle bombs and arms out of Iran and into India on a jetliner. Our original plan is not to do this on a commercial carrier but for some reason that doesn't work out, so we have no choice.

We bring all the ammunition to the airport in a taxicab. The taxi guy is nice at first, but when he finds out we've got arms he gets livid. There's three of us (I forget who the third guy is), and the taxi driver makes the third guy kneel and holds one of the rifles up to his face. He squeezes the trigger in anger because we didn't inform him we were carrying arms in his cab. But he says he also wants to ensure the bullet chamber is empty.

Up until the very last moment I'm not sure about this stupid idea of smuggling arms, but somehow it must be done. Inside the airport, third guy leaves us and Nikhil and I are figuring out ways to get the arms on the airplane. Nikhil disappears for a while, and comes back some time later saying he's asked our cab driver to take the arms straight up to the flight along with our passports. 

He asks me to be cool and just walk straight through immigration. If we're cool, we won't get caught. 

I don't know how all this will be done, but I agree anyway. There's this camera type system to which you need to show your passport as you enter the check-in area. Nervously we walk down the pathway lined by Iranian immigration officers suspiciously scanning everyone who's coming in. I'm trying hard to blend in and be cool, but it's very difficult. Just then, out of nowhere, one officer comes and grabs me by the arm. "Where are you going?" he asks me. I start crying almost immediately. Another officer grabs Nikhil and takes him away. 

I say to the officer I'm a journalist, and am in Iran only to do a story. The officer asks if the story is on how we travelled back from Iran to India considering there aren't any direct flights between the two countries (or something)? I'm already repenting getting into this, but also thinking it's too late now. If these guys find out what we've been up to, we're screwed. 

The officer seems to be easing up looking at my face, and I'm hoping he doesn't ask for my passport seeing as I don't have it on me. Just then Nikhil appears out of nowhere with our passports and puts them down on a table in front of the officers who caught us. I'm so relieved but also confused about where the arms might have gone. The officers look at our passports and let us go. We have to exit the airport as soon as possible. I'm super glad we've aborted the mission. 

As we're driving out from the airport, a bunch of kids from a nearby village look at us and run alongside our car with happy faces. I'm thinking we need to get out of here by flight. But I don't know where the arms are, and Nikhil won't tell me. I'm thinking if the authorities find out that the arms are already on the flight, we're screwed. But if the flight (probably a different one) takes off before that, then we're safe. It all depends on what that taxicab driver did with them before he disappeared. 

I'm left wondering.