From India's largest newsroom, I'm Arun George and this is the
Times of India podcast. What is your typical stem thing?
Like what do you do playing with nails and playing with my
eyebrows? I do this.
I clench my palms. That's Alab Debur and a guest in
a video talking about stems. For many, it's an unfamiliar
term. Stems are self stimulating
methods that could be done for enjoyment or visual stimulation,
or even as a method to deal with anxiety in a distressing
environment. It's a topic that features
frequently in the videos made by Alab and his partner Aditi
Gangrade on their YouTube channel called Much Much Media.
Their videos chronicle the lives of people who are neurodivergent
and how they deal with the world.
And unlike popular culture, which often only highlights how
a neurodivergent person's behavior is different, these
videos take a more empathetic look and give neurotypical
people some much needed insight into the lives of neurodivergent
individuals and their passions. Neurodivergent, at its heart, is
a term used for people who interact and experience the
world differently than others. The term is used in the context
of the autism spectrum and other neurological conditions like
ADHD and some learning disabilities.
And as Alap also explains in today's episode, because it's a
spectrum, No2 neurodivergent people present the same way.
While the depiction of autism in popular culture often focuses on
their inability to deal with the world, there's now a concerted
push to show what people on the spectrum can do as well.
Well known public figures like actor Anthony Hopkins,
billionaire Elon Musk and singer Sia are among those who've said
that they are on the spectrum and have spoken about how it has
influenced their lives and work. Alab Debur worked in multiple
media houses before Co founding much much media.
His starting the channel was also fueled by the fact that he
was around 30 when he found out that he was autistic.
In today's episode he talks with me about how the realization
changed his life and what are the biggest learnings from
chronicling the lives of neurodivergent people across the
country. To start with, Alab says that he
grew up being called an introvert, given his behavior
around people. So I've been a media
professional all my life and what that entails is.
A lot of socializing, you know, meeting people, especially in
the jobs that I have done, which is in the music industry, in
production, it entails a lot of meeting people.
It entails, you know, going out and hanging out with them, going
to parties. Sometimes it also entail public
speaking and meeting new people, lots of strangers.
And these things I've always been a little uncomfortable with
and I I've always ascribed my discomfort with these things to
being socially awkward. And it's it's always been
something that I just just, you know, put away and said each
alone. I'm an introvert.
And therefore, I'm, I'm asocial. And therefore, you know, these
things come to me with great difficulty growing up in India.
There is also so little vocabulary around any of these
things. There's literally nothing.
You're not taught any of these things in school.
Of course, you don't have conversations around any of
these subjects with your parents, with your peers.
So everything is just either a re introvert hair, yato ye or
extra social hair, or else he's just, you know, likes to be
aloof and by himself. In 2019, I chose to go in for
therapy after some years of anxiety, chronic anxiety rising
from jobs, rising from things happening in my personal life,
etcetera. During therapy, I Love says
there was no mention of neurodivergent.
It was during the lockdown of 20/20, which was imposed to stop
the spread of COVID-19, that he began to explore the topic of
neurodivergence through various books and videos.
These, he says, opened his eyes to live the experiences of
others, which in turn resulted in him looking at his own
experiences more closely. I think as men we don't really
introspect much and. And try to really figure out
what it is that we are feeling. A lot of times we just tend to
put it away thinking, you know, that's that's not where your
mind is supposed to go. Those topics are not worth
thinking about or that if you are thinking about those things,
then you know your mind is going into places that it shouldn't be
going into. You're not focusing on work,
etcetera, etcetera. But it was conversations that I
had with these people and books that I read and documentaries
that I saw that actually gave me the vocabulary.
To talk about things that that we're always missing from my
dictionary. Things like sensory
sensitivities, meltdowns and shutdowns, masking, sensory
overload, executive dysfunction. These were these were words.
Phrases that I had never known about, but words and phrases
that I instantly related to on a very personal level whenever I
came back from parties, whenever I did a lot of socializing.
Invariably there would be either a shutdown or a meltdown the
next day. Which would pretty much mean I
couldn't do anything essentially for the entire day, and I had to
pretty much take the entire day off and just focus on myself,
focus on pulling myself back together.
And it still happens. It happens to date.
So I found out that yes, it was introversion in a lot of cases,
but also so much deeper than that, so much more than that,
with so many more associated angles that had never opened up
to me before then, Alap says. It was around 2022 that a lot
more conversations started happening online about being
assessed as autistic as an adult.
People diagnosed as neurodivergent later in life was
speaking about their own experiences, and Alap says one
of the persons he was in touch with suggested getting assessed
to check if he was autistic. I went in with a completely
blank mind. I went in like expecting to have
any any outcome either either a positive outcome or a negative
outcome. And I just kept telling myself
that I needed to be as as honest as possible about all my lived
experiences, about everything that I had been through, which
would kind of be like therapy. And it was.
The assessment was exactly like therapy, where over a period of
about four months, somewhere about 7 to 8 sessions, I had to
speak about everything that I had been through, you know,
right from childhood up until present day, including my
college life, my. School life, my office life, my
work life, etcetera. And sure enough, four months
later I came out with a diagnosis of autism at 33.
It was shocking, to say the least, but it also explained
just so much about my past experiences, about everything
that I had been through, that it kind of also came as a relief.
There is a lot of stigma still associated with it, right?
How did that but change the way you lived?
As in, was it something that caused you to change what you
were doing in any way? You know, there is stigma.
There has always been a lot of stigma around neurodivergence.
But as soon as I got my diagnosis, one of the first
things that my wife and I, we both did was to meet more people
who shared the same lived experiences as us.
Because the first thing that happens when you start
identifying and you start becoming part of a community is
that you feel less alone. And when you feel less alone,
whatever stigma there is, at least the effects of that stigma
don't affect you as much as they would without any kind of
support network. We were actually quite fortunate
to find a. A growing community of
neurodivergence from India. Young people as us who had been
diagnosed only in the past two or three years, and we were
starting to now band up together through communities on LinkedIn,
on Instagram, WhatsApp, etcetera.
So we started a page called Much Much Spectrum a couple of months
after my diagnosis. And that's how a lot of people
met us. That's how a lot of people
connected to us. And we started having open
conversations about the stigma that existed also.
What happens when you start having open conversations about
stigma is that people start realizing that what they felt
all along, how they have considered neurodivergence all
along, doesn't compute somehow because they see the kind of
diversity that exists on the spectrum.
They see the different lived experiences of people.
And they start to have less of a monolithic kind of a view of
neurodivergence and a more nuanced outlook of
neurodivergence. And so they start to see that
autism is not typically what they had thought it was.
ADHD is not typically what they had thought it was.
And a lot more people have these conditions than you see.
When you hear someone talk about their life experience, you sort
of relate to that. And then you have more empathy.
Essentially, Alab says, there's a vocabulary of neurodivergence
that doesn't feature enough in everyday usage.
He says this is despite the fact that neurotypical people may
have similar experiences. He explains why it helps to make
terms associated with neurodivergence more widely
used. The.
Vocabulary is there, but I would say that it's not part of
everyday balance. Sensory sensitivities, for
example. How often do you really get to
hear about those things? There are lots of people who.
Can't stand the can't stand loud sounds.
There are lots of people who cannot see very bright, flashy
lights, but those things are never typically ascribed to
being sensitively sensitive words like Meltdown.
There's words like shutdowns. Burnouts are, thankfully, things
that have recently come into everyday parlance because of the
whole mental health conversation.
But before that, you didn't know what burnouts were either.
You know, on days that you just couldn't function, you were just
said to be having bad days or a day where you weren't feeling
yourself. And the vocabulary really,
really helps because you know exactly what it is that you're
going through. There is such a stark difference
between having a shutdown and a meltdown that now when I tell my
wife OK, I'm in shutdown, she knows how to accommodate me
versus when I'm in meltdown where she knows exactly what to
do. And these things really help
because they help me come out of these situations faster and
better and feeling more careful. So having vocabularies is
important than it has always been there.
It's just that it's never been part of everyday parlance, which
now with this conversation is coming more and more to the
fore. I was going through some of the
videos you have done, and that for me was also a striking thing
because like you said, that you were an introvert, and that's
believed to be the sort of typical neurodivergent person,
somebody who cannot deal with a lot of people, and yet you'll
have documented people who actually love being with other
people and yet are neurodivergent.
Like you said, it's not monolithic.
Could you just talk about that? What is the common perception of
being neurodivergent and what you've seen in all this time?
I would say that people don't really understand what autism or
or neurodivergences overall really are.
Honestly, each each type of neurodivergence exists on a
separate spectrum of its own, and it's it's these conditions
are very, very dynamic. You would be surprised that even
a lot of autistics don't relate to each other.
With a lot of our challenges, strengths and presentations, we
have groups on which we have conversations all day about the
things that happened to us and the things that we go through.
In a lot of cases, people, you know, reply to messages saying,
Oh my God, the same thing happens to me.
But strangely enough, a lot of people also reply to those
things and they'll say, yeah, I don't relate to that at all.
This doesn't happen to me. I'm the exact opposite.
And they are still as autistic, you know, as as the other
person. So some of us are very social,
some of us aren't. Some of us are sensory seekers,
some avoided. There are autistics who are
hyper social also. I've met a lot of them and their
their presentations are very different from some of us who
are not as social. So some avoid sensory seeking.
Also some need way more frequent regulation breaks, some don't.
I would say what it essentially is is a processing difference
and a difference of expression. So these two things are pretty
much, I would say standard maybe might be wrong, but that's what
I've noticed in the time that I have met people from within our
community. A lot of people also tend to
think that it's a flat spectrum from severe to mild.
Like it's just one bar eight side by severe, like high excite
by mildly high. But it's actually more of a
flywheel, you know with with various strengths plotted on
that ranging all the way from less intense to way more intense
and. The intensity of these
presentations, the intensity of these conditions, is also very
dynamic and might differ from place to place, situation to
situation in a lot of cases. And autistic themselves might
not be able to tell you why they're not able to do something
that they otherwise do so well in a certain situation, or why
they could do something so well today that they otherwise never
really could. So it's it sometimes really
surprises you. Also why on some days you're
able to speak so well, on some days you want some days you do
something really badly that otherwise you know you're very
good at, so you really can't tell.
Our labs is the biggest lesson for them since starting much
much media is that No2 neurodivergent people present
the same way and differ based on various factors.
Our biggest learning, as much, much media, has pretty much been
that the most. Effective kind of knowledge
comes from listening to the person who's lived with
something that you possibly might have no idea about.
And that is how we know that autism presents differently
among men and among women and non binary folks.
That there is a class angle, that there's a caste angle to
it. That there's a religion angle to
it, that people across different intersections.
Have a very, very different experience of their
neurodivergence. They present differently and
their challenges and strengths exist across the spectrum that
that you literally cannot know about until you talk to them.
And no two people are the same. Essentially, that is the biggest
learning that we've had. Our lab says that discovering
that you're autistic in your 30s also means that you have to deal
with the claim that you're not as autistic.
As someone who was diagnosed much earlier in life, he
explains why not fitting in the conventional perception of
autism or other forms of neurodivergence doesn't mean
that people's challenges are any less.
And that's something he's hoping to address with the videos they
make at much, much Media. A lot of people also say that
your. Challenges are not as severe or
you know, that you're not as autistic as someone who might be
diagnosed way earlier in their life.
So this is something that that my wife and I and A lot of
people from within the late diagnosed community have had to
face, which is people coming up to us and saying, yeah, but
you're not as autistic as, you know, like a person who was
diagnosed when they were three years old, I would say.
But that's one of the biggest misconceptions that's out there
because. What that directly relates to is
the kind of masking that we do. So masking is another big thing
among autistic individuals. I wouldn't say it's just the
neuro divergent thing. Neurotypical people's also mask,
but with neuro divergent people their masking is is so
protracted and it's so, so much more intense that it actually
has bad mental health outcomes. The masking sort of has us, you
know, go under the radar or slip through the cracks, you know,
when it comes to getting a diagnosis earlier on in our
lives. And that unfortunately also
makes it seem like our challenges are not as severe as
some other people might be, which is something that we're
also trying to very actively talk about and trying to
actively spread information about.
The just because we don't match the classic image of autism
doesn't mean that our challenges are not as valid or as intense.
This is that ours are different, and what we're trying to really
educate the world about is. Everyone has challenges.
Some challenges are visible, some aren't.
But you know you need to come from a place of empathy when
speaking to someone and realizing that their challenges
might not be visible, but they might be just as valid and just
as intense as someone else's. What people I believe overall
aren't very used to is the concept of invisible
disabilities, That people exist whose disabilities are not
visible, whose challenges you cannot really see.
And to address this, I I really feel we need more disability
education built into a curriculum from a young age.
I think that is the that is the way that this will change.
We're back in conversation with Alab debur of much, much media.
Like he said earlier, Alab discovered he was autistic in
his 30s, and that in turn opened his eyes as to why he reacted in
certain ways to certain events. However, like he pointed out,
the stigma is very much there and not surprisingly, a lot of
it has to do with popular culture.
Not only infantilizes, but also dehumanizes its autistic
protagonist. That's one of the videos hosted
by Aditi Gangradi on the Much Much Media channel about a
recently released film. Our lab says that
neurodivergent, like other disabilities, is often played
for laughs in popular cinema, which in turn effects how people
deal with neurodivergent people when they actually meet them.
Hollywood is just part over a slightly over 100 years, maybe
100 years old around around that mark.
And And what films come to mind when you mention disability or
narrow Divergent? Maybe three or four films,
right? That is a mean part comes to
everyone's mind. Margarita with a straw will
probably come to everyone's mind.
And maybe then there's Barfi and a couple of others, right?
You can count them on your fingers about 10, maybe 20 films
right in all of history. So the number there itself tells
you just how little this entire conversation has been explored.
In a lot of cases they will be disabled characters, they will
be clearly narrow, divergent characters, but they're the
lowest hanging fruit for any kind of comedy.
One of the fall back things for screenwriters, at least in the
past, used to be Kichelloco and Euro Divergent.
Yeah, disabled character Kodalo and everyone is going to laugh.
This has happened with, you know, Tushar Kapoor, who had a
speech disfluency in golmaal and everyone laughs at him.
So this is typically how neurodivergence and disability
have been represented in Bollywood for a very, very long
time, and that has caused a lot of damage to the perception of
neurodivergent and disabled people overall, Alab says.
Another major problem is that there's another form of
representation of neurodivergence and disability,
which is portraying individuals as characters to elicit sympathy
or to make them inspirational. The strange part is, even if
there is neurodivergent or disabled representation, if it's
not from the make fun of them angle, it's from the pity or the
sympathy angle. So we need a lot less of what is
is called abroad. The inspiration upon narrative,
you know, which is disabled and neurodivergent people exist to
sort of inspire other people. That is not actually the purpose
at all because that video that is quite reductive that kind of
a portrayal. So we need way more known
portrayals of neurodivergent and disabled lives and just in
general more stories featuring us.
So there's two types of inclusion.
One is casual, where the focus is not.
Really, on the disability, But the disabled person just happens
to be part of the narrative. So we need a lot more of that as
well. Where if you have, say, four
friends as part of a story, one of those friends just happens to
be disabled. And the focus is not on the
disability or not constantly on the fact that, you know, I have
a friend with a disability or anything of that sort.
It just so happens that the person is disabled.
You know, community I think is a good example of this, where
there's a wheelchair user and the focus is never on the fact
that they are a wheelchair user or that they're different from
the rest of the college. In fact, our lab says they may
be characters that we're already seeing in popular culture who
may be neurodivergent, but it's never acknowledged.
Pretty much every Bollywood film by the hero cannot do well in
school. But does well in pretty much
every other aspect of his life. Could be ADHD, very honestly,
because that is one of the most classic presentations of ADHD is
where you sit in a classroom where you're very under
stimulated. You can barely even pay
attention to what the teacher is saying, and your mind is always
rushing for the first thing that stimulates your mind more and
which is why you cannot pay attention in class and therefore
don't get high marks or whatever.
And then because of that, everyone considers you a weak
student. But then you pretty much do well
in every other aspect of your life.
You know you're good enough. So that classic.
Added, you know, very comes over here, but that is a classic ADHD
thing. I mean that's not a diagnosis of
any kind, but it could be an ADHD thing.
Lots of characters that you see could potentially be ADHD, could
have some other kind of like Michael Scott for example, bad
example, but Michael Scott from the office seems dyslexic, seems
to have ADHD. There's that for sure.
But then again, it's never addressed really in the series
or anything of that sort. Unlike his own experience, where
his first therapist never been considered neurodivergent, Alap
says the number of therapists who acknowledge it is on the
rise in India. But not surprisingly, things
could be better. We asked Alap whether he has a
lot of people asking him about whether they should get assessed
and how does he advise them. One of the first things that
we've noticed is is that people don't don't know about.
Hero Divergent, We get DMS on on an almost everyday basis with
people telling us I go through the exact same things that you
do. Do you think I might be Neuro
Divergent? And the one thing that we end up
telling them is, look, we're not experts.
We are people who have who have been through or or who have
lived experience of Neuro Divergent.
We are experts in our own lives, yes, but we are not experts on
your life. Getting an assessment is one of
the best ways to. Figure out whether you are neuro
divergent or not. The number of assessors also now
is steadily increasing. There's many in India already.
These assessments happen online, so access to these assessments
have become easier. They are cheaper in India than
they are pretty much anywhere around the world.
Honestly, it it's tough to give advice because everyone's case
is so different. Everyone's situation is so
different. So the best that you can do is
just hear them out. And then maybe guide them to a
neuro informed therapist. Guide them to someone who will
understand neuro divergent. We will approach this subject
not with the lens of pathology, but with the lens of empathy and
understanding, and guide them in the right ways.
I think that's that's about the best advice that we can give to
anyone, so how could things be better?
Anab says. All that's really expected from
neurotypical people is understanding empathy and
agency. You know, definitely more
empathy and more understanding. More coming from a space of OK,
let me get to understand, let me get to learn more from this
person as opposed to coming from a viewpoint of OK, just because
this person is neuro divergent or disabled, automatically I
have a higher standing in life, or I know better than them, or
more than them. Coming in from a position where
you are eager to know more about them, where you're curious to
know about their life experience and to see what you can learn
from them. Way less of the whole fixing
narrative. Deframing our ideas of what
neuro Divergent is and not thinking of neuro divergent and
disabled people is broken. One of the most important things
is to have more knowledge dissemination at at the school
level. Way more schools addressing, you
know, divergent children. Way more schools accepting neuro
divergent and disabled children and letting them assimilate with
peers. That empathy is built at a very
young age itself. So that.
When you're older, having a disabled or a neuro divergent
person around you doesn't feel like a very alien experience.
It just feels like something you've grown up with in general.
Way more conversations around this on on social media, among
friends, just among in the movies and and everywhere.
Essentially just having more conversations about disability
and neuro Divergent and getting to know more about the culture.
Getting to know more about these conditions, about the strengths,
challenges, how to assimilate us at work, how to provide
accommodations. How to let us have agency in our
lives, which is essentially how to let us make our own
decisions, and just how to make accommodations, agency and
accessibility like a core component of every decision that
is being made. Today's episode was produced by
Jayaraj Singh and Anuja Singh. For a daily spotlight on people,
ideas and stories that matter, subscribe to us.
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