Don't You Know?

Wrote this piece for Aailaan, the Action for Autism newsletter. 

In his moving article ‘Don't Mourn For Us’, autistic self-advocate Jim Sinclair writes about expectations. 

Let’s say you’re a parent expecting a child. Your default expectation might be to have a typical one. You expect this child will grow up typically, and see the world and naturally understand and adapt to its ways. 

 

And when you discover your child is autistic, you might grieve and talk about how it was the most traumatic thing that ever happened to you. 

 

Naturally, none of the expectations you have of your child see the light of day. 

 

Expectations themselves are a tricky concept. 

 

Picture a vast, uncertain piece of land with lots and lots of roads branching out in all directions, and people in it scattered everywhere. Kind of like the dream city from Inception. 

 

Let’s even give it a name - Uncharted. 

 

There’s no signboards anywhere in Uncharted, so you never know which road is leading where. And even if there were signboards, all that would be written on them are the words ‘Don't you know?’ 

 

Because in Uncharted, nothing is clear, everything is implied. 

 

Out here, you see the vast majority of people scampering along with a wide smile across their face, going about their daily lives just knowing where to head off to and what to do next. 

 

They all seem to be on a mission. 

 

And you? You’re left dawdling about - a few steps here, there, in every direction - before you backtrack and find yourself right where you started. You want to progress, and you want to go places. But how is that ever going to happen when there are no directions and the instructions are next to none? 

 

You want to ask someone the right way, but no one here is willing to stop and listen. Even the few that do end up laughing at you because they can’t believe how something so obvious is so lost on you. 

 

They think it’s simply attention-seeking behavior. They call you out for it. 

 

And you can’t figure out why they need to be this way. You can’t figure out what could possibly be so difficult about just helping someone out. 

 

At its core, it’s an expectation mismatch. 

 

Figuring out expectations requires a keen intuition for the way Uncharted works. Because in Uncharted, nothing is absolute. 

 

Across Uncharted, along different intervals, the rules arbitrarily change. In some places, you’re expected to talk softly. Other times, you’re expected to walk gracefully and never run. In some places, you can be loud and brash, and as soon as the situation changes even slightly, you have to put on a formal demeanor. 

 

Language changes depending on who you’re talking to. And people are quick to take offense. 

 

The problem is that the rules are arbitrary. And there is no curriculum on them. No study material exists on meeting expectations correctly. Literally every problem seems out of syllabus. 

 

You’re just expected to know all this. 

Now picture your small child in Uncharted. No more than five or six years old, extremely impressionable and supremely ambitious. 

 

As he/ she/ they - somehow - make their way through this cold mess, they come across two other kids - Wally and Tom. Wally and Tom look as bewildered and confused as your child (YC), as they try to navigate Uncharted without much help. Thankfully they have each other to keep them going. 

 

YC: Hey, are you guys lost too? 

 

Wally: Yes, we are! This place is so confusing. 

 

Tom: It really is. And the people are mean too. 

 

YC: Did anything happen? 

 

Tom: Yeah! I keep getting told by my teachers in school that I'm too stupid to learn anything! 

 

Wally: I’ve had the same experience. A recent drawing I turned in as part of an assignment came back with the remark: “You have neither imagination nor good ideas.”

 

YC: I’m sorry about that. Can I see it? 

 

Wally: Sure. Here you go. 

 

YC: Wow. This is so... different from anything I’ve ever seen. It’s beautiful and unique. It makes you wonder what you’re trying to express through it. 

 

Wally: (pleased) Really? You think so? Well, Tom here felt the same way, and that’s how we became friends. Maybe you could join us too? We’re on a mission to find others like us. 

 

YC: I’d be happy to. I was kind of lost here as well, and it would be good to have friends for the rest of my journey. 

It was in 2022 that Aditi (my wife, 24) and I (34) discovered our autism. A late diagnosis doesn’t really come out of the blue - by the time you get around to receiving your official diagnosis (if you choose to; self-diagnosis is valid too) you’re pretty much certain you’re autistic. Because by then, you’ve probably read countless books and articles from self-advocates, joined WhatsApp groups, made LinkedIn connections, and spoken to at least a dozen others who have had the exact same lived experiences as you. 

 

I, for one, discovered that, like me, there are at least 10 others my age who have a background in journalism and non-fiction filmmaking, and are musicians themselves. An overlap of literally that many intersections existed among at least 10 of us! 

 

YC: And you thought you were the only one! 

 

Like YC found Wally and Tom, you realize there are many, many others like you. Others who don’t just know things. Others to whom invisible signboards are... invisible, not obvious. 

 

Others to whom Uncharted is like navigating Mars. 

 

Finding out about your autism, honestly, is one of the best feelings on earth. But it’s also very confounding. 

 

It’s a great feeling because you’ve now found that missing part of your identity that nothing else seemed to adequately describe. ‘Quirky’ is a loose word, ‘eccentric’ is a softer word for crazy, ‘asocial’ is too one-dimensional, and ‘gifted’... well, it makes you feel like you came into this world neatly covered in decorative wrap. 

 

It’s amazing to have a neutral word that describes you, how your mind works, and how you see things. You feel emancipated by it, and it becomes something that forms the bedrock of what popular culture so loudly proclaims as ‘being yourself.’ 

 

I mean, if everyone's so proudly showing themselves off, why shouldn't I, right? 

 

And that’s where things start to get a bit muddy. 

 

 

 

YC: Don't you know about autism?

Tom: No. What does that mean?

 

Wally: I’ve heard some people here use that term... I think to them it means that there's something... ‘wrong’ with someone. 

 

YC: Well, I am autistic. 

 

Tom: Really? Is that so? 

 

YC: Yes. 

 

Tom: Well, rest assured we don’t think the way others do. Maybe that’s why we’re two of a kind, eh? 

 

Wally: Three of a kind now! 

 

(They exchange smiles) 

 

Wally: So wait... does that mean everything that is not autistic, then, is... ‘right’? 

 

Tom: Well, I think there’s no right or wrong way to be. It’s too narrow to think that way. Besides, the way you are is not really the problem. The way the world fails to understand you is. 

‘Autism,’ by default, is a neutral word. But unfortunately, the people of Uncharted don’t look at it that way. 

 

To them, our world is a pastiche of templatized blocks. An assembly line. 

 

Every living thing in Uncharted is given a label and tucked away in a filing cabinet, and thought to be just like everyone else stuffed in that cabinet. Many of one kind. 

 

Individuality is seen as a threat. As an act of rebellion against the system. An act of demanding a separate cabinet for yourself, demanding space that is so precious and scarce. 

 

To Uncharted, autism is no more than a defect. A life that fell just short of life. 

 

A manner of being that - by default - refuses to conform to templates. That doesn’t happily take the shape of whatever mold it is poured in. 

 

The truth is - we demand our own shape, size, form. And we expect to find place in Uncharted. We expect to be appreciated. Why shouldn’t we? 

 

Why shouldn’t we ‘be ourselves’ and be celebrated for it when literally everyone else does? 

 

 

 

Tom: But don’t you know that’s not how it works? People are either amused or scared or weirded out by anything they can’t immediately label and file away. 

 

Wally: People's minds are like cabinets, and if they can’t find a cabinet for a piece of fresh, new information, they don't know how to react to it!

 

YC: Okay, I get that. So why isn’t love or curiosity their first reaction to anything then? Why don’t they try to understand another’s perspective? That doesn’t seem too hard, does it?  

 

Tom: Oh, I don’t know.

 

Wally: I think I might know why. It could be because... life here seems like a never-ending competition of sorts. Everyone’s doing the same five or six things, and fighting really hard to get better at them. 

 

Tom: But I don’t want to do the same five or six things.

 

YC: Me neither. So you’re saying that love might make them look weak and give someone else an edge over them? 

 

Wally: I think so. 

 

Tom: I think you’re being a little pessimistic here. It could just as well be that... just like we never learnt love in school, they didn’t either. Now they don’t know how to rectify it because they’re... so old." 

 

(all laugh)

Autism is so dynamic, so different in each individual, and such a vast spectrum that it’s difficult to adequately describe it. 

 

After we started our Instagram community Much Much Spectrum - and quickly grew to a collective of more than 30,000 folx in less than a year - we learnt so much about the world. 

 

Autism, to some of us, is a different way of doing things. To some others, it’s a host of different kinds of sensitivities. To me, most often it’s major communication challenges. To some others, it’s being in a state of constant anxiety and not really even realizing it. To some people, it’s all of these things, and to yet some others, it might be none of these or only a few. 

 

So we asked ourselves - how does someone, then, even advocate for themselves when so many people within the same community don’t even always relate to each other’s lived experiences? 

 

Where’s the baseline? 

 

Sometimes we get so immersed in trying to address an issue, we put it under a microscope and examine every little detail trying to find a solution. In doing so, we forget the larger space that the issue exists in - the system. 

 

YC: Don't you know you can always zoom out? 

 

The Uncharted system proclaims the need for a baseline – ‘build a ground of commonality where we accumulate everyone,’ it says. 

 

Tom: Make a filing cabinet and throw them all in! 

 

Wally: That's such an ‘Uncharted’ way of looking at things! 

 

And that’s when we had an epiphany: let there be no baseline. If everyone has a different experience with autism, so be it. That’s the beauty and the challenge of this experience. And everyone’s experience is valid. 

 

None of us needs a cure. We’re complete the way we are. 

 

We just have to make room for ourselves and others like us out here in Uncharted. 

Over the past year, we’ve spoken to a lot of people who identify as being autistic. We’ve put all this content out on our socials - Instagram, YouTube, LinkedIn. 

 

Cisgender, trans, non-binary, old people, adolescents, teenagers, 20-somethings - individuals at different intersectionalities have candidly shared their lived experiences with us. 

 

Almost all of them speak about their social struggles: being bullied, misunderstood, marginalized, ridiculed. And, as a result, finding themselves mostly alone. 

 

One big reason for this, as Sinclair very rightly points out, is the expectation mismatch. 

 

The system around an autistic child is not unhappy because of the autism itself. That's nothing to be unhappy about. 

 

The system around an autistic child is unhappy because their expectations weren’t met. 

 

They would have the individual, but without their autism. What they don’t realize is that the individual is not the same person without the autism. 

 

And by the same token, the autistic individual is unhappy with the system around them because his or her or their expectations from this world are never satisfactorily met. 

YC: So guys, what do we do? We’re just the three of us. Who’s going to listen to what we have to say?

 

Tom: And even if they do, who’s to say they’re going to help change things? I mean, it’s Uncharted. Things don’t just change around here.

 

Wally: I get what you guys are saying. But... I mean, there's no harm in trying, is there?

 

Tom: What do you mean?

 

Wally: Sure, things might not change for everyone all at once. But what if we do one little thing, which changes one kid's life. And what if that one kid and two others group up and do another little thing that changes two other kids' lives? And what if they...

 

YC: Yeah, yeah we get it. A chain reaction, right?

 

Wally: Kind of. That’s how these things work, right?

 

Tom: But where would we start? What’s our... baseline? 

 

YC: What’s a baseline? 

 

Tom: Like... a point in the conversation that’s simple enough for everyone to understand. Something that everyone identifies with, relates to, something that... everyone feels... whether they’re different or not?

 

(The three think real hard as Uncharted goes about its business as usual.)

 

YC: I got it! You said ‘different or not’, right? That, exactly there, is our baseline! 

 

Tom: Difference?

 

YC: Yes!

 

Wally: So you’re saying we ignore everything else and just start talking about how everyone’s different? Sure, we’re all different, but there’s more to it than that, don’t you think?

 

YC: Well, of course there is! And the entire Uncharted system right from the ground up will need to change for people to understand all the complex stuff. I’m just saying a good place to start would be to tell everyone that...

 

Tom: That we need to look at it through a lens of love for what's different?

 

YC: Kind of! 

 

Wally: That makes sense. Sympathy is a good way to understand what people might be going through.

 

YC: I think you mean empathy?

 

Wally: Oh, that’s right! I get confused.

 

Tom: So how do we get on with this? I’m kicked about our new idea! 

 

YC: I think a good place to begin would be to start speaking openly about what we think in and believe. To see people not as unidimensional creatures who are worth only as much as they’re able to contribute in Uncharted currency.

 

Wally: But instead to see them as multifaceted beings who live nuanced lives and have dynamic experiences.

 

Tom: Who can contribute in multiple different ways, if only we chose to identify and support their skills and talents.

 

(A round of enthused hi-fives)

 

YC: Guys, heads up. The people of Uncharted may tell us we’re only a bunch of idealistic kids who don’t know what the real world is like. But anyone who thinks like that doesn’t get much done, you know." 

 

Tom: True! Well, I’ve got a good feeling about this. We may be on to something here. What do you guys think? 

For all practical purposes, this is a parallel universe in which this same story is unfolding. Except, it's me, my wife Aditi, and everyone else we have met on our journey running Much Much Spectrum. At times it’s been challenging, invigorating, exhausting... but what it’s always been is enlightening. 

 

Just like Wally and Tom needed each other to get through Uncharted, each of us needs at least one other person who understands us and whose attitude towards us is prefaced with empathy. 

 

Just one other person. That’s really not a big ask in a world that comprises over 8 billion of us. A world of over 8 billion differences we are. 

 

Much Much Spectrum is not a company. We are a culture. A culture of understanding, empathy, and appreciation. A way of life that listens, doesn’t judge, and is keen on putting out as many authentic lived experiences as we can. 

 

A voice that sparks conversation. 

 

Because Aditi and I believe our stories are what we are all about. Our stories are us. 

 

On some level, we’re all lost. Whether neurodivergent or not, we’d all love someone who truly understands us and with whom we can be our truest selves. 

 

And so all of life becomes an act of figuring out who that person is to whom you could go up and say, “Hey, I was kind of lost here as well, and it would be good to have friends for the rest of my journey.” 

“Would you be that friend to me?”

The scene cuts to 50 years later. We’re still in Uncharted. But it’s a different place than where we started. Well, slightly. 

 

Wally is now a famous cartoonist. He’s a film producer, director, screenwriter, voice actor, animator, and entrepreneur. He’s credited as the creator of the first full-length animated feature film, and the winner of the most Academy Awards ever. 

 

The world knows him better as Walt Disney. 

 

As for Tom, he became an inventor and businessman who is credited with developing many devices in fields such as electric power generation, mass communication, sound recording, and motion pictures, and holds a record 1,093 patents for his inventions. 

 

The world knows him better as Thomas Edison. 

 

While history does speculate about the possibility of Edison and Disney having developmental challenges, the point here goes beyond that. 

 

Various historical accounts suggest that growing up, both Edison and Disney faced systemic challenges and stigma because of their personalities. But their work, their inventions, their imagination did underscore the importance of inclusivity – making entertainment and science accessible to all. 

Now take a minute and consider this: 

Go to that part of your brain - that filing cabinet - where you’ve stocked up all your knowledge about neurodiversity. About everything you think you know about autism. 

 

Open it, and empty it out. Literally purge that cabinet of all its contents and keep the empty drawer on a desk in front of you. 

You’ve now unlearnt any ableist biases you might’ve had, and can start over. 

Pick up some books by autistic writers. Listen to autistic-led podcasts. Watch films made by autistic individuals. 

You have the internet, and on it, at least a million #ActuallyAutistic voices. 

What's your excuse? 

And as for YC – or, your child – the world is poised to become his or her or their proverbial (inclusive) oyster.