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The Artful Individual

JaiAutism Spectrum Disorder

Jai Hopf Patni is an arts-based therapy practitioner, his disability lying on the autism spectrum. Jai unfolds the intriguing chapters of his life, highlighting the challenges he faced, the societal prejudice and the struggle to fit within conventional norms. The exploration of what it means to be “normal” becomes a central theme, with Jai embracing behaviors that reflect his true self. The narrative delves into the invisible aspects of autism, shedding light on the challenges related to it. Jai Hopf emerges not just as an advocate for autism awareness but as a testament to the resilience, individuality, and profound potential that resides within the diverse spectrum of human experience.

Transcript

I’ll take what I can on this journey of mine
Success is perception and life’s looking fine
Some things are easy and others are tough
But I’m doing alright and for now that’s enough

*
(Music)

Hi, I am Jai Hopf Patni and I am an arts-based therapy practitioner and I’m on the autism spectrum.

It has been a very interesting journey so far, for the most part.

When I had gotten my diagnosis at Sassoon Hospital, that was a 99% thing and back then I knew that things were a little bit off, I knew that other parents wouldn’t want their kids playing with me.

I’ve had other parents threaten my parents to specifically not allow that because ‘What if I make their kids dumb?’ was their general quotation.

But I got to also realize over time that that way I interacted socially would be a little bit too…what’s the word? Awkward or off.

So it kind of became a process of writing down. Okay, I just had this, I will ask them, ‘Hey, how was my interaction with you?’

And for the people that I was closer to or I could trust, they would tell me. And that kind of helped me shape how I wanted to continue interacting.

I wanted to make sure that I can make a more comfortable presence for those around me.

Being “normal” is, what exactly?

Being within a certain range that people can describe.

I know that there are certain things that I like to do, I know there are certain behaviors, like, in India, in general, hugging is not something that people do often.

I know I still really like to hug people as my way of greeting them, right?

I’m sure you guys are both aware.

But that’s still something that I will keep as my thing.

So I’ll have a set of behaviors that I know aren’t considered necessarily normal, but I also know that those behaviors are things I like and they help define me as I am.

So I will still want them to be a part of what I do, whether or not it is normal.

I know some won’t be comfortable with it so I’ll usually, I’ll typically ask.

I won’t just be like, ‘No I have to hug you, it’s important, I will hug you’.

Usually it’s more like, ‘are you a hug person, a handshake person or what?’

Usually people are comfortable with hugs if they know that that’s coming.

Some people just want, like, a fist bump or a handshake and that’s fine, that’s perfectly fine.

*

Like the sensory issues, people don’t quite realize what’s going on.

A lot of the time when I get asked to go to huge settings, it’s not necessarily just social engagement that can be difficult or taxing, it’s all of the noise and all of the light and all of the chaos going all around.

It manifests itself as a physical pain that, is almost crushing.

And you want to get out, no matter what it takes, whether or not you just want to have to scream to get out, whether or not your brain just stops wanting to do any of the normal social niceties and it just wants to try and flail about, try to just leave location, leave location, now.

Or whatever else it takes, right?

So, people just see it as ‘Is this child acting up?’ or ‘Why is this child being difficult?. We just took them shopping, why are they just yelling and screaming for no reason?’, things like that.

So, I get it.

It’s tricky and that part is invisible.

People think of it as ‘child is just acting up’, ‘child is just being difficult’.

Oh my God, the whole “being difficult’, it’s bad.

I feel bad whenever I hear that.

One of my most common forms of stimming has typically been tapping.

So I will typically tap my fingers or I will just like…(taps)...I will make a rhythm and I will try to have that rhythm play in my head and on my fingers and I’ll try and keep them in sync and then I’ll envision other things onto it and that allows me to kind of drown out a lot of outside chaos.

So I would do that for a while.

I’ve recently started getting into the habit of tapping my foot really fast.

That’s kind of happening because I’m learning it from other people.

A lot of people will say they want their child to be independent and that is true, they will want their child to be independent, who doesn’t?

At the same time they will also want to make sure that they’re constantly there for every part and to be someone who doesn’t let a mistake happen, doesn’t let the child make a mistake, doesn’t let the child have an issue at any point of time that they need to solve themselves because they’re like, ‘Okay, child has a problem, let’s try and help them solve it’.

Like, okay, that is fine, but you really need to let your child have those failings because without it your child isn’t learning how to be independent, how to handle stuff if things go wrong.

They just know that, ‘Okay something will go wrong and then people will help me fix it’.

That might happen sometimes but that will not be the vast majority of our life.

We need to know how to handle ourselves.

*
While I would recommend therapies, I personally did not go to any therapist growing up because for the most part growing up, my parents weren’t fully sure what it was.

Autism was only really discovered later on down the line.

At first it was considered to be just ADHD, it must just be ADHD, must just be like, focusing trouble, something like that.

And, while I also do have ADHD, that kind of made it hard for them to know.

So, my dad took it upon himself to kind of do a lot of the things that I actually see therapists doing nowadays.

And he had done so many hours of research, along with my mom, to figure out the right strategies, what to do to make sure the child can learn the best they need, learn the best way possible.

Some things I hated.

Some things were just awful, but, but necessary.

Like when I was six, my parents got rid of the TV, and I was like, that’s not fair!

But, they did replace it with a giant library, where every single wall in our house, has a bookshelf in front of it, full of books that I got to read, that I get to explore.

And we would do a lot more outside, uh, outside interaction.

I’d get to learn that way. I wouldn’t have to just sit at home.

(Music)

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Familiarize yourself with and expand your vocabulary of disability-related terminology! 
C - Congenital disability
I - Independence
E - Ensure participation
U - Using Technology
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