50 Shades of Autism - Aniket

 Another week, another super interesting interview. When I had started this series, there was a huge part of me that felt I will not be able to continue it beyond 5 interviews. I would either get bored, or wouldn't get anyone to speak to, or both, or something else. Well, this is the 5th interview, so wish me luck :p

Aniket was the first adult autistic person that I spoke to, more than a year ago, in one of the whatsapp groups. Back then, I was really struggling with one of the kids scratching me. They would scratch for anything and everything. Feeling happy, scratch mumma, feeling upset scratch mumma, thirsty, hungry, sleepy, you guessed it, scratch mumma. I used to joke that I am a victim of child abuse, as in my child is abusing me! But underneath the humor, I was losing my shit, little by little, with every single scratch. I started dreading physical contact with my child, and the only time I would feel comfortable going near him was when he was asleep. I would often get so irrationally angry, and I had so much guilt and shame around it. It felt like a cycle I was unable to break out of. The part that made me most upset was that I had wished this life, I had prayed for these kids. It wouldn't make sense to me why I am getting so irritated. And how hurtful can a 3 year old even be? So many questions, and no answers. So when I found the group where parents can ask autistic adults questions about their autistic children to understand them better, I thought, maybe this is my last resort. I explained in detail, because that's the only way I know how to talk, about what my kid does, and how it affects me. I got a lot of good suggestions, but the best was the question from Aniket about why it affects me so much. Before that moment, for some reason, I never paused and observed that could it be that it is affecting me more than it affects others? And then, in that moment, it was like the climax scene of a suspense movie where all the pieces start to fit together. 

My entire life flashed in front on my eyes, why as a child I would never allow anyone to touch my cheeks, why I would get so irritated by "same pinch" or "new pinch" by peers, why I hated it when people patted back or thighs while laughing on a joke, why I blasted off on my newly wed husband when he touched my face not as gently as I like, and why I become a volcano every time my 3 year old uses me as his personal scratch coupon. Nobody likes painful touch, I had assumed all my life, but maybe, just maybe there is a possibility that I dislike it a little too much, a little more than everyone else. Maybe what I was wasn't angry, but more overwhelmed by all that painful touch. And maybe, just maybe, I experience pain a little more than most people. 

As I kept learning more and more about Autism, this was how I understood it. We are all the same, we all like and dislike certain things, but when you are autistic, your likes and dislikes are heightened. You do it with a passion that is hard for someone who has not had a similar experience to comprehend. Of course, this is a very dumb downed, basic explanation. But its better than nothing. 

Aniket, on the other hand, has a much deeper understanding about autism and neurodiversity in general. He is autistic, is the co founder of Powered by Autistics, an org for autistics by autistics, and is once of the very vocal advocates of autistics. So lets get into it.

M: Would you like to introduce yourself in your own words?

A: Late diagnosed autistic engineer. Husband, autistic self - advocate.

M: So, let's start at the very beginning. Can we tell me a bit more about your childhood?

A: I spent it very lonely, I had a couple friends but I was bullied by them as well. Thing is I ran into quite a bit of alexithymia. I wouldn’t get angry when I was being bullied, I couldn’t cry when I was lonely even when I felt like crying.

I always had to make up scenarios that made it feel worse, or watch a sad show like Ally McBeal which nearly centers on the feeling of loneliness. Btw, that show also has two autistic main characters, both seizing their power, long before I’d even know what autism was. They were never explicitly called autistic, just weird like me :)

I had a complicated relationship with food. I didn’t like the style my mom cooked but I had no idea what it was about the food I didn’t like. I didn’t know I don’t like the texture of a plain dal on rice such that it felt like wet plain white rice. I didn’t like the sugar crash that came after eating white rice.

I hated the texture of most curries and vegetables which were a mix of liquid and solid. Ironically, I was quite old when I figured out I like dal rice, as long as there’s twice as much dal as rice and it’s a dal khichidi so it’s blended into one uniform texture. Of course it has to be very spicy.

This is one of my staples today that I love to make. But I hated food so much as a child that I was ten kg’s underweight until my second year of college when I hit the gym.

I would never realise until my 30’s that my issues with food were because of sensory sensitivities.

I leaned hard into science and the internet since a computer can’t reject you like all the people were. I loved learning about how the world works, because so much of it was so confusing.

M: When and how did you get your autism diagnosis?

A: I was reading a lot of books during the pandemic since we’d run out of interesting netflix shows to watch. I happened across likely the best place for an undiagnosed autistic to learn about autism from. A romance novel written by an autistic woman. The Bride Test by Helen Hoang was the first time I’d ever seen a character doing everything I do. Like not realising when I’m under stress but increasingly losing co-ordination instead and a hundred other things.

Romance novels by their nature are deeply human. Delving into the innermost feelings of their protagonists and how they relate to the world and others from their perspective.

Autism from the inside.

You don’t get that with so many other things, which even though they may be good resources, often describe the outside.

All wrapped in a beautiful and meaningful story with an unbelievably upbeat ending a few years in the future where he accepts and accommodates himself.

It blew my mind and it helped sort through some issues I was having even at that point in my life, let alone recontextualizing my entire life.

I knew I was autistic and didn’t need any diagnosis. Following the resources at the end of the book I discovered ASAN and the autism women’s network. I also had other Kay Kerr books to read.

Now about a year or two later the first thing my friend said when I told him about it is if I have a diagnosis. I was disheartened but figured ok if that’s what it takes to get him to believe I’ll get one. It would take another year of searching before I could find a place that would even tell me there are tests for adult autism.

I’d been to several psychiatric orgs and they all told me autism is a kids disease, therefore there are no diagnostic tests for adults at all. It was one of the first times I’d run into the Grand Canyon sized gulf between what the autistic community knew and what professionals know.

Finally armed with a diagnosis I went to my friend and found that it didn’t really convince him.

It took hanging out with him unmasked to really get it to sink in. Yet again I discovered that a diagnosis is irrelevant.

Finally when I founded my organization Powered By Autistics, my cofounder Sudhanshu Grover was certified to diagnose it and I figured I’d do another assessment just for market research.

This one with Sudhanshu took much longer than my first and was much more thorough as expected by work done by another autistic person.

I got my answer that Powered By Autistics is not only the only org that does autism diagnosis by a highly qualified professional who rose to head of education for an autism charity over a decade of working there, but also Sudhanshu is an autistic woman herself. We won’t be invalidating your experiences since both of us have first hand experience of it.

The first time I finished The Bride Test, I was sitting in silence reeling with the repercussions of discovering this. Immediately I went out in search of a community and it would take me months more to discover it.

By the time I had my formal diagnosis, I was well processed and had more of an “of course” feeling when a stranger validated my own feelings about my life. Haha, I didn’t need that.

M:What impact did it have on you?

A: Whoops, already answered.

M: Can you tell me more about your organization? What do you do? What made you start it? How did you meet your co-founder? I am always intrigued by entrepreneurial stories, so anything and everything that you feel comfortable sharing.

A: Powered By Autistics offers the following:
1. Counseling/ mentoring sessions for Autistic children, teens and adults .
2. Post diagnosis support.
3. Parent training.
4. Building literacy and language.
5. Runs an ND women’s monthly talk run by our woman co-founder.

There’s of course a story behind how I started it. In general in India we don’t have a lot of things that I want, and one day while on reddit I found someone saying that entrepreneurs find unmet needs and fill them. If you see something you really want and it doesn’t exist, have you considered creating a business to fulfill it? People aren’t so unique, whatever is a thing you want a lot there will be others who want it too.

Then a month later I found out I was autistic and went looking for organizations that catered to autistic people. I found nothing but charity after condescending charity, offering things I didn’t need, marketed in a way that would make me not want to get it from them even if I did need it.

I figured no such thing exists, let’s start an organization by autistics for autistics. I don’t even know what I need yet but I can figure it out.

I’d been telling people about it ever since.

Sudhanshu or a friend of hers I don’t quite remember, is friends with my sister. We’ve been talking for a long time. Post finding out I’m autistic I’m much more social now because I can be social with people who aren’t alienating me and vice versa.

We talked about the idea a few times like I do with a lot of people and eventually she came back and said she’s ready to start it.

Sudhanshu decides the programs and the day to day functioning of Powered By Autistics. As I told her at the time, I don’t really know what autistic people need since I’m still figuring out what I need too. You can do whatever programs you want to run and if there’s something that needs to be financed I can do that.

So I haven’t really paid for a lot of things, but stuff like our certification to teach spelling to communicate is something I paid for. I really needed Sudhanshu for this as well since she has the background in special education to actually make sense of the training and actually apply it

So that’s how it runs, I provide some upfront money for the large financial spends and I eventually get it back.

M: What support needs or accommodations do you need in your day to day?

A: Hearing protection that’s different if I’m sitting at home or going outside in a world terribly overrun by neurotypicals putting out tremendous amounts of sound and light pollution.

I index it here https://www.indianautistics.com/autism/2023/09/19/all-hearing-protection.html

I recently got soundproof windows and that’s helped a lot to get peace at least at home.

I work remotely as offices can be extremely distracting with a lot of movement and unexpected sounds. Not to mention condescending replies when I ask them to fix the flickering lights. Shout to both Uber who’s accessibility helpline email bounced my mails and Spaces whose ignorant staff made me never want to come there again.

My Apple Watch alerts me to increases in heart rate when I’m just sitting which is helpful to notice stressors. I don’t normally feel them myself until the pain reaches a certain threshold.

It also helps quickly set timers so I don’t end up burning things on the stove if I walk away for a moment ( or 20 minutes ) without realising.

I also need it because the only way I can get a slack (instant communication for office ) notification is via a vibration on my watch. The visual bouncing icon jerks my attention painfully, and the sound is even worse. Without my watch to vibrate I have a new message, I’d just have to keep it silenced and miss messages until some time has passed.

The vibration can alert me without disturbing me while working.

It also helps me not miss calls from people, since my phone needs to be on silent all the time.

I use phillips twinglow tubelights because not only are they a nice warm yellow, but they point upwards meaning there’s no direct light on my face.

It’s the ideal illumination.

I have another iot light that’s slanted on one side that is dimmer than the tubelight to begin with and can be turned down further for a relaxing night time ramp down in illumination so we don’t go from fully bright to fully dark directly.

I use sunglasses and a hat outside to block out the irresponsible drivers with their high beams on in the middle of the day or the dark of night.

Also in hospitals which are incredibly overloading sensorily. Including the beeping of the heart monitors in the emergency wards. I wouldn’t step into one without already wearing my 3M earplugs.

M: How did you end up in software engineering?

A: Simple matter really, I was good at writing and software and there’s more money in software.

I picked something I liked, mobile engineering because I like having a computer you can hold in your hand and use to get information about the world. The sensors on a mobile you won’t find on laptops or desktops.

I googled for what kind of software the most jobs were in, it was Android at the time so I cracked open the google documentation for android, studied for two weeks and went off to apply to jobs.

I got one, that was over a decade ago and it stuck.

M: In your introduction you describe yourself as a husband, among other things. Can you talk a bit more about that part of your life? How did you meet your wife? What is your relationship like? Also, plenty of people still believe that autistic people can’t fall in love, which is the biggest bullshit ever, but hearing your talk about love may help change their mind.

A: Haha I met my wife because we’d both dropped out of college and were going to computer classes at some large corporate run place. I wasn’t even supposed to be in her class but a random employee decided to call me 10 minutes before the class started. An earlier time than the one I was going to go for.

The professor asked why I was 10 minutes late and I told him it’s their organization’s fault that they only told me about the class so late and I thought I got here pretty early considering.

She liked that I could talk back to an authority figure, an autistic trait that I’ve leaned into as an adult. I liked her as well and was following my carefully curated “way to get a girlfriend” method and it worked!

The relationship is fun because both her and I can say this place is too bright, I can’t talk for a bit because I’m overwhelmed ( and we switch to sign language ). We both deeply understand executive function limitations and it eliminates a lot of the invalidating discussions I might’ve otherwise had to have with a neurotypical.

Also my reduced expressions are nicer on her as an ADHD person, and I like explaining things as many times as someone needs which is helpful to her sometimes when we stumble across auditory processing difficulties and vice versa.

Love is always about understanding a person and caring deeply about them. I think we’ve got that for each other.

Ironically I often question if neurotypicals really know what love is? Too many men don’t care enough about the innermost feelings of their partner and will put society and other people before their partner. They are not curious to know about each other's feelings and many times, especially in the older generation, do not respect the wife.

Is it love? Or just a role that you have seen and copied poorly? I doubt neurotypicals commonly have the depth to truly listen and love.

M: What is something you wish more people understood about autism?

A: That we have pride, power and are often smarter than you. I won’t be invalided, I’ll get a legal team on you or at the very least leave the shame where it belongs. In the ableists minds, not ours.

M: I have already told you this many times, but for our readers, I will say it again. I can’t thank you enough for leading me down the “Am I autistic” spiral. Because if not for that, I would still have been struggling with my own sensitivity issues. I have 2 questions. First, what was it about our conversation that made you think I might be? I don’t have an official diagnosis, so I think it is important for me to understand what made you think I was?

A: When you look deeply within yourself and reflect on your life and interactions, you identify everything that was autistic about you. All the things which you used to think “everyone does” but almost no one else did.

All introspective autistic and adhd people develop a “neurodivergent radar”, when we notice that we’re not being misunderstood when we say something that undoubtedly an NT would have taken differently. The way of speaking, the extra clarity, humility, the recognition of different experiences and reactions to what you say.

Neurotypicals have a fingerprint, an arrogance that’s very distinctive and repulsive. All neurodivergents have a lifetime experience of being beaten up for our differences and we know in our bones that differences in thinking exist. It eliminates this kind of arrogance even for divergences that we don’t understand. It’s very highly visible when you know what you’re looking for.

Also Mansi is my kind of autistic. A primary autistic, we are highly internal focused. Brilliant, focused and confused in very specific ways. It always stands out.

In short, the people I like tend to be only neurodivergent. I still annoy the living daylights out of neurotypicals by doing exactly the same thing that gets me a large following of neurodivergents.

If I’m vibing a little too easily and well with someone, I run a mental check again on our interactions and can tell not only if you’re autistic or adhd or ND in some ambiguous way, but also your percentage of autism and adhd. (we’re all mixes of autism and adhd).

M: And second, I think it is a natural curve for parents to find out their kid is autistic/ND and then figure out that they too are autistic/ND. What advice do you have for any parent out there who is having this doubt right now?

A: Read Love and Autism by Kay Kerr and Unmasking Autism by Dr. Devon Price.

Also know that this is the number 1 way people in our generation 30+ find out they’re autistic.

M: This is a tough one, and I ask this from a place of curiosity and not judgment, are you a little too hard on NTs? Why is that?

A: Actually I just respond with appropriate force when someone says something ignorant. It’s just a coincidence that NTs have not only exponentially more ignorance, but here’s what makes me go after them harder, they have a tremendous unfounded confidence in their ignorance.

If they haven’t experienced something, it doesn’t exist.

They know for sure why you did something because they’re “good at reading people”.

They never learned to listen and I didn’t know how to make them listen before.

I’m not starting from a combative place for NTs, they just…..keep being ignorant and then will argue with you about how they’re not even after they admitted they don’t know about disability.

Just a week ago I was asking for accommodations in a store and the guy is saying “Why won’t X work, why won’t Y work?” actually even though that would be a decent starting place, he actually said “You have already been offered X and Y” and I had to tell him that can’t work. This is after he admitted he didn’t know why I was asking.

I asked him “How do you have this much confidence to offer solutions to a problem you have already admitted you don’t even understand?” his reply? “How dare you imply I don’t understand, I understand”.

Besides, you know how the parents are in the parents group. Not only are they incredibly insulting, they will argue with you about how they aren’t insulting!

I remove confidence from those who have too much unfounded confidence and restore a little to those who have too less. In an attempt to make the world make a little more sense.

I am simply as hard on NTs as they are on us and indeed they are too hard on us.

M: What is your response when someone says “Everyone's a little bit autistic”?

A: I’ve seen so many good responses to this.

Then the world would be designed to suit us not you and I’d be a lot more comfortable.

Here’s one concrete way it could be different https://bbc.github.io/uxd-cognitive/

Then you wouldn’t call me lazy when I’m working so hard.

The rare case when they’re saying this to comfort you, but don’t realise that neurotypicals find comfort in conforming to those around them and therefore are deathly afraid of being different. So even their way of comforting is to say “oh no you actually conform”. I wish they’d understand how their brain works rather than having the option to not even know because society never forced them to know they’re different.

M: If you were to run into a very dear friend today, who is just coming back from the hospital after receiving an autism diagnosis for their child, what is it that you would like to tell them?

A: I know a good autistic doctor, you should take your child to him if you have even regular health issues because they understand how to talk to people in general and autistic people in particular :)

I’ll also tell him his child is lucky that he can only live a life of meaning unlike neurotypicals who on average run through their short time on this earth, only able to copy each other.

Every choice he makes will have reason and consideration behind it. He’ll even get called an overthinker.

M: Any last thoughts you would like to leave our readers with?

A: Only autistic people’s opinion on autism matter. If you need a therapist, I know several autistic ones. If you need writers, I know autistic journalists. If you need scientists and lab workers I know autistic ones. And so so many autistic parents.

Why are we suffering the presence of neurotypical opinions on autistic matters? I attend several such online events and without exception, they are all miserably failing at talking about the issues that matter and solutions that can work. Like watching toddlers speak disjointed words vs ignored poets.

Rapid fire-

Favorite book

Rhythm of War - Brandon Sanderson. But start with the Mistborn series or The Emperor’s Soul if you want a short story.

Favorite movie

GATTACA. I was a snot of a self important kid, believing that only IQ mattered since I was pretty smart. GATTACA shattered this worldview and made me understand the importance of hard work, especially for very smart people who usually don’t need to work hard.

Favorite singer

Taylor Swift. Works extremely well in noise cancellation and I love her voice and lyrics. Also Janelle Monae, I wish they had more albums.

A moment of your life that makes you happy

The present.

What is something people often get wrong about you

I’m goofy and fun, I like to be underestimated. I like dealing out justice when people think they can take advantage of me.

A core childhood memory

Hard to think of these on the spot.

What is something you are struggling with right now

Being misunderstood.

What is a recent accomplishment you are proud of

Getting back to poetry after a long time.

Thank you so much Aniket for your time and patience, and more so for all the knowledge that you have been sharing with lost parents like myself. I know it is not easy, especially when you are doing it for free, because it is costing you your time, but you do it anyway. You are our very own Autistic Crusader. 

Thank you readers for reading. Feel free to let me know other questions that you may want me to ask in the future interviews.