Episode 202: Swarit Gopalan – Nonspeaking autistic writer and poet

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Today I’m speaking with Swarit Gopalan, an 11-year old autistic nonspeaker who uses a letterboard to spell and a keyboard to type to communicate. He lives with his family in Florida and goes to Invictus Academy for school. You’re going to learn more about him in just a minute.

For this interview, I sent most of my questions to Swarit in advance, and he prepared his answers beforehand. His parents and communication and regulation partners (Jenny Padma & Arun Gopalan) came to the interview too. Since Swarit is nonspeaking, you’ll hear his father Arun read Swarit’s answers out loud.

I also asked Swarit a few spontaneous questions. For those questions, he spent a few minutes typing out his answers during the interview, and then Arun read them out loud. With Swarit’s permission, I’ve edited out those few minutes of typing, to keep the flow of this episode.

Swarit is a talented writer and passionate advocate for other nonspeaking people. Here’s what he wrote in his bio to describe his writing and advocacy:

“Right from the time of diagnosis, we are only told about all things we cannot or will not be able to do. Along with the check that is written to the doctor for the diagnosis, it often feels like our agency is written off too, especially without a reliable communication mechanism.

Time to change the paradigm with more nonspeakers’ voices. It has always been a dream to share my thoughts and perspectives with the world so that I can be one of the catalysts to creating a better understanding of non-speakers in general. My hope is that my words will help change the world from sympathy and pity for those like me, to one of deeper understanding of our lives and allyship to ensure our rights.”

Swarit, welcome to the podcast. I’m so happy to have you here today.

How did you get introduced to spelling on a letterboard and to typing on a keyboard?

Swarit Gopalan (via Arun Gopalan): I got introduced to spelling to communicate in June 2021. My parents got coached by Dr. Dana Johnson. They followed the hierarchy of motor cognition of S2C, and we moved from three step stencils to laminated letter boards to typing. Now I primarily use laminated letter board in public settings, and keyboard at home for my posts, poetry and creative writing.

Carolyn Kiel: That’s wonderful that you discovered spelling to communicate, or S2C, as you said, relatively recently, and you’re already writing and sharing your thoughts so much. So what inspired you to start writing on social media?

Swarit Gopalan (via Arun Gopalan): It has always been a dream to share my story and perspectives more broadly so I can help accelerate the learning curve for families like ours. It is very important to me that we get voices like mine out of the prisons they are in. My life ought to move others in directions not thought possible, as I would not be here if others had not shown the way. It would be a huge disservice to my tribe if they are left to figuring out solutions within the traditional sectors that have only failed them.

Carolyn Kiel: Yeah. And it’s wonderful that you share your experiences to educate everyone about nonspeaking autistic people and also to encourage and build a community with other nonspeaking autistic people as well.

So, what kind of things do you like to write about?

Swarit Gopalan (via Arun Gopalan): I like to write about my lived experiences, mostly, and by extension, my perspectives and reflections on things related to that. I love writing poetry as well, as it provides me an avenue to share more abstract thoughts. My life portrays what is possible and can hopefully galvanize those that have lost hope.

Carolyn Kiel: Absolutely. And how do you write your posts? Like on a letter board or on a keyboard?

Swarit Gopalan (via Arun Gopalan): I share my thoughts and feelings through typing on a regular keyboard. I have a communication and regulation partner, also known as CRP, that holds the keyboard for me for now, while I’m working on my skills to type independent scripts.

Carolyn Kiel: Yeah, you publish a lot of really wonderful posts about your experience.

One of the topics I wanted to ask you about, something that you’ve written about a lot, is dysregulation. I think that dysregulation sometimes is really misunderstood by people who don’t have personal experience with it or are kind of looking from the outside, viewing it. So, can you tell me a little more about what dysregulation is and how it impacts your ability to communicate?

Swarit Gopalan (via Arun Gopalan): Dysregulation, in my experience, is just losing control of some or all of my senses. Sometimes it can be a scary place and sometimes a very happy place. In either case, I need to do something that may or may not be widely accepted to get back to my senses.

Carolyn Kiel: You mentioned that you need to do something that may or may not be widely accepted. Just to help educate people more about dysregulation in nonspeaking autistic people, what might some of those things be, or what does that look like?

Swarit Gopalan (via Arun Gopalan): These are typically stims, like twirling a string or hopping in a chair, et cetera.

Carolyn Kiel: I see. Okay. Yeah. And that is something that helps with the dysregulation. So like, what kinds of things can cause you to become dysregulated?

Swarit Gopalan (via Arun Gopalan): Lots of things. Being treated without respect, sensory stimuli like lights and sounds, for example, emotions that are overwhelming, physiological factors like hunger and tiredness.

Carolyn Kiel: I see. And can you describe what it feels like when you’re dysregulated?

Swarit Gopalan (via Arun Gopalan): I just lose control of my body. We become completely separate beings.

Carolyn Kiel: What usually helps you feel more regulated?

Swarit Gopalan (via Arun Gopalan): A calm and regulated partner that can help me co-regulate. Someone that I respect and trust, that knows how much and what to say and how to coach my body. Sometimes just removing the stimuli helps.

Carolyn Kiel: And that’s an important point about the role of communication and regulation partners. So, not only do they help you communicate, but they also help regulate your body when it becomes dysregulated through just their own actions and their own calmness. And, and of course removing the stimuli often helps as well. That makes a lot of sense.

You’re currently in school. You go to Invictus Academy. As a student, what have your experiences with school and education been like?

Swarit Gopalan (via Arun Gopalan): Education has just been a pipe dream for many in our tribe. From outright abuse to glorified child care, our school choices have been between a rock and a hard place. While my teachers always told me I was smart, we never got to actually presuming competence fully during our activities or in providing age appropriate cognitive content. Only in the last couple of years have I had anything close to resembling a formal education.

Carolyn Kiel: I see. And yeah, I had another question about Invictus Academy. Is that a school where you get to learn alongside other nonspeakers? And what kind of subjects do you like to study there when you’re in school?

Swarit Gopalan (via Arun Gopalan): Yes, it is a school primarily for nonspeakers. I love math and history.

Carolyn Kiel: Awesome. That’s great.

And on the topic of other nonspeakers, you recently went to a conference called Motormorphosis, where you got to meet other nonspeaking people and their families. What was that experience like for you?

Swarit Gopalan (via Arun Gopalan): The setting was perfect. By the nonspeakers, for the nonspeakers. Allies and professionals were in attendance as well. The point so many live presenters made, that we are up against a world that has systematically dismantled any remote chances of us trusting our own bodies and intellect, was something that stayed with me in the backdrop. The past that persists into the future. The wound that keeps bleeding.

I enjoyed all the nonspeaker panels and presentations. I loved all the offline chats, be it about my Facebook page, or my April series, or discussing research topics with Professor Vikram Jaswal, or learning about the power of love and acceptance from speller families, or observing how my tribe was dealing with their new challenges, or just reveling in the love and belonging.

I came back home with a renewed sense of community and purpose. The life we want for ourselves looks even closer within reach, thanks to the collective work of the incredible community of nonspeakers and allies.

Carolyn Kiel: Yeah, it sounds like that experience was really powerful to be around your community and people who knew the struggles and the triumphs and all of the journeys of other nonspeakers. And it just sounds incredible to be able to meet and learn from so many people.

And it’s great that you got awesome feedback from your writing! You mentioned the April series, which is a series of posts that you did in April around Autism Acceptance Month, and you’ve been writing so much on Facebook and Instagram since then. So like, what are your biggest goals as a writer and even for your life in general?

Swarit Gopalan (via Arun Gopalan): I want to continue to discover myself as a poet and a writer. While I want the primary focus of my writing to be advocating for nonspeakers through my lived experiences, I do want to explore other topics and grow as a writer.

Carolyn Kiel: Yeah, absolutely. That makes a lot of sense.

And one of the things you’ve written about is how nonspeakers need more allies in the world. So how can people be good allies to nonspeakers?

Swarit Gopalan (via Arun Gopalan): Anyone that respects me to spend time understanding me is a friend and an ally. We live and long for deep connections and meaningful relationships. We would be grateful if neurotypical people can invest time in building friendships with us, show genuine interest in learning about our lives, and help be an advocate for those like us in their lives.

Carolyn Kiel: Absolutely. And I think your writing is one of the many things you do that helps people make those connections.

What advice would you have for family members of nonspeakers?

Swarit Gopalan (via Arun Gopalan): Our lives have been transformed, with my communication flourishing now. Life is more worthwhile and meaningful. Every family with a nonspeaker should try this, as it is cruel to be in the prison of voicelessness. The world is poorer without the wisdom of all nonspeakers.

Carolyn Kiel: Absolutely. And what advice do you have for other nonspeakers?

Swarit Gopalan (via Arun Gopalan): Please continue to share your light and love with the world. There’s no one else that is more capable of educating the world about your life than you. Your words make a difference.

Carolyn Kiel: Absolutely. Swarit, you’ve done so much incredible writing that you share on your social media. Where can people go to find and read your writing?

Swarit Gopalan (via Arun Gopalan): In Facebook and Instagram under the name SWARIT GOPALAN – MY TRUISMS UNFILTERED.

Carolyn Kiel: Great. And I’ll put links to your Facebook and your Instagram in the show notes so that people can get there easily from the show notes.

Yeah, Swarit, again, I’m really grateful that you were on my show today. And as we close out, is there anything else that people can do to help support your advocacy?

Swarit Gopalan (via Arun Gopalan): I would encourage your listeners to read and follow the nonspeaker blogs and their work in general. Please share our work more broadly, so we can continue to sensitize the world one post at a time.

Carolyn Kiel: Yeah. That’s great advice. So many people who are nonspeaking write about their experiences, and it’s a wonderful education and just such a privilege to be able to learn from you and the rest in the community. So thank you again, Swarit, I really enjoyed talking with you today and thanks for being on my podcast.

Swarit Gopalan (via Arun Gopalan): Thank you, the pleasure is mine.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time.