How did your life change after you learnt to communicate through spelling ?
It pulled me out of darkness that is hard to explain. The one where you feel empty in spite of having everything. Now love feels more meaningful and life seems to have renewed purpose. I can be me and do me and help others see me.
How did you feel when the letter board was placed in front of you for the first time?
Little did I know that my life would be changed completely for good. Little did I know that I would be loved for my intelligence. Little did I know I would be getting an education. The list goes on and on.
What is your message for the new parents who are yet to try spelled communication methods for their nonspeaking , unreliably or minimally speaking children ?
Our life has 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.
Why do you need a CRP?
The CRP helps with co-regulation. I ultimately want to type independently, but that is going to take time.
What does it take the CRP to be successful with the speller?
I think the CRP needs to be trustworthy and patient. They should respect my intelligence and trust my abilities. Point of the CRP is to be the best listener that one possibly can be. The space that CRPs create is generally like an intricate piece of art that needs careful engagement.
How can a CRP set themselves up for success?
The motor loops and other such distractions is a tightrope walk that the CRPs need to navigate, the successful ones like my dad do. No amount of training would help as much as building the ability to be fully regulated and present.
How does a CRP's regulation (or lack of) affect you specifically?
I count on the CRP as my north star while spelling.I sense their emotions and am acutely present to their state of mind. Our deep empathy translates into dysregulation when we sense that our CRP is suffering.
What is the most important thing that parents need to know or do to get to open communication?
Presuming competence is the key. During my early open days, I felt like my dad really wanted to know me and my perspective on things. He never thought anything was a stretch for me and truly believed I was capable of communicating. That was the most important thing for me.
Anything else you would like to share that you feel is important for parents and other spellers to know.
It takes a village so don’t hesitate to ask for help. My parents were and are a great team and we have leaned heavily on our family for help and other nonspeaker journeys for inspiration and support. I am certain your journeys are and will be as rewarding and fulfilling as ours.
What would you tell schools and other institutions not providing access to communication to nonspeakers using spelled communication methods?
Spend time and resources to get to know the abilities we have that you don’t understand. Please do not try to fit us into what you know. Till then, allow us our access to communication. I am all for more access to spelling to communicate to nonspeaking individuals. Let the science catch up when it can.
What is your message to a 4-year-old nonspeaking child and to the parent as well?
To the child: I love you and I see you.
To the parents: Please treat your child like a neurotypical 4 yr. old. Just support where needed. Most importantly, find a reliable communication mechanism. Love to you as well.
What is your message for new struggling spellers?
I see you and I love you. I know you got this. Keep living your dream that you will have reliable access to communication soon and keep believing that you can take your communication partner and other loved ones along. The force is with you.
What was the most difficult thing for you to overcome in your spelling journey?
My regulation. I had a lot of difficulty staying in one place to sit through sessions. We just kept going regardless. There were a couple of times where my dad sat next to me on our kitchen countertop to spell. My parents met me where I was and we worked through.
After seeing your journey we have decided to try spelling with our autistic son. Do you have anything to tell us?
I think every step you take in this journey, from this moment onwards will deliver exponential results. I am a living proof of that. All power to you to move forward without doubt. We are with you.
I am a practitioner. What would be your advice with a speller who has started hitting, slapping and impulsive behaviors?
I would be very sensitive to how my practitioner is reacting to the situation. Any negative reaction to me would communicate a lack of understanding that could further dysregulate me. So start with being calm, as hard as it is.
Can you give an example of an activity when dysregulated that works for you?
If my body is bouncing off the walls in a way that me or others could hurt, my dad would coach my body to go slam a weighted ball a few times or do wheel barrow walk etc. that would really help.
What kind of support do you feel would be most helpful?
Coaching my body out of that impulsive action and redirecting towards something more purposeful helps.
What was one thing you wanted to say/express the most when you could finally communicate?
I just wanted to tell my loved ones how much I loved them. Did not lose hope that it would happen as my parents have always moved mountains for me.
You say you know how to read from a young age. How did you feel when your parents/teachers kept teaching you basic reading skills like Phonics?
It was frustrating but I understood it was coming from a place of love and lack of alternatives. We were pursuing multiple things as a family including long, tiring battles with some medical conditions. But I was hopeful that Amma would research schooling options and was confident that we as a family would make the right decisions for my future.
What are the differences you observed from the 2017 India Visit to 2023 India trip?
I have always felt the need to be part of conversations and not just the subject of. My access to communication was the biggest difference in this trip. I was able to have meaningful conversations with my loved ones and the time shared with them was so different from before.
Can you explain your mind-body disconnect?
The mind-body disconnect is really difficult to explain. It is almost like your TV remote that stops working after accidentally pausing the video. My mind works overtime as your fingers would on the remote, but my body would be stuck like the video.
What calms you when you do not feel regulated?
The fact that the caregiver understands my dysregulation and coaches my unruly body helps me to calm down.
At what age did you start reading?
From at least age two, I have been reading.
How did you learn to read?
From all possible sources. Like subtitles from TV, hoardings on the road, books that were read to me, songs I listened etc.
How can a parent help their kid with gaining vocabulary?
Parents should help by treating the child for their age. Please trust your child. Play cognitively rich content even if they are in a different room. Remember listening does not have a look.
When I hear you talk, I feel people with autism are pretty much 'normal' .So, what really are your challenges?
Normal as defined by who? The fact that society does not understand our cognitive abilities is the single most challenge we have. If I must define autism, I would say it is a sensory motor disability and with cognition intact.
How do you work on your motor issues ? What has helped you for overall body coordination?
Motor is very much a work in progress. Purposeful activities including spelling help me. HIIT ( High Intensity Interval Training) helps with my body regulation.
From a family member: Can you stop your stimming?
You need to understand my need for stimming. How it is for you to breathe is how it is to stim for me.To ask me to stop stimming, is not really an empathetic way to look at it. Getting to stop me from stimming would only result in crushing my spirit.
What sort of changes can we ask a school to work upon while accommodating a nonspeaking child?
Leave any assumptions you have about us at the door when you enter school. Presume competence and be formally educated by us for us. Ensure that the curriculum is age level or more. Provide the level of motor and communication support needed in an empowering way. Treat our bodies with respect and trust especially when we are dysregulated – we feel more bad than you can ever imagine and perhaps exponentially more than you feel scared or agitated.
Meet me where I am. I don’t want to hold a peer back nor do I want to be held. We are not competing with each other but competing against our bodies when the content being delivered to us is not challenging. Test us to help us prove how we can be successful, not to prove “I told you so, you are not competent”.
When you think of SPELLERS, what comes to your mind?
Monuments inside minds
Now chiseled through words
A lifelong pursuit of love
Long live the power of those.
In these 2 years, have you ever taken the letter board on your own & given it to Amma/Appa? If so, in what situation and if not, why not?
I definitely have the desire to initiate conversations and communicate my needs even when appa or amma do not drop the board in front of me. Since I have some speech, I use that as my initiation and we go to spelling to expand on that. My hope is that I can continue to build on my speech while building motor skills to initiate on the letterboard.
What support do you think you need to initiate?
Initiating on a letterboard is a new activity that we should intentionally be coached on. While there are parts of the sequence we might be able to do now, such as carrying the letterboard to a person when prompted, the full sequence needs to be coached.
What are your perspectives about the nonspeaker movement and its barriers?
The nonspeaker revolution is at its infancy. There are so many deeply entrenched beliefs on who we are and heavy skepticism on what we can do. The way the society is designed around us, it is in the best interest of many, but us, that we remain this way.
What inspires and gives you hope about the movement?
There are some incredible leaders emerging in this movement that are already driving meaningful change. There is a lot to learn from turning the pages of history and learning from the likes of MLK and Ambedkar about creating lasting social reform that values everyone equally and empowers participation and contributions, making the world better for all.
How can readers of your work support the movement?
Please share our work more broadly so we can continue to sensitize the world one post at a time.
What makes you happy?
Depends on time and place. The source is, in always being understood. Easier with nature and incredibly hard with humans.
What is one thing you would change in the world if you could?
Apathy towards non speakers.
What is time according to you?
Time is not a linear concept for me. Rich experiences make time go faster whereas painful ones linger longer. The fact that we spent years in darkness observing the world around us added more years to our life than measured typically. And spelling seems to go faster for us than for someone waiting to receive those words.
What is your favorite time of the day and why?
I am a totally morning person. I am at my best energy in the morning.
Is there a place that gives you calm and peace?
It depends on what I am looking for at that time. It is sometimes different spaces within the house and other times out in nature. It is more about the now than the where.
What's your favorite dessert?
Lots in this category. It keeps changing with time. The peanut candy ( kadalamittai in Tamil) is an evergreen favorite.
Of all the music you listen to, who is fav composer?
Mozart in Western classical and Illayaraja in Indian music.
Your poem sun is an enigma was beautiful and profound. What made you write that?
I love the natural rhythms of a day, including a start and a stop. I wanted to explore that as well as celebrate the chief architect, the sun.
What is compassion according to you?
A heart that beats for others without being asked.
What is the best gift you have ever received in your life?
“GIFT OF LIFE” from my parents.
Friendship is..
Possibilities that inspire and recharge.
If friendship was a song what would it sound?
Like a melodious poem.
If friendship was a food what would it taste like?
Like a pot of mom’s delicious sambar cooked with love.
If friendship was a scent, what would it smell like?
Like a rose petal.
If friendship was a painting what would it look like?
Like the portrait of a warm embrace.
If friendship was an item of clothing or a blanket what would it feel like?
Like a plush night blanket.
Can I be your friend?
Anyone that respects me to spend time understanding me is a friend and an ally. If you can do that then you can be my friend.
Along with being a super good poet, are you also an avid reader?
I can definitely read/listen to books more. I love to listen to audio books. Lots of podcasts as well. I love history and philosophy. Like Yuval Noah Harari specifically. Also enjoyed Harry Potter a lot.
Did you like the Harry Potter book or movie?
The book was better than the movie. I could use my own imagination with the book and my imaginations are more vivid.
What flashes in your mind when you think of your visit to Japan?
The culture of the people and how orderly most things were.
From your 'Joy of little things' poem, we know that you love ice creams. What is your favorite ice cream flavor?
Yes, I love ice cream. It is one of the perks of living in Florida that I get access to year long sunshine and ice creams. Mango is my favorite flavor.
If you were given a chance to interview someone, whom would that be?
Possibly Hellen Keller.
How do you process words that are addressed to you?
I am perceptive and can see beyond words. However I try to be intentional about the ones I use to communicate as specifically and clearly as I can within the value framework I hold dearly.
What are words about your own identity that you have found to be hurtful?
Intellectually disabled was the hardest one to take although no one took that seriously thankfully. Ableist language, regarding speech specifically, was something that was hard to take as well. I have written more about it here.
How do you like to be identified?
I am a nonspeaking autistic boy born to Indian immigrants that is growing up in a multi cultural society and in a multigenerational household. There is more to my identity and I embrace all of it.
What's something your parents would be surprised to learn about you?
That I am sometimes just lazy, it is not always the body.
Which famous personality do you want to emulate in life and why?
None. I want to forge my own path.
What is your superpower?
I like not dwelling on things out of my control, as hard as it is as sometimes it is my own body. I try to lean in more on times like living pain free or experiences with loved ones or nature. Being present and observant is my superpower, probably.
Why do you write poetry?
Poetry is the door for having the most meaningful impact in the most efficient way for me, And I believe for other non speakers as well. Put simply, it is the soul of our existence.
Many nonspeakers also seem to be prolific poets. Do you have a perspective there?
It is how we think.
It is how we love.
It is how we nurture.
It is all of our complexity in the simplest form.
It is one of the easier ways of communication for us.
What does poetry mean to you?
The abstract at its most creative.
The mundane at its most magnificent.
Our life at its very essence.Very rarely does our life come together as it does when doing poetry.
It is a joy to be had, a joy to be shared.
Who is your most favorite character from all the fictional books you have read and why?
Respect for everyone and the mastery of his craft makes dumbledore my favorite.
Is there a poem that you felt was difficult to write?
GUN VIOLENCE . The urge to finish poems on a positive note is strong for me. I am comfortable with uncertainties within that urge. The poem on guns was the one exception.
What’s one thing that can instantly make your day better?
Hug from someone I love.
Are you watching anything on TV these days?
I really enjoyed the series HEARTSTOPPER on Netflix. I learned about the dynamics of the queer relationships in school settings and how people that are different are treated and the challenges they face. Felt similar to how people of my tribe are misunderstood.
What is the best piece of advice you have ever been given and by whom?
I think that personally my favorite is that we should just keep spreading love without expecting anything in return. No one has specifically told me this but that is how our family operates.
What is music to you?
Love is music in my world.
My mind operates in musical notes.
Life is music in this birth.
My soul thrives in the melodic tunes.
We understand that you are drawn towards melodious tunes. Do you like other forms of music?
I am open to listening to all types of music. I find some of it challenging due to my auditory sensitivity.
You mentioned that you have musical tunes in your head. If you could, what type of music would you like to compose and why?
A type of tribal music like indigenous african music because I connect to that deeply. I would love to meet indigenous communities around the world.
What is the most important thing in life?
Love like your entire life depends on it. Nothing else is as important.
We love your “Meeting the universe halfway” poem? How was your experience writing it?
Thank you for your kind words. It was very emotional to write that. It really led me to the path of thinking about my parents’ mortality and that was scary and difficult to recover from. My parents helped me refocus on the NOW with them.
What subject do you enjoy the most and what makes it enjoyable?
I enjoy history a lot. The stories of individuals that make up historical events.
What is your favorite restaurant to go together as a family?
All the Thai restaurants.
How do you feel about contributing as a writer for an online platform?
Yes. I would never have thought something like this was possible a couple of years back when I started my communication journey through spelling on a letter board.
What excites you about KIND THEORY?
I love the fact that KIND THEORY is appealing to a more diverse population that is keen to engage those like me. It is exciting to be accepted for who I am and for my perspectives to be valued to be given a platform like this.
Any message for other platforms like KIND THEORY?
Powerful voices have emerged from our tribe over the years.It is important that our voices resonate outside of our community and my hope is that those like KIND THEORY will help us do that.
What is your learning through Haikus?
Learning to break down life into moments that can be appreciated and celebrated.
Can you write a HAIKU about your life?
Long long, to belong
Seek seek, peek at the peak
Tale tale, a fairytale.
What is your perspective on new experiences?
I like having a clear mind open to new experiences. I just feel getting new experiences can help you slow down and experience the beauty around you. Being present to what is around you.
What does humility mean to you?
It means that I am aware that my life or my contributions to our larger cause is just a minor piece of our overall history being written.
How do you practice it?
I just focus on doing and sharing what I feel could be valuable out there without worrying about how important I should feel. I know many brilliant minds do not yet have a reliable voice. Being a catalyst to help them get a reliable form of communication keeps me grounded.
What do you do to drown out negativity?
By focusing on my privileges in life. I have a lot to feel positive about. Life has been very kind to me.
What does success mean to you?
Most days, just being able to get to the playing field should be considered success in our case. We need to fight our own bodies. We need to overcome the structures that have no understanding of us and hence inherently designed to fail us.
How does waking up look for you?
I feel constrained by my loops that run rampant
I marvel at my loved ones that refuse to give up
I stand inspired by the sun to begin again.
How do you make sense of your life now?
I sense potential for lots of growth
I sense letting the excuses go
I sense resting the frivolous doubts
I sense living the mighty dream.
What motivates you to write even when you go through difficulty?
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 structures that have only failed them.
How do you process feedback from your readers?
The feedback that my posts are helpful at least to a few in helping to understand our tribe is what I am most grateful for and most encouraged by. It is very important to me that we get voices like mine out of the prisons they are in.
Any message for your readers?
Appreciate all of you that read, share, encourage and support.I look forward to continuing to interact with you in this space. Loads of love.