Empowering Voices - Meet B.S.Rakesh Part 1

 

Dear reader, thank you for the immense love and appreciation of the Empowering Voices series of interviews - an in depth look into the lived experience of the Indian speaking autistics. This is the twelfth interview and Mr. Rakesh is joining us to share his insights and journey. This interview will be in two parts. The poem that comes to mind when I got to know him through his responses is - What life should be by Pat A. Fleming

                           What life should be by Pat A Fleming

To learn while still a child

What this life is meant to be.

To know it goes beyond myself,

It’s so much more than me.

To overcome the tragedies,

To survive the hardest times.

To face those moments filled with pain,

And still, manage to be kind.

To fight for those who can’t themselves,

To always share my light.

With those who wander in the dark,

To love with all my might.

To still stand up with courage,

Though standing on my own.

To still get up and face each day,

Even when I feel alone.

To try to understand the ones

That no one cares to know.

And make them feel some value

When the world has let them go.

To be an anchor, strong and true,

That person loyal to the end.

To be a constant source of hope

To my family and my friends.

To live a life of decency,

To share my heart and soul.

To always say I’m sorry

When I’ve harmed both friend and foe.

To be proud of whom I’ve tried to be,

And this life I chose to live.

To make the most of every day

By giving all I have to give.

To me, that’s what this life should be,

To me, that’s what it’s for.

To take what God has given me

And make it so much more

To live a life that matters,

To be someone of great worth.

To love and be loved in return

And make my mark on Earth.

                                 Welcome to My World

1Q) Please introduce yourselves to our readers..

 

Hi, I am Rakesh, 38 years old. I am an Information Technology entrepreneur and programmer based in Trivandrum. I co-founded the company, Qucentis, 15 years ago. We have been doing projects in many countries including Singapore, Africa and Dubai and I primarily do research for the same. Right now I am working in the field of Artificial Intelligence. I live with my wife Hitha, who acts as an autism advocate and support system, giving  me different kinds of  support with my challenges in interacting with the world. She is also Neurodivergent - ADHD and that helps her understand and accommodate for my special needs.

 

2Q) Please share your hobbies and interests/passions with us.

As a child, I used to be in wonderment of the world around me and used to be very curious. I’ve been fascinated by how things work, especially machines. I would often get scolded for opening up toys and gadgets just to see what was inside and to understand how they functioned. This curiosity has stayed with me through my life and forms a huge part of who I am. This means I often get interested in new topics and go down a path of research trying to understand it. Some of these topics stayed with me as hobbies or special interests. I love machines and have always been good with them because they are predictable and always follow the rules. My most important special interest is what turned into my career - technology, coding and related research and experiments. 

The mechanics of light and how it interacts with the world to make things look interesting and beautiful, intrigues me.  I started photography in my early twenties and have been fond of it ever since.  Photography allows me to express myself creatively without the pressure of social interaction.

I deeply enjoy music, and I have used it as a form of communication. Lyrics of songs sometimes give me words to  express my emotions, which I otherwise struggle with.  Music also has a calming effect on me and it also helps me focus. Sometimes a new favorite song played in loop will give me all the dopamine I need to complete a project that spans over days and weeks.

As a child, I was introduced to reading by my father and his collection of books. They opened me to the worlds of science and math and made me familiar with the wonders of the universe. Later in adulthood, books also helped me learn more about myself and my different needs. From understanding my introversion to getting my autism diagnosis, books played an important role in shaping my life. 

I’ve recently started writing about my lived experiences with autism, which has become a powerful outlet for self-expression. It helps me process thoughts in a structured way and is a form of self-advocacy that allows me to connect with others who share similar challenges. I also enjoy painting, computer games and  cooking.

  

3Q) How do you cope when you’re having a bad day?

A bad day for me involves extreme physical and mental exhaustion, intrusive thoughts, higher sensory sensitivities and overwhelm. To deal with this, I try to make my day and surroundings as calming as possible. My home has been very intricately planned and laid out to help me be at ease, with light and temperature controls, accommodations in every corner etc. I use low-intensity yellow lights in most rooms, and bounce off photography lights on the walls in some rooms to make it even more bearable to me.  So on a bad day, I stay in my happy place, allow myself to rest and relax, try to include as many of my glimmers in my day as possible. I let myself have my meltdowns or shutdowns for as long as I need to calm my senses. On some days, I go non-verbal and words and communication become unbearable. My wife manages important aspects of life and communication for me during those times, until I am back to my routine. She also provides me with a safe space inside the home to have my meltdowns without hurting myself in the process.

 

4Q) What are glimmers in your life? (Glimmers are tiny micro moments of joy - fleeting, everyday moments that elicit a rush of happiness, gratitude, calm, peace, safety, or goodwill)

Quiet Time with Hitha: Whether it’s sitting in comfortable silence with her or just watching a show together, these quiet moments without attached expectations helps me feel calm and safe. Apart from Hitha, I also have a very close connection with a child who I consider as my soul child. Her presence has also been one of the biggest glimmers I have experienced in life. Her energy and light-heartedness has always managed to brighten my day, no matter how difficult it’s been.

Small Sensory Comforts: Many sensory experiences like the feel of soft clothes,nature, a warm heating pad, or the silence from my noise-canceling headphones provide me with the space and setting to calm down. Stimming toys, chilled and mildly flavored water, sour mints, my comfort foods, soft music, low pressure massages etc. help me calm down. I also use melatonin to help with my sleep and a good night’s sleep is also a glimmer.

Working on a New Problem: Whenever I’m deeply engrossed in solving a coding challenge or researching something that sparks my curiosity, I experience a sense of flow. These moments, where my mind is fully engaged, give me a rush of joy and satisfaction.

Unexpected Kindness: When someone shows me a small act of kindness or does something thoughtful, it brings a sudden wave of gratitude and connection. It’s a reminder that there are people who see and value me, even in a world that often feels isolating.

Innocence, intelligence and genuineness, specially from kids: When I see or hear real life stories of human beings being kind to each other, it instills hope in me. I love kids because they give the most unadulterated love and curiosity to the world around them. Any reminders of such positive and genuine expressions of love is certainly a glimmer.

5Q) When did you realise that you are autistic? If you’re a late diagnosed autistic, please write about life before diagnosis and how it changed once you knew you’re autistic. 

I was formally diagnosed with autism at the age of 34, so I’m considered a late-diagnosed autistic. However, the signs were always there throughout my life, even if I didn’t have the words or understanding to recognize them as part of being autistic.

 Before my diagnosis, I always felt different from those around me, even as a child. I was labeled “weird” in school, often bullied, and misunderstood. I had a tendency to isolate myself and play alone with my toys, and I didn’t have many friends until after the age of 10. I was constantly exhausted by social interactions and struggled to maintain friendships because they drained me so much. I constantly felt like I was wearing a mask, hiding my true self just to survive in a world that didn’t seem to make room for me. I burned out badly around the age of 30, losing the ability to do even the things I loved or to maintain a basic routine life. I was misdiagnosed with anxiety and depression, and subsequent treatments did not help with the conditions. Therapy helped to some extent, but I was still stuck in a cycle of burnout, unable to figure out why.

I had suspected having Asperger’s in my early twenties but was dismissed by friends and therapists. It wasn’t until my wife Hitha and I began discussing my behaviors, patterns, and struggles more seriously that we both started seeing a connection to autism. Hitha eventually took notes on my behaviors, patterns, and childhood experiences to present them during the sessions with my therapist. She had to provide my therapist with details about my life, that were otherwise hidden because of my inability to communicate. After my therapist analyzed these patterns over several weeks, I was diagnosed with autism at 35. That diagnosis was a turning point for me. It wasn’t just a label; it was a validation of everything I had been through and didn’t fully understand about myself.

The diagnosis gave me a new framework to understand my life. It explained why I struggled with certain social and sensory experiences and why burnout had hit me so hard. The biggest change was internal—I stopped blaming myself for not being able to "fit in" or keep up with neurotypical expectations. I began to understand that my brain simply works differently, and that’s okay. Therapy became more effective once my autism was recognized, and my therapist could tailor her approach to meet my actual needs. The autism diagnosis also connected me to the neurodivergent community, where I found others who understood and shared  my experiences. I began writing about my journey, which helped me advocate for myself and connect with others going through similar struggles. The diagnosis showed me the path to recovering from my burn out and slowly yet steadily, I have been reclaiming parts of my abilities that I had lost.

               Education and Workplace Experiences

 

1Q) How did you cope with the challenges in school and college?

In school and college, while I performed well academically, I struggled to engage socially and participate in group activities. The social aspect of school was especially exhausting, and I often felt isolated, misunderstood, and out of place. I did not have the social skills to even identify bullying when it was happening to me.

Since my family put more stress on factors of education like knowing my material and thinking creatively/ intelligently than scoring marks, I did not feel stressed about the curriculum. As an undiagnosed autistic, I never got any extra support of any kind and was expected to do everything the other kids were doing. This meant trying hard and failing repetitively in non-academic aspects of student life and being blamed as lazy for the lack of output.

 

To cope with these challenges, I tried to stay invisible as much as possible and learnt to blend myself into the background without being noticed. I also tried to make myself as useful to everyone as possible, so that they won’t hurt me and would show me some kindness. This helped me stay safe. In every school / classroom setting , I would find a friend/ classmate who is generally kind and understanding to me and would help me navigate the confusions related to social aspects. There was some friends who would listen to my special interests, some who prevented me from doing social blunders, some who supported me through my meltdowns etc.

  

2Q) What accommodations ( physical or changes in the mindset of people around you) would help you thrive? 

Educating teachers about learning difficulties and how a bit of kindness and consideration could change lives, would be the most important accommodation that would be helpful. Even kids need to be taught from an early age about how differences are not threatening and they only add layers of possibilities to human existence. Kind, empathetic and supportive behavior should be modeled in front of kids so that they will innately choose to copy such behavior. I would also have struggled less if handwriting wasn’t mandatory for exams and note taking. I still struggle with writing. The option to use different tools and media for learning like personal devices or scribes could be helpful.  Providing clear, direct instructions and expectations (written instructions whenever possible) would help minimize misunderstandings. Assuming competence would also be helpful. My quiet nature has often been mistaken for ignorance and incompetence. In a scenario where my competence was assumed and opportunities provided, I would have learned and evolved better.

  

                            Sensory Challenges

1Q) Please share your sensory world with us.  Please share about Interoception too..

 I am highly sensitive to sounds, light, touch, temperature changes, pain, textures and tastes. I find comfort in dim yellowish lighting and quieter environments, which help me focus and stay calm.

 Loud noises, such as traffic, crowded places, or even household sounds, can be extremely jarring and cause discomfort. Textures and certain types of clothing can feel unbearable against my skin. Loose-fitting, soft fabrics are a necessity for me because anything too tight or rough can become a distraction throughout the day. Hot and humid climatic conditions drain me out and overwhelms my brain to the extent that my brain stops responding to external stimuli. I go into almost a freeze response.

 I need my food to be very specific and controlled, especially in terms of texture. Due to problems with interoception, i find it hard to recognise internal signals of satiety. So I find it hard to understand when I have had enough food and that makes portion control of food difficult.

 

2Q) How does it affect your daily life? 

Going out in public is often stressful because I can’t control the environment. Stepping out of my home for even a few hours could cause a high level of sensory overload, which puts me into a state of exhaustion and frequent shutdowns for days afterwards. So I have to highly restrict going out, which adds layers of limitations. 

Social gatherings are often exhausting. Even if the people around me are pleasant, the combination of noise, conversation, physical presence of others and the pressure of being perceived can wear me out quickly.

 I often have to choose and plan work and social commitments according to my sensory needs and this puts a significant dent on my progress in career as well as social life. Haircuts are a nightmare, but the feeling of grown out hair is also sometimes unbearable.

 Sensory sensitivities also affect my ability to get adequate sleep. Even in my pitch dark, quiet room, i struggle to sleep without the support of sleep supplements and my other accommodations. I struggle to stay asleep, because I tend to wake up to even minute sounds and temperature changes.  Pain sensitivity makes it hard to do necessary health management and support routines like blood tests and scans.

 These challenges shape how I plan my day and interact with the world. Everything from preparing for a trip out to creating a quiet workspace requires extra effort and attention. While I’ve found ways to manage my sensory needs, it remains a constant balancing act, and it impacts both my energy levels and ability to function effectively in everyday life. 

 

3Q)  What accommodations ( physical or changes in the mindset of people) around you would help you thrive?

Access to quiet rooms or spaces, both in public areas and workplaces, would help me retreat when sensory overload becomes too much. These spaces could have dimmable lights, soft furnishings, and noise-reducing features to create a calming environment.

 I always carry all my necessary accommodations ( noise canceling devices and sunglasses to stim toys, sour mints and drinks that help me stay calm ). So more than providing the accommodations, letting me use them without being made to feel bad about it would be helpful. A shift in mindset where people around me become more empathetic and understanding of sensory sensitivities would have the greatest impact. This includes recognizing that I’m not being difficult when I ask for quieter spaces, lower lights, or breaks—it's a genuine need to manage my well-being. Understanding that it’s not personal if I need a break or prefer quieter, more controlled interactions would help reduce social pressure. If more people were aware that some individuals are more sensitive to sensory input, accommodations like dimming lights or lowering noise levels would be seen as reasonable, not excessive.

More flexibility in social and professional interactions, such as allowing virtual or asynchronous participation in meetings, would be ideal. I believe social rules like dress codes are outdated policies that add complexities and unnecessary restrictions not only for neurodivergent people, but for everyone. Valuing and respecting me should be a default choice and not based on what I wear. Such inclusive mindsets would help me be at ease and give my best in any setting.

                          Communication Challenges

1Q) How different is your communication style from the Neurotypicals and how does it affect your daily interactions?  Also please share about the different modes of communication you prefer other than speech and how stress affects your communication abilities if it applies to you..

 I tend to communicate in a very direct and literal way. I cannot pick up on or use subtle hints or non-verbal cues the way neurotypicals do. I prefer saying exactly what I mean, and I expect others to do the same. However, this can sometimes come across as blunt, rude or overly honest, leading to misunderstandings, especially in social settings or workplaces where indirect communication or “reading between the lines” is expected.Small talk, which is common in everyday interactions, feels unnecessary and draining to me, and my avoidance of it can sometimes be seen as disinterest or awkwardness.

 I generally prefer written communication over verbal speech, especially when I’m feeling stressed or overwhelmed. Writing allows me to process my thoughts at my own pace and express myself more clearly. Emails, texts, and messages give me the space to articulate my ideas without the pressure of real-time responses, which is something I find difficult in spoken conversations.

 Verbal communication can become particularly challenging under stress. When I’m feeling anxious, overwhelmed, or in a highly stimulating environment, my ability to speak clearly diminishes.

There are times when I go through periods of situational mutism, where I find it difficult to speak at all. In these cases I use typing on my phone or written notes to continue expressing myself.

 To prepare for more high-pressure conversations, I practice responses and communication techniques in lower-stress environments. For example, I might rehearse what I want to say before a meeting or a social event. This helps me feel more in control and reduces the anxiety associated with unexpected conversations or small talk.

Overall, my communication style is effective when others understand my needs and make space for these differences. However, without that understanding, it can often lead to confusion, frustration, or misinterpretation.

 

3Q)  What accommodations would help you thrive? 

Allowing the option to communicate through email, texts, or other written forms would significantly reduce the stress of real-time interactions. In work or even social settings, this would allow me to process information and respond at my own pace without the pressure of immediate verbal exchanges.

Currently my wife supports me with many of my communication needs by being an interface between me and the people I need to communicate. Being open to this and trusting this process that it would help me give them my best would also help.

I work best when meetings or discussions are planned early. Avoiding last minute meetings except in emergency situations could be helpful. This could apply to both work and social situations, where spontaneity often causes me stress.

Offering quieter or more controlled environments for conversations, especially in workplaces or public settings, would allow me to focus better and communicate more effectively.

 One of the most important accommodations would be for people around me to exercise patience and understand that my communication style is different, but not less valid. Recognizing that I might need extra time to process conversations or prefer writing over speech would reduce the pressure to conform to neurotypical expectations.

 When I experience situational mutism or need to switch to non-verbal communication due to stress, it would help if people didn’t push me to speak but instead allowed me to communicate in ways that are comfortable for me, such as writing or using gestures. Understanding that non-verbal communication is just as valid as speech is crucial.

It would be beneficial if people around me could communicate in a more direct and literal way. Clear, straightforward language, without unnecessary subtleties or social cues, helps me understand conversations better and reduces misunderstandings.

              Dear reader, do come back to read the next part of this insightful interview that will be posted on December 20th.

I would love to carry forward this series as long as possible and share the insightful journeys of Indian speaking autistics. Please reach out if would like to come forward and share your journey and guide parents and therapists. My email - parentingautismindia@gmail.com

DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.

Empowering Voices - Meet Drishaan Grover

 

  Dear readers, welcome back to our fortnightly interview series - Empowering voices that features the lived in-depth experiences of Indian Speaking Autistics. Today, we meet Mr. Drishaan Grover, a talented young man, a linguaphile and a travel enthusiast. The poem - Whispers of the heart by Ikram A from her book - The roadtrip of life, is the poem I feel closely matches the spirit of Drishaan:

         

                     Whispers of the Heart by Ikram A

                  In the midst of silence, my heart is calling,

                  A symphony of whispers, gently enthralling,

                  Within their hushed secrets, I confide,

                  Destiny's map, in whispers, does reside.

                  With each tender nudge, a path unfolds,

                  Intuition's dance, a story untold,

                  Through doubts and fears, I courageously stride,

                  Embracing the whispers, as my trusted guide.

                   In this sacred connection, I find my way,

                   A harmonious journey, day by day,

                   In the whispers of my heart's decree,

                   I shape my heart, boundlessly free.

                      Welcome to my world

Q1) Please introduce yourselves to our readers.

I am Drishaan Grover, I am 27 years old. I was born in Vadodara, Gujarat. I completed some of my education from Vadodara and the rest of my education from Delhi. I have done B. Tech in Computer Science and Engineering. I have been working at SAP Ariba since 2019 as a Developer Associate.

Q2) Please share your hobbies and interests/passions with us. 

I am a big fan of Disney, Pixar, Marvel, Star Wars, Avatar and Nintendo.

I like to solve Codewords.

I enjoy traveling and seeing new places.

I am a big foodie.

I like listening to music (English and Hindi Songs). I am learning to play guitar.

I like to learn languages- I can speak, read and write English, Hindi, Sanskrit, Japanese and German.

I like to do Mandala art- this helps me be mindful and focus on my present.

My passions give me a feeling of consistency in a world that is often unpredictable. They bring a lot of joy. They are a way of escaping and recharging; and regulating after meltdowns or overwhelm.

Q3) How do you cope when you’re having a bad day?

When I am having a bad day, I like to be left alone. I don’t like to be pushed to do things that I don’t want to do. At times, I have a meltdown. I am learning to redirect my anger by squeezing and releasing stress balls and taking deep breaths. Talking to my mother and sharing my worries, destresses me.

Listening to music and engaging in my passions helps me.

I regularly do meditation and yoga and go for walks. It makes me feel relaxed.

Q4) What are glimmers in your life?

Talking about my special interests and listening to my favorite songs are the glimmers in my life. After my work is over, I look forward to watching my favorite TV shows and researching about my interests. Another glimmer for me is looking at cute things and feeling soft plushies. Smell of Maggi being cooked brings me immense happiness.

Q5) When did you realize that you are autistic and how life changed once you knew you’re autistic.

I was diagnosed Autistic at the age of three along with my twin brother. My parents had gone for my twin brother’s diagnosis. I accompanied them. Lucky for me, the psychologist identified me as Autistic too. I understood more about my Autistic experiences when I watched a TV show ‘Aapki Antara.’

              Education and Workplace Experiences

Q1) What are your experiences in school/college... What challenges do you face?  If you’re working, please include your workplace experiences too.. 

School:

My parents have been very open about me being Autistic. Schools did not want to admit me due to the stereotype that exists that Autistic people have challenging behaviors. It required a lot of persuasion from my parents to get me admitted to my first school in Vadodara, from where I did my schooling till Class 2.

Due to lack of services and support that me and my twin brother required, my family shifted to Delhi. I took admission in a mainstream CBSE school near my house.

Shifting to this school was not easy for me. I had not only to adjust to a new school, the city and the house were new to me- I was alone here with my mother and sibling.

In school, I was required to learn Hindi, which was challenging. My class teacher was unfortunately also my Hindi teacher and she did not like me. She would often say unkind words that would make me sad... however, my school principal was extremely supportive.

Due to my dysgraphia, my classwork used to be incomplete and my note books would not be neat. My friendly classmates would help me complete my work.

A few teachers would ask me to write and rewrite thinking that this would improve my handwriting, but this made it worse. I would feel nervous and anxious during their class, so much that my grades in those subjects started to deteriorate.

In middle school, teachers were more accepting and appreciative of my strengths. My S.St teacher compared me to a sponge - even though I would roam around in the class, I would absorb more than other students. I enjoyed learning and Mathematics was my favorite subject.

But then again, noticing errors made by teachers made me unpopular!

Due to my slow writing, I would struggle to finish the exam paper on time. In the year 2013, when I was in Class 10; I was not considered a child with Special needs as per the law that existed. I did not get extra time and struggled a lot in board papers. Despite this I got a score of 10 CGPA

As this school was only till Class 10, we had to look for another school. One of the schools did not allow me to give admission tests for Class 11 as they saw me stimming in the waiting area. They thought I was mentally disturbed and was not ready to be schooled!!

We had to struggle to get extra time during examination from the board. They argued that when I could do in 10th, I should be able to do it again in 12th. After a lot of persuasion from my determined parents, I finally got extra time for Class 12. This helped me immensely.

One thing that continues to hurt me is that though I was good in music, acting and voice overs, I wasn’t given a chance to participate in the co-curricular activities and annual days. My teachers would also be wary of taking me on school trips/outings.

College:

At the time of admission to University, I was required to submit Physical Fitness Certificate. No doctors were willing to give this...somehow, they felt that being Autistic made me physically unfit! We had to battle for this one too.

Looking back, I feel that my time in college was like a roller coaster ride. I enjoyed Mathematics and coding but some subjects were really difficult. My teachers and other faculty members were kind and supportive.

I made many friends who helped and supported me... but when it came to group projects, I was never included in any of them, so I had to do solo projects.

During this time, I also learnt to travel independently...there were a few hiccups initially in handling money and I had to learn it the hard way (despite having a perfect score of 100 in Math!)

Employment:

The placement cell at college taught us soft skills and helped us prepare for interviews.

I am good with academics, so I have always found it easy to clear the technical round of the recruitment process...but I have always been rejected in the HR round. Even the HR team would praise my technical knowledge, but I would not get a breakthrough.

One of the big names in IT industry that had come for campus placements stated that they supported disabled individuals and we were all confident that I would get the job... however in the HR round the interviewer did not ask me any questions and handed me a toffee! They rejected me by looking at my differences from their expected response related to eye contact, handshake and gestures!

I was interviewed by SAP LABS through a skill-based assessment where I could reveal my expertise. They did not pack back-to-back interviews into one day, they scheduled them across several days to reduce my stress. I got this job and I was YAY!!!

Moving to Bangalore, living all by myself and understanding and adjusting to workplace dynamics was not easy. I was assigned a buddy in my office but due to some unavoidable circumstances, he and I could rarely meet. Most of the times, I had no one to talk with, get help or share my concerns.

Since the pandemic, I have been working from home. I have made friends with other Autistic office colleagues. We do online yoga and meditation, daily. Last December, we all went on a trip with my friends to Kerala. They understand me in ways that no one else did. They seem to ignore societal expectations of how a person should sit, talk, move, dress, and act, freeing me to do the same. They also actively appreciate parts of my personality that others find bothersome. I am so blessed to have found them!!

Q2) How do you cope with these challenges?

Being aware of my own needs, communicating them and asking for supports have helped lower some of the barriers in my life. 

Managing my schedule with a proper study/ work- life balance, staying physically active, practicing relaxation techniques, getting enough sleep, and engaging in my passions all help me cope with the challenges.

Dialogues from my favourite films help me stay positive. When things are not going right, I tell myself- ‘Just keep swimming, just keep swimming...”

Q3) What accommodations (physical or changes in the mindset of people around you) would help you thrive in this scenario?

Some things that can help us thrive are as follows:

• Sensory neutral environments.

• A planner and notebook, to create a list of daily study/ work tasks.

• Provide seating or fidgets to aid focus.

• Keep things predictable and inform about changes as soon as you have information about them.

• Meet one-on-one for instructions and feedback.

• Provide flexible work arrangements

• Give time for processing.

• Give one bite at a time of complex information with pauses in between to digest each new fact.

• Flexibility from neurotypical people- please remember that we are in environments that are not suited for us.

• Neurotypical peers need to put in effort to better communicate with us.

                   Sensory Challenges

Q1) Please share your sensory world with us.

Since childhood, I find it painful when someone cuts my hair or nails. I find it ticklish and uncomfortable, when someone touches or hugs me. Only my mom’s hugs are tolerable. I avoid going barefoot, especially in sand or grass. I may not notice when my face or hands are messy.

Sudden noises hurt my ears.

I am able to hear conversations in the distance. It is difficult for me to cut out sounds – notably background noise - leading to difficulties in concentrating. I freeze when my brother is making sounds or there are songs being playing in the background.

Certain smells can be intense and overpowering. I cannot stand them at all.

I have poor depth perception so I find it difficult to throw and catch a ball. I easily bang into things and bump into people.

I may stand too close to others, because I cannot measure my proximity to other people and judge personal space.

I have difficulties with fine motor skills-closing and opening small buttons, opening packets and tying shoe laces is difficult.

I do not have neat writing. I find it difficult to alternate between looking at the board and my notebook.

I am unable to interpret certain bodily sensations, e.g., I do not know when my tummy is full or when I am going to explode.

I like touching soft things. I like to rock and pace. I like to push my body against the wall.

Q2) What accommodations, physical or changes in the mindset of people around you, would help you thrive?

Our sensory challenges are real. It is my sincere request to all people to not invalidate or dismiss them.

Also, please keep the environments sensory neutral.

It is very important for us to have quiet spaces in public places, to deal with our overwhelm.

To protect my senses, I am learning to avoid sensory distress. I am learning to leave sensory loud places before they get too much.

                Communication Challenges

1Q) How different is your communication style from the Neurotypicals and how does it affect your daily interactions? 

Talking to people when I meet them for the first time, is not easy for me. I may look away and people might feel that I am not listening to them.

As I get comfortable, I often like to talk about topics relating to my special interests.

While conversing (especially if the topic is of interest), I may speak loudly, fast and over others.

When someone gives me multiple instructions at the same time, it confuses me.

I don’t do well in groups when too many people are talking simultaneously,

I prefer clear and direct communication style. I may not understand subtle body language or facial expressions. Mixed messages confuse me. I tend to interpret statements literally, sometimes missing the additional layers of meaning tucked into sarcasm or body language. This can lead to misunderstandings.

I mostly use speech for communication. When communicating with colleagues at work, I prefer written communication as it gives me more time to think and process. Sometimes when people do not understand my point, I draw it for them or show a video/ article about the same. When I am stressed, I may not be able to access or process words. I may use phrases from my favourite films/shows to express my feelings.

2Q) How do you cope with this challenge?

I like small groups and one-on-one interactions.

I’m great at following a process when I know all the steps.

For multi-instructions, I break the instructions into steps, I do the first instruction, then I do the next instruction and so on until the instructions are done. Sometimes it helps to repeat the instructions in my mind.

To avoid misunderstandings, I make my own words as clear and direct as possible.

If I am unclear about something, I ask the person to repeat what they have said.

3Q) What accommodations would help you thrive?

Some things that might help me are:

• Using direct communication rather than inferences, hints or sideways

communication.

• Using my name before giving me an instruction helps me attend better

• State your feelings clearly, state the things you would like me to do, state the rules aloud.

• If something about me confuses you, ask me directly.

              Relationships

1Q) What do you look for in your relationships?  What challenges have you faced in your relationships?

I struggle with social situations, understanding social cues and subtle body language and frequently like talking about my passionate interest... I have been called odd for this. I have been weirded out for pacing or rocking.

I have never got together with friends outside of school or college. Rarely have I received phone calls from friends or have been invited to social activities/ parties.

I like to socialize on my own terms.

I want friends with whom I can share my passions.

I seek friends who accept that I might act different or need things to be explained plainly. I look for people who are willing to understand my life experiences. I have wonderful, deep friendships with people who are kind, and who value me as well as my sincerity. The people who I want in my life should be trusting, respectful and treat me as an equal.

3Q) What accommodations or changes in the mindset of people around you would help you thrive?

There is a myth that all Autistic people are loners and like to be on their own. Yes, some, maybe, just as some neurotypical people are loners. Many of us DO want friends and a social life.

We see friendship differently than others, so applying others’ definition to our friendship may not work.

I find it helpful to know the friendship status- whether or not I should connect with you or is it a hi/ bye kind of friendship.

                       Bullying

1Q) Have you faced bullying in school/college/workplace? Please share a few details..

In my preschool there was a kid who would everyday throw my belongings out of the window. When I was in Class 5, another child started doing this. I remember grabbing my things with one hand and punching him tight with the other hand. Thankfully, my teacher was on my side and this kid never tried it again.

One of the first times I remember another kid seriously hurting me on purpose at school was when I was 17 years old. The teacher left the room and this boy yanked me out of my seat and pushed me. I felt unbearable pain in my head as he grabbed my hair.

Perplexed, I pushed him away. He was angry for the extra time I was getting for exams.

He thought I was faking my disability! Nothing was ever done to this boy.

In college, a batchmate pushed a wrapper of a chocolate that he had eaten, into my pocket. I did not realize that he was being nasty. When several more incidents with this person happened (knocking my bag, taking my keys, whacking my earphone out), I discussed with mom and she told me that this was subtle bullying. My other friends talked to him and made him stop.

2Q) What accommodations or changes in the mindset of people around you, would help you thrive?

Education about neurodiversity in school at a very young age is paramount to reducing bullying. Neurotypical children need to be educated about Autistic behaviour and communication and this chapter needs to be refreshed again and again. Opportunities need to be created for all students to interact with each other in meaningful ways,.

It is important for parents to talk to their child about bullying- What is bullying? how does it look? And practice with them reporting a bullying incident.

               Masking

1Q) Have you ever had to mask to look neurotypical? Please share your experiences.. 

Yes, I mask.

I try and make eye contact. I try and adjust my face and voice according to the environment I’m in. I avoid self- talk and stimming in public places. I keep away from talking about my special interests.

It is a survival strategy that I use to get myself through some uncomfortable situations.

2Q) What challenges have you faced because of masking?

Masking takes a lot of concentration and effort; it drains me of energy. It makes me feel uncomfortable and nervous as I feel I am hiding parts and cannot be myself.

Sometimes I get it wrong— I talk so softly and slow that people do not get me.

And sometimes despite my best attempt, people are able to apprehend that I’m different.

               Towards a better tomorrow

1Q) Please share your message to parents of autistic children in how they can create a nurturing environment at home.

Understand that autism is part of your child. That is what makes them who they are. Accept and validate their experiences. Do not keep this information away from your child.

Make the home a low arousal sensory environment and a place of calm. Let it be a safe space for your Autistic person.

Make sure that your child knows what is going to happen (possibly with a visual chart).

Eliminate uncertainty as much as possible.

Do not overschedule social occasions.

Connect with your child- pursue activities they enjoy and find interesting.

Be patient and always be there for them.

2Q) Please share your message to therapists on how they can include neurodiversity affirming practices in their approach.

We are not puzzle pieces for you to solve. Look at us as fellow humans, not as a client to extract money or a guinea pig to practice your techniques on. Do not try to change us - we are exactly like we should be.

Do not ask for eye contact and do not make a fuss about stimming. Be understanding about our passionate interests. Do not just break our routines- they may seem nonfunctional to you but are extremely important for us. Do not try and desensitize us to painful sensory information.

Capitalise and focus on our strengths.

We are capable of making choices and decisions so do not do this for us.

3Q) Please share your thoughts on how we can work towards an inclusive and neurodiversity friendly society.

Inclusion is not just having Autistic children in inclusive schools or Autistic people at workplaces. Real inclusion is to provide support and access needs.

By having accessible public spaces and recreational activities we can work towards an inclusive and neurodiverse friendly society.

We also need to educate everyone about Autistic experiences and neurodivergence through awareness campaigns, workshops etc. to dispel common myths and misconceptions and foster greater empathy and understanding.

 Thank you dear Drishaan for sharing your journey and insights with us. God bless you and may all your dreams come true!

I would love to carry forward this series as long as possible and share the insightful journeys of Indian speaking autistics. Please reach out if would like to come forward and share your journey and guide parents and therapists. My email - parentingautismindia@gmail.com

DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.

Empowering Voices - Meet Swara Swami

 

In today's interview in the immensely popular Empowering Voices Series, we meet a talented musician on the spectrum - Ms. Swara Swami. We are both ardent music lovers and this is the poem that comes to mind when I got to know her better over the course of this interview :

                       Bryanna T. Perkins - A Friend Found In Music.

Music is the ocean

That pulls me to the shore.

Music is the rhythm

That moves me to the core.

Music is the therapy

I need when I feel blue.

Music lifts my spirits

To make sure I pull through.

The times when I'm most cheerful,

It's clear music was there.

Music is the needed friend

When no one seems to care.

                           Welcome to My World

1Q) Please introduce yourselves to our readers.

I am an autistic Music Therapist, singer, current Masters in Expressive Arts Therapy student and a Grammy nominee.

2Q) Please share your hobbies and interests/passions with us. 

Singing, watching movies and shows, exploring nature, meditation, dancing, acting, surfing the net, music, food etc. They not only relax me, but they also bring joy to me.

3Q) How do you cope when you’re having a bad day?

I do a lot of breathing techniques, I stim with music, I also talk to myself.

4Q) What are glimmers in your life? (Glimmers are tiny micro moments of joy - fleeting, everyday moments that elicit a rush of happiness, gratitude, calm, peace, safety, or goodwill)

When I listen to music, when I watch movies and shows, when I dance, when I sing/hum, when I get accepted, when I am complimented.

5Q) When did you realise that you are autistic? If you’re a late diagnosed autistic, please write about life before diagnosis and how it changed once you knew you’re autistic.

I always knew I was different from everyone. I went through a series of misdiagnosis and possible diagnosis. I got diagnosed at the age of 16. On one hand, I got a sense of relief that I can understand myself now, but I also had self-doubt as many people would often say that “I don’t look autistic.”

                     Education and Workplace Experiences

1Q) What are your experiences in school/college… What challenges do you face?  If you’re working, please include your workplace experiences too..

My school experiences weren’t easy. My teachers didn’t understand me. They thought of me as a troublemaker as I would keep asking questions. They used to suggest me to go to boarding school. And this is something I don’t get. Why is boarding school a place to punish people? Same way I don’t get why they think our traits makes us troublemakers. My headmistress sent me home saying they don’t want students like me there. I had to go apologise to her the next day and she took me back in. For my coursework, I always need extra time. I also need visual cues. I didn’t get any support at International College of Music (ICOM) and failed many semesters due to lack of accommodations. While at Berklee College of Music I had support, I also had teachers who didn’t understand me. At one point I was told by a teacher to make my needs more known. I have been trying to take the CBMT exam, which is the exam Music Therapists have to take to get board certified. I have not been able to pass the exam as multiple choice exams are very hard for me. Its hard for me to choose the best answer between the four as all four sound right to me. With workplace, I didn’t really share at my first workplace as they might not understand. But my internship site has been very understanding of it.

2Q) How do you cope with these challenges?

I stay determined to fight. I try to take help from my community. I also sing, dance, explore nature and meditate.

3Q) What accommodations ( physical or changes in the mindset of people around you) would help you thrive in this scenario?

I need a separate room to take an exam. I also need extra time for my assignments and exams. I also need powerpoints

                         Sensory Challenges

1Q) Please share your sensory world with us. 

I am quite sensitive to high pitches, spicy food, touch without consent etc. I also cannot sit in one position for long hours.

2Q) How does it affect your daily life?

I tend to avoid it. For movement, I need to stim. I change positions or stand.

3Q) What accommodations would help you thrive?

I wear ear phones for high pitches, eat medium spicy food etc. I would always expect people to ask me before they touch me. Also to let me stim.

                   Communication Challenges

1Q) How different is your communication style from the Neurotypicals and how does it affect your daily interactions? 

My communication style is very blunt and straightforward. Neurotypicals perceive me as rude but I mean well. I tend to overexplain things. I communicate better with writing than talking. I need to script before I speak to people.

2Q) How do you cope with this challenge?

I just need to keep reminding myself that this is the best I can do and there is nothing wrong with me.

3Q) What accommodations would help you thrive?

Just some understanding that I mean well. I will never say anything to hurt another person.

                      Relationships

1Q) What do you look for in your relationships? What challenges have you faced in your relationships?

I have never had friends in school. I was bullied heavily, everyone perceived me as weird and different. I had friends only in college. They were much more accepting towards me. But I feel the most comfortable with neurodivergent people, whom I was able to find during the pandemic. I feel so much support from me. I feel that I am not alone. My family has been supportive towards me. They have supported my dreams and challenges.

2Q) How do you cope with these challenges?

I am a loner. For a while I have only been engaging with neurodivergent people and that has helped me. I focus on doing things that I need to do. I remember last time when I was crushed hard due to a friend leaving me, I decided to focus on studying for my Music Therapy exam, and I decided to do my Masters at Lesley University.

3Q) What accommodations or changes in the mindset of people around you would help you thrive?

What I have noticed is, people say how much they understand neurodivergence, but then if I unmask and show my traits, they get shocked. I cannot mask all the time. So please accept me for who I am and mean it.

                       Bullying

1Q) Have you faced bullying in school/college/workplace? Please share a few details...

I was bullied heavily in school. They all felt I was weird and different. I didn’t share my autism diagnosis then but still they felt I was weird. I also faced a lot of racism by my peers. I was also bullied for my looks and size.

2Q) How do you cope with these challenges?

I used to listen to a lot of music. Linkin Park specifically helped me a lot during that time. I used to take out all my rage through their songs. Disney songs also used to help me motivate. I would sing as well.

3Q) What accommodations or changes in the mindset of people around you, would help you thrive?

It's not cool to bully someone different from you. There is always a reason why someone is different from you. Bullying someone only shows your true character.

                     Masking

1Q) Have you ever had to mask to look neurotypical? Please share your experiences & also the role it may have played in your late diagnosis.

I always do. I don’t know all my life I had been masking. When I mask, people do not even see me as a neurodivergent, but when I get close and I unmask, they are so shocked. And at the moment, it's hard for me to unmask as I don’t even know I learnt to mask in the first place. I always try to hide my autism diagnosis for any job interviews. I mask in front of them.

2Q) What challenges have you faced because of masking?

I face burnouts and shutdowns due to masking. And if I unmask in front of neurotypicals, they are always in shock because that's not how I used to present myself.

3Q) When did you decide to unmask and how was the experience?

There is no specific incident, but I would say around 2 years ago when I learnt what was masking, I slowly decided to unmask. I also unmask after meeting any neurotypicals. I would unmask in my room.

4Q) What accommodations or changes in the mindset of people around you, would help you thrive?

If you say you accept me, please do. Don’t be shocked when I unmask as masking comes naturally to me.

           Executive Functioning Challenges

1Q) What executive functioning challenges ( adaptable thinking, planning, self-monitoring, self-control, working memory, time management, and organising) have you faced and how does it affect your life?

I am very good with planning and organising. Time management I need some work with.

Adapting is always a challenge for me. Self-control too. During burnout, I do have issues with working memory, though not always a challenge.

2Q) How do you cope with these challenges?

I meditate, do some walking. I do breathing exercises. I also write down what is expected.

3Q) What accommodations would help you thrive?

I need a separate room and some time to breathe and process.

                    Social life

1Q) What challenges have you faced in your social life?

So I don't generally like parties. Its too overwhelming for me. There are too many people and I don’t know who to have a conversation with. Plus the loud music can be a lot. I prefer small hangs. There is some structure there with who I can talk to and what to talk about. I also like meeting people at cafes. For me, there is a limit. I can only meet people for at the most 2 hours, after I get overwhelmed.

2Q) How do you cope with these challenges?

I script before meeting people. After any social hang, I come home, unmask, stim and listen to a lot of music. I also do breathing exercises.

3Q) What accommodations or changes in the mindset of people around you would help you thrive?

I think people have this mindset that disliking parties makes you old and boring. That’s not the case. There is a limit to things and it gets stimulating. Make it sensory sensitive, let there be some structure. If needed, there should be a place to process.

                            Comorbidities

1Q) Please share about what comorbidities have you faced? 

I have alexithymia, anxiety, trauma etc. I also have PCOS and maybe PMDD.

2Q) How do you cope with these challenges?

Dealing with alexithymia is still hard. I don’t understand emotions and feelings until much later. I don’t even realise if I have made any mistakes. I go for therapy, meditate and journal.

I also do Mandala coloring to regulate. I don’t know if I have PMDD, I am still discovering.

3Q) What accommodations or changes in the mindset of people around you, would help you thrive?

With alexithymia, as long as you tell me, it would help me. It's actually saving me. Mental health is a community thing, not an individual thing. So rather than shaming me for my mental health, listen, support and help me.

                   Towards a better tomorrow

1Q) Please share your message to parents of autistic children in how they can create a nurturing environment at home..

Please accept your child for who they are rather than telling them to adapt and change. Their brains are wired differently so it's very hard for them to change. Please encourage their strengths. Don’t go for ABA as their techniques can cause a lot of harm to autistic children. At the same time, it fixes and cures autistic people. Autistic people shouldn’t be fixed or cured, they should be themselves. Let them stim, give them time to process. If possible, try to make arts as a part of their lives.

2Q) Please share your message to therapists on how they can include neurodiversity affirming practices in their approach..

Encourage neurodivergent clients to be themselves. Work with them in such a way where they can be themselves. Focus on their strengths rather than punishing them. Encourage them. Also be authentic with them as they value honesty.

3Q) Please share your thoughts on how we can work towards an inclusive and neurodiversity friendly society..

All neurodivergent people need is acceptance. If you just give them that, the world will be a better place. If you continue to employ neurodivergent people in jobs with accommodations, they would do wonders. They are different but capable of doing so many things.

         Thank you dear Swara for sharing your journey and insights with us. God bless you and may all your dreams come true!

I would love to carry forward this series as long as possible and share the insightful journeys of Indian speaking autistics. Please reach out if would like to come forward and share your journey and guide parents and therapists. My email - parentingautismindia@gmail.com

DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.