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
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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.
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
