Empowering Voices - Meet B.S. Rakesh Part 2

 Dear reader, the wait is over and we are back with the second part of the insightful interview with Mr. Rakesh. Let's get started without any further delay.

                                     

                       Relationships

1Q) What do you look for in your relationships with  friends/family/colleagues/partners...

What challenges have you faced in your relationships? 

In my relationships, whether they are with friends, family, colleagues, or my partner, I look for a few core elements that help me feel safe, understood, and valued. 

I value directness and honesty in my relationships. I appreciate when people are clear about their intentions, emotions, and expectations. It helps reduce confusion and miscommunication, which I find overwhelming.  

I need people around me to be patient and understanding of my communication style and sensory needs. I look for relationships where I can be myself without feeling judged for my differences or my need for space and quiet time. My direct and literal communication style is often misunderstood by neurotypicals. People may misinterpret my bluntness as being uncaring or rude, which can lead to conflict or distance. I often have to explain that I’m not being cold; I just prefer clarity and honesty. Superficial small talk and casual relationships don’t fulfill me. I prefer fewer, deeper connections with people who share mutual respect, support, and emotional depth. I’m drawn to relationships that allow for thoughtful conversations and meaningful interaction. 

I look for people who understand that I need time alone to recharge. Whether it’s friends or my partner, I need them to recognize that my need for solitude isn’t personal—it’s necessary for my mental and emotional well-being. Unpredictable or inconsistent behavior from others is stressful for me. I seek relationships where I can rely on consistent communication, behavior, and interaction, as this makes me feel safe and reduces anxiety.

2Q) How do you cope with these challenges? 

I focus on a few deep, meaningful relationships rather than trying to maintain a wide social circle. I put my energy only into relationships with people who are willing to understand my neurodivergent needs. I surround myself with people who are empathetic and patient, and who don’t take my need for space or direct communication personally. Over time, I’ve learned to gently distance myself from relationships where my needs aren’t respected or understood. I also started including more autistics in my social circle, which makes communication very easy and the connections more rewarding. I also try to openly communicate my needs, drawing boundaries where necessary and advocating for my needs. I’ve become better at setting clear boundaries in relationships. I’ve learned that it’s okay to say no and prioritize my own well-being. 

By being kinder to myself, I’m able to navigate relationships with less guilt and more confidence. 

Whenever possible, I choose written communication over verbal interactions. Whether it’s sending a thoughtful message to a friend or following up on a conversation with a detailed email, writing allows me to express myself clearly without the stress of real-time conversations. 

For particularly stressful social interactions, I use mental or written scripts to help guide me. I rehearse conversations before they happen, especially when I anticipate tricky topics or emotional discussions. This helps me feel more in control and reduces the anxiety that comes from navigating complex social cues.

 

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

 There is a general human tendency / need to connect experiences of other people with our own experiences to be able to empathize with their situations. But when someone is communicating their neurodivergent experience, trying to draw parallels with one’s own neurotypical experience does great injustice and invalidation to the actual neurodivergent experience.

 Understanding the plights of someone from a different neurotype requires believing their experience with the acceptance that it is something beyond our own experience. It is okay to not be able to fully understand that experience. All that is needed is to choose to be kind and patient. Recognizing that I may experience the world in a different way and that my needs aren’t unreasonable but essential would help foster healthier connections. This one shift in mindset will provide the basis for all other accommodations including respect for my need for alone time, need for clear, honest and direct communication, flexibility with social expectations etc.

If people around me could be more flexible with social expectations—like reducing pressure for spontaneous hangouts or casual small talk—it would make social interactions far less stressful. Knowing that I can engage on my own terms without the fear of letting others down would greatly improve my social experience.

If people could celebrate what makes me unique rather than seeing my communication style or sensory needs as challenges, it would create a more inclusive and supportive environment.

 A mindset that values authenticity over conformity would help me feel accepted as I am. If the people around me were less focused on fitting into typical social scripts or expectations, it would reduce the pressure I often feel to mask or adapt to neurotypical norms.

 

                                 Masking

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

 Yes, I have often had to mask my innate tendencies and my personal needs in order to stay safe, starting from my childhood.

I began observing others and mimicking their behaviors to protect myself from bullying and isolation. I also forced myself to suppress behaviors like stimming, to avoid being criticized and made fun of. I was often criticized for my plain resting face and hence I practiced smiling all the time. Since making eye contact was so hard for me, I learnt to look between peoples eyebrows, to fake eye contact. These efforts were exhausting, and the more I masked, the more disconnected I felt from myself. But it seemed necessary to avoid being singled out or ostracized.

What I lacked in social acceptance, I tried to compensate by making myself very helpful for others. In Spite of that I was regularly manipulated, bullied and isolated. I worked hard to blend in, which meant that my struggles were often dismissed as being “just shy” or “a bit different.” My academic performance and skills in my areas of interest further masked the deeper challenges I was facing.

Even now, I script responses in my head, rehearse conversations and facial expressions, and try to blend in by mimicking the behaviors of my neurotypical peers.

 At work, office politics, group meetings, and constant social interactions all required me to suppress my natural tendencies. And when I failed at it, my accomplishments at work were disregarded, devalued or even taken away from me without giving credit.

  

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

Since I wasn’t diagnosed autistic in early life, and was able to mask some of my obvious traits, my struggles were often overlooked. I myself didn’t realize I was masking for a long time—I just thought I had to work harder to be “normal.” It has taken a significant toll on my mental health. Constantly pretending to be someone I’m not led to chronic burnout, anxiety, and a sense of never fully belonging. I have now lost more than 5 years of my life to burnout and I’m still in the process of recovery. I have lost friendships and  work opportunities due to miscommunications and failings because no matter how hard I try, I can never understand the nuances of social communication or mask effectively.

It wasn’t until much later in life that I began to peel back the layers of masking and realize that I had been suppressing my true neurodivergent self all along. This discovery was key to understanding why I had struggled for so long, and it eventually led to my autism diagnosis at 34.  Unmasking has been a slow, challenging process, but it has brought me much closer to understanding and accepting who I truly am.

 

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

I decided to start unmasking after my autism diagnosis at 34, but I didn’t know how. The main catalyst for my decision to unmask was reaching a point of intense burnout. Around this time, my wife Hitha and I had started having deeper conversations about my behaviors and patterns. Having recently witnessed Hitha’s ADHD diagnosis and how uncovering her true self helped her also provided me with some motivation to explore my true self.

Once I was diagnosed with autism, it was like a lightbulb moment—I finally had the language and framework to understand why I had always felt different and struggled with social dynamics. The diagnosis gave me the validation I needed to stop pretending and start living authentically.

Unmasking has been a slow and ongoing process, but initially, it felt both freeing and frightening. I started by allowing myself to be in my safe space, not pushing me to run by the neurotypical clock or to fulfill social demands. It led to a lot of introspection, going back in thoughts to my childhood, and trying to narrate my story in the light of the new diagnosis. It led to a lot of emotions, outbursts and finally coming to terms with my inner self, over the span of a year. For the first time, I allowed myself to show behaviors I had previously hidden, like stimming or needing to leave social situations early to avoid sensory overload. I slowly started writing online about my autistic experiences and started connecting with more autistics around the world, who share similar experiences. And that was validating and empowering.

Nevertheless, in social and professional settings, I’ve faced challenges when trying to be more authentic and asking for accommodations. In most cases, people who don’t understand neurodivergence can be dismissive or uncomfortable with my differences, which makes unmasking feel risky.

 

Unmasking is an ongoing process, and I’m still learning to balance being true to myself with the demands of the neurotypical world. The experience has taught me that unmasking isn’t an “all or nothing” situation—it’s okay to choose when to unmask based on how safe and supported I feel in a given environment. What’s most important is that I no longer feel the need to hide my neurodivergence out of shame or fear.

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

 A major mindset change would be for people to accept neurodivergence as a natural variation, rather than expecting everyone to conform to neurotypical norms. When people are more open to different ways of thinking, behaving,and existing, it would take the world a long way forward in this direction. Also, realizing that any human being is just an accident away from a disability could be a good place from which to inculcate empathy for other disabled people. I believe that deciding to be kind to the needs of disabled folks around them is a deliberate choice people should start making.

 These different needs for me include sensory-friendly environments,  straightforward and honest communication, choosing asynchronous and written modes of communication whenever possible, remote or flexible work options etc. Being patient when I take time to process information, speak more directly, or need space would reduce the exhaustion and burnout I will have to go through after social communication. 

A shift away from valuing people primarily for their social skills or ability to network would create more space for neurodivergent individuals like me to contribute in ways that align with our strengths. Instead of focusing on how well I fit into social dynamics, appreciating the work, insights, or skills I bring to the table would help me feel valued without needing to mask or conform.

 

                             Executive Functioning

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?

 When a plan I’ve carefully constructed doesn’t go as expected, it can lead to significant stress and confusion. I tend to rely on routines and predictability, and when situations demand quick shifts or problem-solving on the fly, I can feel overwhelmed. This can make it difficult to adjust to new information or sudden changes in plans, leading to anxiety or shutdowns. And I believe it is unfair to expect us to change our plans according to the whims and fancies of neurotypicals.

 Additionally, I can become hyper focused on tasks that interest me, making it hard to switch gears or attend to other responsibilities.

 When I feel overwhelmed or stressed, it’s difficult to regulate my emotional responses. This can manifest as meltdowns, frustration, or shutting down altogether. And I might need considerable time and support to recover from it.

Minor changes in my physical space can make me prone to accidents and injury. And minor changes in my routine can rob me of the mental space and energy to carry on with my day and tasks.

 

2Q) How do you cope with these challenges? 

Coping with executive functioning challenges requires a mix of strategies and tools that help me manage tasks, stay organized, and reduce overwhelm. Over time, I’ve developed various methods that allow me to work around these difficulties and improve my productivity and well-being.

 Choosing a low stress, predictable lifestyle and life/ work environment is the most important accommodation I have provided myself with. For tasks that might shift unexpectedly, I try to have backup options ready. For instance, if I’m working on a project and anticipate changes, I keep alternative approaches or timelines in mind.

 I try to allow more time than logically necessary for every activity/ event, because I am sure to need much longer recovery time after every task and every change. For instance, if I need to attend a single event, I may have to block out the whole week for the preparation and after-event recovery.

 I have started allowing myself enough rest and recovery time. I now understand my brain's need for stimulation and safety better and I have found ways of providing that. Sometimes some good music that inspires my brain or some chilled lemon juice to sip on gives me the dopamine I need to finish a project.

 I delegate tasks that are draining for me, to people I trust. I have been learning and practicing self advocacy and drawing boundaries especially regarding social aspects. I rely heavily on technologies like Alexa, chatGPT, Siri, to house cleaning robot and Google Assistant for managing tasks and reducing cognitive load

 

3Q) What accommodations would help you thrive? 

Accepting me the way I am, rather than forcing and advising neurotypical solutions on me would be a good place to start. It is very important to understand and accept that I work differently and that is not something I can change. I wish people would honor my needs and try not to use my different needs to blame me.

It would really help if people could be kind and patient and actively listen when I am speaking.

Being straightforward and precise in communication, rather than expecting me to read tonalities and make guesses could also help. People should be made aware that when you are interacting with an autistic person, you will get what you ask for, and not what you implied indirectly. 

Sticking to asynchronous communication methods as much as possible, and giving clear, written instructions whenever possible will help me give my best output.

 Also, I would request to please leave me out of the social hierarchy competition. I would rather keep my peace than participate. But just because I did not participate in the after work party, doesn’t make the work I did any less important or make me any less deserving of its credits.

 

                               Comorbidities

1Q) Please write in detail about what comorbidities have you faced..  

I have Hypermobility, which is a connective tissue disorder which causes the joints to extend beyond the typical range of motion. It causes frequent joint pain, sprains, and injuries. It has also lead to cervical nerve impingement at a very early age. I also have flat feet, where the arches of my feet are completely collapsed. This causes pain and discomfort, when walking or standing even for short periods. These conditions together contribute to overall body pain and affects my mobility, making activities like walking for exercise or standing or sitting for extended periods challenging and makes me prone to injuries. Workout routines that work for most people keep failing to help me. Hence managing healthy body weight and other aspects of health and fitness have been extremely challenging. I have heart rate variability issues that cause me dizziness with change of height.

 I am extremely sensitive to loud noises, bright lights, certain textures, and strong smells, all of which can lead to sensory overload and physical discomfort. Sensory overload often leads to headaches, muscle tension, or even meltdowns when I am overwhelmed by my surroundings. Sensory sensitivities have also cause lack of quality sleep from the time I can remember.

 Alexithymia, or difficulty identifying and describing emotions, has been a prominent challenge in my life. I struggle to understand what I’m feeling or how to express it, which can make managing emotions difficult. I may know that I’m upset, but I can’t always pinpoint why, or I may feel physical symptoms of stress without recognizing the emotional source. This causes strains in both personal and professional interactions, where emotional expression is expected or needed. It also makes it harder to address my mental health needs.

Anxiety and depression have been  long-standing mental health issues that significantly impact my day-to-day functioning. My anxiety is often triggered by social situations, sensory overload, and the unpredictability of life. The constant worry about how I’m perceived in social interactions or how I’ll handle overstimulating environments creates a cycle of stress and anxiety. Depression is often tied to feelings of isolation, burnout, and frustration with managing life’s challenges.

 When I push myself to meet neurotypical standards, it leads to emotional and physical exhaustion. Prolonged periods of masking my autism in social or work settings puts me in a state of burnout, feeling drained and unable to perform even basic tasks.

 

2Q) How do you cope with these challenges? 

I’ve had to adapt my exercise routines to focus on low-impact activities like swimming or using resistance bands, but even these activities require caution. Over time, I’ve incorporated ergonomic tools, like standing desks and supportive chairs, to alleviate some of the discomfort, but the pain can still flare up, especially when I’m stressed. I have been continuously researching to find new ways and treatment protocols for management of these conditions. Physiotherapy and alternative therapies like Alexander technique have helped to some extent. Orthopedic accommodations like red lights, orthopedic pillows, cervical traction pillows etc. help in pain management to some extent. Melatonin oral sprays and physical compression and massages help me get better sleep.

Managing sensitivities involve controlling my environment as much as possible—using noise-canceling headphones, lighting and temperature control, or wearing soft, comfortable clothing. However, it’s not always possible to avoid over stimulating situations, which can make public spaces, workplaces, or even social events challenging. Hence actively trying to limit social interactions is something I cannot avoid.

I rely on routines and structured environments to cope with anxiety, but it remains a pervasive challenge. With Alexithymia, my wife, Hitha, has often helped me understand my emotions by asking guiding questions and helping me reflect on situations.  I’ve learned to recognize the early signs of burnout, such as irritability or extreme fatigue, and take steps to rest and recharge, but it can take me a long time to recover fully.

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

Awareness among doctors about autism and the comorbidities would be a great start. When it comes to health, the medical system itself doesn’t understand the condition or provide support and that is something that needs to change at the earliest.

        

                    Towards a better tomorrow

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

Every autistic child is unique, but there are some general approaches that can help them thrive.

It is easy to lose focus in your quest to help your child and support the child based on what you want for the child, rather than what the child needs for their wellbeing. Repeatedly reassessing the intentions behind the support we are providing can be a good place to start. Always make sure the intention behind our actions is to help the child to cope and be happy and fulfilled in their current and future life.

I believe that inorder to provide autistics the life they deserve, a lot needs to be learnt and modified by society than by the autistic. Instead of trying to mold them to fit neurotypical expectations, what helps would be to focus on understanding and valuing their unique strengths and challenges. Understand that no amount of training will help a fish climb a tree. Instead open avenues where it can swim and grow.

Accept the child exactly as they are and make it clear to your child that you do. We autistics might need more validation to be able to internalize our worth. And the best place to receive it is from family. We also struggle with regulating our emotions all by ourselves. A bit of gentle support and co-regulation can take us a long way ahead. It would definitely help if parents educate themselves regarding neurodivergence, sensory sensitivities and other challenges, try to provide sensory friendly environments to the child, make life as predictable for them as possible etc. Giving them patience while they try to communicate through their broken communication modes is also very important. Talking over them or guessing / assuming what they are trying to say can be very discouraging for them.

 

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

Many therapy modalities that are useful for neurotypicals are practically obsolete for many neurodivergent people. This is because neurodivergent people, especially autistics have a highly different set of aspirations, thought patterns, priorities, perceptions and pain points. Only a therapist who has dedicated a considerable amount of time understanding neurodivergence and neurodivergent people can effectively support us. Scientific literature is very weak in these areas. So for the time being, knowledge has to come from personal life experiences of NDs. Therapists trying to be more observant, keeping an open mind and being inquisitive is very important. And most importantly, choosing to believe a neurodivergent person’s experience is vital. Only from a point of believing and empathizing completely with an autistic’s experience can solutions and support methodologies can be figured out. Providing the most used neurotypical support modalities without understanding the depth of the problem, can be very invalidating and discouraging for the autistic. It is okay to just listen and not provide solutions, as long as you are empathizing with us.

 I also believe that effective support for an autistic involves effective support given to their immediate support system - caregivers, parents, close friends etc. who interact with them on a regular basis. Dealing with the different needs of an autistic could be confusing and even tiring. Only when they are supported, validated and regulated would the autistic be in a supported environment. So supporting an autistic must include holistic support practices for the system in which they are existing.

              Thank you so much dear Rakesh 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 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 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.