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.