Wednesday, November 6, 2024

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.

Saturday, October 19, 2024

Empowering Voices - Meet Kabir Nair

Dear reader, thank you so much for the love and appreciation for the Empowering Voices series of interviews, that feature the voices of Indian Speaking Autistics and give us an in-depth look into their lived experiences. The ninth interview features an young man, Kabir Nair. His bright smiling eyes with a clear dream of his future remind me of the poem by Robert Longley - Dreams of the future.

Some are content with memories
That play and never change
But others look to the future
And try to stretch their range

What things may be possible
And tasks as not yet done
What future days are dreamed of
Underneath the sun

These visions of the future
Await those who would dream
For thought creates reality
Things aren’t just as they seem

The possibilities are endless
The future open wide
Let your imagination wander
Through the dreams you have inside




                                           







                               Welcome to My World


1Q) Please introduce yourselves to our readers.


1A)Hello there! My name is Kabir Harish Nair! I am a college student, pursuing Bachelor of Arts in my first year. I am 18 years old and am diagnosed to have moderate autism. Yes, I am an autistic man. Honoured to be here!


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


2A)We will be here all day if I discuss all of the good stuff haha! In short, there are many interests I have. I am an aspiring writer who is working on his project to release visual novels studying various elements of fiction and gaining skills in order to refine my art. Speaking of art, I am actually getting into art, the drawing one! In order to add the visuals in my novels. Above all though, I aim to be a Psychoanalyst in order to understand myself well, but above all to understand others and heal them as much as I can. My other interests include my passion for heroes like Batman and Superman who inspire me daily and actually got me into the beautiful world of writing and fitness. My aim is to learn martial arts to defend myself, my family and the weak, should the need arise and discover myself.


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


3A)Whenever I feel down, I remember the beautiful smile of my mom and dad, my future Self looking at me with belief in me, my pets looking at me with love but shall it not suffice, the images of my idols in fiction; Batman and Superman lift me up as I remember their ideals of resilience, discipline and compassion as I lift myself up.


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)


4A) There are countless such glimmers which I can't just tell them all but the ones Which spark my day the most are returning home from college to be welcomed by my mom and pets with love, talking to my papa on phone, playing with pets, writing my ideas down and working out pushing my boundaries.



5Q) When did you realise that you are autistic and how it changed once you knew you’re autistic?


5A)In honesty it was always the same for me. Thanks to God for giving me the best parents I could have ever asked for and same for the therapists for making me able to be the man I am today. As my memory serves, I knew that I was an autistic Child from the age of 6-7. So it didn't bring ANY changes in my life.

 


                          Education and Workplace Experiences


1Q) What are your experiences in school/college… What challenges do you face?


1A) Being a fresh college student out there, my experience in college and formerly school have been mostly like any non-autistic human. Though the biggest challenge I have faced is preparation for exams, mainly due to my tendency to procrastinate as I often find it hard to focus on something for consistent periods.


2Q) How do you cope with these challenges?


2A) I try to remind myself of my future dreams and tell myself that if I don't make the necessary time and sacrifices needed, then the dreams themselves will become the sacrifice. Something which I won't be content with.


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


3A) For This specific instance I believe people being more willing to empathise with autistic children/people, educate themselves on the topic of autism and shall it be needed, then be ready to make some arrangements of educational tools alongside encouraging the person.



                            Sensory Challenges


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


1A) Interoception which in simple terms is the ability to be aware of the internal sensations in the body like heart rate, hunger, Emotion sensations, etc. Which ties in well with the sensory world, as I reflect on my journey remembering how I used to avoid rice, pulses also Known as dal in India. A pattern of avoiding white and soft textures, as I used to felt overwhelmed. From just one of the many examples.


Though with time I adapted to these changes and learned to explore food options like rice, pulses, sabudana, Curd and many more food options. All thanks to my parents. Which explains why I am rarely a picky eater now, haha!



2Q) How does it affect your daily life?


2A)Speaking from my experience, a sense of discomfort ran through my body, which always made me feel repulsed, not out of any picky attitude, but simply out of my Senses being overloaded I assume. Though with practice and support from others, I did manage to overcome it, but at the same time there are others for whom the path is much more rigorous. In fact even today I love to have big hugs with my mom. Only Supporting the theory of my sensory world being distinct from most people.



3Q)  What accommodations would help you thrive?


3A) I would encourage people to once again support and lend help in such cases, and for the physical changes, While I am not the most informed on the matter, I believe that slow progress and encouraging the person to practice adaptation to their sensations shall help, though of course it may vary with cases since Autism is an umbrella term.



                           Communication Challenges


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


1A)I believe the only differences I have from the Neurotypicals at this moment is the speed of my speaking. At times I can speak too fast for even myself to comprehend what I say, though once that's in check I am similar to the neurotypicals. Oh and perhaps I tend to be a bit blunt, both given my love for morals and ethics and also my inherent lack of empathy, ironically which can create conflicts in communications.


2Q) How do you cope with this challenge?


2A)I try to slow my words when I talk to others and I try to empathise with others in order to improve my communication with others.


3Q)  What accommodations would help you thrive?


3A) I would encourage people to mainly keep patience and be empathetic to them which will allow them to communicate better.




                                     Relationships


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

What challenges have you faced in your relationships?


1A) I Look for connection, honesty and trust in relationships to sum it up. There are a few challenges I do face, the biggest one I can point to is my rough tone at times combined with the bluntness can actually send people off the wrong message of me being rude. Which has resulted in conflicts and even arguments at times.


2Q) How do you cope with these challenges?


2A) First of all I try to ground myself by taking deep breaths, keeping my emotions in check. After which I try to analyse what went wrong and prepare myself so that it doesn't go wrong ahead again.



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


3A)I would encourage people to try to ask for inputs from them regarding their wishes in the relationships and try to understand and accommodate their needs.



                                     Bullying


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


1A)Yes..this has arguably been one of the biggest challenges I have faced in my youth. There have been quite a few instances but the biggest one which actually changed my life forever was in class 6. A few seniors used to pick on me in school after basketball lessons back in the day. It was in the corner of the schools with stairs..and that heavily did crush me at the time. However it has taught me lessons and strengthened me, thanks to my parents.


2Q) How do you cope with these challenges?


2A)Since then no one has bullied me thankfully but I have my plans to deal with any challenges of such nature. My plans would include first of all keeping my composure And trying to avoid any conflicts. If they TRY to get in a fight then I am booking for it and talking about it to my parents and authorities. Apart from that I plan to train myself physically and hopefully get into martial arts.


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


3A) I would encourage people to take Strict actions against such bullies, teach their children basic Self defence skills should the day come to defend themselves and be ready to hear their plea of help if needed.



                                      Masking


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


A)In truth I never needed to mask myself to look Neurotypical due to my parents telling me and ones around me about me having autism, which only helped me embrace it, so that was a big help.



       

                            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?


1A)Well there are two specific challenges which I have faced. First is the struggle in focusing on one task. My ambitious nature and my mind which does work quite fast to the point I believe I may be overthinking (the blessing in disguise or curse as I like to call it) . I tend to get scatter brained and lose focus from the task often resulting in procrastination. And the second one which is related to it is keeping track of tasks I have to do. Sometimes I am doing chores of home and I forget some of them even if they were told to do rather immediately.



2Q) How do you cope with these challenges?


2A)I try to be composed and do Deep breathing exercises to Keep myself rooted in reality which immediately helps me perform better.


3Q) What accommodations would help you thrive?


3A)I would encourage people to have talks with their children and check on their state of mind and also note if they have any weaknesses doing certain tasks, which would help in dealing with that certain obstacle and overcome it.




                                  Social life


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


1A)I believe it's similar to the challenges regarding relationships. My honesty and my nonchalant self at times are the main challenges which create problems in communication in social life.


2Q) How do you cope with these challenges?


2A) I try to be grateful to God for the loved ones I have, putting me at peace much more and allowing me to be much more empathetic and more energetic. Enabling me to be better in social aspects.


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


3A)I believe another issue which while I never suffered from thankfully, it could be that some autistic children feel insecure about their inclusion in the social groups. So again the good old Empathy and encouragement alongside patience would be the best route to take.



                               Comorbidities


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


1A)The most prominent challenge I have faced is perhaps overthinking. Due to my tendency to over analyse things and think too far, it actually can result in me feeling down and losing the drive to work towards my goals and makes me overall less productive and moody. 


2Q) How do you cope with these challenges?


2A)Honestly, it's simple. I try to be a grateful person for everything I have, be stoic and grounded which helps me this aspect. 


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


3A) The best change one could make apart from taking support of health professionals regarding this field, would be to educate themselves on the difficulties their children face so that they themselves could both help their children if needed and also it allows them to empathize and understand the situation of their children more.



                             Towards a better tomorrow


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


1A) The Parents and family members of the autistic children, the most important step you can take forwards towards creating a nurturing environment for the children is to be open to their neurodiversity and never let them feel insecure and negative about it. You will have to do a lot of hard work haha, be assured but we have to endure for our children. And the power above will see your work and it will all turn out fine. 


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


2A)To therapists, I am not the most educated on this matter but messages of awareness, encouragement and using knowledge of the researches and studies would help a lot. The biggest challenge though is convincing the parents of such children about embracing neurodiversity, which would mean that the most important approach would be to spread Awareness on this matter.


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


3A)At the end, as with most matters in society, this one also revolves around diminishing the fear around this concept of neurodiversity people have and spread awareness, be willing to help such children and even acknowledge the ones who work hard with such children and endure and keep working and hopefully in future we will see a world which accepts such people where such children can raise their chin up, proud of themselves of who they are.



As you embark on your journey of life, our best wishes are with you. May all your dreams come true, dear Kabir!



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.


Saturday, October 5, 2024

Empowering voices - Meet Rajlakshmi Kanjilal

 

Dear reader, we are in the eighth interview of the Empowering Voices, a fortnightly series that gives us an in-depth view of the lived experiences of Indian Speaking Autistics. In this interview, we meet - Dr. Rajlakshmi Kanjilal, an immensely talented neurodivergent self advocate. The poem that comes to mind when I read her responses is : The Forest by Nikita Gill



   One day you will wake up and find you have become a forest. 

You have grown roots and found strength in them that no one thought you had.

You have become stronger and more beautiful, full of life-giving qualities.

You have learned to take all the negativity around you and turn it into life-giving oxygen for easy breathing. 

A host of wild creatures live inside of you and you call them stories.

A variety of different birds nest inside your mind, and you call them memories.

You have become an incredible self-sustaining thing of epic proportions.

And, you should be so proud of yourself, of how far you have come from the seeds of who you used to be.

– Nikita Gill             



                                    



Welcome to My World


1Q) Please introduce yourselves to our readers..


My name is Rajlakshmi Kanjilal. I am 34 years old. I like to describe myself as a lifelong learner. My journey of learning about life and academia has been filled with both challenges and successes. As a dyslexic child with attention differences, learning was challenging from early on. However, over time, with support, I was able to focus on my strengths and leverage them. I am late-in-life identified autistic and adhder, and I identify as, twice exceptional, neurodivergent.


After completing a doctorate in Visual Media and Communication, focusing on Film Studies, Animal Studies, and Humane Education, I joined the Amrita Center for Research in Accessible Technologies & Education (Amrita CREATE) at Amrita Vishwa Vidyapeetham (Amrita University) as a project manager (media and content).


As an interdisciplinary researcher, I write about neurodiversity, popular culture, animals and media. Currently, I am working towards completing a Diploma in Teaching Children with Learning Disabilities from Azim Premji University.


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


Nonhuman animals, particularly dogs and nature, fascinate me. Photographing them brings me a lot of joy. Watching and interacting with dogs helps me relax. I have shared my home with five canine family members, all of them rescued. Their unconditional love, acceptance, and understanding have helped me tide over difficult times.

I love creating abstract art with animal motifs. Abstract art gives me the freedom to draw without worrying about boundaries or coloring within the lines. When overwhelmed, it helps me focus, work through my emotions, and think through things.

Zumba has become a part of my routine over the last few months, something that I love. Fitness is something that I am spending more time on, and it has greatly helped improve my focus, agility, and emotional regulation.


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


If I'm having a bad day, I listen to music and drop in for an extra Zumba class. It uplifts my mood. If that is not possible, I workout at home or go for a walk. Apart from that, I try to take a short nap.


While I am usually neither the kind of person who talks to people over the phone regularly nor one who texts friends daily, when I do reach out to trusted friends via text, it helps put my mind at ease. It reassures me that they have my back and I have a support system in place. Sometimes, when I find it difficult to articulate how I feel, I send them artwork, and we have a conversation about it.


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)


Everywhere I go, I am always on the lookout for dogs. When I meet them, I photograph them, talk to them, and interact with them, if they are comfortable. They are usually comfortable around me, and I am around them. These unexpected meetings are glimmers!

Every day I look forward to meeting people at the fitness center since they are are always upbeat and positive. The group photo we take at the end of each class is something that I really love. The sense of community is something I cherish.


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.


A family member suggested that I might be autistic as a child. I have always known that I am different and feel out of place in many social situations, even now. In my childhood, I was more carefree and confident, but over time and with age, I grew less confident, and there was a constant inner conflict that I experienced about who I was and who I projected I was, suppressing my feelings.

I keenly observed people and mirrored their behavior, learning to mask very well. Oftentimes, I felt that I had to put in a great deal of effort to maintain relationships and friendships just to fit in. It was emotionally exhausting, but it became a way of life. The one time I made a friend who understood me, there was so much judgement around it that it took me twenty years to have a conversation with my parents about how the turn of events impacted me. It forced me to mask more and mold myself into what everyone around me wanted me to be.

When I joined my current workplace, I disclosed that I was neurodivergent. Although I didn't intend to reveal this information, I did. As our team works on disability studies, I gradually began to learn more about neurodiversity and eventually enrolled in a diploma program. This learning journey has been a very challenging one because it felt as though I had sailed through my life without addressing past hurt and reflecting on my lived experience. In early 2024, I finally underwent screening, and there’s been no looking back. The journey of self-acceptance and incorporating self-care routine have helped me. Finally, I can be myself.


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..

As a single child my parents and grandparents focused on me. My great-grandfather, Dr. P. C. Banerjee, was an Olympian; father was an all-India CBSE rank holder; and my grandmother was a sitar artist. My family viewed me as an intelligent child, expecting me to excel academically and in other aspects of life. As a dyslexic child who never met traditional academic expectations in school, I was told I could do better.

Although I appeared well-adjusted on the outside, I felt inadequate and experienced a lot of frustration. As early as UKG, the teachers indicated that I was experiencing some difficulty, and my mother realized that I could not read at all. The teachers did not rush to label me.

After joining an NGO and completing training as a special educator, my mother secured a position in the resource room at my school. Her on-the-job experience with different grade levels helped her create a study plan for me. She ensured that I never fell behind the grade level. While I was able to grasp concepts, reading and written expression were challenging.

I attended tuition classes when I was in high school and met expectations, as an average learner. When I went to boarding school in grades 11 and 12, I really fell behind because the support system I had at home was no longer available. It was a difficult time to experience constant failure.

However, I persevered, and during the parent-teacher meeting, the principal told my parents that I was an exceptional student, except in academics. At school, I received encouragement for the first time for the gifts that my struggles often masked. I was encouraged to dedicate time to art and writing. It helped foster the confidence in my unique talents. This experience inspired me to persevere and never give up.

College was a new experience, and I was determined to work hard. During my college years, I put all the knowledge I had acquired in school into practice. I spent a semester abroad during my undergraduate studies. I excelled and received the university-level gold medal. Since then, there has been no looking back. I earned a postgraduate diploma in journalism and a master's in fine arts in animation and content management (web design). I went on to earn a PhD in visual media and communication.

Right after I submitted my thesis, I received a job offer at my current workplace. I felt that the vision of the research center aligned with my values and purpose: to make a difference in the lives of people and the planet. We received the unique opportunity in 2023 to organize events and policy discussions as part of India’s G20 presidency's Civil 20 Education and Digital Transformation working group. Education for persons with disabilities was a key subtheme along with digital transformation and accessibility.

Being a part of the working group, represented by disability rights activists, NGOs, and civil society organizations, was a great learning opportunity to understand the ground reality of how neurodiversity is viewed and is still on the fringes of the disability rights movement. It gave me a push to delve deeper and work towards the outcomes that we had arrived at as a collective. 


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


Even today, the burden largely lies on neurodivergent people to educate themselves about neurodiversity, their identity, and empower themselves. One of the reasons why I enrolled in the diploma program was to get a greater understanding of neurodiversity. I can have conversations at work about neurodiversity, which is a positive sign towards creating a more inclusive workplace.

I am able to thrive in the diploma program because of workplace support and the classroom climate created by the faculty and university. While I was initially concerned about completing the program, year-long experience with hybrid classes and face-to-face interactions it has greatly helped me experience what it feels like to be a part of an inclusive classroom.


Communication Challenges


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

In very stressful situations, I feel emotionally dysregulated, and it comes in waves. First, repetitive thoughts. Second, these thoughts spiral, accompanied by a sense of guilt. Third, freeze. Fourth, a rare occurrence, a meltdown or shutdown, characterized by silence and occasional tears. Crying helps self-soothe, but it is difficult to control. However, over time, my fitness journey is helping me self-regulate. Setting healthy boundaries and detaching from situations help me cope better.


2Q) How do you cope with this challenge?

When I feel emotionally dysregulated, I find it difficult to articulate my concerns, and I prefer writing. I start with an outline and write down how I feel. I go through two to three drafts, focusing on the event or the trigger. It takes me some time to process things, and I allow myself some space before I press the send button. As the need arises, I try to be as detailed as possible, giving specific examples and articulating concerns, along with the course of action, if needed.

Setting up a system to address challenges is essential to advocating for myself. Since I tend to dissociate and forget details related to negative experiences, documentation is very important so that I can defend myself if the need arises. There have been instances where I was unable to defend myself since I had not documented the incidents and it has worked against me.

At the same time, experiencing failure at varying degrees and rejection in different contexts, I have always tried to take it my stride and move forward. I must admit that I am my own harshest critic! As a late-identified autistic and adher, it has brought a sense of grounding, in my 30s, that I have been searching for all my life.


3Q) What accommodations would help you thrive?

Communication is important, but at times it is difficult. Written communication, documented in the form of an email or a text message, is helpful in serving as a point of reference. I request the sharing of the meeting agenda in advance, as it aids in my preparation and active participation in meetings.


Relationships


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

What challenges have you faced in your relationships?


I am selective about the company I keep because I usually have a packed schedule, be towards achieving professional or personal goals. I invest time in building trust and mutual respect. Earlier in my life, I was eager to connect with people, but I often ended up pleasing them and causing me a lot of pain. I am selective about who I spend time with. Looking at the cross section of friends across age groups, I stick to the ones who I can reach out to, and pick up where we left off. Reciprocity is something that I really appreciate and value.

I may not always express my true feelings. Even when the actions, words, or patterns of people who I consider important to me hurt or upset me, I tend to not express it, which is unhealthy and impacts my physical and mental health.

I try to remain optimistic in every situation and be the bigger person. The double empathy problem has been a challenge for me because I don't give up on people easily. It can be very exhausting. I find it difficult dealing with uncertainty that leads to anxiety and overthinking. 

I may appear as calm and quiet, but the intensity of the emotions I feel, at times, is overwhelming and very destabilizing. Even though I practice mindfulness and reflect on the situation at hand, it can be difficult to deal with. 


2Q) How do you cope with these challenges?

Slowly, I am learning how to set healthy boundaries. Recent years have seen me say ‘no’ more than ever, which has helped me maintain my peace. I take time to decompress and engage in my special interests, which bring me joy. It took me a while to understand that the behavior, action, or inaction, of others is not always about me or my fault.

I prefer direct communication, as I find uncertainty to be unsettling. If I do not feel a connection, I do not force myself to communicate with others, particularly when it comes to small talk. It also takes time for me to warm up to people. When I do engage, I tend to talk less and listen more. I avoid entertaining meaningless communication. However, when I am in my element, I can be talkative and talk about my special interests at length.


Bullying


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

In general, India's higher education institutions are based on rigid structures, hierarchies, and resistant to change. My experience as a student was largely unproblematic up until the master's level. However, as soon as I stepped into research space, the scenario changed quickly.

The lack of professionalism, transparency, and openness to new ideas make it very difficult to navigate a stifling system. People often perceive my frequent questioning as a challenge to authority. Throughout my four years as a research scholar, I have endured numerous comments, passive-aggressive actions, and pettiness, all without disclosing neurodivergence. It was nothing less than traumatic, impacting my mental health and self-esteem.

During my thesis defense, the thesis examiner was online, and due to the camera position, they were unable to see me, the candidate, throughout the entire defense. This was no honest mistake, since I had attended several thesis defenses before and after. I had mentally prepared for the worst-case scenario, resolving to maintain my composure and overcome any obstacles. I made it a point to attend the convocation, and it was the last time I stepped onto that campus.


2Q) How do you cope with these challenges?

I am grateful for my thesis advisor’s constant support. As an experienced professor, she was able to help me navigate these difficulties, dealing with unhealthy power dynamics and ways to address them in non-confrontational ways. Having an empathetic guide who was both knowledgeable and experienced during doctoral studies was a blessing. I was guided to adopt a systematic approach. It included setting in place a writing routine and breaking down different milestones and goal setting, which was one of the reasons I excelled.

Educators have the power to positively or negatively impact lives; this role carries significant responsibility. While we talk a lot about systemic change, it is important to take decisive action too. Writing and documenting instances of hostilities I faced helped me greatly. It required a significant amount of discernment and careful thought.

I spent years in silence letting the transgressions go by thinking it would put my future in jeopardy, but I decided to stand up for myself. I wrote a formal letter outlining the situation, the issues that needed attention, and the necessary actions. My parents and close friends were equally distressed and concerned about the situation but supported my decision, lending emotional support and creating psychological safety.


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

Having spent time and effort over the years, building on the two things I struggled with reading and writing, producing a doctoral thesis was a great achievement. The reason I masked for so many years was due to the stigma associated with neurodivergence. However, this needs to change.

Educational institutions need to sensitize educators, administrators, and staff about neurodivergence. The damage that the apathetic attitude is causing to students is unimaginable and unwarranted. Neurodivergent people should be given opportunities to lead at the forefront. Now more than ever, children and young adults need role models to look up to as it helps build confidence in themselves. It is equally important that students and parents are sensitized too.


Masking


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

As a child and teenager, I often felt like no one could understand me. I tried making friends, but when we drifted apart, I kept it to myself. Even my handwriting would change depending on the company I would keep. By mirroring, I tried to fit in with friends and peer groups. For instance, I tried learning how to play the guitar because a friend was good at it, hoping that we could spend more time together.

While I loved art classes, I felt that my skill set was inadequate. Additionally, seeing my childhood friends sit with other friends during art class, as our friendship over time felt more one-sided with me putting in more effort, I never shared these concerns with anyone—the sense of feeling alone, left out, and rejected. I felt that there was something wrong with me, and I had to try very hard at everything.


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

As a young adult, I appeared to be fine—quiet perhaps—and people assumed I was going through a phase. The shame, rejection, and intense emotions I felt and often bottled up made me disinterested in life.

For example, I told my physics tutor that I spent all my time outdoors engaging in sports while at boarding school. I knew it would rile him up, and he even hit me with a stick ahead of my 12th board exams. He told me that with the attitude I had, I would never achieve anything in my life, speaking from his experience of being an IITian.

The truth was that I tried to study hard and diligently and spent most of my time in front of my books. But I actively masked as though I was disinterested when I was actually struggling, falling behind, and failing, feeling defeated.

Masking was the sole method I knew for to gain approval and acceptance from others. The struggles were kept private. I tried to remain invisible, never drawing attention to myself blending into the background.


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

I still view myself as a quiet person. I unmask only when I am with people with whom I am comfortable and feel safe with. At this point in my life, I only show vulnerability when the situation demands it and there is a certain level of trust in place.

However, when I share my lived experiences, I reveal my true self. I was a part of a panel discussion for the first time as part of the diploma program, in a safe space, where I was able to express how I truly felt about my journey with a non-judgemental audience. It was an empowering experience.


Comorbidities


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


I have been diabetic since I was 16 years old, and I have PCOS. I have always been a light sleeper and experience sleep disturbances; regular exercise and limiting sugar intake have been helpful. Now, I understand the correlation between the nervous system, feeling dysregulated, and its impact on my physical and mental health. 

Additionally, I have a sensitive digestive system with IBS (irritable bowel syndrome), and I am working to improve my food habits. I have struggled with eating disorders and body image issues for the longest time. Sometimes, I would have only one meal a day and have two cups of coffee.

A general physician once asked me, at the age of 26, why I visited nearly all the specialists at the hospital where I worked at in a short span of six months. I could not respond to him, but looking back the stress of interacting with people, power dynamics, and politics dysregulated me. Therapy was helpful, and it was the final push for me to undertake doctoral studies.


2Q) How do you cope with these challenges?

Each time I would meet an endocrinologist, the first thing that they would ask me to exercise. This time, I build endurance and set in place a daily exercise routine before visiting the doctor. I decided to visit a new doctor and disclose my condition. It was a positive experience, and I have kept up with follow-ups. Also, finding a therapist online has been extremely helpful.


Towards a better tomorrow


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

Self-expression can be difficult at times. Children can sense when their parents or family members are under stress, either directly or indirectly. It places a heavy burden on the child, crushes their spirit, and leads to a great deal of sadness. They comprehend the situation more deeply than they may be able to express; it does not mean the absence of it.

Family members and community members may pass comments and judgment. In situations, the child feels defenceless, vulnerable to abuse, and often unable to advocate for themselves, feeling helpless, and it is important to believe what the child says. Give the child some space and make their decisions, even unconventional ones, since the weight of the parental expectations and being unable to meet them can be painful and detrimental to one’s mental health and sense of self.


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

For a neurodivergent person, opening up about past traumas, or coping mechanisms, can be quite daunting. I have greatly benefited from seeking assistance from therapists who incorporate neurodiversity-affirming practices into their approach. However, I believe there is a need for greater sensitivity in both the medical fraternity and medical education.


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

I have advocated for nonhumans and dogs throughout my life because I understand what it is like to feel excluded, undervalued, and marginalized. The lessons I learned have aided and pushed me to advocate for myself. Therefore, while the individual journey is important, it is important to build a movement that calls for greater acceptance of all neurotypes and celebrate diversity.

While we have some policies in place, implementing them requires a cultural shift. An area that I am passionate about is the representation of neurodiversity in popular culture and discourse around neurodiversity in the Indian context. Unless neurodivergent people take the lead by writing about, researching, and advocating for better and more fair representation of the collective, our dream of creating a more inclusive and neurodiversity-friendly society will remain a dream.


More

LinkedIn: https://www.linkedin.com/in/rajlakshmikanjilal/ 

Twitter: https://x.com/R_Kanjilal 

Google Scholar: https://scholar.google.com/citations?user=O0jQkDwAAAAJ&hl=en 




I hope reading this interview has been as insightful and uplifting  for you as it was for me. God bless you dear Rajlakshmi, 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.

Friday, September 20, 2024

Empowering Voices - Meet Aditya Gaur

                                

         Dear reader, in our quest to know the in depth lived experiences of the Indian speaking autistics through the Empowering Voices series of interviews, today we meet Aditya Gaur. During our conversation, I met an enthusiastic man who yearns for friendship. This is my wish for him. What better way to convey it, than through this beautiful poem - A Song By Lucrieta Maria Davidson


Life is but a troubled ocean,
Hope a meteor, love a flower
Which blossoms in the morning beam,
And whithers with the evening hour.
Ambition is a dizzy height,
And glory, but a lightning gleam;
Fame is a bubble, dazzling bright,
Which fairest shines in fortune’s beam.
When clouds and darkness veil the skies,
And sorrow’s blast blows loud and chill,
Friendship shall like a rainbow rise,
And softly whisper—peace, be still.






                    Welcome to My World

1Q) Please introduce yourselves to our readers.

Aditya Gaur is my name. I’ m from Bangalore I m getting activities on laptop for online program Akshadhaa

2Q) Please share your hobbies and interests/passions with us. Also please share about how they help you relax

I watch song on television on my youtube, listening songs also on my youtube most of the time, playing ludo game at my home and I watch movies also and playing cricket.
I feel comfortable and relaxed while listening music on tv playing ludo game and seeing movies. These things make me more relaxed and much comfortable and I cool myself and no tension then with me.

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

When I start relaxing closing my both eyes in my bedroom after I m tired when and I start thinking about sorting out my all personal problems whatever my mother had said wrong and nani said wrong then I start deciding to give them reply they need to be answerable for this.
Whoever does I decide such things.

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

When I had gone to Ooty earlier for vacation I had performed in rain dance there and it made me happy proud and then went for water ride also that made me too proud. 
I went to water slides this makes me enjoy and have fun too. When I journey in train sometimes for any city, any trip it makes me much enjoy have full fun and keep my mind calm and when I go in flight for whichever place, city I enjoy flying also in air.

5Q) When did you realise that you are autistic? 

I realised all that when I was sixteen years old. I felt strange when I didn’t get to know about this before I got to know I’ m autistic. I felt that I’ m seriously autistic after my mom and granny got feedback about me that I'm autistic. All people also somehow got to know that and I felt really shocked and couldn’t bear it.


                 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 experience in school was I was accepted I was pleasant also.
In SAP LABS I had worked as software tester earlier. In SAP my experience was unpleasant and couldn’t bear it. I was held by my hand by one of the staffs and taken out to the gate who instructed security guard not let me in office and one more reason, Michelle's instruction to me Aditya come here. She called me near her desk where her computer was hung in front of her I had to then go to Michelle as she had to assign me some work so I asked Michelle - what work do have with me tell me you called me Michelle and then suddenly her behaviour became rudely and she instructed Anil (sap trainer), for no reason, Anil pls ask him to go to his desk. This was so badly told by Michelle simply which I don’t like .

2Q) How do you cope with this challenge?

I thought of giving feedback to Avaneesh Dubey about Michelle's rude behaviour.

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

I expect these people, whoever around me, to be understanding, polite and sensitive to my issues if I ask politely.


            Sensory Challenges

1Q) Please share your sensory world with us. 

When I get good aroma I get drawn towards the kitchen. When I’ m hungry I go to kitchen to look for food. When I feel urgency to attend to nature's call I visit the toilet. The videos of moving trains and vehicles fascinates me.

2Q) How does it affect your daily life?

I do not have sensory issues so my daily life does not get affected.


           Communication Challenges

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

I am very loud when I talk and repeat my words and sentences too much. This irritated others and they avoid me. This gives me more stress and I go behind the person talking more loudly and repeating myself till I am convinced that the other person has agreed with me.

2Q) How do you cope with this challenge?

By talking to myself and convincing myself that I am right and the other person is wicked and insulting.

3Q) What accommodations would help you thrive?

Accepting what I am trying to say and politely telling me if I am wrong. Give me reasons to convince me if I am wrong.


                  Relationships

1Q) What do you look for in your relationships with  friends/family/colleagues/partners What challenges have you faced in your relationships?

 I have always been objected by everyone unnecessarily. When I ask politely people respond rudely saying, not now let’s talk later. You repeat the same matter over and over again, it is so annoying. I want people to understand me, talk to me like everyone else, allow me to join conversation .

2Q) How do you cope with these challenges?

 I go to my room and do self talking, abusing people and also shout and scream.

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

 If people can listen to me that would be helpful.


               Bullying

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

Yes I have faced bullying in ARC, my school, not college. In my workplace also I have faced bullying. In my Pragati center I have faced bullying by some of staffs unnecessarily and one student who also has autism, he is also a grown up person like me, by him I faced bullying.
Some people have done to me that earlier, I don’t appreciate such irrelevant behaviours anywhere at all, simply not fair.

2Q) How do you cope with these challenges?

 I get abusive and shout at them.



           Masking

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

Yes when I go to public places I am reminded by my mother to behave.

2Q) What challenges have you faced due to masking?

 It causes lot of stress and tension.

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

 When someone irritates me I don’t care about being in public place I just give back properly.


           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 have participated in nature camps and trekking, without my mother and I enjoyed very much. There were no issues with adjustment, time management, packing my own stuff, overnight travel all by myself it was all fun.

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

 Need my space and want people to accept what I want to do and how I want to do. No corrections.

               Social life

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

I tend to repeat myself that irritates people and I talk loudly which no-one likes.

2Q) How do you cope with these challenges?

 I apologise and try to control my repetitions and loud talking .


              Comorbidities

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

 I have anxiety disorder .

2Q) How do you cope with these challenges?

 By repeatedly seeking assurance from close person.


          Towards a better tomorrow

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

 By allowing us to be ourselves. Accepting with out correcting.




  This interview is a testimony of the power of perseverance! Thank you for sharing your journey with us. God bless you dear Aditya, may all your dreams come true!


If you are an adult speaking autistic from India and would like to share your journey and challenges and insights with our readers, please get in touch - parentingautismindia@gmail.com

Let's work together towards building a more neurodiverse friendly society.





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.