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.

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.

Empowering Voices - Meet Srikar CV

 

Hi friends, we are back with the sixth interview in the Empowering Voices series that has received a lot of love and appreciation. Today we meet Srikar CV. This young man is an avid reader. He shares his journey and lived experience with us. The poem that comes to mind when I think of Srikar is - Canvas of dreams by A Ikram.

      Canvas Of Dreams

 Took me years to fully grasp

I was born in a blank space

With each step, every stride, brushstrokes graced,

A masterpiece formed, my journey embraced.

The image is unclear

But the message was received

Since birth, I'm a canvas whisperer, 

Documenting lives full of dreams, so serenely achieved.

In the blending colors of joy and sorrow, 

I find my purpose for tomorrow,

With every stroke I paint my desires, 

Embracing life, stoking inner fires.

      

                 

            Welcome to My World

 

        1Q) Please introduce yourselves to our readers.

Hello. I am Srikar CV. I am just over 17.5 years old. I live at Farm Hill Learning near Shoolagiri, Tamil Nadu. I live with my parents, sisters and six dogs, along with a few cats. 

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

I enjoy reading the most. I have a great interest in the fantasy genre, although I have recently embarked upon the path of history. I used to read encyclopedias for recreation. Reading in general helps me to disconnect from the world around me. This is critical when I need a break from responsibilities, people etc. 

My other interests include doing my homework, which helps me feel good about completing a milestone in my education. This has helped me cultivate a positive attitude towards work, particularly as I am now studying for +1. 

However, perhaps my favourite interest is Dungeons and Dragons. This is a fantasy roleplaying game, where the Dungeon Master(narrator) and a group of players get together and weave a thrilling fantasy story, based on the players’ actions in an imaginary world. This game has helped me build my imagination to a great extent, and provides me with a unique thrill to be found nowhere else. 

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

When I’m having a bad day, I talk to my mother about it. With her, I discuss the best way to calm down and see that the rest of the day goes smoothly. Sometimes our discussions get heated, but overall we manage to find an equitable solution. 

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)  

Glimmers in my life are whenever I do a piece of homework particularly well, or when there is an unexpected delicacy for lunch or dinner, or for dessert(eg. Milkshake, noodles, pizza). Also when I roast my friends or play a game with someone. My mother petting me affectionately is another glimmer. 

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

My parents told me I was autistic when I was 8.

 

     Education and Workplace Experiences

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

My experiences in school have mostly been happy days spent talking to my friends and engaging in some activities with them. Passing my 10th grade exams left me feeling extremely happy. Granted, growing up has presented its challenges, but I have pulled through reasonably well. I have thankfully faced no challenge in my classes apart from delivering my homework, which I’ve always managed. 

2Q) How do you cope with these challenges?  

I additionally work part-time as a music teacher. The main challenge I face here is that of people learning slowly and tending to repeat their mistakes. 

In the case of my homework, I simply allot time to complete whatever homework I have left, so that I can enjoy the rest of my time. In the past two months, however, I am happy to say that I have learned how to let go and have fun as well. 

In the music classes that I teach, however, I frequently need help from others in managing my temper. Heated arguments have happened in this field in the past, which I fervently wish to avoid repeating. 

No one else need make any accommodations in this field. It is I who need to improve my emotional regulation.

 

               Sensory Challenges

 1Q) Please share your sensory world with us

I have very sharp eyesight, even though I spend much time on screens. My sense of smell is just slightly below average. I frequently mishear what people are saying, however; I additionally tend to miss items that are in front of me, especially if they are small or hidden in an unlikely location. 

2Q) How does it affect your daily life? 

I often get teased for mishearing people, but this is something I can live with. I am striving to improve my listening skills to avoid mishearing people. As for missing items, that tends to increase the negative impact of me misplacing my items such as notebooks, pens etc. 

 No one else has to change. I have to change myself to improve my own lot in life with regards to this field.

 

             Communication Challenges

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

My communication style is not all that different from neurotypicals, save perhaps for an extra touch of eloquence. The result is that people are not at first convinced that I am indeed an autistic person. After years of training since my diagnosis till I was 8, I have adopted speech as my natural mode of communication with no difficulty. Stress tends to make me both illogical and incoherent, and it takes a while for me to reassert self-control.

2Q) How do you cope with this challenge? 

It takes others a while to get through my incoherence and help me calm down. Once it happens, however, I am ready to engage logically. I am taking steps to make myself more logically receptive, particularly to feedback from others. 

                 Relationships

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

In my friends, I look for someone who accepts me as I am, and who I can roast and get roasted by. This is something I currently enjoy to a great extent, and which I am grateful for. I also look for someone who shares my interests, particularly in Dungeons and Dragons (also called D&D for short). In my relationships, I have faced the challenges of me favouring others by mistake, separation and arguments. 

2Q) How do you cope with these challenges? 

In the case of separation, I have turned to online engagement where feasible. Whenever I have an argument with someone, I try my best to resolve it when feasible with both me and the other person. I used to favour a girl in my class over my best friend, but with the help of dialogue, I resolved never to do so again.  

These are my problems, so I must change to solve them.

 

                    Bullying 

I have thankfully never faced bullying ever in my school, hence the lack of answers to this set of questions. I hope never to face bullying in my life.

 

                   Masking 

I am extremely thankful to providence that I have never, ever had to mask myself to look like a neurotypical. I sincerely hope never to have to do so. This is the reason for the lack of answers to this set of questions, since they do not apply 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 have faced significant challenges in self-monitoring, adaptable thinking and working memory, and some challenges in planning.

2Q) How do you cope with these challenges? 

When I can’t plan effectively on my own, I arrange a discussion with my parents in order to come up with a functioning plan. I do the same for all my other challenges regarding executive functioning.  

                 Social Life

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

I have faced the challenges of making friends, rejection, frequent disputes and difficulty in adaptation. 

2Q) How do you cope with these challenges? 

Last month, I learned how to let go of people, which helped greatly with my rejection anxiety. I have found a solid group of friends now, so I no longer have friendship insecurity. I am taking help from people around me with regards to adaptation and avoiding disputes.

  

                 Comorbidities

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

I have faced frequent anxiety in my teenage years, which has often led to heated arguments, tantrums and high-level aggression. I have been taking a medication known as Fludac since February 2024, which has reduced my stress levels by a marked degree. 

2Q) How do you cope with these challenges? 

Apart from Fludac, I am taking active steps to make myself more mature as a person.

 

            Towards a better tomorrow

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

I suggest that parents actually take the trouble to start actively listening to autistic people, particularly their autistic children if they have any. This is an important step towards creating a nurturing environment at home. Further, parents need to actively engage in dialogues with their children in such a way that parents and children both get to understand each other's feelings, each other as people etc. 

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

Therapists must first set aside all expectations of great progress or giant milestones when working with an autistic person. Only then can any meaningful progress be made. Next comes a positive attitude towards the nature of the work, which helps the therapist and autistic person to discover each other. From this base of human, thoughtful interaction can come profound discoveries on part of the therapist and great improvements on part of the autistic person. 

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

Every person can and must educate themselves on what neurodiversity means and its various manifestations, even if they do not already know or live near an autistic person. After this, they must reach out to others who are either autistic or work with autistics, in order to form bonds with those people. Through this, understanding will be gained on the challenges that come with neurodiversity and how to resolve those challenges. If this approach is tried everywhere, society can gain insights that will allow people to be more accepting of the neurodiverse population.

I interviewed Srikar a few years back and getting to know the fine young man again is a golden opportunity for me. I hope you it was wonderful experience for you too.  God bless you dear Srikar, 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.

Empowering Voices - Meet Suhasini Sundaresan

  Dear reader, thank you for all the love and appreciation for the Empowering Voices series, an in depth look into the lives of Indian speaking autistics. Today, we meet Suhasini Sundaresan, a counselor. She shares her lived experience and insights with us. Getting to know Suha over the past few weeks, the best way to summarize her personality is through a poem - Who Am I by Ming Di Liu

 

Who am I, you ask?

I am made from

all the people I’ve encountered

and all the things I have

experienced.

Inside, I hold the laughter of my friends,

the arguments with my parents,

the chattering of young children,

and the warmth from kind strangers.

Inside, there are stitchings from cracked hearts,

bitter words from heated arguments,

music that gets me through

and emotions I cannot convey.

I am made from

all these people and moments.

That is who I am.

~ Ming D. Liu

                    

                                      

                                                     

                       Welcome To My World

1Q) Please introduce yourselves to our readers.

  Hi everyone. I am Suhasini. You can call me Suha (‘Su’ as in super and ‘ha’ as the ha in happy) cuz it’s short and adds a personal touch. I have been a resident of Mumbai city since my childhood. I am a psychologist and psychosocial counsellor.

I am a late diagnosed autistic adult. I received my diagnosis in the month of August, year 2022.

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

 I don’t have any particular hobby hobby per say. I like listening to music, reading books, and watching movies, especially horror and romance.

I like to watch web series. Something that is different in this is that, I make notes of each character of that series.

I love discovering new artists and digging more about their music. I like to learn new languages – and probably have conversations with people who speak the same. 

I am fascinated by tattoos. And I turned that fascination to reality! I have 14 tattoos in total where each tattoo is a symbol of things that I love or something that I believe in. However, there are no names ;)

My passion includes researching new information which can range between anthropology, genres of music, ancient civilization to cosmos and space, some outlandish facts or to research more on microorganisms found in the forests. Lately I am enamoured by frogs and mushrooms.

My hobbies and passion help me feel alive and accompany me wherever I go. They are lodged in my brain by creating a nook for itself.

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)

 Oh! Where do I begin? There are innumerable glimmers – when I witness magic, spotting a butterfly, listening to my favourite song on repeat or when I listen to a song after a gap, when I re-discover 90s hindi pop or any 90’s rock or pop, attending a rock concert, when I watch a romantic movie, happy endings to a movie, when I receive a message from my favourite people, watching cats, petting a cat, watching trees, tiny plants growing between pavement cracks, flowers, the sky, clouds, staring at the sky, staring at the night sky, the residue of water seen on mirrors, pleasant unusualness, feeling the wind, watching the waves, when I get a rhyming poem in my head, when I write a good poem, eating delicious food, drinking filter coffee or kadak chai, eating chocolate cake, having hot chocolate, talking to my grandfather, when I witness people getting their due credit, when people get me. When I get a new tattoo, when the universe grants alignment in my realm and I experience surreal peace and a sense of calm.

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.

 In my lifetime, till I received my diagnosis, I only existed and fulfilled the duties and the to-do lists made by society. In my core I have always felt different and my thoughts have always been slightly left of centre. 

I have had this persistent ‘I don’t belong here’ kind of feeling. My autism diagnosis gave me a new identity and an impending answer to many questions.

I received my diagnosis 2 years back. It was a relief and at the same time my mind was swarming with questions. The first being ‘what next’?

I would definitely vouch for the post-diagnosis-me life more than the before diagnosis. Simply because I have figured myself out (if not fully) more. I have an answer for my idiosyncrasies and weirdness which many couldn’t understand.

I never saw autism from a medical/clinical lens or as a disorder. Neither did I feel ashamed nor did I view it as a problem. Because autism is none of them!! It is a neurodevelopmental condition where our brains are wired differently. I felt rejuvenated and it gave me a new lease of life. Everything was the same but something was different.

Life BEFORE my diagnosis always had a question mark looming over my head. I was swarming with many 'why' questions and felt feelings a tad deeper and I wasn’t sure whether what and how felt everything around and within me, was okay.

Prior to diagnosis I was unable to sustain friendships, I never experienced a romantic relationship and workplace was a nightmare because it was designed for neurotypicals. Although I got acclimated to those NT environments, it was deeply exhausting at the end of the day.

Post diagnosis, things got clearer. I had a reason for all my so-called challenges, not that they vanished completely. Although my ability to sustain friendships or to find a boyfriend remains abysmal, it hasn’t deterred me from living a truer life. I believe my chutzpah is more seen.

I feel more seen.

            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 

 School was a nightmare. It is best if forgotten. I was neither able to ‘fit’ in a group, nor be part of any groups. I was invisible and it was a struggle to be heard and seen.

2Q) How do you cope with these challenges?

 I often cried or maintained a muted silence. I listened to music, shared with trusted people around me or drew.

Later in life when I entered college, maintaining a diary to vent my thoughts helped me immensely.

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

 My suggestion would be for the authorities and students in educational institutions to be more open to learning about disabilities and to sensitise the students and staff.

                Sensory Challenges

1Q) Please share your sensory world with us. 

 I remember sinking my hand inside a sack of rice to feel its texture against my skin. I love cold things and have a high threshold to bear anything that is cold.

My auditory world: It's quite peculiar but I feel an indescribable rush when I am listening to a particular music that is like the hook/beat of a song. I am partly a melancholic person by nature and delve deep into the pathos of anything that evokes memories or feelings that can be as deep as a black hole.

I am okay with loudness but cannot tolerate the exploding music like the ones played during Ganpati visarjan. Crackers are a bane and I feel traumatised to even think of Diwali.

I get mesmerised by touch. For me touch is a communication of unsaid feelings. Of course it should be soft and comfortable. An unpleasant touch leaves a scar that can not be easily erased. I remember an incident when I was quite young and travelling by a Mumbai local, it was rush hour at Dadar station and whilst getting off the train at Dadar, I felt my chest getting squeezed extremely hard by a stranger. I was confused and trying to understand what had transpired. I felt extreme disgust though. That particular unpleasant touch and incident is something that is stuck in my psyche like a glue.

Too much and too many bright lights make me wide eyed and a tad crazy because of the sensory overload. I recently had this experience of an overload of lights that I remember quite vividly. I was passing a busy market place in the autorickshaw when I passed a lane that was decorated with an array of multicoloured bright flickering lights on both sides of the road. I was too stunned and was gaping at them lights because I was too bewildered to do or say anything.

2Q) How does it affect your daily life?

For loud noises, I shut down momentarily, my quiet face turns to a scorn and I get extremely irritated. Sometimes I end up speechless.

Alternatively, I close my eyes and ears tightly as possible as the loud noise makes me extremely nervous. pain is excruciating after removing them fingers.

I project that irritation to my immediate people around me especially my mother or sister if they are trying to converse. I also realised that they are easy people for me to show my actual feelings and emotions.

Now that I have noise-cancelling earphones, the impact has reduced drastically. However, the after effect of loud noise leaves a profound impact in its wake.

For bright lights, I close my eyes and cover my eyes with the inner palms of hands to ensure the intensity of light is lessened.

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

A - I have realised that it is futile to request the general public to lower the sounds and decibel levels because they don’t give a damn if other people are inconvenienced for their revelry.

Other people include not just autistics but also senior citizens and animals.

I shield my eyes when there’s too much light. I have noise cancelling earphones to help me navigate and survive Diwali and Ganpati Visarjan.

              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.

Communication has been a boon and a bane in my lived experience. Since childhood, I was known to be a quiet person. Sometimes I go mute when I get scared or nervous.

During school, I faced the usual nervousness of speaking to teachers, stage fright and talking in groups.

When I was in college, I communicated better and connected with more people. I also noticed that I used to talk about specific topics for hours. I would go to great lengths to research about them and talk more about it. When it comes to the differences in communication styles from an NT, I think it's the repetition of information, the repetition of words (echolalia) and my facial expressions. I have noticed that people who are listening to me talk tend to smile. And I have no idea why!

I am a visual person. I think visually and prefer pictures to words. If there are both then better!

Concrete concepts help me understand things better. I believe that what we think is what we speak and ultimately do. My thinking is mostly linear and black and white. As a psychologist and counsellor I read different theories of schools of psychology, reading up about mental health made me think slightly (not entirely) non-linear and added a bit of colour to my black and white thought process.

When it comes to communicating with many people, I struggle to make myself heard. I fear that the opposite person will not listen to me and will misinterpret my point. Therefore, I take time to gather my thoughts. Despite taking precautions, there have been instances of information getting distorted. My expressions are quite evident when I am talking, when I'm quiet, pensive or have a resting face, there are minimal expressions. There's a slight change in my facial expression when I hear sad or disappointing  news and that can be apparent on my face sometimes but then I get okay the next second. Isn't that a human characteristic? I was once given feedback that because of this immediate change in my facial expression, assuming that I am angry, they tend to withhold information and act getting scared to talk to me. That hurt me because that also shows that NTs are quick to generalise about a person whom they hardly know or would rather assume than clarify with me.

When I talk about something intense, my eyes close or get wide when I have to make an important point and my hand keeps waving all over to emphasise the point.

Another observation struck me is when NTs say complex information and when I struggle to comprehend, I request them to repeat it. Now, it's not what they say but how they say it. What I expect in my head is a simple explanation like explaining to a five year old. But what the NTs end up doing is talking to me like I am a 5 year old! The content needs to be simplified and not the tone and voice of the person that gets reduced to a baby babbling to me. Ufff that is so frustrating! 

Thankfully, there are a few who simplify the content without changing their tone of voice.

When I know that the other person is comfortable with my weirdness and my presence, then my flow of thoughts is freer and there’s no hesitation to share my ‘mann ki baat’.

Social media, especially Instagram, proved a great medium to voice my thoughts in the form of poems or to simply share my feelings. I am totally honest in my sharings. Ofcourse I use my discretion on how much needs to be shared.

My counsellor helped in maintaining a balance of thoughts by weighing the pros and cons and by providing a space of non-judgemental listening.

2Q) How do you cope with this challenge?

 I cry, feel deep sadness and note my thoughts on the Google Keep notes app.

I found the death metal genre of rock music extremely comfortable. I prefer typing to writing which I have found quite helpful lately. Even voice notes help me to vent my immediate thoughts and feelings. Sometimes, it's difficult to comprehend my thoughts when I verbalise them because it would have sounded fine in my mind. There are times when I would prefer verbal communication to written. It's a mixture of both.

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

It would be great if people with whom I interact would inculcate the virtue of patience, inclusion and genuineness for a change in their mindset. It would also help if they show the same virtues in the form of behaviour. So that congruence is maintained between thoughts, words and behaviour.

                 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 been an utter failure when it comes to personal relationships and friendships.

With friends, it is acceptance and understanding, inclusion, support and genuineness. I am a friend to all and a friend to none. I care about them but it’s never reciprocated. I used to feel bad about that earlier and tried hard for others to like me. Over time, I have started seeing them for who they are and not what I want them to be.

My friendships have never sustained. I was unable to make friends in school, I made friends in college but the connections disappeared over time. I had a childhood friend whose friendship I believed would remain but it disappeared like the others. I had an office colleague who became very good friends. In my head she was a 'soul sister' as we shared so much of our happiness and sadness, had our exclusive outings to  We went on our girls' night out, went on trips to different places. I even went to Hyderabad to meet her but overtime it never lasted. I wonder what goes wrong in these friendships. Is it me, is it them or are friendships never meant for me. I have never experienced a genuine friendship where there is fun, support and acceptance. However, it is beautiful when I find the right people at the right time. It could be in times of dire need, for help or just for company. Some are complete strangers who help and disappear while some remain who later become a part of my realm. My friend circle may have diminished in numbers but whoever is there in my friendship realm are precious gems.

In personal relationships, my inability to form romantic liaison with any guy remains an enigma for me as I honestly don't know what guys look out for. I have reasons like maybe they find me plain Jane and uninteresting or I am too talkative or sometimes not. I observed that guys nowadays date for casual reasons and for fulfilling their superficial and fleeting wants of a relationship. So, when they meet me and find out that I am looking for stability and for something more, it puts them off!

I have always dreamt of a love match. Experience dating which then eventually will turn into romance, to celebrate valentine’s day with my guy, to share our lives, hopes and dreams, supporting each other through thick and thin, accepting and growing together whilst living our lives. The romantic relationships that I have been in were unrequited except for one where it was virtual and that too with an American. But it did not materialise.

There was a phase when I used to read the daily horoscope and approached tarot card readers, aura healers to predict my fate in love. I wasted my hard-earned money because in the end it was all hogwash and lies.

I tried the popular dating apps – Tinder, Bumble and Hinge. Unfortunately, these apps weren't designed for someone like me. Finding a love match is challenging especially if one is not pretty enough or of the perfect size and height. Also, the majority of guys weren't looking for serious connections as I had mentioned earlier. All the guys that I have met till now have the same mindset of today's notion of love and relationship which were temporary, non-committal, casual and hollow. What surprised me more was that this ideology was followed by men of my age group.  It took me a while to realise and understand the changing notions and ideologies of love and relationships. Situationship, breadcrumbing, ghosting are new terms that I am aware of and unfortunately have experienced almost all.The few nice men on the peripheries who still believe in stability and genuine love are slowly dying.

I had immense hatred towards myself. Looking at the mirror was punishment for me as I was sure that I was not beautiful enough and used to find faults about my physical appearance. After years of suppressing my negativity, I finally addressed them one at a time through support from my family, counselling and self-reflection that helped to create a healthy inner atmosphere in my body.  I attended an inner-child healing workshop where it helped me address my trauma, my inner critic and perception of myself. The challenges were many and it was a process for me to not take all failures as setbacks or a lacking in my personality. Initially, yes, I was immature, had zero boundaries and allowed people to walk all over me, and lacked the discretion of identifying genuine and fake. After years of self-reflection and healing, I am now clear of my wants and needs. My family, especially my mother, has been my rock all along.

I agree to some extent on all the self-love concepts. Yes, it’s important to have a healthy inner mind to attract good people, but I also wonder about the time period, cuz it’s been forever for me to find my guy :D. Hahaha. Nevertheless, I am still hoping and waiting for him. :)

2Q) How do you cope with these challenges?

 Some of my coping mechanisms include:

i. Music - It is my forever go to for bringing back my frequency and sanity in any situation.

ii. My counsellor - I share with my counsellor to give me a neutral perspective of the overall situation simultaneously showing genuine empathy.

iii. Praying to the universe - I am an agnostic atheist (my sister often argues that this term doesn’t exist. LOL.) and I believe in omnipresent energy, the cosmos, galaxies, nebulas and so on. My universe includes my late grandmother, my favourite musicians, poets, good people who have done good to me and to others.

iv. Staring into space - A state of thoughtlessness. Going blank helps me immensely.

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

This is a complex and difficult question which I might be unable to answer.

Yes, when it comes to colleagues, having an open mind is highly appreciable to maintain a pleasant atmosphere at work places.

               Bullying

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

In school, I remember getting teased/picked on by this one boy who made fun of my walking and called me names. This was in my 6th grade. In my 4th grade, I remember when my school bag was stolen for reasons unknown. Even though I got my bag after 2 days, it was traumatising, unpleasant and shocking. I have no idea who did that act of stealing my school bag till now. In my 3rd grade, my stationary set was stolen and totally destroyed for unknown reasons. I later found out the person responsible for that act, but I was unable to confront him then. Except for these significant incidents, I was never bullied. I think one of the reasons for this could be my invisibleness. I used to keep to myself and never socialised with anyone. I remember when I was in the 7th grade and I was literally marked absent by my class teacher because I was super quiet and although I told ‘present’ I was never heard.

At my workplace, I was well adjusted the majority of the time. There are incidents where I was not included on purpose or a colleague would do hurtful things by ignoring me. I used to cry and feel angry about it. I received help from my counsellor who suggested techniques to stand up for myself. 

My present workplace has made the necessary accommodations and provisions to allow me to be more comfortable. By letting me use my earphones to listen to music and limiting my interactions with people who are in my immediate work environment and with people who I find are more comfortable to converse with me has ensured a better inner and outer environment.

2Q) How do you cope with these challenges?

In the present day, I make myself heard by standing up for myself and by addressing things that are bothering me.

Sharing about my distresses with my counsellor has been the most helpful. It has helped me pave way for clarity in thoughts.

My parents and sister have been my constant support system since the beginning.

I learned to stand up for myself and ask questions when there is inequality. I also stand up for people who have been supportive of me.

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

 To continue reading up and educating oneself about autism and the various types of disabilities and to view us from a space of empathy and not sympathy. Empathy makes people take actions towards the welfare of the person.

              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

My existence was a mixed bag of acting neurotypical and being my unmasked self. It is a mixed bag because society wanted me to 'act normal' but deep down, I knew that I wasn’t made for this neurotypical society. Some of my idiosyncrasies were known to some people, including my parents,  but they (nor I) never fathomed it could be because I was autistic.

Everything changed 2 years ago after I received my official diagnosis from Action for Autism. Whenever I share that I am autistic the first words are "oh! you don't look autistic" "You look normal to me". I used to get upset when I heard such comments but now I just smile and try to educate them, that is if they are interested in knowing more.

I volunteer at café Arpan, a café run by differently abled adults. Here I help the autistic adults and differently abled adults to manage their emotions and behaviours. Since I interact with customers who are majority neurotypicals, I have to smile, maintain eye contact and try to converse in an uninterrupted manner. Or if I am in a public space, I have to keep my stims under control and maintain eye contact to look 'normal'.

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

After my diagnosis I was happy and relieved, the reading-up of autism was plenty and it was a new journey of soaking in this new identity.

All along I was nobody but suddenly I was somebody. And I started being myself, that is my unmasked self among my close colleagues and my family.

For many it didn’t matter as they were good to me. For some, they thought that I was making autism my entire identity and was trying too hard. Wait, what was that??!! I had no idea what that even meant! How to be less autistic? How to reduce my autism? And these statements were shared by the so-called allies of autism. I inferred that by sharing such statements, they wanted me to mask my identity or show less of my autism. Comments like this did not help me at all. Fact is, I was disappointed that none of their statements were helpful or supportive.

My only solace was my counsellor who helped me navigate the complexities of my emotional overwhelmingness.

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

I took a break from my work and the work environment. It proved beneficial for me as it helped me rewire my brain and sort of have a de-tox time. I started posting about my autistic journey through poems and writing about my lived experiences on Instagram. This helped me to connect with more autistics from various parts of the country. I also attended seminars to understand about autism and the autistic identity shared by fellow autistics. This helped me in deeper acceptance of myself, my stims, my light and darkness within me and to proudly display my autistic identity.

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

 It is essential for everyone to understand that talking about autism is not an attention-grabbing technique or to gain brownie points. It is a genuine neuro-developmental condition and I urge others to atleast read up about autism before coming to any judgement or conclusion. I know that it is a long way to even think of an inclusive society and acceptance in a largely neurotypical society. However, the first step to work towards this is to have an open and non-judgemental mind.

           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 can recount some instances about this challenge -

> My self-control was out of place. I remember that I used to talk to strangers who come to the cafe by sitting opposite to them, without understanding their personal space.

> I had a hard time saying 'No' to people which eventually did not serve any good for me. As my presence would always end up being taken advantage of for their selfish reasons.

> I am a decent planner and I can plan well in advance for some events. But if the plan is cancelled at the last moment, I get deeply disturbed. I remember when I was in college, I had made plans with my mom and sister to go out shopping. Unfortunately my sister got sick that morning and the outing had to be cancelled. I was distraught and was continuously cribbing about my sister's ill health. I even went on to blame her for falling sick and held her responsible for the cancellation of that day's plan.

2Q) How do you cope with these challenges?

I have learned through experience and learned techniques to handle disappointments, one of them being crying. That helps immensely. Second, I communicate with the concerned people by voicing my thoughts and feelings and to plan the next steps.

I am also learning to accept and handle disappointments in a healthier way.

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

 I would request people to not rush in labelling us as difficult and to inform in advance of cancelled plans and early schedules.

              Social life

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

My challenges in social life are a mixed bag. I prefer to stay away from crowds that I find are non-welcoming. I prefer one on one interactions more or just being by myself. If the group is accommodative, I would feel more at ease to interact with them.

          Towards a better tomorrow

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

My message might sound like a dos and don'ts list but here goes –

Accept your child for who they are.

Accept your son and daughter for their unique-ness.

Forcing them to ‘fit-in’ will do more harm than good.

Celebrate their achievements. However small or big they might be.

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

 As a therapist myself –

Practicing patience, non-judgemental approach, treating them as an asset and having a strength-based approach will make a difference for the individual. Giving space and time for the neurodiverse individual to share or start communication with the therapist, building and maintaining trust is the basic foundation of a counselling relationship with a neurodiverse individual. It’s also important to let the individual be a part of the decision-making process that is made by them and essentially for them.

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

It starts with the individual.

Talking about disability in family discussions; outside with friends and relatives, not all the time of course but whenever the occasion arises.

Practicing inclusiveness at educational institutions like schools, colleges, universities.

Employing neurodiverse individuals with prior education about neurodiversity to employees, having discussions with neurodiverse individuals about their lives and to be as you are with other normal people!

Our disability is an asset, not a burden.

We are contributing members of society, enabling and empowering individuals of all neurotypes.

This interview is an eye opener and brings to light the lives of female autistics, especially late diagnosed ones and how their challenges are different to the ones faced by autistic men. I hope more women on the Autism spectrum get the support they need. Thank you for sharing your journey with us! God bless you dear Suha, 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.