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
