Meet it squarely, face to face;
Lift your chin and set your shoulders,
Plant your feet and take a brace.
When it’s vain to try to dodge it,
Do the best that you can do;
You may fail, but you may conquer,
See it through!"
I am Shivam Sharma and I am a freelance photographer based in Mumbai and a proud adult autistic guy.
2Q) Please share your hobbies and interests/passions with us.
My hobby is listening to music and I do like travelling because being a photographer, loving travelling and randomely clicking photographs of something gives me a kind of satisfaction. Even though I am a professional photographer that is also my hobby and interest. My initial days of my career has been about clicking photographs and random stuffs. What makes me relax is music, watching movies.
3Q) How do you cope when you’re having a bad day?
Well, every day is not a good day, there will be some tough times, there will be some bad days. But how am I coping, as simple as that. If you’re having a bad day, you have cope by self motivating yourself by saying “ this is how I want to do it. NO matter if things are so pretty much messed up but you have to focussed, you have to make yourself strong and you have to be positive also.” Positivity is the most important key factor when coping with bad days. So that’s how it is.
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)
In my life it has always been about small moments. When you get a small achievement na always take is as a very big celebration. You know, in my family, even a small achievement is celebrated as my mom giving me a treat or something, my maasi (aunt) giving me a treat even if it is for small small achievements. We do celebrate them because these things will always keep us motivated but at the same keep cheering the moment. These glimmers in your life, this hope is always there so that you never lose hope even for a small moment. Even in bad moments, you have to take away positives. Even if we didn’t have a good day, I got some good exposure. You cannot always go up, you sometimes have to go down also. So being down to earth is important, that’s my glimmer in life.
5Q) When did you realise that you are autistic?
When I was ten or twelve years of age. My mom told me that I am autistic. In my initial days I asked my mom if this was a disease. I was worried back then because I was a child. But my mom told me that it is not a disease, it’s a neurological disorder. She explained me in my school days about what is autism. Before the diagnosis, I didn’t speak much and I was a very shy person and I am still shy actually. When you meet new people, even being an adult autistic, I feel shy and don’t actually give much eye contact. That is challenging but you know, being in the profession, you have to face those challenges and they make you a tough person in your mindset. Being an autistic, is a blessing. For me I take it as an acceptance. I don’t think ,“ Oh my God! Why this is happening to me? Why is God doing this to me?” These things never come to my mind. You know why? Because my mom has educated about autism, intellectual disability. The spectrum is not that big even though my brother is also an autistic but he is non-verbal/ non-speaking. I can speak verbally. But my disability percentage is something around 65-70% and my IQ is good. I got a positive result from the last assessments.
Life changed in a positive way, it never comes as a negative in my mind because I accept that I am autistic but it doesn’t mean that it really affects my skills and abilities. Although there are some issues which people don’t know about me very well . People look from the outside and think that I am a normal person but that’s not the truth. There are some things that people don’t actually observe – my hand movements, I don’t give eye contact when speaking, eye hand coordination is very difficult for me, especially when meeting with new people.
Education and Workplace Experiences
1Q) What are your experiences in school/college and workplace… What challenges do you face?
I was kind of notorious in school, I was enjoying in school. But it was really difficult to make good friends. Making good friends in the sense, it is really hard to recognise who is my good friend and who is not. That is where I actually start lagging. I got ragged about that. Although whoever I am friends with gave me life lessons, both good and bad, but I take it in a positive way. If they use foul language I don’t panic. I say it’s fine. I am a kind of person who never used foul language in my school days because I am very cool and calm and the same time I am facing anxiety because once I lost my pen or pencil or something, I really cried. I have a very bad experience of crying during exams in schools. When your parents leave you in school and say goodbye, I was sad like other students but then I realised that education is most important. Obviously the first education comes from your home, then from your teacher. You respect your teacher.
So now I am actually working as a freelance photographer. I don’t have a workplace though, because I am doing field work. So when you do field work, the most important challenge is that you have to give the photos on time, follow deadlines and if you are sending something important, you have to send it on time. Although I am not working like 9 to 5 job person, I like working as a freelance photographer.
2Q) How do you cope with these challenges?
I cope with the challenges by sticking to the basics, then everything will go well and according to plan but sometimes there are days when it never goes according to the plan, those are tough days. But you have to just accept it and move on. That’s how I cope with the challenges and learn at the same time about the situation, how to commit and how to do it in a right time.
3Q) What accommodations ( physical or changes in the mindset of people around you) would help you thrive in this scenario?
It depends on the person, if they know that I am autistic and knows me and understands my mentality. The mindset of the people about autism, they think is it a disease but things are changed now with the arrival of the National Disability Act. People are aware about autism. So things have changed so quickly that it’s a new normal thing now, that’s the most important thing. You have to awareness about autism, that’s the most important thing. That’s how people around me can help us thrive. To create awareness is the most crucial thing.
Communication Challenges
Q) How different is your communication style from the Neurotypicals and how does it affect your daily interactions?
It’s quite different. I talk a lot, people think that I don’t have any work to do. I want to control it. I speak fluently in Hindi and Punjabi but struggle a little with English. People should accept communication in regional languages and not insist on speaking only in English. It stresses me to speak only in English. I can’t type or text much. My friends help me.
I do face communication challenges when I meet a new person but once I keep meeting the same person, then I won’t feel shy and open up about everything. I don’t understand much about sarcasm in general but sense of humour I got it.
Relationships
Q) What do you look for in your relationships? ( friends/family/colleagues/partners)
What challenges have you faced in your relationships?
Relationship in the sense, a girlfriend? No I am not looking for any girlfriend but if I want to have a life partner, it’s important that first thing I have to be settled in life. Secondly, it is very important to understand one another, try speaking to them and if I feel that I am constantly sharing my feelings, emotions and everything, then I can start thinking about love. That actually comes after a long discussion for months or a year(s) to realize that this is my life partner. That is important.
Apart from this, my relationship with friends are very healthy but if the friend doesn’t realize my thoughts or what I am going through, then that friendship doesn’t go well. Family has helped me a lot. That has been really good in my good days and bad days. Family is always the first priority. When I have bad days and I cry, I talk to my mother. She has always been there for me. My mother is not God but is like a God for me. It is important to speak to your parents because they are the ones who bring you into this world and support you. So talk to them when you are in a tough situation, that’s very important.
Bullying
Q) Have you faced bullying in school/college/workplace? Please share a few details..
In my school days, till my eighth grade, I faced fear of bullying. There were a few ties when someone was touching my private parts and back then I was actually not knowing that it was very bad. One day I complained to my mom and dad and then they taught me that this is a wrong place and this is a bad touch and examples of good touch. I am so grateful for that as I stood up against bullying. I think the bullies are not good, especially in schools and colleges. Even in workplace, employers should not bully in any way, mentally or physically.
Masking
1Q) Have you ever had to mask to look neurotypical? Please share your experiences..
Yes, quite a lot in school days. I had to mask to look neurotypical but it is a need of the hour. When I got to know that I am autistic, I didn’t take this for granted. I take this as a challenge and it made me strong. I think being a neurodivergent person and an autistic, it is important that I have my challenges and face them bravely.
2Q) When did you decide to unmask and how was the experience?
Being an autistic, it doesn’t mean that you are different. You are the same person, sitting in the same school with the same bunch of classmates. It is important that you have a camaraderie with them. But don’t beg. I always learnt in my school and college days that I am not different at all but God has gifted me something else. Autism is not different at all, it’s special. Different and special are very different words. But when I realised that I want to unmask and I just want to break the shackles of people’s thoughts about autism, when I was in college. I was thinking about starting my photography career . I was about nineteen or twenty years old then. Then I made the decision to unmask and I want to prove them wrong that an autistic guy can face the challenges. Throughout my life and career, I unmasked intentionally not only to challenge myself but also to give a huge blow to the people who say autism is this and that. You know, the mindset is important. If I feel scared, then I think OK, it's fine but if I am over scared, then I am not learning.
The experience of unmasking has been good, that has made me mentally strong and made me realise that unmasking is so important especially in the modern society. I can even say that I am a proud autistic, yes I am a proud autistic. But I can mask and unmask depending on the situation. That’s how it is!
Executive Functioning Challenges
Q) 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 adaptable thinking but I can’t always adapt because I am sometimes scared to lose my financial stability and everything. I am always scared.
I can do planning. I self monitor my works and assess my work during my busy seasons and after the season I analyse how my work is going on and how I have to improve myself as a person and photographer.
Working memory is important. Time management is something I am very strict about and I am still following those time management commitments that I made. Depending on the schedule and planning, it is important. That’s how it is. But when there is uncertainity, then I take quick decisions and organise quickly. Depending on situations, I sometimes have to take quick decisions. I have faced these executive functioning challenges. Every time, the new photography season begins, I feel scared about how it will go, how it affect my work and professional life. These things are always on my mind but it doesn’t scare me now. You know why, because I love to take challenges and that has made me strong.
Comorbidities
Q) Please write in detail about what comorbidities have you faced?
Well, once I faced during the lockdown. Everyone was locked down and stayed at home and doing nothing. Sitting at home, watching tv, old movies, cooking and cleaning. It affects financial stability because of the inability to work. My family runs a family business. During lockdown, there was a time when my mother was not feeling well and went to my aunt’s home and that’s when the challenges of cooking and constant cleaning started. The basic things that I have learned that I didn’t learn till then was cooking. It made me mentally strong. But in the same period I had a lot of suicidal thoughts. I felt like I don’t want to live my life. I want to leave the house and go out somewhere . There was no one to question me and I had suicidal thoughts, I was thoughts of killing myself with a knife. But then I realised one thing my mom told me when I was in my school days that suicide is not the answer. That hit me straight in my mind, like a arrow and then the quick realisation happened that if I commit suicide then I running away from my responsibilities. If I don’t take it as a challenge the I am a loser in my life. That made me motivate myself that it’s ok if I have a mental health problem. But I am going to cope with this challenge.
During the lockdown, gender differences have gone down. Though I faced difficulty initially, I learned to cook and that made me happy as it was an important life skill.
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 to the younger parents who have faced the diagnosis of autism, the first thing is to go to a doctor and get to know about autism, what challenges you will face. If you are not a parent right now, it is important to learn about autism. The first thing they have to know is this is not a disease. There is no medical cure and those who are thinking about medical treatment, this is wrong. Autism does not have a medical cure. They have to learn that it’s God’s decision. Learn about autism, read books, watch videos on YouTube from doctors and therapists.
2Q) Please share your message to therapists on how they can include neurodiversity affirming practices in their approach..
Now a days the therapists will only talk about the mental health and charge you heavily. To the person with mental health issues, that is the worst thing, don’t how many can afford that. I am not sure if all therapists can include neurodiversity affirming practices in their approach but there are some there are who do that very well. Depending on what the therapist can learn about mental health, anxiety, dyslexia, so many …
Divyangjan, I cannot call this as a handicap, it is a disability. They have to learn this, irrespective of where they live and what they studied to become an effective therapist. Keep learning about what is happening in the society and look around and see if people are feeling, anxious and depressed. Don’t charge too much. The therapists have think that if they are in their shoes and realise the difference between mental disability and mental health and neurodiversity. They have to think about this. If not now, then when and if not them, then who? In a positive way I want to ask them to learn about neurodiversity affirming practices and follow them.
3Q) Please share your thoughts on how we can work towards an inclusive and neurodiversity friendly society..
I can just say that the responsibility of the citizen, be they parents, neighbours, teachers, professors, psychologists, the other moms, because mothers are more understanding of neurodiversity and the need for inclusion. To make a neurodiversity friendly society, we should support each other in tough times and if there is a problem, help one another. Be kind to one another. As you have asked me about glimmers. I think small, small things can help you become a good person in society is the sense of gratitude and extending a helping hand and it always starts from the home and moves to society and then the entire nation.
A very positive, happy and joyous people who show gratitude and kindness will help us build a neurodiverse friendly and inclusive society and help the neurodiverse individuals but the entire society and nation. The government should help and make us feel that we are not alone, not a hidden community, we are the citizens of this nation.
It is important to realise that if we as citizens don’t take responsibility, then who will. If the government doesn’t take responsibility, then the citizens should, the NGOs, the corporates, even the celebrities should forward and talk about neurodiversity. If not them, then who? So think about it and stay positive and if there is someone who needs help, please help them irrespective of whether they are neurodivergent or not. You will get a lot of blessings. Kindness can help every individual. Be kind to neurodivergents and don’t insult them, talk positively and avoid negativity, irrespective of the situation. If they need help, help them; if they want to share their feelings, thoughts and problems, listen to them and try to understand. That’s all I can say.
I hope reading this interview has been as memorable and uplifting for you as it was for me. God bless you dear Shivam, 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.
