In today's interview in the immensely popular Empowering Voices Series, we meet a talented musician on the spectrum - Ms. Swara Swami. We are both ardent music lovers and this is the poem that comes to mind when I got to know her better over the course of this interview :
Bryanna T. Perkins - A Friend Found In Music.
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Welcome to My World
1Q) Please introduce yourselves to our readers.
I am an autistic Music Therapist, singer, current Masters in Expressive Arts Therapy student and a Grammy nominee.
2Q) Please share your hobbies and interests/passions with us.
Singing, watching movies and shows, exploring nature, meditation, dancing, acting, surfing the net, music, food etc. They not only relax me, but they also bring joy to me.
3Q) How do you cope when you’re having a bad day?
I do a lot of breathing techniques, I stim with music, I also talk to myself.
4Q) What are glimmers in your life? (Glimmers are tiny micro moments of joy - fleeting, everyday moments that elicit a rush of happiness, gratitude, calm, peace, safety, or goodwill)
When I listen to music, when I watch movies and shows, when I dance, when I sing/hum, when I get accepted, when I am complimented.
5Q) When did you realise that you are autistic? If you’re a late diagnosed autistic, please write about life before diagnosis and how it changed once you knew you’re autistic.
I always knew I was different from everyone. I went through a series of misdiagnosis and possible diagnosis. I got diagnosed at the age of 16. On one hand, I got a sense of relief that I can understand myself now, but I also had self-doubt as many people would often say that “I don’t look autistic.”
Education and Workplace Experiences
1Q) What are your experiences in school/college… What challenges do you face? If you’re working, please include your workplace experiences too..
My school experiences weren’t easy. My teachers didn’t understand me. They thought of me as a troublemaker as I would keep asking questions. They used to suggest me to go to boarding school. And this is something I don’t get. Why is boarding school a place to punish people? Same way I don’t get why they think our traits makes us troublemakers. My headmistress sent me home saying they don’t want students like me there. I had to go apologise to her the next day and she took me back in. For my coursework, I always need extra time. I also need visual cues. I didn’t get any support at International College of Music (ICOM) and failed many semesters due to lack of accommodations. While at Berklee College of Music I had support, I also had teachers who didn’t understand me. At one point I was told by a teacher to make my needs more known. I have been trying to take the CBMT exam, which is the exam Music Therapists have to take to get board certified. I have not been able to pass the exam as multiple choice exams are very hard for me. Its hard for me to choose the best answer between the four as all four sound right to me. With workplace, I didn’t really share at my first workplace as they might not understand. But my internship site has been very understanding of it.
2Q) How do you cope with these challenges?
I stay determined to fight. I try to take help from my community. I also sing, dance, explore nature and meditate.
3Q) What accommodations ( physical or changes in the mindset of people around you) would help you thrive in this scenario?
I need a separate room to take an exam. I also need extra time for my assignments and exams. I also need powerpoints
Sensory Challenges
1Q) Please share your sensory world with us.
I am quite sensitive to high pitches, spicy food, touch without consent etc. I also cannot sit in one position for long hours.
2Q) How does it affect your daily life?
I tend to avoid it. For movement, I need to stim. I change positions or stand.
3Q) What accommodations would help you thrive?
I wear ear phones for high pitches, eat medium spicy food etc. I would always expect people to ask me before they touch me. Also to let me stim.
Communication Challenges
1Q) How different is your communication style from the Neurotypicals and how does it affect your daily interactions?
My communication style is very blunt and straightforward. Neurotypicals perceive me as rude but I mean well. I tend to overexplain things. I communicate better with writing than talking. I need to script before I speak to people.
2Q) How do you cope with this challenge?
I just need to keep reminding myself that this is the best I can do and there is nothing wrong with me.
3Q) What accommodations would help you thrive?
Just some understanding that I mean well. I will never say anything to hurt another person.
Relationships
1Q) What do you look for in your relationships? What challenges have you faced in your relationships?
I have never had friends in school. I was bullied heavily, everyone perceived me as weird and different. I had friends only in college. They were much more accepting towards me. But I feel the most comfortable with neurodivergent people, whom I was able to find during the pandemic. I feel so much support from me. I feel that I am not alone. My family has been supportive towards me. They have supported my dreams and challenges.
2Q) How do you cope with these challenges?
I am a loner. For a while I have only been engaging with neurodivergent people and that has helped me. I focus on doing things that I need to do. I remember last time when I was crushed hard due to a friend leaving me, I decided to focus on studying for my Music Therapy exam, and I decided to do my Masters at Lesley University.
3Q) What accommodations or changes in the mindset of people around you would help you thrive?
What I have noticed is, people say how much they understand neurodivergence, but then if I unmask and show my traits, they get shocked. I cannot mask all the time. So please accept me for who I am and mean it.
Bullying
1Q) Have you faced bullying in school/college/workplace? Please share a few details...
I was bullied heavily in school. They all felt I was weird and different. I didn’t share my autism diagnosis then but still they felt I was weird. I also faced a lot of racism by my peers. I was also bullied for my looks and size.
2Q) How do you cope with these challenges?
I used to listen to a lot of music. Linkin Park specifically helped me a lot during that time. I used to take out all my rage through their songs. Disney songs also used to help me motivate. I would sing as well.
3Q) What accommodations or changes in the mindset of people around you, would help you thrive?
It's not cool to bully someone different from you. There is always a reason why someone is different from you. Bullying someone only shows your true character.
Masking
1Q) Have you ever had to mask to look neurotypical? Please share your experiences & also the role it may have played in your late diagnosis.
I always do. I don’t know all my life I had been masking. When I mask, people do not even see me as a neurodivergent, but when I get close and I unmask, they are so shocked. And at the moment, it's hard for me to unmask as I don’t even know I learnt to mask in the first place. I always try to hide my autism diagnosis for any job interviews. I mask in front of them.
2Q) What challenges have you faced because of masking?
I face burnouts and shutdowns due to masking. And if I unmask in front of neurotypicals, they are always in shock because that's not how I used to present myself.
3Q) When did you decide to unmask and how was the experience?
There is no specific incident, but I would say around 2 years ago when I learnt what was masking, I slowly decided to unmask. I also unmask after meeting any neurotypicals. I would unmask in my room.
4Q) What accommodations or changes in the mindset of people around you, would help you thrive?
If you say you accept me, please do. Don’t be shocked when I unmask as masking comes naturally to me.
Executive Functioning Challenges
1Q) What executive functioning challenges ( adaptable thinking, planning, self-monitoring, self-control, working memory, time management, and organising) have you faced and how does it affect your life?
I am very good with planning and organising. Time management I need some work with.
Adapting is always a challenge for me. Self-control too. During burnout, I do have issues with working memory, though not always a challenge.
2Q) How do you cope with these challenges?
I meditate, do some walking. I do breathing exercises. I also write down what is expected.
3Q) What accommodations would help you thrive?
I need a separate room and some time to breathe and process.
Social life
1Q) What challenges have you faced in your social life?
So I don't generally like parties. Its too overwhelming for me. There are too many people and I don’t know who to have a conversation with. Plus the loud music can be a lot. I prefer small hangs. There is some structure there with who I can talk to and what to talk about. I also like meeting people at cafes. For me, there is a limit. I can only meet people for at the most 2 hours, after I get overwhelmed.
2Q) How do you cope with these challenges?
I script before meeting people. After any social hang, I come home, unmask, stim and listen to a lot of music. I also do breathing exercises.
3Q) What accommodations or changes in the mindset of people around you would help you thrive?
I think people have this mindset that disliking parties makes you old and boring. That’s not the case. There is a limit to things and it gets stimulating. Make it sensory sensitive, let there be some structure. If needed, there should be a place to process.
Comorbidities
1Q) Please share about what comorbidities have you faced?
I have alexithymia, anxiety, trauma etc. I also have PCOS and maybe PMDD.
2Q) How do you cope with these challenges?
Dealing with alexithymia is still hard. I don’t understand emotions and feelings until much later. I don’t even realise if I have made any mistakes. I go for therapy, meditate and journal.
I also do Mandala coloring to regulate. I don’t know if I have PMDD, I am still discovering.
3Q) What accommodations or changes in the mindset of people around you, would help you thrive?
With alexithymia, as long as you tell me, it would help me. It's actually saving me. Mental health is a community thing, not an individual thing. So rather than shaming me for my mental health, listen, support and help me.
Towards a better tomorrow
1Q) Please share your message to parents of autistic children in how they can create a nurturing environment at home..
Please accept your child for who they are rather than telling them to adapt and change. Their brains are wired differently so it's very hard for them to change. Please encourage their strengths. Don’t go for ABA as their techniques can cause a lot of harm to autistic children. At the same time, it fixes and cures autistic people. Autistic people shouldn’t be fixed or cured, they should be themselves. Let them stim, give them time to process. If possible, try to make arts as a part of their lives.
2Q) Please share your message to therapists on how they can include neurodiversity affirming practices in their approach..
Encourage neurodivergent clients to be themselves. Work with them in such a way where they can be themselves. Focus on their strengths rather than punishing them. Encourage them. Also be authentic with them as they value honesty.
3Q) Please share your thoughts on how we can work towards an inclusive and neurodiversity friendly society..
All neurodivergent people need is acceptance. If you just give them that, the world will be a better place. If you continue to employ neurodivergent people in jobs with accommodations, they would do wonders. They are different but capable of doing so many things.
Thank you dear Swara for sharing your journey and insights with us. God bless you and may all your dreams come true!
I would love to carry forward this series as long as possible and share the insightful journeys of Indian speaking autistics. Please reach out if would like to come forward and share your journey and guide parents and therapists. My email - parentingautismindia@gmail.com
DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.
