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.
