Autistics voices in Climate Action

Here's the recording of the conversation 'Neurodivergent voices in Climate Action' organised in October 2024 by Action for Autism, with Dilip Kumar Makela, Pranav Sethi, Esha Patel and Raj Mariwala. If you have the time and interest, please listen to the full 1.5 hour long conversation. I speak at 0:32:55 * 1:00:35 * 1:11:52 * 1:21:20

 

Here is an edited transcript of my talk.

Firstly, I'm delighted to be here and to be part of this important conversation—something I have been thinking about for a very long time. Since I have primarily been introduced as a yoga practitioner, let me begin by briefly sharing my journey so far, just to set some context for my further sharing.

My journey began with addressing urban environmental issues like waste management and sanitation. This got me wondering why so many people were migrating from villages to cities! And then I started learning about what ailed rural India. I then spent a couple of decades working on anti-corporatization and globalization, regenerative farming, and later on reimagining education, since I felt the schooling system was at the root of many of our crises. I worked on organizing communities and local economies, among other initiatives.

After decades of this kind of work, I finally turned toward yoga - not to escape from this important work. But because, at the end of a long marathon of trying to address issues one by one, I became convinced that although all this work was necessary and valuable, it was still not enough to address the depth of the crisis we are facing. I came to see that underlying these many crises - including climate change – is fundamentally a spiritual crisis.

By spirituality, I do not mean the kind that asks us to escape from physical reality or wrongly translates māyā as “illusion.” māyā actually means “measurable yet transient.” So I am speaking of a spirituality that takes physical reality - including climate change and climate action - very seriously; a spirituality that brings consciousness into the physical world. This, for me, is the very foundation of Integral Yoga as articulated by the seer Sri Aurobindo. And this is what drew me to the vision and dream of Auroville.

From this new vantage point, what I am seeing is that climate change is actually a symptom of a larger metacrisis. It is not multiple crises, but really one interconnected crisis; much like fever is a symptom of an underlying condition.

What I find missing in much of the broader discourse on climate action is not merely certain perspectives. What is missing is an entire lens through which this crisis needs to be seen and understood if we are to begin acting in ways that can truly make a difference.

I feel that our current perception of the crisis emerges largely through what I call the colonized lens - a reductionist and fragmented lens in which we perceive primarily through the intellect. But, by its very nature, the intellect can only perceive parts. So when it identifies global warming as something that must be addressed, it logically begins asking: Where are the emissions coming from? Which sectors contribute how much? What can be reduced? It then attempts to build the big picture by assembling these different parts together. I feel that this very approach is our fundamental crisis!

We humans have come to believe that we are separate entities; separate from one another and from other life forms. We believe that everything can be understood in isolation. But, I believe that no matter how sincere our intentions are, and no matter how aggressively we apply our various well-researched strategies, if we do not address this underlying illusion of separation, we may only become more deeply entrenched in the crisis.

What I am proposing is that we flip this lens around.

When we first learn to see the big picture, the metacrisis, we can then zoom in and understand the different parts and their interconnections. If we can do this, there is hope that we may discover genuinely new ways of responding. And this, I feel, is precisely what the indigenous or decolonized lens does. It begins by seeing and understanding the whole - pūrṇam, as we call it in our culture.

Through this lens, when we look at the individual elements of pūrṇam, we realize that each element is itself pūrṇam. This is what the well-known Vedic mantra “Pūrṇamadaḥ Pūrṇamidam” speaks of. Whatever emerges from the whole remains whole.

Going by this very logic, when we gather fragments, threads, and perspectives and attempt to construct the whole by assembling them, no matter how many pieces we collect or how diligently we try, we may only end up with a larger fragment.

I think this is what Einstein meant when he said, “We cannot solve our problems with the same level of thinking that created them.” Interestingly, Einstein is now being understood to have been autistic, and someone who thought profoundly outside conventional frameworks.

So, I would suggest that more than merely incorporating additional perspectives from neurodivergent people, what is urgently needed is a change in the lens itself. Decolonisation is not an option anymore. It is a necessity if we are to survive as a human race.

***

It is difficult for me to look at my work within any one specific field because I have moved through many different contexts and issues over the years. Something that I have been learning about recently is how we autistics often experience a heightened sense of eco-anxiety, when compared to neurotypicals. This insight helped me make sense of the earlier part of my own life.

For many years, I lived with a deep sense of panic, depression, and loneliness, constantly wondering: Why am I feeling so intensely about what is happening in the world, while others seem to be unperturbed?

In response to this, I spent about two decades of my life denying myself a lot: using only public transport and handed-down clothes, saying no to this and that - trying to reduce my impact on the earth. Simultaneously, I engaged in initiatives that I thought addressed and solved what I perceived as crises. During those years, I went through periodic burnout. I am now in the longest and most intense one ever.

***

From where I am today, I see the most important and urgent thing to do is become more compassionate with ourselves. The problem we are trying to respond to - the machine that keeps cranking up every day - is so much bigger and faster than any one of us can even imagine. Yes, I can turn off my air conditioner. But today, I was able to come here to this conversation, be functional, and speak with you because I had my AC on. So, we need to put things in perspective.

As was mentioned earlier, perhaps one of the biggest responsibilities we have as a neurodivergent community is to bring our voices into the world. But in order to do that meaningfully and powerfully, we need to be healthy. We can’t afford to be living our lives in survival mode. We need, first of all, to be thriving, so that we can genuinely make a difference. This perspective has settled many of my own anxieties.

There was a time when simply turning on the AC switch would involve half an hour of internal chatter: Is this really necessary? What am I doing? Am I contradicting my values? Now, I feel that much of this inner noise can itself become an obstacle to the work we are truly here to do. All these actions are important. But they need to be held in perspective. That is why I keep returning to the importance of seeing the whole first, and only then engaging with the details and specifics.

***

I also want to speak about my own long journey of engaging with one crisis after another - waste, incineration, toxins, climate concerns - years spent immersed addressing depressing issues. And finally, what truly made me feel at home was gardening.

During my years in the organic farming movement, I had visited and stayed on many farms. Though I often felt uncomfortable on monoculture farms, I felt nourished whenever I visited rich and diverse farms. Now I feel that this is my home. No matter what else I do, if I do not spend time in my garden, I feel that I cannot fully be myself that day.

So I think one of the things we really need to do is to find our sanctuary, as individuals and as collectives. For me, that sanctuary is unquestionably close to nature. I cannot imagine this outside nature. And it is from this place of connectedness, from nourishment - that we can begin to do the real work we are here to do.

***

I had made a list of things I wanted to speak about today. But I am going to stay with one thing that feels the most important.

After nearly twenty-five years of working and constantly doing - engaging in action of many kinds - the last four years, during which my burnout has forced me to step back from all that doing, have taught me something very profound. In hindsight, I feel that I am only now beginning to understand the work I am truly here to do.

All that doing was valuable, yes. But now I feel that my deeper work is to cultivate presence: to deepen my relationship with myself, with nature, and to see whether I can become a channel for that higher frequency of energy / consciousness that is wanting to manifest in this world, and share my experience with the world, whether through insights, ideas, or possibilities.

We have neurotypical people who are often experts in doing, organizing, and figuring things out. I feel we also need to recognize and nurture a different kind of expertise within the neurodivergent community; an expertise in presencing, connecting and sensing. We are, in many ways, sensing-in experts. And I feel people need spaces where they can come and learn from this community what it means to drop beneath constant thought and begin to sense more deeply.

Broadly, this is what I wish to share. I think this dimension is what is often missing. I want to end with a quote by one of my teachers, whose work has been an inspiration in my life - Masanobu Fukuoka. He said: "Before researchers become researchers, they should become philosophers.". And philosophy here does not mean endless discussion, debate, or the churning out of ideas. It means a deep lived inquiry that goes beyond the intellect - an inquiry involving what one is sensing, feeling, and truly perceiving from the intuitive self. I feel that many neurodivergent people are gifted with this capacity in a more spontaneous way. And I think we need to create more space for this ability to be developed, and more collective spaces where it can be recognized and nurtured as an important contribution to the world.

Then we can bring it forward and place it meaningfully in the world.

I feel this is what is needed today, moving forward. 

Neurodivergent’s relationship with Nature; Eco-anxiety

When you ask this question, Nidhi, I am reminded of two specific experiences.

The first was when I entered a forest for the first time. It was a shola forest in Kodaikanal, and I was about twenty-two years old. I had grown up entirely in cities and had not really spent time in wilderness before that. I was so moved by the experience of simply being in that dense forest that I wept. I wept intensely that day, and I had no idea why.

When I returned home, I remember writing a long letter of apology to Mother Nature. Because when I came back into the city, I simply could not make sense of what we had done. I found myself imagining what this place might once have been, and I felt a deep sense of anger, sadness and disbelief. When I shared these feelings with people, and often the response was: “You are overreacting,” But to me it felt so real.

The second experience was at Niagara Falls. I was visiting the United States some years later, around the age of twenty-four or twenty-five. As I walked down the to get close to the falling water, I experienced something very intense. I stood there weeping for a long time, and could hardly leave that place.

There have been similar experiences throughout my life, but these two stand out very strongly. I grew up feeling that there was something palpable in these encounters with nature; something beyond words and beyond merely feeling good or enjoying beauty; a very deep and intense connection. At the time, I could not make sense of it. I could perhaps explain it intellectually, but I could not truly understand it.

Now, as I look back at these experiences with my understanding of the autistic me - my brain, my psyche, my whole being – I am beginning to understand it differently. And this is why I feel we need to consciously create more space for such experiences within the neurodivergent community. Not as occasional or accidental experiences, but as something that can be nurtured - a deeper and more spontaneous relationship. Because I feel the wisdom that can emerge from such connection is profound.

We hear today of courts in different countries beginning to recognize the rights of rivers, giving rivers a voice within legal systems. But what if we were truly able to listen to the spirit of the river itself, to genuinely listen to what she is saying? I feel that somewhere within us lies this capacity—if it is nurtured. And that, for me, feels very important.

Seeking a full-time writing assistant

In August this year, I will be turning 50. One of the ways I would like to mark the completion of five decades in this lifetime is by consolidating many of my writings (including several unpublished notes and manuscripts) into a few different publications. Some will be based on my lived experiences and reflective in nature, and some others will be more academic in nature.

With my current prolonged phase of burnout which has significantly affected my cognitive capacity, I cannot undertake this work alone. I am therefore looking for a full-time female writing assistant who can work closely with me over the next 12 to 18 months (approximately 35 hours per week).

The work will involve, primarily:

- organising and structuring my existing writings, notes, and ideas,

- transcribing voicenotes,

- occasional research when needed,

- designing and managing online platforms like a website (optional),

- basic editing, and 

- running occasional errands connected to writing, research, and publishing work.

Accommodation in Auroville, food and local transportation will be covered. And additional financial support is possible too!  

Outside of the work hours, I'm happy to offering mentoring support and facilitate a meaningful experience for you in Auroville.

If this resonates with you, I’d love to hear from you through this google form:

https://forms.gle/AEeYiUhL6dujuDeY7 

SOS on Neurodivergent Burnout

It has been almost six months since I initiated the blog series on Autism. And here I am still working to get my life basics like eating, sleeping, hygiene and getting through simple daily tasks and interactions, with episodes of regression, several rounds of trials and errors of different kinds, and so on. Apparently, such is the nature of severe and complex neurodivergent burnout! I am entering my fifth year into it.

Anissa, a soul-sister in New Zealand who is also in a similar space, and I, started a private facebook peer-support group for those in severe and complex burnout. (Actually her idea and I readily joined her when she asked me.) Why this group? As it is, neurodivergence (ND) itself is not understood enough in mental health spaces. ND burnout is even less understood. Chronic and severe ND burnout? Forget it. Phew! And this community is in dire need of support - physical, mental, emotional, etc. and hence this support group.

We have more than 400 members from all over the world, finding such a relief in discovering this group. Many of their stories are heart-rending! And they predominantly fall under two categories: women in peri-menopause & parents of children in their teens and early adulthood. 

"I am 70, late-diagnosed and don't think I'd outlive my chronic burnout. But I want to see if I can at least tell more people like me that they are not crazy, and offer whatever support I can."

"My really brilliant, sensitive and talented teenage son had to be pulled out of school, hasn't stepped out in a year, can't do basic hygiene like brushing teeth, washing himself up, or eat. And we just found out that he is in ND burnout. I am here to see how I can help him."

I read such stories everyday, and feel simultaneously pained and hopeful. Hopeful? Yes, and I will (hope to :) write soon, why.

Meanwhile, this is an SOS post.

The number of people, especially in the above two categories, in burnout is alarming. I keep discovering a story about someone I know / know of, every other day. Families having no clue, feeling helpless and not knowing what to do to help, and themselves feeling depressed.

If you have anyone in your family or friend circle that is just unable to step out, unable to attend to basic hygiene and self-care, unable to interact with anyone, has difficulty with sensorial or cognitive processing, please do not try to tell them it might all be in their heads, or to motivate them, or to inspire them by telling them stories of heroic people who overcame their challenges, or to suggest things like yoga, meditation, juice diet and the morning sun, or to tell them they are privileged and entitled and how you lived heroically with very little, and so on. 

While all of these might be true, if they are bright, sensitive kids or women, who you feel are not likely to be simply throwing a tantrum or seeking attention through victimhood, it might just make it much worse for them. Because if they are sensitive and intelligent, they probably already know much more about all that you are trying to tell them, are already flogging themselves with all the advise you are giving them, already feeling shame and guilt! And whatever you might be offering them with all the good intention, can end up doing only harm and no good. 

What they are most likely struggling with is simple Executive Functioning. And what they need is a proper diagnosis and professional support to get out of their situation. 

Things are looking much better in my life, and I am on the path to recovery. And in a year's time, I intend to build myself up, along with a small team, to offer integral life-coaching for neurodivergents, both group and individual, especially for those in burnout. But for now, I am happy to refer you to reliable professionals who can help you with the immediate next steps.

Please email me at sriram.sangeetha@gmail.com with the subject line: Seeking support

The Happy Man is the True Revolutionary!

In my late teens, I have a memory of being a fiery, “confident”, self-righteous ‘animal rights activist’ when I first got introduced to J.Krishnamurti through the conversation on “Why do you want to do social work?”  The question intrigued me as the answer was so obvious to me back them – “to help people”, “to save the world” and so on. “Why would anyone want to explore such an obvious question?” But since I had heard about JK as this cool philosopher, I decided to read it anyways. Even as I read through the first few lines, I experienced deep shock!

I used to be a member of my college NSS back then, and our coordinator’s way of “motivating” us was by guilt-tripping us. Though that didn’t resonate with me at all, it seemed to me like JK was on the other end, discouraging this young person from doing social work. I located myself as being somewhere in the middle of the spectrum convinced that my middle path was the right choice! I never visited JK for many years after that. In the midst of my strong disapproval and disgust for what I had read, a seed had thankfully quietly slipped through and seated itself within and had begun its work.

Since then, during my twenty-five years of being engaged in social work, I have been through a few cycles of burnout and complete crashing down of my mental constructs related to it. Each time, turning to the words of mystics like JK has helped me heal and renew myself, and resume my journey on a new bhoomi.

As a restless wanderer of many years, I have had the privilege of closely observing hundreds of activists and always being curious “What drives them? What energizes them? What makes them go on?” And in observing them, asking myself the same questions. Many years passed when I mistook ‘adrenaline highs’ for ‘energy’. Each time, these highs came crashing down leaving me burnt out, it had a lesson to teach me pushing me to look deeper. 

After many years of this practice and taking baby steps, which has been particularly growing in its pronouncement ever since I began my inner work through Yoga Sutra, the distilled essence of which I now realise JK was incessantly pointing at, I can now confidently say this: most people engaged in ‘social work’, including myself when I’m not aware, largely (not entirely) do so in order to compensate for a lack within. I say ‘largely’ because the seed and intention for seeing positive change is real too and cannot be dismissed. But that intention remains a mere intention, when not anchored in the right energy and can be swept away by impulses of our lower selves, which show up as dysfunctions and lack of integrity in many social organizations, and burning out of activists.

I have seen many activists from up-close who have such dysfunctional family lives, themselves with broken insides with very little joy, weary minds with rigid ideas and plenty of cynicism, inner desert landscapes with a very few oases… who then turn to social work to find meaning, to fill up those gaps in their lives, find those other lives to “fix”, find the oases outside. I now realize that if one doesn’t turn inwards and ask the quintessential questions that our culture has always pointed at “Who am I? Who is doing? Whose work is getting done? What am I getting from the doing? In doing what I am doing, what am I really doing?” and so on, one is only moving towards further desertification of the inner world projecting it onto the outside world, creating the same drama wherever we go. The NGO world is sadly fraught with so much of this unconscious drama and dysfunctionality!

I am still very drawn to and am actively engaged in the world of form. But my idea of Change has shifted significantly over the years. I realize that form cannot be the source of real Change. It can ‘merely visibilise Change, whose source is in the very subtle energetic realm we may call Consciousness’. 

As I continue to be baffled by form, as Wendell Berry puts it, I am slowly learning to go back and stay with this conversation with JK, which I now think is among the most critical reflections for any activist to engage in.

And finding deep joy is perhaps the most important and primary responsibility of anyone who truly wants to be an activist!

Appa

Exactly 6 months ago on April 20th, my Appa moved on from his body. And today, October 21st is his 92nd birth anniversary. And after processing his life and death and my relationship with him for the past six months, I now feel ready to write my eulogy for him.

My siblings and I grew up without much of a relationship with him. Some of us were scared of him, and some of us simply disconnected, as he was someone who did not know what it meant to connect with others, show his love or care. Besides asking for permission, or asking if I could bring him his dinner plate, I had never spoken to my Appa until I was 23.

Since I was the last child, I had the opportunity to spend many years with my parents after my other siblings had flown away from the nest, and hence the opportunity to start asserting myself openly with appa, and healing my relationship with him.

When I was 23, I gifted Appa with his favourite pastel-shade bombay-dyeing bedspread. Until then, he had never been gifted anything on his birthday! He received the gift with the glee of a child, and something fundamentally shifted in our relationship. I started having brief conversations with him. I had an honest conversation with him to tell him that I didn’t want to get married to someone random, and that I will let him know if and when I find someone. And to my shock, he said “Sure. It is important to me that you are happy. Let us know when and if you feel ready to marry someone.” I hadn’t expected this from Appa, who I had only known as the strict, stern patriarch. But he really said this! And then over the years, he mellowed and softened. And as I grew older, we had a more of a relationship to speak of. But his basic personality remained.

During the pandemic, as my parents moved in with us, I started spending more time with him. He soon developed dementia and had a few falls that weakened him. The last two years of his life were absolutely transformational for him and for us. Due to his dementia, he started recalling and sharing stories from when he was a boy and a young adult; stories I had never heard before. That helped me get a glimpse of his inner world. My closeness with Appa and my empathy for him grew.

All my memories of having had a challenging time growing up with Appa have faded away over the past two years. My Appa to me today is someone who lived a life of

… integrity. He refused to be corrupt during his time working for the Southern Railways, and hence got transferred every other year!

… generosity. He always helped anyone who came and asked him for help.

… deep empathy for anyone in suffering, especially voiceless animals and those living on the streets. “I go to Vinayagar temple every chaturti so that I can buy flowers and fruits from the local vendors. Their livelihoods depend on us.”

… gratitude. He often said “God has blessed me with abundance, and it will be a sin to not share with others in need”.

… passion for carnatic music, and train engines and coaches.

Appa joined the Southern Railways in his teens (due to his family’s financial situation) as a foreman and served there for 45 years. Even though he had only graduated from his 12th grade, due to his dedication and hard work, he got promoted through his time there and retired as the Deputy Chief Mechanical Engineer; a remarkable achievement. He was always present during rescue operations after train derailment and crashes, sacrificing his rest and food.

Appa loved carnatic music, especially that of Ariyakudi Ramanuja Iyengar. He was an avid cassette collector, especially of the stalwarts of the early and mid 90s, and had one of the largest collections that were played all the time in our home. I owe my knowledge of music to all those years growing up listening to them!

He was a fan of old English classics like Benhur, and Shakespearean poetry, which he used to recite with ease. His favourite two lines were from the Hamlet “neither a borrower nor a lender be, for loan oft loses both itself and friend”. He lived by this too and always gave away money to those in need without keeping track or expecting it to be returned.

Appa was an avid boom-box collector! He had one to pay the Vishnu Sahasranamam, another one to play Ariyakudi, another one for FM, a walkman for his terrace walks and so on.

Appa loved dogs, which I got to know only when he moved into Auroville. He shared a special relationship with Julie, and made sure that her biscuit container was never empty. Julie sat in front of our house for many days after Appa passed away.

During his last few months, Appa suffered a lot both in his physical body and mind. But, he was constantly in prayer – reciting 'Raghupati Rāghava Rājārām Patīta Pāvana Sītārām' and always saying “I am doing well. I have no complaints. Everyone around me is taking very good care of me. Stay blessed.” When he once had a bad fall, he started chanting 'Srī Ganeśa Pāhimām. Jai Ganeśa Rakṣamām' even while still on the floor bleeding! And continued on for the next few days. Over the last few years, I received the wonderful gift of being able to experience his strength and devotion.

Appa, I feel so grateful for being born to you and hope to live by the values that you embodied. 

I know that you are in a good place now. And here’s wishing you a peaceful onward journey!

Autistic Me - My two-year long assessment journey

I have written this post more like a timeline of events across 3+ years. Writing this, also helped me put things together for my own sequential understanding. 

It was indeed a period of intense struggle. I was quite literally in survival mode, and went through phases of darkness, helplessness, tearfulness and often wept and wailed. But for the most part, I was cheerful, grateful for all the blessings in my life and for the presence of and the incredible love and care I received from close family and friends. My life was graced with a Divine Presence, which I always felt held and carried by. I didn't feel so much like walking through a long dark tunnel, but more like rowing a boat through a long meandering river surrounded by a lot of beauty and seeing dawn at the end of that journey. 

***  

Jan 2021. My signs of compromised cognition started showing up once again. Let me give you an overview of my signs for now.

My compromised cognition usually becomes noticeable when I start feeling unsafe driving my scooty on the Auroville roads, which are often close to empty. Even a single vehicle approaching me from a distance makes me anxious, as I cannot properly gauge the distance or speed of the vehicle. I feel mentally exhausted after a trip to the supermarket. I start dreading running into anyone and having a conversation, however much I love them. I start dreading phone calls. I like to stay in a dark, sound-proof room. I begin wanting to take short naps during the day. Reading any text or listening to any music becomes very effortful and exhausting. Sequencing and prioritising everyday tasks takes a lot more effort and focus. These are the early signs of burnout.

But because of my life context in 2021 which involved a lot of care-giving, anchoring logistics, playing my social roles (coordinating, anchoring initiatives that I started), teaching chanting classes, etc. I kept pushing through these early signs feeling a sense of bravado telling myself ‘Yay, I could do it!’

But over time, my signs kept only getting worse and I was forced to fully step back from all my social roles. I couldn’t ride. I couldn’t meet anyone. I needed a lot more naps throughout the day. Every nap would give me an hour or two (max) of staying functional when I would scramble and get through my basic to-do list. I would sometimes lock myself in a darkened room for hours together feeling very chaotic in my head. I was unable to read even a single paragraph of text without the letters and words jumping around. I was unable to listen to any sound, forget music. I dreaded stepping out. Sequencing and prioritising tasks became even more confusing. And all these brought a lot of tearfulness. And helplessness, for there wasn’t any pesticide spraying happening at all that year. So, I had no clue what was going on. 

Jun 2022. I found a psychology clinic (suggested by someone I knew) for a formal diagnosis that could be done online. I spent a couple of hours giving my mental health history, answering long questionnaires. And the report that came out said I had bipolar disorder and severe depression. Neither resonated with me. When I shared the report with close family, it didn’t resonate with any of them either. So, I abandoned this diagnosis.

Jul 2022. That is when I came across a facebook post by a dear old friend, that she had recently been identified as autistic and that she was in ‘autistic burnout’. My curiosity and concern about her condition got me googling the term. Bingo! This was it!! I started reading loads of reports, personal stories of people from across the world to verify and re-verify my self-identification to cure my own disbelief. I read it all one para at a time, for that's all I could manage. And I was convinced I was autistic. But no one else around me would believe me, quite understandably so. I wanted to get formally identified, primarily for my family and friends to believe me and secondarily, for my own validation.

Aug 2022. I met with Dr. S, the psychiatrist at the mental health unit of Auroville and told him my history, current symptoms and my recent discovery about ‘autistic burnout’. I was met with disbelief

“You don’t look autistic. You are so articulate. It is perhaps some deep-seated trauma that is leading to these symptoms. Are you open to going through therapy?”

“I can speak to therapists all you want me to! But I really don’t think it’s the trauma thing. I am generally cheerful and looking forward to life, except for my difficulty with cognition and sensory issues. Can we please begin with some medication? I used to take escitalopram, which has worked for me in the past.”

And he agreed to begin with that, and I started with a low dosage of 5 mg per day and slowly worked up to 20 and have now reduced it to 10.

Slowly, my functionality got somewhat restored. My basic functional window opened up from 1 to about 3 hours a day, when I’d have to take care of all my daily tasks. Still no music, reading or meeting people.

Sep 2022. I started consulting online with a homeopath Dr. P, for my peri-menopausal issues, who ended up also taking my mental health history (since in this approach, mind and body are acknowledged as being closely related, and rightfully so). He suspected encephalopathy and asked me to get an EEG & MRI scan of the brain done. Both came out normal.

Nov 2022. I had found out that earmuffs might help my condition and went ahead and got myself a pair. That was life-changing to put it mildly. I could actually start stepping out a bit more without the sounds overwhelming me. I especially needed them first thing after I woke up in the mornings, for I found bird sounds to be unbearable. It must have to do with the sound frequency. For a long time, I wore my earmuffs all through the day, indoors, outdoors, eating, cooking, cleaning… all the time except when I was bathing or sleeping! They have been my life-saver.

Jan 2023. Spent three days undergoing a series of assessments at NIMHANS in Bangalore. Neurologist ruled out any neurological issues. With my compromised cognition, I had to endure long questionnaires and psychology assessments lasting several hours at a stretch. Since I had shared with them my autism self-identification upfront, they did an autism screening too. But the questionnaire was very male-child centric and so outdated. It had a lot of irrelevant questions for me. Like “Do you run aroud the room flapping your hands?”. No, I don’t.

Apr 2023. The assessment report said NYD (Not Yet Diagnosed). The doctors asked me to get admitted for a few weeks for further observation and assessment, which I was in no state of attempting. The report said that I had autistic traits from some deep-seated trauma, but was not autistic.

I spent all of this year struggling through perimenopausal menorrhagia (excessive bleeding), three successive anaesthetic procedures in the OT, caring for my father with his worsening dementia, and my own severe burnout. And all the other stuff. But since I could read a bit better, I joined a few peer-support-groups on facebook, and read hundreds of stories there and elsewhere of late-identified adults. Every story I read provided more relief, made me more convinced and also explained many parts of my life that had always remained a mystery to me and my dear ones.

Jul 2023. I approached Action for Autism (AFA) in Delhi and paid up for their assessment process. As a first step, my close family (who have known me as a child and as an adult) and I had to fill up long questionnaires about my behaviours and traits. After that, I had to wait for five months for my first of the series of assessment calls.

Jan – Jun 2024. Over a period of 6 months, Dr. NS from AFA spent close to 20 hours on phone calls with me, my mother, sister, husband and bestie to understand me both as a child and as an adult. It was a very thorough assessment, which looked at my life from various perspectives. In the final call, Dr. NS said “Congratulations! You are absolutely right. You are autistic.” And her written report said “As per the Asperger's Diagnostic Scale, a total score of 64 or higher is consistent with the diagnosis of autism. Sangeetha received a total score of 176.” So, I was not just autistic. I was severely autistic. It took me a while to make sense of that.

So, this was what my assessment journey was like. Quite long-drawn out, but also satisfyingly thorough! Frustrating, but also fascinating! I got to learn so much about the mental health space in India, something I had never paid any attention to.

I am going to follow this up with a post answering the important FAQ: Is diagnosis necessary for everyone? Is there a way for someone to self-identify as being autistic, without going through a formal assessment process?

Here is my answer in short: No. Formal identification is not necessary for everyone. And yes, there are ways to self-identify fairly precisely if someone is autistic without going through a formal process. Will share in my next post.

Other related detailed posts to expect in this series..

My views on & experience with Medication

Difference between Being Autistic & Having Autism Traits as a Trauma-Response

Autistic Burnout

Asperger’s Assessment & Identification Landscape in India

My many mysteries of life explained by my Autistic identification

What does it mean to be severely autistic?

Stay tuned…

Autistic Me - Introduction to Blog Series

As I got into yet another episode of cognition impairment around June 2021 (which was the subject of my last post in May 2020), I started looking around for pesticide spraying around me. Since there wasn’t any spraying reported, I was confused and left clueless again. That is when I came across a facebook post by a dear old friend, that she had recently been identified as autistic and that she was in ‘autistic burnout’. My curiosity and concern about her condition got me googling the term. Bingo! Every symptom matched my own during all the previous episodes and the current one, of cognition impairment, to the very last detail! I started reading loads of reports, personal stories of people from across the world to verify several rounds, to cure my own disbelief. And I was convinced I was autistic, but initially most people around me would not believe me, quite understandably so.

After that, I went through a two-year long assessment journey to get formally identified by a registered psychologist. I personally led and drove the process with support from close family. I have been identified as being severely autistic. This specific manifestation is called High-Functioning Autism or Asperger’s Syndrome.

The reason I would like to write on this topic is four-fold.

One, for my close friends and family. Sharing about my journey in writing can help us skip the basic FAQs and dive deeper in our conversations, for those interested.

Two, for everyone out there who is suffering from autistic burnout without proper diagnosis! There are so many adults like me who are high-functioning and hence not identified as autistic when younger. We can make eye-contact, articulate our thoughts quite well, be socially not too awkward, are above-average intelligent, etc. But since we end up using our brain for the purposes and in ways that are very different from what they have been designed for, we keep getting into burnouts which almost always get misdiagnosed as depression, which they are not. And hence never addressed. We are traumatised from being told “you have some deep trauma you need to get in touch with” all our lives! (I have so much to share about my discoveries around trauma and trauma work! :) I hope to be able to contribute to a better understanding about this condition for those who might be in it, so that they are able to find the right kind of help.

Three, for the larger human collective. The autistic brain is a fascinating one that is blessed with gifts that the world really urgently needs today. It is imperative that we recognise and acknowledge people blessed with this kind of brain, so that autistic people are freed up from old paradigm roles, and the drive to “train us to fit us into the mainstream”. If we can collectively recognise another kind of role that we need more people to play, then perhaps Life itself can travel up the evolutionary spiral quicker, and save itself from the impending catastrophe. This doesn’t make us super-humans. Like we are gifted in some ways, we are also limited and challenged in some other ways, and need to learn many things others are adept at. But with proper understanding about how our brains are wired, it is possible to do this without fear, stress, shame and guilt. It is possible to do this while we embrace and celebrate ourselves for who we are!

Finally, for myself. I have gathered so much knowledge and experience on this topic that I am beginning to feel burdened holding it all in my head. Since writing is part of my swadharma, I feel the need to put them all down somewhere, irrespective of how many actually read it.

Over the past two years, from close family members to strangers (in context) with whom I have shared that I am autistic, have responded with different questions and comments. I plan to explore each of them in a separate post. Here is a sample.

* But you are so articulate, and have so much work to show. You cannot be autistic.

* What does autistic burnout look like? What are your symptoms?

* (I’ve been on medication.) Isn’t medication addictive? Does it not have side effects? You need to try alternatives to get out of your medication, asap!

* You have been working too much, thinking too much about everything in this world, processing too much information. And that’s mostly why you’ve developed this condition, whatever the label.

* Why label anything? Why limit yourself with this label, even if it is true?

* Maybe you are mildly autistic, if at all. And I’m sure you will recover with proper treatment.

* Everybody is possibly somewhere on the Autism Spectrum. Now that I think about it, I possibly have many of your signs, symptoms and behaviours too!

* You are not autistic. You might have some autistic traits, from some unresolved trauma lodged in your system.

* Have you tried yoga, pranayama and meditation?  

Disclaimer: High-functioning Autism / Asperger's Syndrome shows up very differently in different people. I don’t claim to understand the condition itself fully. It has taken me two years to understand only one person, i.e. myself, through this new lens. And perhaps a few others through conversations. So, whatever I write cannot be generalised to the entire autistic population.

Apology: While I am happy to receive emails and comments, my ability to respond depends on my condition and also the number of messages I receive. So, please do not take my non-response personally. And also, my posts may not be very coherent, because of my cognition impairment. But I am going to embrace this and write anyways, and perhaps have it edited by someone at some point later, if needed.

Poison, stupidity and schooling!

In February 2018, my brain went haywire! I wasn't able to think clearly. Even melodious music sounded like cacophony. I was unable to do simple tasks at home, step out on the road or process oncoming traffic information, have conversations in groups, process auditory inputs from the phone or any electronic devices. Many many days, I touched madness, shut myself up in a dark room and wept. I was completely home-bound for months.

Having no clue what it was about, I tried many things like chanting, meditation, singing, anti-depressants, time in nature, homeopathy and so on. Nothing really worked. Or may be all of them together worked over time! By October that year, my mind started clearing up and I became normal and resumed life. I attributed all kinds of fancy and divine interventions to this episode and left it at that.

In February 2019, there was a relapse of the exact same condition. This time, though there was familiarity from the previous year, it was just as bad. I went in for sound-based healing called Tomatis along with plenty of rest. This time, I took to cooking at home, which helped me quite a bit. (My healing with the kitchen is another story by itself, for another time). Around October, things started clearing up once again and gradually, I became more functional and resumed life, attributing the healing to Tomatis.

In February 2020, there was a relapse of the exact same condition for the third year in a row. I stopped to see what else happened around this time. This can't be just coincidence! Is it some planetary re-alignment, seasonal change or what? And discovered the cause: extensive pesticide spraying in cashew farms all around Auroville. For those who are not familiar with Auroville, it is not a contiguous piece of land. There are lands that are not part of Auroville right in its heart and all around. And these lands are 90% pesticide-sprayed cashew farms. The spraying starts in February every year and goes on until May-June.

Recently, I joined a whatsapp group called 'cashew spray alert' where members were posting all kinds of symptoms from headache, nausea, fatigue and dizziness. These chemicals seem to especially affect women, who were perfectly fine until they moved into Auroville and later developed chronic conditions like thryoid issues. After I posted my story on the group, many others started sharing similar conditions. If this is the issue with residents living around, I can't even imagine what must be happening to those who do the spraying and spend time in these farms.

About twenty years ago, during my India travels I saw the crisis facing our agriculture. I also saw thriving biodiverse farms which did not use any chemicals. I was shocked out of my wits! How did humanity buy into the stupidity of accepting 'poisoning itself' to be Science?  I was both furious and amused. I choicelessly jumped headlong into safe-food, farmer-sovereignty activism for many years. After sometime, I felt ready to move on to other things in life. This seems to be a call to me to step in and see how we can transform the situation. Compassionately. Though conversation and collective effort. It is no longer the story of a family in far-away Khasargode. It's come to my doorstep.   

If we think this is an issue concerning agriculture, we're fooling ourselves. This is not even just an environmental issue. This is an issue about our system of education which brainwashes us all into thinking stupidity is cool, especially if it can increase GDP. And if you see this film Our Cashew Story made by a fellow Aurovilian as part of 'The Healthy Cashew Network' of Auroville, farmers do this in spite of knowing that they are being poisoned because it helps them pay their children's school fees. Why do their children need to go to school? To be brainwashed that their culture is backward, that chemicals are here to help humanity, and in order to be good students they should submit to the propaganda machinery and come out with no sense of their own. If they resist being stupefied, they will be punished and labeled as 'failures'. On the one hand we promote schooling, and on the other hand, we activists give our lives wanting to change the world.

If we continue to ask the question "How to convince our farmers to stop spraying?" we are not going anywhere. If we can instead ask "How do we transform our soul-stripping schools into living spaces of learning?" we still have some hope!

Related viewing: Schooling the World; the white man's last burden

Privilege as Commons

The question of privilege has been staring at me most starkly than ever before. As I stay safe and comfortable in my home, I know millions are struggling for their mere survival. “Is this the time for me to stop doing and go inward? Is this the time for me to be out there doing something? What is the most meaningful way of showing up?” is a question that visits me many times every day. 

Talking of questions, I realise that they are of two kinds. The first kind needs to be pursued and answered. The second needs to be eternally lived with as sincerely and honestly as possible. To me, the question of privilege is of the second kind.

After many years of staying with this question, I realise that both feeling guilty / undeserving of my privileges and indulging in them, come from the notion that my privileges somehow belong to me. Whenever I am able to momentarily suspend that notion of a separate self and its ownership of its privileges, and step into the realm of inter-being, they transform into the commons I have been entrusted the stewardship of. My questions momentarily cease to exist. But that space also puts me in touch with tremendous responsibility of every privilege that I have been entrusted with.

Though I hardly stay anchored in this space, when I do touch it, it is both a relief and a call to live a more intense life. A call to be more aware of every moment and how I’m using my privilege to be in service of Life.

The Corona angel who has come down to break the tightly-held structures of fear so that more light can flow in, is calling forth all forms of warriorship to assist her. We need serving warriorship to be out there feeding people and taking care of the sick. We need watchful warriorship to keep track of how the threatened powers-be are tightening their claws in these times, calling out adharma. We need creative warriorship to see what new life-serving possibilities can be manifested. We need warriorship that can keep our essential services running, keeping everything from completely breaking down. And most importantly, we need a warriorship of enquiry “What just crumbled? Why are we in this mess? What is this a call for? What futures lie ahead of us? What are our choices?” and support others through this enquiry.

We have reached a time when, irrespective of whatever warriorship that we each are feeling called to embrace, alongside whatever we are doing, we all need to set aside time for this inevitable enquiry. And those of us who have the luxury of not feeling particularly called to be active warriors on the field, have the greatest responsibility of not indulging our privilege of time and comfort. If we can see our privilege as the commons, then on behalf of the collective, can we hold with the greatest intensity this question and prayer for healing, and birthing the New life? And calling forth and engaging with our own inner demons of lethargy, doubt, fear, insecurity, resentment, inadequacy and so on, cleansing our bodies (the physical, emotional and mental bodies) is an important part of that sacred work.

How peacefully I can sleep at night is usually my litmus test for how responsibly I have used my privilege and acted on behalf of the collective. And peaceful sleep is not easy to come by these days!

Related Posts: Right here, right now
                        It's another wasted day!

Related Reading: On 'Frequency Holders' by Eckhart Tolle

Women, take charge!

Corona has come to tell us many things. One of them is that it’s time more men stepped back from political leadership en-masse, took over home-making and child care (leadership roles in the home front) and let more women take on political leadership. I neither see this as a feminist statement, nor am I saying that women are better leaders than men. What I’m saying is this. We need well-integrated human beings to lead the world today. And at this time in history, more women have undoubtedly learnt to own their femininity and integrate their masculinity, than men who have learnt to own their masculinity and integrate their femininity. Look at these powerful young women political leaders who are changing the game with their power, grace, compassion, intelligence and diligence!

45-year old Katie Porter grew up in a small farming community in Iowa. She went to Yale where she majored in American studies, and did her undergraduate thesis on The Effects of Corporate Farming on Rural Community. Now as a congresswoman from the democratic party in the Orange County, she knows her stuff and is tough with corporate heads (Wells Fargo, Facebook), Food Stamping Admin, often rendering them speechless or consenting to cooperate with her reasonable, people-friendly demands.

31-year old spanish-speaking Alexandria Ocasio-Cortez, is the youngest woman ever to serve in the US Congress. As a bartender and waitress before she took office, she was struggling to pay back her student loan. A personal situation where she saw from up-close how attorneys ripped families who were clueless about bureaucracy, and interning with a US senator were her training grounds. She is a big champion of the Green New Deal and a sprightly youth who loves dancing and connects to the aspirations and struggles of millennials.

40-year old New Zealand Prime Minister Jacinda Ardern has served in the Labour Party from the age of 17, and eventually got elected as PM in 2018. The world is paying attention to Jacinda’s well-being budget, critique of capitalism and economic growth, and her close association with the Green Party and the indigenous Maori people. The most fascinating part was her announcement of her pregnancy, going on maternity leave, being the second female world leader (after Benazir Bhutto) to birth a baby while in office. It’s a joy to watch her beautifully embrace motherhood, bringing her baby to the UN General Assembly, with her spouse Gayford being a full-time, wholehearted caretaker. And I have much to say on this last point.

I see all around me, powerful women with such leadership potential, stuck at home in their kitchens. Now, this is not a judgment about home-making, kitchen or care work. They are highly responsible, special, honourable, irreplaceable roles. I love every bit of it myself. But only as long as it’s a choice. And civilisationally speaking, at this time of chaos and crisis which I know more women leaders can better respond to, what are we doing still only “supporting women” to work overtime in social roles, after they have cooked, cleaned and put their children to sleep? We should no longer be merely supporting women or asking for women representation. Women leaders need to be groomed and pleaded to lead.

Here is a brilliant talk by Alexis Kanda who is doing exactly this. As a woman, I deeply resonated with our conditioning that we were not made to be social / political leaders. It is hard-wired, and probably for a reason. In earlier times in history, women’s role was limited to the home, grooming and educating their children, of course exceptionally taking on social roles. Genders were probably wired that way back then to serve that context. But today’s times when patriarchy has wreaked havoc leading us all to such a mess, we need to urgently rewire ourselves as a society. It may not be easy for both men and women to wake up to this urgent need. In spite of decades of having engaged with that voice within myself and enormous support all around me, I still slip into that disempowering narrative. But it needs to be done.

When all the male Gods tried and failed at subduing Mahishasura, they finally turned to Durga, the invincible Goddess, who after a 10-day long battle, subdued the demon. This is clearly the time for Durga to take charge.

Related post: Letting the feminine lead the way