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.
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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 flap 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…
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