Abstract
Loud, angry chirps and the sound of an empty bowl falling to the bottom of the cage wake me up as I fumble to reach for my phone. I force my bleary eyes to focus on the phone screen. Half past seven it reads. I sit up bolt upright and rush to get ready and prepare breakfast for my bird as I contemplate the possibility of reaching my university on time dwindling with each passing moment.
At exactly half past eight, I grab my handbag and a water bottle from the dining table and rush out of my house. I can feel my heart pounding as I narrowly escape being run over by oncoming traffic on my way to the metro station. Once inside, I am overwhelmed by the cacophony of morning commuters. I frantically search for and fish out my noise cancellation headphones as I settle into the reserved ladies’ seat in Delhi Metro.
After a 2-hour commute that feels like an eternity to me, I finally reach the metro station nearest to my university. I exit the metro station to be greeted by a deluge of sights and sounds from everyday commuters, street food vendors, and the loud honking of impatient car drivers stuck in traffic. This cacophony of diverse sensory inputs threatens to overwhelm me as I focus my attention on crossing the busy road outside my university. I barely manage to escape being run over by a bus as I manage to cross the road to enter the university premises.
Once inside, I quickly make my way to the Department of Management Studies and heave a sigh of relief as I put my handbag on my desk. My attention goes to the Christmas card stuck to the pinboard at my workstation. It was given to me by H, my co-scholar, last Christmas. H made hand-painted cards describing each of his co-scholar’s peculiar traits. While he described our co-scholar A as childlike, R as a foodie, and S as a sass queen, he described me as weird.
I mentally grimace as I reach my hand out to touch the card and feel the texture of the five embossed letters “WEIRD” under my fingers. A deluge of emotions, predominantly anger and sadness, threatens to overwhelm me as I recall the many instances from childhood to adulthood when people close to me, including friends, family, and teachers, used this word to describe me.
My reverie is broken as harsh footsteps in the alley outside my room bring me back to the present. H enters the scholar room and hollers at me. I put on my best normal face and exchange pleasantries with him, taking care to keep my tone polite and friendly. I get back to my workstation and open my laptop to resume work on my PhD research topic of mindfulness at the workplace.
I immerse myself in reviewing the relevant literature for the next hour. I become so engrossed in my research that I don’t seem to notice when H asks me to stop shaking my legs as it’s distracting him. I mumble an apology to him and get up to have a sip of water. As I settle back into my workstation, my mind starts to wander, and I find it difficult to refocus on my research work.
I decide to break the monotony of work. I open my social media account in a new tab on my laptop and begin scrolling through it. As I distractedly scroll through my Facebook account, I ruminate over my close call with the bus while en route to university in the morning and how disastrous the outcome could have been for me in a parallel universe. I open another tab and Google “Why do I find it difficult to cross the road?” In less than a second, Google comes up with a billion answers to my question. I scroll through the long list of search results, but nothing really resonates with me until I stumble upon a blog post on autistic women and their difficulties navigating busy roads. My curiosity piques as I read through the blog post. I click on one of the links to a book titled Aspergirls. I spend the next few hours reading the book and gasping with disbelief at the many similarities between my personality traits and Asperger’s women.
Like most fellow Indians, I have a very rudimentary understanding of autism spectrum disorders. Up until that moment, I never entertained the possibility that I too could be autistic. I recall an instance from many years ago when I was referred to a government-run physiotherapy and occupational therapy clinic for treatment of a slipped disc injury. While I was getting treatment for my physical ailment there, I came across another patient, a child of about 10 years old, who had an unusual gait and would cry out loud, bang his head on the clinic walls, or shout at the nurses for even minor inconveniences to him during his physical therapy. His mother revealed to me that he was autistic and expressed worry over his bleak future and educational prospects as very few Indian schools are equipped or willing to admit a special needs child. I can’t help but compare the stark contrast of my life as a seemingly “normal”, academically “gifted” Doctoral Researcher with that of the autistic child I met in the occupational therapy clinic.
Yet again, my reverie is broken by another co-scholar of mine, R, who unbeknownst to me has quietly walked up behind me and started reading through the blog on autistic women. I can barely hide my embarrassment at the open search tab on my laptop as I fumble to shut it. R is from the Punjabi/Sikh community with a boisterous and exuberant personality. He often uses humor to deflect from emotionally charged situations. Sensing my discomfort as I look at him with pleading eyes, he guffaws loudly and offers me a slice of pizza that he’d just ordered. I feel a deep sense of gratitude toward him as he seems to understand my predicament silently. Instead of probing me further regarding the article on Asperger’s women, he spends the next few minutes engaging in lighthearted banter with me.
After wrapping up my research and teaching responsibilities for the day, I brace myself to once again endure the 2-hour-long commute on Delhi Metro back to my home. However, taking the metro in the evening time affords me the small mercy of not having to deal with a rush of commuters. The space and relative anonymity of commuting with strangers allow me the opportunity to once again pull out my laptop and browse through the plethora of information on autism spectrum disorders. The next 2 hours of my commute back home seem to go by in a flash as I read through articles on stimming behaviors and draw parallels between autistic stimming and my “oddly” soothing habit of shaking my legs and chewing on my lower lip whenever I am faced with a stressful situation. I also chance upon blog posts from autistic authors who have suffered from autistic burnout. As I read through the symptoms of autistic burnout, the mysterious physical ailments that made me unable to function and forced me to drop one semester during my MBA start making sense to me.
Once back home, I unwind by getting into my soft satin pj’s and having a quiet meal in my room. As I lie down in my bed to sleep, I ruminate over the events of the day. I spend my time tossing and turning as I recall the many small and big moments in my life where I found myself overwhelmed and unable to fit into the stereotypical role of a “normal” Indian woman. I learned to playact my way through all these situations. However, pretending to be someone I was not to fit into the societal mold of “normal” behavior left me feeling empty and drained over the years. It also made me feel like I was somehow defective or less than the other women who seemed to effortlessly conform to their traditional gender roles as dictated by Indian sociocultural norms.
The confusion and bewilderment of nighttime ruminations are replaced by the stark clarity of my thoughts the next morning. The realization that I am autistic (and had most likely always been autistic) dawns upon me with the crystal clarity of the clear blue skies visible from my apartment window.
Over the next few days, I find myself grappling with a deep sense of loss for the life that I could have lived if I were “normal” coupled with intense fear and shame as I attempted to navigate a toxic work environment and an emotionally abusive supervisor while keeping my autistic identity hidden from my supervisors and colleagues. However, my strong sense of justice and deep sense of responsibility toward myself and other autistic women who might find themselves in a similar predicament force me to change the entire trajectory of my PhD research. I abandon my research on mindfulness to fully immerse myself into researching the lived experiences of late-diagnosed autistic Indian adults who have been at the receiving end of bullying, harassment, and unwarranted hatred because of their variant neurology.
Through the course of my PhD research, I get in touch with exceptional autistic Indians, each with their own unique tale of the myriad challenges they face in their personal and professional lives and their journey toward self-diagnosis through a broken system. One such story belongs to my childhood friend who, despite her double master’s degree and exceptional knowledge of geoinformatics, still struggles to retain her job because of sensory issues. Yet another autistic acquaintance recalls having to hide his autistic identity at the workplace for fear of losing his job. Listening to these experiences prompts me to focus my PhD research on examining the lived experiences of late-diagnosed autistic women in India, the efficacy of workplace accommodation strategies that allows autistic individuals to work remotely, stimming behaviors of autistic employees, and Indian managers’ perspectives on employing neurodiverse talent in Indian business organizations.
Although my research ideas are praised by many acclaimed academicians at national and international conferences, I struggle to gain the same acceptance and support from my non-autistic PhD supervisors. My research ideas are labeled “too novel” and “not practically feasible” by them as they threaten to stop my PhD funding. Additionally, my fear of being labeled crazy by my ignorant supervisors further prevents me from revealing to them that my insights into the autistic experience come from my own lived experience as an autistic adult.
I find the next few months to be extremely emotionally taxing as the hostile attitude of my PhD supervisors, coupled with the countless rejections of my research manuscripts from acclaimed international journals in the field of autism research, plunges me into a year of self-doubt and depression. Until one cold, foggy November morning, when I refresh my email to see an acceptance letter from a globally acclaimed journal for my research paper “‘I wish they’d just let us be’ experiences of Indian autistic individuals around stimming behaviors at the workplace.” 1 I feel like life has come full circle for me at that moment, and my silent crusade to fight for the rights of autistic individuals has not been for nothing.
This small yet significant win proved to be a silver lining through the dense cloud of uncertainty and self-doubt that had been plaguing me the past year. I realize that my foray into autism research gives me an incredible opportunity to not only make sense of my own life experiences, which were equal parts isolating and painful, but also use my experiences to advocate for the rights of other autistic Indians. In doing so I envision a place for autistic academicians in Indian universities wherein they no longer fear ostracization or job loss because of their divergent neurology.