Autism Unmasked: From Uneasy Upbringing to Adult Diagnosis

Autism Unmasked: From Uneasy Upbringing to Adult Diagnosis 150 150 Liana (Li) Rodriguez

During my childhood, I became aware that I struggled to communicate in ways that led to mixed messages, one-sided conversations, crossed-up body language and questioning. I thought I was doing something terribly wrong with the way I talk or socialize with my peers, whether it was with my family or in public. Moreover, some people told me that I needed to either relax my body or engage more in small-talk, instead of sharing long-winded topics such as the weather forecast, maps or bus schedules. Then came the teasing, and at times bullying, just because I was unlike everybody else. Soon after, I ended up expressing myself with the people who I felt I can relate to and trust the most, learning ways how to be a “well-behaved” peer without confrontation.

In reference to the blog post from October 2021, I received a differential diagnosis of Pervasive Developmental Disorder (PDD) at age 5, with little knowledge that I expressed some autistic-like characteristics. My parents were made aware by a few educators that I had the potential to thrive academically, however concerns were raised about achieving beyond that, particularly in the areas of personal and social development. By the time I was 28, I had survived academia with few supports. However, similar to some late diagnosed folks on the Autism Spectrum, I was hesitant to seek help when I experienced burnout, depression, anxiety and panic. I eventually received an official Autism diagnosis soon after crawling out of a complexed situation that impacted living autonomously, executive functioning and socializing with the guidance of a childhood friend and former classmate. Executive functioning is a term which describes a person’s ability to make decisions on a task, act and apply them effectively without being overwhelmed.

In this post, I will expand on my academic and social experiences to explain how I appeared to hide certain autistic traits from view, which at first glance were undesirable behaviors to express back then. Afterwards, I’ll share my thoughts on what brought me to hit rock bottom before reflecting on how that situation unmasked my authenticity, using the social and communication skills I have since acquired and adapted. My neurodiversity journey of being an autistic person before and after the diagnosis later as an adult is expressed below.

When I shuffled between four elementary schools, the Montreal Children’s Hospital Day Treatment Centre and the Douglas Hospital Finley Pavilion in a nine-year period, I vividly remembered what got me into plenty conflicts. Through stimming, making indirect eye contact, wandering off, having difficulty with pronunciation and repeating the last word someone said (echolalia), one educator then recommended other ways to apply appropriate communication skills. Also, I was granted certain accommodations at school (like doing an exam in a separate room alone or in a small group setting) as a result until I entered the post-secondary level. Going further, I struggled to notice and apply proper societal etiquettes, behaviours and milestones as someone assigned male at birth who intuitively presented with a feminine-leaning body language and social communication style. I ended up teased by some students and misunderstood by several staff members, including in university, due to my atypical expression as a human being. Ironically, I often had friendlier connections with my elders (often educators, lunch monitors or bus drivers)compared to with my peers near or at my age level.

When I was 11, I adapted my ability to express appropriate actions through learning from some peers and educators who I related to and learned from, cherishing valuable social moments with very well. Few became longtime friends and some were acquaintances – most of them assigned female at birth. I often move my hands while speaking, offer a two-cheek kiss(customary in Québec culture) or a hug, love to dance when in the mood to, and try to smile or laugh at appropriate times. Being a person sometimes blind to flattery, jokes or flirting, I also applied every strategy I learned of to sidestep physical confrontations that led to verbal disassociation or non-verbal meltdown. Such actions included ignoring the intimidator (or bully), talking myself out of an uncomfortable situation or appear uninterested.

I coped my way through the integration approach in academia. This was an education model where children with various learning styles or developmental difficulties were offered more attention and assistance from a specialized educator in a small classroom setting or a resource room. Once the student adapted well on their personal and social developmental needs along with strengthening their educational performance, they gradually move into a standard classroom size with the rest of the community with fewer supports. Even though I found success through this model and did very well academically, I appeared awkward, experienced social rejection and avoidance by certain people in social situations. This was common by the age of 17, when I tried to connect with someone I really liked as the sensory overload brought forth signs of stress. It was challenging for me to tone down the internal chatter building after such a situation, making me feel bottled up emotionally. After taking part in the Student Leadership Program at the tail-end of my high school years, I figured out how some people presented themselves to be socially accepted and able to assert their communication skills. This program did help me learn how to adopt these aspects; however, I experienced a personal setback at the Grad Dinner and Dance (or Prom) when I struggled to maintain my composure. I like to take a camera to special school events and take pictures as I enjoy building my photo album memories. However, my family tried to discourage me from bringing the camera, causing me lots of discomfort with little understanding of the reason provided. Once I got to the event at a banquet hall in downtown Montreal, I was already feeling withdrawn socially, trying to hide the unhappiness in my body language – with very few photos captured. I hardly chatted with my peers, uncomfortable in my outfit, with no date nor chaperone. After two hours there, I left and strolled alone in the nearby streets before one of my parents came to get me. What was thought of then in 1998 as depression and anxiety were also signs of autism in disguise, thought of as undesirable autistic-like traits in a neurotypical sense.

Fast forward to late 2007, when I was a graduate-level student striving to become an urban planner in Toronto while trying to live autonomously in an on-campus apartment through tight financial means. My social support network – like my family – was either distant or very small, with a few people to turn to when I experienced a rough patch. Expressing my academic needs to some faculty members was further complicated when certain students used microaggressions toward me or behind my back. I was also at odds of showing my capability to provide a graduate studies proposal where my academic advisor and I were unable to agree on my insistence to include transportation as a focused subject. Then I was summoned by members of the Student Association in the faculty to answer several uncomfortable questions about my intentions as a former elected member – criticizing on my ability to communicate publicly. I was terrified by the encounter when I decided to set the record straight in confidence about how I navigated my university studies with a diagnosed medical condition. Being subjected to assumed biases or stereotyping about mental health is one thing. Having had to explain myself to a larger group of people accompanied by sensory overload and executive functioning difficulties was exhausting and draining. As a result of these situations and disappointments combined – including being turned down for an internship, I became isolated and felt devalued, struggling to concentrate toward completing the semester, hardly reaching out for assistance. Then I broke down into tears in my apartment unit, banging my head into the computer desk and unable to effectively cope with a heart aching pull like a rib being pulled. Overwhelmed, exhausted and burnt out, I contacted my first psychiatrist for health advice which led to a medical leave of absence from studying to stabilize the intense anxiety experienced. I soon after reconnected with an old childhood friend – Todd Simkover, –whom in making reference to his own lived experiences on the spectrum informed me during a phone conversation that the challenges I described appeared to be associated with autism. This point was further backed up by his recollections of me from being classmates back in Montreal. The discussion led me to a new direction for me to seek and rebuild my capability of being a highly educated person and a medical evaluation for an Autism Spectrum diagnosis – confirmed October 2008. I would return to Montreal without regrets of departing graduate studies where I was able to rehabilitate my personal needs and mental wellness while obtaining employment unrelated to my educational study field.

Looking back as a human being on the Autism Spectrum before and after the diagnosis, it was evident that the strategies adopted to express myself like some neurotypical people aided my ability to live better. However, there were moments when I had a hiccup in public when communicating with someone and risked being in a situation that may hinder my ability to live autonomously. Thus, the appearance that I am a capable person like most people becomes uncertain when an outburst that is socially unacceptable is being evaluated in coherence with policies that have to be respected. It’s moments like these when the “mask” falls off, then I appear as a distraught soul in crisis or defensive. This was the case in 2021, as I experienced a breakdown in my ability to function on the job – the second time in four years. At that time, I had difficulty managing my executive functioning skills while overloaded in worry and fear about getting the task done. I was concerned whether I could still be acknowledged as a valuable worker being a transfeminine person on the Autism Spectrum with an overlapping mental health condition [anxiety]. Thankfully, I was directed to an employee assistance program for guidance and took steps to recognize the situations in the workplace that led to these unsettling triggers. From there, I connected with my Wellness Team to discuss my strengths as a worker and what accommodations can be applied for improving my well-being. With the support of a different psychiatrist, a psychologist, and a sexologist, we then notified the employer about my dual diagnoses. Between each other, we produced some ways of how to get certain tasks done on my own pace while being able to meet their goals. A year later, I transferred departments as a way of easing the sensory load and develop certain untapped skills. This decision was encouraging for my autonomous living experience after some managers learned of my ability to reach out to customers in situations when a sense of leadership and collaboration gets the job done.

To conclude, many autistic people including myself have a neurodevelopmental sense of how they view and live their life in their version of the world. At the same time, much of society perceives how some of us on the Autism Spectrum appear to struggle to make it each and every day. I feel that my upbringing was uneasy – regardless of what diagnostic label or code I was assigned – where being me was challenging to recognize from the inside out. I questioned my authenticity and personality before realizing my epiphany in this life as I feel inspired to share my story of being someone with Autism through life. I recognize the importance as a neurodivergent person to express my voice in self-advocacy and provide an opportunity to reach out to an audience seeking for a unique autistic experience through an intersectional lens.

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Liana (Li) Rodriguez

Liana (Li) Rodriguez (she/her, they/them) is a multidisciplinary creative artist, Autism Spectrum self-advocate and culturally-diverse person of non-binary, transfeminine experience. Li’s upbringing was exemplary, officially receiving an Autism Spectrum diagnosis at age 29 even though visible signs of some autistic-like features were noted in early childhood. Despite enduring significant and prolonged anxiety and depression due to unique struggles managing autism and gender incongruence, Li persevered academically, obtaining a Creative Arts college diploma and a Bachelor of Arts degree in Urban Planning. Liana became deeply active in autism self-advocacy not long after the autism diagnosis, networking within the autistic community at conferences, with non-profit organizations and online with several advocates. Li is currently developing a documentary video and a forthcoming book publication on life and inspiration being authentic as an autistic person. Liana’s spare time consists of outdoor strolls, bicycling, dancing, swimming and playing some video games.

All stories by : Liana (Li) Rodriguez

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