My journey to being diagnosed with autism at 32

“Don’t you feel lonely living in your own little world?”
She whispered: “Don’t you feel powerless living in other people’s world?”
– F.G.

Part 1

I’m on the couch, watching an Instagram reel of Holly Madison. She’s a former Playboy Bunny, model, and actress. You may recognize her from the movie, The House Bunny. She’s talking about her recent autism diagnosis at the age of 43.

In the interview, Holly revealed: “I had been suspicious of it for a while. I always kind of had trouble socially, not recognizing social cues, not picking up on things the same way other people did. But I just made excuses for it. I was never somebody who was really well liked in all different situations.”

She continues, “I think because I’m more quiet, I’ve only recently learned to make eye contact and I’m often off in my own thoughts, so people take that as offensive… I’m just not on the same social wavelength as other people. I wanted to get diagnosed because I always had a hard time connecting with others.”

As Holly carries on with the interview and reveals more and more about her internal and social struggles, I turn to my husband Tyler and say, “I do all of these things.”

He laughs it off and responds, “You’re not autistic.”

I say, “Yeah, probably.”

I text my best friend, who’s a nurse and has worked extensively with children (and adults) with disabilities: “You don’t have autism, you’re just introverted.”

Yet, I can’t stop thinking about this video. There’s a visceral gut feeling I get from this short clip. I don’t get these emotional reactions often — I tend to live my life based on logic and reason. I think with my brain not my heart. But there’s something here. There’s truth in her experience that overlaps with mine. So naturally, I start obsessing.

I get off the couch and grab my laptop. I look up articles of other women who were diagnosed with autism later in life, I pursue Reddit threads looking for confirmation of my symptoms, I watch videos, I order books… lots of books. I take quizzes online. Results: strong indication of neurodivergence. High likelihood of being on the spectrum.

My world view begins to blur. How does everything suddenly make sense, but is still just as confusing? How did nobody catch this? How did my therapists not know? How did I myself not think of it after all these years? Two of the people who know me best, shrugged me off immediately. Was I that good at hiding it? Maybe it’s not autism after all? Still unsure, I keep this newfound information to myself.

I always blamed myself for not being able to fit into the world comfortably. Caulked it up as a personal failure, constantly feeling uneasy in my own mind and body. There seemed to be something inherently flawed about me, and I could sense how others quickly picked up on this at a glance.

I discovered that autistic people are good at looking for patterns in interactions and analyzing them, imitating them, faking them. This would explain why social interactions would often leave me feeling unheard and exhausted. I felt overstimulated and adrift, which resulted in further ostracizing and rejection. People often misperceive my communication style — too blunt, too aggressive, direct, cold, or lacking empathy. My shyness was viewed as cold and my constant overwhelming anxiety as anger.

Autism is genetic and highly heritable, with brain structure and functioning differences appearing from early development. Research shows that autism does indeed run in families. I have a cousin with autism. He would be classified at level 3 which is very high-support needs. Common behavioural challenges at level 3 include self-injury, aggression, running or wandering away, and extreme sensory processing issues. He has never been able to live independently and requires 24-hour care. I saw how challenging this was for their family emotionally, physically, and financially.

Admittedly, this was my only view of what autism was. And often, this is why women are misdiagnosed or not diagnosed at all; people associate the disability with young boys with behavioural or developmental issues. Women and young girls are able to slip through the cracks because they are better at masking the disability and are left to fend for themselves in a world that was not designed for them.

I keep telling myself that this couldn’t possibly be me. I mean, if I were autistic, surely someone, everyone, would have noticed? I didn’t exhibit severe symptoms, so it’s hard to believe that this could apply to me, right?

But for the first time in my life, I have an answer, an actual scientific diagnosis, that explains why I am different. Why I think the way I do. Why I’ve struggled so much, and have spent so much of my life hiding my stress for everyone else’s benefit, at the cost of my own mental health.

I mention my findings to Tyler again. I get choked up and the emotion catches me off-guard. I almost want him to talk me out of pursuing this further.

“If it will give yourself clarity and relief, you should do it.”

I agree. I decide to book an assessment.

“And I’m not what I appear to be,
Although I laugh and I act like a clown,
Beneath this mask I am wearing a frown.”
— The Beatles

Part 2

The autism assessment process, I learn, is fairly long and arduous. It is also expensive. I was looking at a bill of about $2,400 (this was the cheapest I was quoted at the time, with the most expensive in the $4k range).

Getting an official diagnosis is a double-edged sword. For starters, I could complete the process only for them to shoo me away and tell me it’s my mental health. I’ve had this experience with doctors in the past. One doctor labelled me as “depressed,” gave me anti-depressants and sent me on my way. I argued that I am in fact, not depressed. But the medication does help treat my severe PMS symptoms (fun fact, PMDD disproportionately affects people with autism/ADHD), so I still take it because it helps alleviate my pain.

A second doctor I saw dismissed me completely. “You seem completely fine to me.” At the time, I didn’t know what I was dealing with, so I thought my issues were just related to anxiety. I needed help, but I didn’t know what help to ask for, so never received any. Because my feelings and experiences were so invalidated by these doctors, I never bothered going back. This is a common occurrence for women with autism — nearly 80% of us are misdiagnosed, often with conditions such as borderline personality disorder, eating disorders, bipolar disorder and even narcissistic personality disorder.

When a woman discloses that she’s autistic, the reaction is often, “But you don’t look autistic,” or even a straight denial, “No you’re not.”

I’m guessing this is meant to be a compliment — it’s not. It’s like telling someone, “you don’t seem gay.” Since you don’t fit into my preconceived or stereotypical view of what a gay person should be, therefore, you can’t possibly be gay. Which is a rather bitter compliment to absorb. It’s like saying I don’t count as autistic because I can feign normality for short bursts of time.

People often fail to recognize the challenges and inner turmoil I face because my life appears well put-together. It’s disheartening that my struggles have been dismissed, even by trained medical professionals, simply because of what they are seeing from the outside.

From a young age, we’re taught that busyness equates to value, but it’s problematic to link our intrinsic worth solely to productivity and activity. Society often places higher value on those who appear independent and productive, however, this mindset can be particularly harmful to those silently struggling with societal expectations and pressures.

Disabled people are often viewed as charity cases to others — is this person disabled enough to be worthy of pity and charity? For some, it’s seen as a personal flaw, for others, their disability is seen as more severe and we should hold more compassion for them because people tend to view the severity of a disability on how much it affects them, not the person with said disability.

Those early days after my diagnosis were a rollercoaster, filled with moments of clarity, anger, grief, but eventually, acceptance. I felt overwhelmed and anxious, grappling with the realization of how this diagnosis might impact my future. I will now forever have a label– something to point to that says, “she’s different.” It was a complex mix of emotions as I tried to process the implications, and how it affects my place in the world.

There are very real-world consequences to this, too. It could impact my ability to get health insurance or affect potential job opportunities or career advancements for me. If I someday decide to have kids and get a divorce, my disability could be used against me in court.

I would be considered a Level 1 autistic. On the surface, I seem to manage quite effectively, maintaining a job, caring for a home, looking after a pet. However, I encounter significant challenges, particularly related to sensory sensitivities and social interactions, as is unique to each individual on the autism spectrum.

Given the recent trend that autism is just a quirky personality type, and not a developmental disorder can impose genuine obstacles when it comes to quality of life. Disabilities like autism for low-support need individuals like myself, can be so hard to manage and understand, that I’m left trying to learn more about myself from a 18-year-old TikToker.

Looking around, I’m aghast at how few resources exist for women like myself who are late-diagnosed. When most people envision autism, they likely picture young boys, toddlers with hyperactivity challenges. As for Asperger’s (reclassified as autism due to its association with Nazism), figures like Mark Zuckerberg, a savant lacking social skills, often comes to mind. I don’t fit into either category. I feel like a lot of “support” for autistics rely on outdated stereotypes that didn’t truly benefit us anymore.

I wondered if people would perceive or treat me differently after a diagnosis. Some may not believe me, think I want special treatment or attention, or use it as an excuse to infantilize me. We’ve come along way, but there is still a lot of stigma and discrimination about mental illnesses and disabilities. Myself included. I was woefully uninformed about autism itself and had to take a hard look at my own ableism throughout this process. Ultimately, my hope is that others will take my problems more seriously if a psychiatrist has validated them.

And potentially for the first time, I can try to access appropriate assistance tailored to help me thrive in various aspects of daily life–further enabling me to not only become a better advocate for myself, but for others with autism, too.

“The cold hand of the past emerges from the grave of our ancestors, grips us by the neck and directs our gaze towards a single future. We have felt that grip from the moment we were born, so we assume that it is an inescapable part of who we are. We seldom try to shake ourselves free.”
— Yuval Noah Harari

Part 3

In my early twenties, I was diagnosed with C-PTSD (Complex Post Traumatic Stress Disorder).

C-PTSD is caused by repetitive trauma over long periods of time. Different from PTSD, which is caused by a singular traumatic event, complex trauma can be harder to treat because the circumstances contributing to the trauma can be hard to pinpoint and is difficult to process and heal. Childhood abuse is the most common cause of complex trauma.

I grew up in a very abusive and tumultuous household. I was abused emotionally, verbally, and physically by my mother throughout my childhood. My upbringing was a battleground of manipulation, conditional love, and neglect. The constant criticism, unrealistic expectations, and fear of violence, eroded my self-esteem and confidence deeply.

Every day was fraught with uncertainty–walking on eggshells to avoid triggering her volatile moods and unpredictable reactions. I would walk into the kitchen and get a spoon thrown at my head for no reason. Or I’d get berated for being hungry, even though I wasn’t given food all day.

During my teen years, school and sports served as sanctuaries from the turmoil of my home life. My fondest recollections revolve around participating in team sports, where I found solace and camaraderie. I experienced a sense of belonging, being embraced by teammates and occasionally entrusted with leadership roles. Those moments were marked by newfound acceptance and validation, offering a stark contrast to the struggles I endured at home.

As a result of my upbringing, I spent most of my 20’s with crippling anxiety and bouts of depression, which escalated into panic attacks. I would regularly spend my breaks at work hyperventilating in the bathroom. At this point, therapy was imperative. My anxiety had escalated to such an extreme that I knew if I didn’t intervene, I’d end up in a psych ward.

This apparently happens to a lot of autistic adults. They report feeling “more autistic” as they mature into adulthood. Which is untrue; those with autism are born with it, but at a certain point the weight of societal expectations and layers of overwhelming demands or trauma become too much for us to handle, and we hit a breaking point.

There has been research done into the connection between PTSD and autism; it’s common for both to be diagnosed and there’s a lot of gray area between the two conditions. Since neurodivergence is genetic, and trauma can be generational, they tend to go hand-in-hand. Due to various factors such as low social status, our vulnerability to being rejected by family, mental illness, and social isolation, autistic people are far more likely to be traumatized, so it can be tricky to separate.

I’ve been through a lot of awful things that no one, especially a child, should have to experience. Upside is that I’m thankful to still be here, downside is that I process and experience the world differently than most people do. I’m jaded and cynical. I don’t see the world through rose-colored glasses, how can I? My own mother didn’t love me — I have little faith in finding others who do, either.

The repercussions of my childhood will stay with me for a lifetime. No amount of therapy, positive thinking, or meditation will replace a loving, caring mother. There is a hole in my heart, in my being. My whole ethos, where my mom’s unconditional love and support was supposed to belong, cannot be filled.

Overcoming a narcissistic upbringing often requires significant introspection, therapy, and a journey towards reclaiming one’s autonomy and sense of self. I’m really proud of myself for being on that journey.

I haven’t seen my mother in 7 years. A lot of people probably can’t wrap their head around having to become estranged from a parent (hence, why I rarely talk about it). But others don’t have the context of the unbearable history that led to that decision. Even if you can’t make sense of it, you can respect it and not add more pain.

The trauma and hurt that has poisoned my family for generations, ends with me.

“Never really been alive before, I always lived in my head,
And sometimes it was easier, hungover and half dead.”
– Florence Welch

Part 4

For me, experiencing autism often feels like everyone else was naturally equipped with an instinctive understanding of how to act and be — like I was supposed to be taken aside as a kid and explained the rules but never was.

Social situations felt like muddling through trial and error or slogging through fake small talk until I figured out what others liked. I was mistaken for being overly harsh or impolite, when in truth, I was sincerely trying to initiate a conversation. I would say something like, “Oh, I like your top!” and others would misinterpret it as mockery.

So, I learned how to blend in. How to melt into the wallpaper, disappear into the couch. The less conspicuous I was, the more readily I was embraced. Despite occasional invitations, I perpetually found myself on the periphery of social circles, always slightly out of sync and never truly integrated. I observed from a distance. I existed as an afterthought, drifting in and out of relevance. While not actively disliked, I also failed to inspire genuine affection.

A lot of women’s social currency is based on how well she does in groups. Unfortunately, autistics are known for being unwilling or unable to homogenize. Due to societal expectations and gender roles, I often feel pressure to conform to certain norms of behaviour that don’t align with my natural tendencies or communication style. Many autistic women find themselves grappling with a sense of not belonging, longing for understanding and acceptance.

Girls are often brought up with the expectation to be affectionate, submissive, expressive about emotions, and socially engaged. We place a greater emphasis on females displaying empathy and nurturing qualities – there’s an assumed role for us to embody warmth, care, and a comforting, non-questioning presence. However, I don’t fit this expectation.

It’s such a strange juxtaposition between desperately wanting to fit in and be part of a group, and then actually being in one, and realizing that I must keep the mask on forever in order to maintain membership. It’s like wanting to be included, but than hating the dynamics once I’m in.

This is when I discovered that for most of my life, I was masking. Masking is a coping mechanism, but also a survival technique. Autistic masking is a behaviour that helps us hide and suppress signature characteristics of the disorder, camouflaging our autistic traits to fit societal norms and expectations.

I came to realize that most people don’t consume considerable mental energy monitoring their speech, posture, gestures, and facial expressions in social situations like I do. Many social behaviours and body language cues that come naturally to most individuals, were not programmed in me. I have to consciously adjust my tone, body language and facial expressions to appear more “approachable.”

Here’s a glimpse into my mind during a conversation:

Step 1. Cue smile
Step 2. Raise eyebrows to show interest
Step 3. Make eye contact
Step 4. What was I talking about again?
Step 5. Not too much eye contact, you freak
Step 6. It’s hot in here, why is it so hot?
Step 7. Stop fidgeting
Step 8. Ask them how their weekend was, people like that
Step 9. Do they hate me? I feel like they hate me
Step 10. Use hands to emphasize a point
Step 11. Fake a laugh at someone’s lame attempt at a joke
Step 12. Why did I wear these pants? They are so uncomfortable
Step 13. WTF do I do with my hands now? In my pockets, on my hips?
Step 14. Look relaxed. OMG, RELAX!

Masking leaves us exhausted. Not the kind of exhausted you can sleep off in a weekend — this was the type of exhaustion I felt in my bones, the type of exhaustion stemming from not being able to be myself for 32 years.

Neurotypical individuals (who make up 85% of the world’s population) often engage in indirect communication styles, relying on subtle cues, implied meanings, and context to convey messages. This can present challenges for autistic individuals who may prefer clear and direct communication. Furthermore, because autistic people are in the minority, we don’t think, perceive, and behave in ways that are considered to be the “norm” by the general population.

I tend to find most relationships confusing and conflicting. When someone says through gritted teeth that they are fine, when clearly they are not, I don’t know what to say or do. You are clearly not fine–people say one thing and mean another. The mismatch of facial expression and the intended meaning throws me off kilter every time. “We should get together soon!” actually means, I’ll never fucking hear from you again. The emphasis on conformity and social hierarchy always felt arbitrary to me, I never understood why others prioritized surface-level interactions over genuine emotional honesty.

I’d often receive “helpful” but condescending remarks like, “You seem unhappy, you should smile more!” I comply, albeit reluctantly, turning to reveal what feels like a forced, Joker-esque grin. I’m genuinely content; this is simply my default facial expression. I would often marvel at how women could get away with saying the most back-handed, passive aggressive things as long as they maintained a soft tone of voice. It’s like we are all playing a game; a game of never saying what we truly mean, and I’m left in the dark trying to decode the meaning.

Every time I met someone new I’d tell myself, “this time you’re going to get it right.” But alas, the effort of keeping up the façade would exhaust me, and my mask would start to slip. I feel overwhelmed and bewildered by the expectations others have in relationships. I crave solitude much more than some, while others thrive on constant company. Our needs are generally contradictory, and eventually, one of us pulls away.

“Why are you so quiet? What’s your problem? You’re strange, aren’t you? Are you upset? You are a real mystery. You should open up more. Wow, I thought you were a total bitch when I first met you. You’re different. What’s wrong with you?”

I’ve lost count of how many people have said these things directly to my face over the years–I can only imagine what others say behind my back. People often don’t realize the extent to which I’ve internalized these comments, and the pain I feel from these words is deep and profound. For so long, I let shame and social judgment shape me. It turned me into someone who rejected others before they had the chance to reject me. It was easier that way, less complicated. I felt like I had more control over my life remaining at arms length.

It is mind-boggling to me that others can point out that I’m being quiet, but if I were to ask them “why are you being so loud?” — I’m the one who’s out of line. This is just one example of social interaction rules that are rife with double standards. Nuanced rules that I don’t understand.

We are not the blank automata so often portrayed in media (think Sheldon Cooper from the Big Bang Theory, or Lisbeth Salander from The Girl with the Dragon Tattoo). Autism is so broadly associated with assholery that we try to overcompensate by being people pleasers and non confrontational. I know I can often come across as being stone cold — as if no one can hurt or touch me. I actually feel things very deeply, but sometimes what’s happening on the inside doesn’t match my facial expressions.

I consistently find myself feeling invisible, forgettable, and disposable to others, a recurring theme in my life. I’ve had people reintroduce themselves to me even though we’ve met on multiple occasions, call me by the wrong name, or only reach out when they need something from me. I never seemed to be anyone’s first choice, and my authentic self never felt good enough. I was the friend summoned only as a last resort, merely to fill empty spaces, never truly feeling valued or wanted. I frequently experienced a deeper emotional investment in relationships than the other person, leading to resentment because the effort was not being reciprocated. I’m sure this is a defense mechanism developed after enduring numerous disappointments and letdowns in relationships over the years.

A few years ago, I had a misunderstanding with a friend. My misstep was entirely inadvertent–I wasn’t even aware of my mistake until I discovered that my husband and I had intentionally been excluded from a social event we had planned to attend.

It really upset me — I remember sitting in my car and crying in a Home Depot parking lot about it. I felt awful for causing someone pain, but it was disheartening that they perceived me as the type of person capable of such actions in the first place. Our relationship has not been the same since. Each time I encountered them afterward, their demeanour appeared distant and cold, as if they wanted nothing to do with me. It was perplexing because they said everything was fine to my face, but their actions and body language were conveying the opposite.

These situations are hard for autistics. We tend to hyper fixate, and play over and over in our heads what we did wrong, how we could have done things differently. We feel intense sadness, guilt, and insecurity when being rejected (which is actually a dysphoria related to autism).

I do care — I just find it hard to translate how I feel in a way that makes sense to others. I’ve come to terms with the possibility that I may never attain closure regarding what happened. I still feel sadness about it, but I have learned that when others resort to using the silent treatment or indirect forms of ostracism, it is neither effective nor healthy when addressing conflicts. True love creates space for freedom, expansion, open communication, and forgiveness.

Miscommunication is basically a rite of passage for autistics. Direct communication can be intimidating for most people, but because I am autistic, I have a harder time “reading between the lines” and I’ll inevitably misinterpret something. Even though it hurts to hear I did something wrong, I’d rather hash it out and offer an apology. After all, I can’t read minds, and ambiguity and unpredictability are my brain’s adversaries.

As I continue learning more about myself and my boundaries, I will make mistakes, frustrate people, or upset them. It’s okay for our actions to make others unhappy sometimes and it may even mean disengaging from those who are not worth the effort.

It’s moments like this in my life where it’s so painfully evident that I’m different from the people around me. My life is littered with broken relationships.

There are so many things that we’re able to excuse, to convince ourselves that we’re just fine — eye contact, socializing, going out in public, making jokes — and a lot of the things make it seem like we “don’t look autistic,” when in reality it takes a lot of practice, concentration, mental systems, accommodations, and recovery time for us to do things that allistic people don’t think twice about.

It’s not all terrible, though. Autistics in general have a keen eye for detail, and a knack for logic. We are creative, scientific, musical, analytical, and artistic. We have a low tolerance for bullshit and inefficiency. I feel like I have a finely tuned ability to detect phoniness and hypocrisy where others fail to see it. We can have intense emotions and strong judgments, and often don’t care about social norms.

We can be funny, loving, hyper-empathetic humans who’s brains just happen to function a little differently.

“Sometimes a label is the only way of parlaying some compassion out of the world.”
– Katherine May

Part 5

In hindsight, what I thought were panic attacks, were actually autistic meltdowns. Autistic burnout is a result of chronic life stress without adequate supports. It is characterized by pervasive, long-term exhaustion, loss of function, and reduced tolerance to stimulus.

My meltdowns generally manifest as shutdowns. My body undergoes dysregulation, often triggered by sensory overload, social interactions, or stress. I find myself needing to disconnect from the outside world for days, sometimes even weeks, as my body enters a state of rebellion. I’d describe it as more of an implosion. I don’t have much of a reaction outwardly, but inside I feel like a bubbling cauldron with a searing headache.

I wish others understood how intense the psychological pain is. Expressing this to regular people is challenging because it appears highly absurd, and conveying it without coming across as melodramatic or unreasonable is difficult. I consistently experience a persistent sense of fatigue.

I quickly adapted, and learned more socially acceptable ways of becoming socially withdrawn, such as being “sick,” or drowning myself in work to hide my meltdowns. Which is what I did after I graduated college and moved to Toronto. I was working a regular 9–5, plus freelancing on the side. I’d get home from work, eat, then work until 10 or 11pm almost every night. Anything to divert attention from the constant anxiety and malfunctioning of my brain.

During my time working in Toronto, I recall feeling extremely uncomfortable in an office environment. The bustling nature of offices, with fluorescent lighting, background noise, and the constant ebb and flow of people was overwhelming to my senses. At the end of every workday, I’d frequently arrive home on the verge of exhaustion.

During performance reviews, I regularly got feedback that I was too forthright, too blunt, and I needed to speak up more in meetings. Valuing direct communication myself, I tend to assume others also appreciate straightforwardness. I only speak when I believe it’s necessary.

I worked with male colleagues who freely swore during meetings, interrupted others, and still received promotions, while I was labeled as hostile. It’s worth noting this was in the tech industry, where there’s a prevailing notion that men can embody the “brooding” genius archetype. However, if women don’t conform to a certain subservient mold, they’re often perceived as disruptive or a liability. Navigating office politics would often prove perplexing (and unimportant) to me.

I just wanted to do a good job without being hassled. I was serious, quiet, and straightforward. Unfortunately, others view that as you not wanting to fit into the hierarchy and freeze you out. It’s like everyone could almost immediately recognize something was “off” about me, and I was “othered” at work and judged in social circles right away.

The pressures from work, and the challenges I faced privately began to take their toll on me, again. I started breaking out in hives. Massive, itchy, burning welts all over my skin. The issue was omnipresent for years. I even visited one of the best allergists in Toronto who basically told me there was nothing I could do except take a concoction of steroids to help reduce my breakouts (which made me gain weight like crazy). The hives got so bad I ended up in the ER one night because my mouth was itchy and I was worried my throat would close.

Hives can serve as an indicator of potential autoimmune diseases. Despite this possibility, my blood work consistently returned nothing and my physicals fell within the normal range. I’m now convinced it was my body’s way of telling me it was overwhelmed. My mind and body was engulfed, submerged, and inundated by stress.

I started seeing another therapist about why I was so bad at coping with seemingly normal, everyday things, but I started plateauing at therapy–no amount of observing my thoughts from a distance helped. The sessions with my therapist started to feel directionless and open-ended. She was too passive for my inflexible brain. I didn’t want to vent, I needed answers.

She would give me advice like, “Just ask someone you want to connect with to coffee this weekend.” While I guess this may be helpful advice for normal people who aren’t social aliens like myself, it failed to address the underlying issue of why I struggle to sustain relationships.

It’s worth highlighting here the limitations of conventional therapy for autistic individuals – because our fears and stresses, often dismissed as ‘irrational’, are actually undeniably valid. My last therapist would also tell me that, “you’re more than your looks, stop being so insecure.” Excuse me, but my appearance is a crucial factor in whether I’m accepted or excluded from society because my personality doesn’t seem to be doing the trick. I look extremely functional and successful unless you live inside my body; then you’d know it’s a dog’s breakfast.

I continued to find myself making decisions that didn’t truly align with my desires, simply because it’s what I felt obligated to do. I’ve been conditioned to disregard warning signs, to tough it out, and move on. Like remaining at social gatherings for longer than I wanted, primarily out of concern that leaving early might be perceived as rude — despite being aware that I would feel miserable by the time I got home.

Autistic people can often have heightened sensitivities to sound and light, influencing everything from social interactions to work or school environments. Autistic brains process an average of 42% more information at rest than a neurotypical brain.

This would explain why mundane tasks for neurotypical people, such as getting a haircut, can be hard for me. The assault of smells coming from different hairsprays and chemicals, the roar of blow dryers, the spotlight-style lighting, feeling obligated to maintain pleasant chit chat with the stylist, all while remaining militantly still for 2 to 3 hours. I feel like a piece of bacon under a heat lamp. Slowly frying, my energy sizzling away. Or how trying to talk to other people at loud bars or restaurants is impossible because I cannot drown out background noise and focus on the person in front of me. It all becomes mumbled into static.

I have very strong sensory issues with my hair. I hardly ever wear my hair down because the sensation of hair touching my neck feels like fire ants crawling across my skin. If one hair falls out of place, I notice it right away and my skin becomes itchy. I actually believed this was a common experience that everyone felt, feeling like a failure because I struggled to cope with it more effectively.

Autistics expend a huge amount of mental energy every single day coping with socializing, change, and sensitivities. Think of it like an energy bank. More and more energy gets withdrawn throughout the day just to survive because our brains are hyperactive and the world, overwhelming.

When autistic people get overwhelmed, we stim. I had never heard of this term before, but I realized I’ve been doing it my entire life. Stimming serves various purposes including self-regulation. Plus it can take many forms, such as hand-flapping, rocking, spinning, tapping, or vocalizing.

My stims are more “acceptable” in the sense that I don’t visibly rock or flap my hands in public. I do fidget a lot in social situations, bounce my leg up and down, twirl my hair, touch my face, and I often chew my cuticles or the inside of my mouth until I bleed. I thought these were just bad habits, but it was actually my body trying to regulate itself when I was under emotional stress.

I am so grateful I don’t have to suffer at offices anymore. I have the freedom to be myself most days, now that I have a work-from-home job that provides me with just the right balance of social interaction and flexibility. I’m slowly learning to quiet the voices in my brain, the guilt from others’ expectations of what I “should” be doing, rather than evaluating what is best for me and my needs.

Naturally, I’ve been doing more research on how views of autism can vary based on cultural norms and societal perspectives. I sometimes wonder if I’d fare better as an autistic in the Netherlands, where Dutch people are known for direct communication — getting straight to the point and stating the facts as they see them. No cushioning, no sugarcoating. Or in Japan, where avoiding eye contact is customary and is even seen as a sign of respect.

To be fair, our paradigm of what is “normal” can be fairly narrow…

“Guilt blocks growth. Grace unlocks growth.”
— Jay Shetty

Part 6

Life before my diagnosis was a whirlwind of bad mental health, social struggles, and being weighed down by this overarching feeling I was broken, damaged, or just a shit person.

Realizing and accepting myself as disabled has entailed a significant and profound reshaping of my entire life.

I’ve accepted that I may never have lasting friendships or know how to maintain them properly. And that I’ll probably never be able to keep up with life at the same pace as everyone else. All the instances when I was overly critical of myself weren’t due to me being unintelligent, lazy, or clueless. Rather, I just lacked the necessary tools and support.

During my research for this article, I read a study about how autistic people are quick to be judged by complete strangers, even within just a couple of seconds of interacting with them. In that same study, it was found that if the other person was told about the autism beforehand, they were able to connect and hold a much better conversation with less judgment.

If an autistic person can benefit from more flexibility and social patience, why not extend those same benefits to everyone? I think we should hold more compassion for everyone in social situations who are just trying to do their best — even if it is unstable and imperfect. We are all operating at different levels, mentally and socially, and having patience for others can go a long way to making others feel more included. Being wired differently is completely OK–being intolerant of differences is not.

So, why am I sharing this? I’m not sure. I’m a very private person–that’s not by accident. I have spent my entire life being misunderstood. Putting my feelings into writing has been primarily therapeutic for me, as I find that I can articulate myself much more eloquently through written word than verbally. I hope it has offered you some perspective and insight into my inner world.

I’m “coming out” as autistic in a rather harsh landscape, where it’s likely other people won’t actually believe me, or even discriminate against me.

As trite as it sounds, it would make me so happy to know that someone reading this might recognize similarities in their own behaviours (or their child’s behaviour) and decide to seek testing. Reflecting on my life thus far, I realize how much self-compassion I could have shown myself if I had known earlier. On the flip side, the thought of potentially living my entire life without knowing I was autistic, is unsettling.

Disapproval has been so painful for me in the past. My mother’s disapproval as a kid, morphed into external social disapproval as an adult. I’ve been waiting most of my life to fit in. Waiting for my life to begin. Waiting for the proper me. Truth is, I will never fit in. A part of me is still unsure what is authentically me, what is my trauma, what is my disability. Where does each one stop and the other begin?

Building a lifestyle that revolves around my strengths rather than pushing to overcome my weaknesses, is my goal for this year. Embracing and being compassionate towards my limitations will aid in creating a purposeful, slower, and more comfortable life.

For too long, my existence has felt fragmented. Autism has the potential to serve as the adhesive that reunites some of those scattered pieces.

It’s an existence where someone like me, can still be recognized as worthy and whole.