Living with Autism, I Have a Fear of Being ‘Found Out’

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“Ever since I was just a young kid, I knew I was ‘different.’ There always seemed to be some sort of barrier between me and everyone else, and my life was peppered with frequent communication issues, misunderstandings, and just an all-around discomfort with things everyone else seemed to manage. Eye contact, crowds, social gatherings, certain textures/smells, loud noises, homework and classwork I could never seem to focus on, and being asked to do things I didn’t want to do would all send me down a spiral.

Parents sit with their two young children
Courtesy of Kaitlin Ruby

I learned to hide (or, what people commonly refer to as ‘mask’) a lot of things from the public eye—while privately at home or in the car, I would have meltdown after meltdown. I got good grades and had no behavioral issues in school, so none were the wiser. As a kid/young adult, they were ‘tantrums’ and chalked up to normal adolescent highs and lows. As an adult, they were ‘extreme panic attacks,’ which sometimes presented as ‘irritability,’ and major depressive episodes.

I never knew what was wrong with me, or why frequenting therapy and trying medications never seemed to fully help. For a while, it was presumed by medical professionals to be depression and anxiety. And it wouldn’t be until a few years after I graduated college when I would be diagnosed with ADHD and subsequently, autism.

A young woman wearing a blue tank top and shorts
Courtesy of Kaitlin Ruby

Once I received my diagnosis, a lot of conflicting emotions popped up. First, it was joy and relief that there were answers. Then it was fear. Fear of how others might look at me a little differently from here on out. Fear I would be too frustrating for most to ‘deal with.’ Fear of being even more of a burden.

Following that, it was shame and impostor syndrome. I mean, you’re telling me these issues I have are a part of my inherent brain wiring and may not ever be ‘fixed’ with medication? How could someone like me who appears on the surface to be so able-bodied, capable, and smart to the outside world have autism?

A young woman in a pink dress sits on a fountain
Courtesy of Brandon Pfeltz

Then the hyper-awareness starts to kick in. I analyze every single movement, gesture, sound, and word for signs I am acting ‘too autistic.’ I’ll notice I’m rocking back and forth or making a weird sound, and I pause and feel ashamed. Or I’ll flap my hands out of excitement or stress and instantly stop myself as soon as I realize. In private, I’ll hit myself when having a meltdown, but in public or during social interactions, I’ll go silent.

As soon as I start to do well socially, usually I spiral and completely flub further interactions because I am insecure the people around me will notice something is wrong with me. That they’ll notice I ‘seem’ smart but really I’m ‘socially inept.’

My social skills rely on a lot of scripts I run a thousand times over in my head. Which is fitting, having graduated with a Theatre Arts degree. It’s funny—you would think an autistic person such as myself wouldn’t thrive in the naturally stressful environment that comes with this particular art form. And in a way, I don’t. Anyone who has been involved in any sort of theatrical/film production in any capacity knows how taxing and demanding the work is, even if that one production is the only job you have.

A young woman wearing a cap and gown stands with her family
Courtesy of Kaitlin Ruby

I recall one specific instance where I was admitted to the ICU—nearly dying from internal bleeding—due to multiple stress-induced tears in my upper GI tract from pushing myself to an extent in which I shouldn’t have been. Taking 21 units in college, costume-designing a show, playing one of the leads in a very demanding play, and working all at the same time was probably not my brightest idea.

A young woman acts in a production of Julius Caesar
Courtesy of the Kingsmen Shakespeare Co.

And all that on top of not knowing I was, in fact, technically disabled on multiple levels—is insane to look back on now. I have a lot of respect and admiration for my past self—not only for the sheer resilience I possessed but for accomplishing what I have while living with an undiagnosed, almost invisible disability for which I had no tools or resources at my disposal.

While sometimes the environment of the theatre and film industry can be stressful and unsustainable for folks like me, the art itself is something I hold so near and dear to my heart. It played an integral part in shaping who I am. For one, I believe acting allowed me to understand social communication on a level I don’t think I would have had otherwise. It became a channel in which I could express myself and my emotions safely, with words already written for me, with no social repercussions because it was all pretend.

A young woman acts in a production of Richard III
Courtesy of Kingsmen Shakespeare Co.

In a way, theatre also taught me how to act neurotypical and mask. Which is both a blessing and a curse. So I have the tools to sort of blend in and fly under the radar—but do I want to do that? And, more importantly, is that healthy for me?

A young woman wearing a white dress and holding a basket
Courtesy of Brandon Pfeltz

I’ve found myself getting caught up in the gray area of the pros and cons of conforming to what society and others expect of me. What is considered masking ‘too much?’ What is considered not masking enough? What is a healthy level of masking? What do I hide? What do I open up about?

Recently, I stumbled upon a conundrum where I had to give my public social media accounts to a job I was applying for. This was difficult for me because on one of my accounts, I had the hashtag #actuallyautistic in my bio. I had never actually addressed publicly why I had the hashtag there or what my diagnostic story was, but it was my own way of slowly ‘coming out.’

Upon submission of my application, I deleted the hashtag, and it hasn’t gone back up since. What’s hilarious is on that same exact day on my private account, I posted about autistic pride in my stories. But I was still afraid. Afraid of what they would think of me.
Because even if my application was amazing—would they suddenly find me incapable of performing the job if they saw I was autistic? Would they opt for someone just as talented as me who doesn’t come with the ‘extra baggage?’

A woman wearing a hoodie looks down at paper
Courtesy of Doug Krantz

These thoughts are shame in action, along with fear of all my good qualities and talents being disregarded by the fact I have a disability. I have been privileged in the sense that I haven’t been wildly discriminated against in the past because I haven’t known about my autism. And if I didn’t even know, who else would?

But now that I have more insight about myself and the way my brain works, it, unfortunately, comes with the repercussions of being uncertain about how much is too much information to disclose, and what will count against me in any sort of hiring process. So right now, there is this very real fear for me of being ‘found out.’

One of the characteristics of autism is blunt honesty and transparency. Due to this trait, I’ve always been incredibly open about my journey and struggles. I have an extremely hard time lying or keeping anything about my life a secret because I don’t see a point in hiding who you really are. I’ve always been a ‘social norms be damned!’ kinda person. But unfortunately, what I’m grappling with right now in this moment is a strong desire and urge to hide this particular part of me from the public.

A young woman with autism wearing a black dress
Courtesy of Kaitlin Ruby

Autism is not ‘quirky’ or ‘trendy,’ it is hard and comes with very real social repercussions. On my private Instagram account reserved only for people I know in real life, I have no qualms about sharing and discussing it (well…I have SOME qualms but not consistently). My public accounts are where I have a much harder time opening up. Like maybe, if I pretend I don’t have autism, it will not be an issue in my professional life and I won’t have to deal with any of this.

Writing this piece, in a way, is a really challenging exercise in practicing that level of vulnerability—praying I might be accepted and celebrated as I am, the good parts and the ‘bad’ parts—without having to hide myself.

The thing is: autism is actually responsible for a lot of amazing things in my life and a lot of my strengths too. I am an incredibly passionate and creative person, who has a lot of ‘special interests’ (AKA: subjects I’m extremely dedicated to and passionate about). I am ambitious and have been pursuing various careers involving the arts and sciences: acting, visual art, and most recently, the study of plants and herbalism.

I have always been able to easily connect and bond with non-human living beings, such as animals and plants. I attribute this ability to not having to speak in any ‘language’ with them. Most of my inherent life problems lie in the inability to communicate in a similar way as a majority of the human population. But with plants and animals, it’s communication from the heart and soul—no language, no over-analyzation of words and tone, no barriers. And I wish sometimes we as humans would practice that same kind of bonding.

A young woman sits with her friends in front of a LOVE sign
Courtesy of Kaitlin Ruby

If you take away the words—what lies beneath? Usually, I’ve found it’s love and the need to be loved in return. There are days when relationships with others can get so complicated I wish I didn’t have autism at all. When it would be so much easier for me and everyone around me if I didn’t have this barrier. When I wish I didn’t get overwhelmed so easily so I wouldn’t be so physically sick all the time and I wouldn’t be a burden.

There always have been and always will be setbacks. I have my strengths and weaknesses, just like everyone else. Though my brain is structured differently, I am human too and deserve compassion and the opportunity to work, achieve my goals, be better, and thrive. I don’t wish autism on anyone (it’s HARD), but I also don’t wish I was anyone else. I would not be the person I am without it.

A woman wearing a black dress holds up an award
Courtesy of Kaitlin Ruby

Going forward, I have to remind myself constantly I have accomplished so much in my life, with and without this diagnosis. That even though I am autistic, and it plays an integral part in my day-to-day life and communications, I am more than a diagnosis or how I
identify. I’m an artist, an actor, a herbalist, a friend, a daughter, a partner. I am human, and I’m trying to figure it out just like you are.

If there was one thing I want you to walk away with after reading my story, it’s this: try your best to be as kind, compassionate, and forgiving as possible—especially in social settings and on social media. Most of the time, people have good intentions despite not behaving or communicating the way society tells them to. You don’t know what anyone is going through. Even if you may think you know, you probably don’t know the extent to which they may be hurting. They themselves may not even know.

Look past people’s words, and look at their souls. Their humanity. Engaging with this forgiving framework would make it a lot easier for autistic folks, such as myself, to navigate this world and feel more welcome in it.”

A woman poses with one hand on her hip and the other in the air
Courtesy of Joyee Luau

This story was submitted to Love What Matters by Kaitlin Ruby from Maryland. You can follow their journey on Instagram or her website. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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