‘You’re just NOT trying hard enough.’ I KNEW I was different, but I tried to brush it off. Then something magical happened.’: Woman diagnosed with autism shares journey, ‘I will live a BEAUTIFUL life’

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“When I look back at my life so far, which is something I do daily, I would say my story is about acceptance. I always knew deep down I was different, but for almost all my life I tried to brush it off. At home, every behavior was okay, as long as it did not include hurting others. I might have embellished my childhood memory over the years, but my mother really did a great job. She was not able to answer all of my questions (‘Why is the Earth round?’ ‘Why are people evil?’ ‘Why don’t the people in the supermarket care about the environment?’), but she gave me a loving and accepting home. This is why the first time I was bothered about being different was in kindergarten. Thankfully, there I found my amazing best friend, who never cared that I stimmed or had weird thoughts or enjoyed weird stuff. She really became my second mom. I spent every possible second with her, which became harder as we grew up.

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In middle school, she had other friends. I went with it and just tried to be the kid who was always making jokes. This way, nobody noticed the many times when I really meant it that way. But I paid a huge price for it. The more they laughed about me, the more I hated myself. I noticed I was the weird kid, I noticed the boys ignored me, I noticed when they talked about me. I noticed a lot more than they thought, because of my very sensitive senses. And it hurt. Things changed in high school. The system is different here in Austria. There’s the normal four-year long high school, and the five-year high school, for kids with special interests. And of course, as an autist, I had those. For as long as I can remember I wanted to become a doctor, and since I was able to interact with art supplies, I did. I basically taught myself everything about art and didn’t really feel like I needed help there, but I really wanted to focus on science in school, so I choose the five-year special high school, while my friend changed to a normal one.

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I always admired her for how easy things were for her. ‘How come she can just have a sleepover?’ ‘How on Earth can she just find new friends, like it is the easiest thing in the world?’—those are some of the questions I always asked myself. I wanted to be like her, I wanted to be liked by everyone. This is why, since kindergarten, I became a master in masking. Masking is something autists do to be accepted by society. It’s very, very energy draining. It’s like being an actor all day long. You watch people who seem to do well around others and perfect their posture, their way of talking, even the tone of their voice or how they move their face. Because these things don’t come naturally to us autists. I don’t feel like moving my face for expressions, it literally feels like overexpressing to me. Like I am trying to make a baby laugh by showing some grimaces.

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If we don’t mask, others tell us we are machines, we don’t have empathy, or we are ‘just so weird.’ They notice we are different, and we notice when they do. And it hurts us, because we just want to be accepted. So we mask. Even though we come home and have no energy left to do anything. Even though it’s sometimes so stressful, we burn out. Because we just want their acceptance. Or, at least a lot of autists feel this way, I don’t want to speak for all of us! But I did, and I mastered masking. It sucked the energy out of me, especially as I wasn’t able to hide behind my best friend anymore. While in middle school, the price I paid was stomach aches, sadness, and on days where my friend wasn’t able to shield me, a fear of school. The price after living constantly without her by my side grew enormously. I developed an anxiety disorder and depression.

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In the second year of high school, things went so bad I wasn’t able to go to school anymore. I wasn’t able to leave my bed. My fear of death, of losing everyone I loved, my fear of life, all of these weakened me to the point I felt like I couldn’t do it anymore. I screamed for help, I went to every professional I found with my mom. Imagine sitting in bed at night, feeling like your death is seconds away, but you don’t want to die. You want to flee, but you know you can’t. Your brain just doesn’t know what to do. So, instead of having a panic attack lasting for a few minutes, my brain put me in a constant panic mode, which lasted for as long as I was able to fight. Which meant until I fell asleep, drained of all my energy. Fighting a battle I just could not win—no one could win. But I tried, over and over and over again.

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I thought it could not get worse, but it got worse. I ended up in a psychiatric hospital. No one there thought of autism. So, what I got from this treatment, which lasted for over a month, was I was just not trying hard enough. Their treatment methods would work, but I was just not willing to work with them. Even though I knew this wasn’t the case, I told myself they must be right, because they had power over me, and they were my only help. Or so I thought at the time. After the hospital stay, things got a little better. I found a therapist who wouldn’t use her ‘I am an adult, therefore I know better’ power over me, one who was calming and wanted to help. She also brought me to a group therapy, which showed me I am not alone. It helped. There was one thing, though—the voice in my head that knew what the therapist was trying to do was not really too helpful, and the other kids in the group were acting different. I suppressed this voice. It worked for a long time. I also started to help myself through art. I always loved art, and now I use it to express how lost I felt and I use it to make others happy.

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I wanted no one else, not even the worst person on the planet, to ever feel like I did. Art and thinking about my dream job, becoming a doctor and helping others, protecting others from what I went through—this is what helped me through the next years of school. I found friends who I protected from their own anxieties, who I allowed to completely use me so they felt better, who I let use authority over me so they could overcome their own PTSD. I always was hyper-empathetic, an autistic trait, and this means I felt their pain like it was mine. I felt their pain in addition to mine. So, throughout the lasting school years, I lied to myself, hid my true self, let myself be used by others, and also lived through a very exhausting school. We had laboratories for eight hours and more, we had eleven-hour days, we had weekly tests. While all of this was extremely energy draining, it distracted me from the pain, the growing hate about myself, and the fear like a big thunderstorm deep inside my chest.

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At the end of high school, I was so drained, so scared, and I really didn’t think much of myself. So, I didn’t apply for med school (which starts after high school here). I started to study biology. ‘Because someone so weak like me couldn’t possibly become a doctor, right?’ University brought freedom, a freedom I never felt during school, where everything was strictly planned and my voice, my fears, and my difference was ignored. I still went to my therapist and things started to normalize. I’ve been through a phase without her, because I came off of my medications in high school (supervised, but the doctor was very bad, so it was like an unsupervised way, with a big hit in my face), and started to listen to the voice which now had proof nothing worked. I tried it on my own, and it went well until my seasonal winter depression hit and I crawled back to my therapist.

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Now in university, I felt better. The thing is, though, as I discovered in my internship at a big pharma company, the freedom wasn’t there forever. I broke down under the pressure and stress. I hated being in a room with five other people I didn’t really know. It meant constant masking. I had a boss who was passive aggressive—which means enormous stress, if you can’t even read the cues when they are directly in front of you. I needed to use time stamps which controlled, exactly, the time I spent there. It was too much, too much power they had over me, too much stress, too much masking. After not being able to eat for a week because of horrible stomach pain (Remember when I had those in kindergarten? All those signs I missed…), and after breaking down from fear and disappointment about myself, doctors told me I needed to quit. I am not a quitter. I hate giving up, but even I knew it was not possible.

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After I went through this, I met with my therapist, and something magical happened. Through a coincidence, we were both lead to the topic of autism. In the next meeting we had together, we both brought it up at the same time. I still remember her words: ‘Now I know why nothing I tried ever worked for you.’ And so begins the story of acceptance. I finally found a community of people like me. I finally started to accept I am different. I started to embrace it! Then the stereotypes hit me. ‘You don’t look autistic’—I heard it over and over—even from professionals! I was misdiagnosed with a personality disorder and I almost gave up. It took a while until I got the help I needed. Then, around a year later, I found a professional in diagnosing autistic women and got my diagnosis. I am very happy. Now, I not only know I am different, I have a word for it and I can use it.

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After, I accepted I probably am autistic, but before the official diagnosis I started the journey of giving back. I applied for med school (it takes time to get into med school, there is a huge entrance examination, only 8% pass, I made it at the second try), and I started to use my art to help others. To heal, to not feel alone, or in a fundraiser my friend, Jordan, a below-the-knee amputee who is also on YouTube (Footless Jo), started and I made the art for. I always had a special relationship with art. To me, speaking is so exhausting and sometimes ineffective. Through art, I found a different way to communicate which helped me since I was little. I started selling my art and I started my first YouTube channel. I also began to realize a few things about myself. I don’t have to give up myself to help others. Self-care is very important, and once I cared for myself, it was so much easier to care for others. It’s okay to set limits! I know myself best and I am allowed to fight for what’s best for me.

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I realized so many cues I missed about myself. Autistic women often are highly intelligent (I am), they philosophize a lot (since I can think of! Remember the questions I asked my mom when I was little?), are often called ‘weird’ or seen different by others (numerous times! I can’t even count them!), are calm and shy (me! Me!), are very good at masking/adapting and hiding (yes!), are often passive and quiet (yes, especially teachers told me to speak more often), they often find a mother figure in kindergarten or primary school (hi, best friend!) and so on. I realized those fears were my body showing me it can’t do this anymore. I needed to stop overwhelming my system so much. This is why my fears were getting better in university!

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A lot of things changed in my life after the official diagnosis I only got a week ago. While I knew what was wrong and started all the changes—like my art channel, med school, a ton of new self-esteem love for myself—getting the official, ‘Yes you are right, you are autistic,’ was the start of a new project: A new YouTube channel, called ‘The artistic autist.’ I decided to use my knowledge, my newfound self-love, my growing knowledge about medicine, and my different form of communication, through art, to educate. I want to erase stereotypes, to scream out to the world, ‘You, yes you! You are not alone! And you are okay! Being different is fine!’ But it is also important to me to highlight while we autists are beautiful and amazing the way we are, being neurodiverse in a world full of neurotypicals is hard. My senses are very sensitive, and this world is so loud. This world is built for neurotypicals and hardly ever allows difference. Finding a company that would allow me a room for myself, where I can calm down and I don’t need to mask for awhile, a company that allows me a less hectic schedule with breaks, a lot of flexibility and freedom, is very hard.

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Especially if your disability is not visible. I know there will be a lot of people out there who think I am lazy, I am faking it, or I am overreacting. There will be people who see me have a meltdown because there’s too much information rushing into my system neurotypical brains can simply ignore. And since they only see how a door is shut or are just having a laugh with their colleagues, they will think I am overreacting, or I am ‘way too sensitive’ (oh, how often I heard this). They don’t know I am constantly aware of the clock ticking, the people typing, the colleagues moving, the screens shining, the lamp shining, them laughing, and the radio playing. Then there is this sudden loud noise, and it is simply enough. So, in an attempt to process the unprocessable, to defend my overworked system, I jump out of my chair, scream louder than everyone, so at least I have some power over the sounds I hear. I might get aggressive if you turn on me, because I am just done, and my brain has had enough. Even if I know you have good intentions, in the moment I just want it all to stop.

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After such an event, called a meltdown, something I now usually have only going on in my head (so while you see me staring into the nothingness, I see an image of myself losing it and screaming, ‘Enough!!’ and, ‘Stop it, please!!’ I was trying to be more normal as a kid, so then I stuffed those outbreaks into my head and now I only experience them there), I usually slip into a shutdown. This means my energy is gone and I just want to be left alone to recharge. I want to minimize the sensory input. Let’s focus back on the workspace: where should I go when I have a meltdown or shutdown? How should I calm down? Life will just go on for others after a loud noise. This is why there is something called an ‘autistic burnout.’ This is a lot, I know. Now you have a glimpse of my life, a life similar to other autistics out there. To help all of us, we need to spread information about us. This is the reason I am writing this, the reason I started my channel.

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I want to create a space for people who are like me, who think they might be autistic or for the amazing people that just want to learn. I want to create a loving and accepting space on the internet. I will share what I have learned, and I want to connect. If you are out there, thinking nobody can help you, nobody is like you, and you just had enough, please know you are not alone! There are so many people out there who felt or are feeling the same. There is a way out! There is a way to live a happy life, even with the struggles you are experiencing. I promise! Now you know a little bit about me. Trust me, there is a lot more to tell, but it could fill a book. I am not done, as you now know. This is just the beginning of telling my story. And to you out there, who feel the same as I felt: you got this! There is help! And you will live a beautiful life!!”

Courtesy of Sophie
Courtesy of Sophie

This story was submitted to Love What Matters by Sophie of Lover Austria. You can follow her journey on Instagram, YouTube, and her Patreon. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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