‘I’ve always felt like everyone else was given an instruction manual to life, but not me.’: Autistic student shares diagnosis, unmasking journey

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Growing Up

“I didn’t officially find out I was autistic until November 2021, a month after my 20th birthday. However, for the entirety of my life, I’ve known I was different and I do things differently from other people. I’ve always felt like a bit of an outsider, like everyone else was given an instruction manual to life but not me, or like I’m running on a completely different operating system and I’m trying to find out how the other one works. I’ve always managed to get through everything I’ve been presented with and make myself look fine while doing it, but I still knew this didn’t come as naturally to me as to other people.

little girl running around
Courtesy of Lauren Gilbert

I mainly started to realize I was different in high school, which I think is the case for a lot of later diagnosed autistic people. And this was mainly because the two people I only ever felt truly comfortable around were both also autistic. Both of them were boys that were diagnosed as children, and both of them were just as obsessed with video games as I was (if not more). The three of us were known for being very weird and strange, as others called us, and very nerdy too. We would loudly discuss whatever YouTube video or animation Jake had made lately, or what glitches Maycen had found in his latest playthrough of Skyrim, or I would go on and on about volcanoes and science. We were loud and slightly annoying, but it was the happiest I’ve ever been.

Being different at any time of your life always attracts negative attention, but I feel like high school is the worst time for it when you’re just starting to figure out who you are. Jake and Maycen were never bothered about this, but I always felt so angry and upset when people asked me why I was friends with them or, ‘Why don’t you do something normal for once?’

There were even members of the staff at school that viewed both of them as troublemakers who just wanted attention, yet all we wanted was to do our own thing and be left alone. I could never understand why people had to act a certain way or be a certain way in order to be liked or considered normal. I always wondered how the others weren’t bothered by any of the awful comments and the judgment they received at times, but I think it was because they knew they were autistic and slightly weird and they completely owned it and prided themselves on it. Even when people at school found our YouTube channel we used to play video games on and teased us for it, they were never bothered. I’ve learned so much from both Maycen and Jake over the years, and I think their outlook on life is part of the reason I’m so unafraid to express myself now through embracing my interests and being proud of my identity.

little girl playing video games
Courtesy of Lauren Gilbert

Different Interests

During my school years, I was very invested in my interests which have always been video games and anything science related. This means I excelled in subjects related to these at school and often had to be challenged further as I would ask questions teachers weren’t qualified enough to answer. My interests were a source of comfort for me, and I would be very upset if I couldn’t pursue them or if people got the information wrong about them. This meant I often got in trouble for interrupting and correcting teachers, and I would get so upset if I didn’t correct them that I got very close to melting down. My interests also meant people would make comments about how I was too weird to have friends because it wasn’t typical for a 13-year-old girl to memorize information about video games such as Black Ops 2 and Skate 3 and tell you at length about the types of clouds that were in the sky without you asking. I also played soccer at the time and eventually had to leave the team despite really enjoying playing, as the other girls excluded and bullied me for being different because I didn’t like parties, makeup was uncomfortable, and I didn’t understand social cues.

At school, because I was only really friends with boys, I was either called a lesbian (used as an insult) or a ‘slag’ because apparently, girls can only be friends with boys if they love women or if they want to sleep with loads of boys (I still don’t understand the logic behind that). There were also people considered more popular than me at school who noticed I often couldn’t understand sarcasm and took advantage of this by pretending to be my friend for the entertainment of my peers. They would pretend to compliment me and be interested in what I was doing but then talk to me like a baby and leave to go and laugh with their friends. Even during P.E. lessons, which I loved at the time and excelled at, the other girls would shout at me for no reason and exclude me, until teachers noticed and put me in the boys’ class so I could play soccer with my friends. All of this was really confusing at the time and I’m only just starting to realize now that I know I’m autistic how awful some of these people actually were for taking advantage of me.

Masking

As a result of all of these things, I started to mask my autistic traits to hide who I was because I just thought I was strange and unlikeable, despite discussing being autistic with my friends multiple times and doing some Googling. But I didn’t know of any autistic girls and teachers never addressed any of my struggles because my interrupting, anxiety, the lack of knowledge of social cues, panic attacks (which I now know were meltdowns), and deep interests were all fine because I could turn out grades and had a brilliant memory. Everyone said, ‘Oh that’s just Lauren,’ and probably thought of me as a little quirky or weird and moved on despite my autistic traits being there from childhood. I think I started masking as a teenager because for so long I’d been told how I must communicate, that my interests weren’t suitable for a girl, and that I couldn’t do certain things; whereas as a child, you’re free to do whatever and it’s fine because you’re a child.

little girl playing soccer
Courtesy of Lauren Gilbert

There was then a point as a teenager where I was very ill with stomach problems for the most part of a year. I felt sick every day, I lost my appetite and lost weight, and after a procedure I had done at the hospital, I felt very anxious all the time. For years I classed this as the point my mental health started to decline, and I felt very different from everyone else. However, after speaking to my psychiatrist, I realized at this time, due to the trauma of being ill and the hospital procedure, my autistic traits were amplified by the anxiety I was experiencing. In the process of then dealing with this anxiety, I subconsciously got much better at masking, as I started volunteering at a nature reserve for my Duke of Edinburgh Award to build my confidence. I learned what tone of voice I should be using and what small talk people like to engage in. I frequently felt uncomfortable and extremely anxious, but I shoved those feelings down and carried on until I appeared confident.

After my two years of volunteering and doing well in my GCSEs, I then went to college and got a job at my local CeX store buying and selling games and tech. At the time this was the perfect job for me because I only wanted to work somewhere where I was interested in the job and could use my special interests to my advantage. I was awarded employee of the month in my 2nd month working there, as people were impressed by my knowledge. It was just under a year into my job that I started to realize everything was too much for me; doing 3 A-Levels, having a part-time job, and learning to drive had really taken it out of me.

young girl in a nice dress
Courtesy of Lauren Gilbert

At work, I hardly spoke to anyone as it felt too hard to push the words out of my mouth, and I would force myself to speak to customers. It then got to a point where I would get so overwhelmed at work I would pass out. It would get too warm, I’d be tired from standing, I had to force myself to speak, and the music was always way too loud. Looking back, I can see this was obviously sensory overload and I was shutting down as a result. Things got worse to the point where I couldn’t get to the parking lot without having a meltdown, and I quit my job in January 2020.

family on a walk
Courtesy of Lauren Gilbert

Saved by the Pandemic

At this point in time, I also had to start thinking about my upcoming A-Level exams in the summer, but I’d spent the last 2 years doing so much that I just started to shut down and not be able to complete the work. I had been depressed for the past 2 years, so I just assumed this time of extreme tiredness, lack of energy, lack of motivation, and sadness was just more depression. But I was wrong, this was my first really bad case of autistic burnout. I was put on anti-depressants, and then I was saved by extremely unique circumstances — the pandemic.

For many people, the first lockdown was a time of fear and uncertainty, but for me, it meant I no longer had the pressure of my A-Levels, as exams were canceled, and I could sit at home and play Animal Crossing and have all the rest I needed. I found out I got AAB in my A-Levels and went on to study Theoretical Physics at Newcastle University in September. All had been okay up until that point, but the change of going to the university and seeing how it affected me so much worse than everyone else got me thinking. I started to realize I was so much different from everyone else around me, and I was actively making myself look different in front of my roommates so they would like me. I then got COVID in October, and there was an incident at the university in December which left me afraid to stay in Newcastle. I came home, and then the 2nd lockdown was announced, meaning I was saved again and was able to rest and be in a comfortable environment.

Over this lockdown and in the months after that, I looked into autism in more detail. I read scientific articles, followed people on social media who were public about being autistic, and also thought back on the events of the past year and realized I actually had no idea who I was anymore because I’d been subconsciously masking for so long. I decided to delve deeper and remembered the things I’ve always struggled with and many other times in my life where I felt misunderstood, and then everything suddenly made sense.

woman giving a speech
Courtesy of Lauren Gilbert

I was about 99% sure I was autistic, but also unsure if I had ADHD too, or not. I mentioned the possibility to my family in August/September 2021, and they were unsure because to them this kind of came out of nowhere, but they were and still are supportive. I was referred to a psychiatrist and fast-tracked through the process as I was desperate for help. I was assessed on the 12th of November, where I was commended for my detailed research and partial self-diagnosis. She told me she could comfortably diagnose me as autistic and also referred me for an ADHD assessment. I was then diagnosed with ADHD on the 11th of April 2022.

I think a lot of people might assume I would be upset after my diagnosis, or that autism or being disabled isn’t a good label to have, but for me, this diagnosis has meant everything. I went years never knowing why I felt how I did, or why I did certain things, and suddenly everything made sense and had a reason. I could finally access a little extra support at the university, I qualified for more DSA support and now I am going through the process of getting PIP and a blue badge.

Now that I’ve had so much time to reflect, I’ve realized a lot of my behaviors were just masking techniques and I’m trying to stop doing them. I’ve started being more open about my interests and sharing them with others. I’m more open about expressing my gender identity through my colored hair, my tattoos, and my clothes. I feel like I’m getting back to how I was at 11 years old where I didn’t care what anyone thought about me and I was proud to be weird and intelligent and passionate. I can now let my family know what my needs are and how they can meet them. Now I know that autism is why I am those things, and despite my struggles, it’s the way my brain is wired and I was built to be passionate and unique.

woman with her dog
Courtesy of Lauren Gilbert

I’ve always had this drive to take opportunities and do good things, which always manifested in me being a leader of various things at school and very involved with the student council and after-school activities. Now it manifests itself in the work I do at the university as the Disability Officer of the Student Union. I also run my Instagram, Facebook, TikTok, and YouTube for disability advocacy and education. I’ve done projects in my local community to spread accurate information and acceptance about autism, and now I’m a public speaker and working so hard to make society better for disabled people. I feel like I’ve found my purpose, and my purpose is to make a change and speak out against things that are wrong and advocate for myself and others. I wouldn’t be doing any of these amazing things if I wasn’t disabled, and yes I struggle a lot, but I wouldn’t have it any other way.”

woman giving a speech
Courtesy of Lauren Gilbert

This story was submitted to Love What Matters by Lauren Gilbert from North Nottinghamshire, England. You can follow her journey on Instagram and TikTok. 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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