“Hindsight is a funny thing, isn’t it? I have often wondered if I knew what I do know about myself back then as a child, teenager, and young adult, would things be any different? If I had understood myself and all my challenges all those years ago, then yes, it would have saved me from a lot of trauma and the negative impact on my mental health. I would not have had to lose my own identity to merely survive in the world. A world that is not built for people like me. Most importantly, it would have saved me from myself multiple times. But then, if I did know back then, I would have been side-lined, told I couldn’t thrive in this world. It would be assumed I was less than. If I knew back in the late 90s and early 00s what I do now, I would not have attended a mainstream school, I would not have met my husband, got married, had babies, or had a great career. I would have been written off completely and forgotten about if I knew back then that I’m Autistic.
Growing up, I always felt lost and misunderstood, yet I wanted nothing more than to be accepted by my peers. I would watch my brothers make friends easily, which frustrated me as I could not quite figure it out, but I still tried. I have never been shy, yet I would rely a lot on other people’s social skills to get by. I would observe those around me to see what worked for them and adapt them to any social situations I was in myself. I enjoyed watching my favorite TV shows on repeat, reading, and collecting teddies, all pretty standard for a child, and that justification continued into my late twenties. Often, I was told I was bossy, stupid, or difficult. Back then, being Autistic was not a consideration, not even an afterthought because of the stereotypical views and damaging misconceptions of Autism. It would not be until years later that people really started to realize women and girls can be Autistic, too, and many of the assumptions they had made were wrong.
Until I was 26, I did not know much at all about Autism. My brother received a formal diagnosis, and up until that point, I had the usual assumptions some people have, such as it was more common in boys and that it affected someone’s IQ. But I was wrong and did not realize women and girls were underdiagnosed. It’s not a learning disability, you can have a learning disability and be Autistic, but that is only a small percentage of Autistic people. If I had solely compared myself to my brother, I would not have made the connection as we are different people; however, as his Autistic traits did not fit the stereotypes either, I started to learn more about Autism, and I was intrigued. The more I researched and the more I read articles and blogs from other Autistic voices, the more I saw myself. This made me feel quite confused at the time, as when I looked at the medical model of Autism, it did not fit with the lived experience I was learning so much about.
I decided to discuss the possibility I could be Autistic with my husband and my Mum. I explained the similarities I had uncovered with some Autistic adults and my doubts. I doubted myself because I could make eye contact, and I was not shy and awkward like Autism is portrayed in TV shows and the media. In fact, I liked socializing. I just could not do it for long periods of time as I always came away feeling drained and exhausted. I was also unsure whether previously being diagnosed with anxiety and depression as a teenager had any part to play in why I found things harder than I should. But knew that they didn’t explain why I was sensitive to sounds, bright lights, certain fabrics, and the way clothes fit me or that I couldn’t keep up with a group conversation and process the information in the same way as others did along with so many other things. What did start to make sense was that I could be Autistic. Although it is common to have anxiety and depression if you are Autistic. Autism simply means my brain works a little differently; it’s not a mental health condition and cannot be treated. It does not need to be.
I came across masking, and it really hit a chord with me. The more I learned about it, the more I felt I understood myself. I had never noticed just how much effort I put into trying to blend in and hide who I really was. It was suddenly clear why I felt so drained all the time and shut down as a result. What was even clearer was that I was using it to survive, which came at a great cost to my physical and mental health. I knew I had to seek the answers. With the support of those closest to me, I eventually asked my doctor to refer me for a formal Autism assessment. He too was a little perplexed as I always seemed confident yet admitted he was not an expert. After waiting for 18 months, the day of the first part of my assessment finally arrived. The full assessment was split into 3 different appointments covering family history, childhood, and the present. I was nervous throughout, and it was an emotional process to go through. There was a huge focus on my challenges and what I couldn’t do. It would take a month to get my report back, and, in that time, I tortured myself with the fear of not getting any answers. Fear that stemmed from misinformation and the stigma that to this day surrounds Autism, such as damaging and outdated functioning labels of high and low functioning that deny support and independence to Autistic individuals or lack of empathy. However, most Autistic people are highly empathetic. I kept asking myself would I ever find out why I was like this? What will happen next? Will I get support? What if I am not Autistic? Then what?
One chilly day in December, I got the call from the assessment team with the outcome. They confirmed after all the years of feeling lost, feeling different, feeling like an outsider, desperate to understand why I felt this way, I am Autistic. It was some of the best news I have ever received, and it will stay with me forever because it meant so much to me. It meant I had been heard, I had been seen, finally, at the age of 30, I had confirmation as to why I felt this way, the clarity on who I really was. I felt liberated and excited to start a new chapter of my life and learn about my authentic self. Apart from my husband’s and family’s support throughout the process, the only other thing that got me through it and gave me hope were Autistic voices. Lived experience, different experiences from each other, and the true diversity of Autism. Sharing knowledge and educating people on what it is really like to be Autistic. Without them, I wouldn’t have seen myself and found out who I really was. Telling people was hard yet such a huge relief and met with nothing but love and support. I began to unmask myself and stopped trying to be something I was not. I began to listen to my own needs and really look at my challenges but more importantly, I found my strengths in doing so. I came out of survival mode and really started to live.
Discovering I am Autistic later in life has been hard for so many reasons, yet it changed my life and has given me opportunities I never thought I would have. I changed my career and started to support Autistic adults in the workplace. Having had a successful career in HR and being Autistic myself, I had seen first-hand how employees needed to be supported to reach their full potential. I started working for a company providing support to Autistic children and adults and found my true passion. I knew I did not want any other children and teenagers growing up feeling like I did, being overlooked, denied support in school or college, and set up to fail. I did not want any adults out there searching their whole lives for answers, desperate for support but having nowhere to turn to due to lack of understanding. I wanted them to get the help they deserved, to live their lives, supported, happy and healthy. I wanted them to thrive. I had to stand up and be a voice. So, as well as supporting the people I worked with, I started writing and sharing my story to help those who felt lost. I would be their voice. Sharing my journey in blogs, articles, and social media, I started getting messages from women around the world saying they had read my posts on Instagram or one of my articles and related so much. It had encouraged them to be assessed themselves and discover they too were Autistic. My next goal is to finish the book I am writing about being Autistic and what it’s like not knowing until adulthood in the hope that someone like me picks it up and they too can stop searching for answers and discover who they really are.”
This story was submitted to Love What Matters by Wenna Fullerton of Oxford, UK. You can follow her journey on Instagram. 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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