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My story of being diagnosed with autism late

This guest blog post is by Melissa Koole, who is a model from the Netherlands, living and working full time in NYC. Her blog is part of an ongoing series on our site called "In Our Own Words: Living on the Spectrum," which highlights the experiences of individuals with autism. Interested in contributing your story to our blog series? Email us at inourownwords@autismspeaks.org.

Growing up with Asperger’s

It feels strange for me to talk about how it was like growing up having Asperger’s because I was diagnosed at 19 years old. It’s not unusual for people with Asperger’s to get a late diagnosis – they seem like neurotypical people behaving differently – but it does mean that neither I – nor my family – knew about the obstacles I could face while growing up.

I became aware of being different

I grew up in safe and stable environment, in the countryside of The Netherlands, where we ate a piece of fruit promptly at 4pm and dinner at 6. There were lots of animals around, and every day after school I would spend hours playing with them. Nature fascinated me, and I loved spending every minute of my time in trees, plants, grass and encyclopedias. I was that kid that knew the name of that weird bug, that would try and research the behavior of my favorite spider, that would eat grass and branches just to feel one with my fellow herbivore. Every night I would read 4 pages in my encyclopedia, even if it was about plankton which I didn’t really find that interesting (my COPD started early).

Starting from the age of ten I became aware of myself not being a neurotypical child. I started to feel like I didn’t belong in this world, which sounds weird but it was very clear to me. Even though I liked to socialize and had some friends, I started to feel isolated when kids began to form groups and I got left out. So I decided that I wasn’t going to let that happen again in high school (age 12), and started actively copying behavior of other (older) teenagers. Puberty is always a difficult time for everyone and I was no exception. People can be mean and in my effort to be accepted, I was finding myself in situations where I didn’t have the tools to navigate out of. I wasn’t aware of what ‘normal’ was for my age, and when I started to get bullied because of that, I felt like everything was falling apart. How could people not like me, while I had done everything to fit the norm? The only thing that gave me relief in my world of frustration and confusion was self-harm. Fortunately during this time I met my now-fiancée, Joost, at an age of 13, and he made me realize that I should and can be my own person. I still feel very lucky about how this turned out, as I really don’t know how I would have ended up.

The relief of having a diagnosis

I don’t recall having any major errors before turning 17, assuming that all the issues I had before were just connected to ‘puberty’. Problems with processing information appeared when I started going to university. Activities like taking a crowded bus twice a day were making me very stressed out. At some point everything was slipping through my fingers; I started pulling my hair out because of stress/frustration, my COPD was getting severe and errors came up frequently. It’s hard to describe how an error feels; it’s a moment of feeling paralyzed and powerless, I would become noncommunicative and just stare with my eyes wide open into the distance trying to take back control, usually while rocking myself. I realized I needed help.

I was so relieved when I got my diagnosis, it felt like recognition. Finally I wasn’t just some weirdo, I actually belonged to a group of people that were just different. It gave me clarity, belonging, peace of mind and support. Obviously I had my times while struggling with the question of what Asperger’s meant to me, and if it defined me, especially when I decided to work fulltime as a model. Would I really be able to travel the world, without my support system at home and without any sense of stability? But I know now that even with a disorder, you’re able to learn, adapt and grow so much. Within two years I’ve become so much more confident, social, flexible and relaxed than I EVER thought I could be. And even though my life can be more difficult and challenging, I would never change anything because being me is awesome.

As autism awareness has grown dramatically in recent years, many young adults and adults have learned the signs and felt there may be a connection between their feelings and behaviors and the symptoms of autism. Download our free guide, "Is It Autism and If So, What Next? A Guide for Adults." 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.