I’m back to blogging, here’s why…

I’m back to blogging, here’s why…

I have finally reactivated my blog after a years’ hiatus. I think I exhausted myself by throwing myself into this project, too much, too soon. Like most things, I burned myself out and gave up. I find myself doing that all too much in life; I find a project that I am excited about and become consumed by it. It will be my entire focus, it’s all I live and breathe for weeks, maybe months. Then one day, I wake up finding myself completely sick and tired of it, so I throw it all away, usually never to return.

This time, I feel a renewed sense of purpose. I was contacted by a friend of a friend who’s daughter is 13, autistic and suicidal. She was hoping I could speak to the daughter, and perhaps mentor her through her difficulties. Of course I jumped at the opportunity, being a teenage girl on the spectrum was immensely difficult for me, and anytime I get the chance to help out a kindred spirit I welcome it.

But I started thinking… this is the second time I have been reached out to for this purpose, and I pretty much live in a bubble. I don’t really have many friends or much of a social life (by choice), so my reach is very limited. Even so, within my tiny bubble I have encountered two suicidal, teenage ASD girls who find the struggles of dealing with high school, teenagedom and the spectrum entirely too much, and would prefer to end it all. I started thinking how many more of you are out there, going through hell, all alone?

I wanted to end my life at 13. I endured years of bullying… I even received a death threat in my locker in Year 8. I had struggles at home, a stepfather I didn’t get along with. I was miserable at school and at home, and at night would lock myself in my room and dream of ways I could end it all. I was alone and scared, and felt it would have been easier to just not exist. Life was too hard, every day was pain, like I was crawling over shards of glass to reach the end, only to wake up the next day and do it all again.

But I did it. I somehow made it through and you know what? As soon as High School was over, I never saw any of those girls again. Years later, some of my bullies even added me on Facebook and chatted with me as if nothing happened. The more thoughtful ones even apologised for any pain they had caused. We all agreed that we were kids, too immature and careless to understand the pain we caused each other.

My home life changed. I grew up and moved out. As an adult I developed a closer relationship with my mum. Once I was out of the house and away from my stepfather, he was no longer putting a strain on our relationship and mum and I became best friends.

And life went on. I had some fantastic experiences, I fell in love, I had a career, I bought a home, I travelled. There were still struggles, life is filled with them. But with each struggle, I grew stronger, wiser. I learned how to better cope with situations. Things that once debilitated me, suddenly didn’t feel so overwhelming. I slowly learned how to create my own happiness.

Life is like a video game… you start off as a low level character, earning XP and levelling up by exploring and battling mobs. It’s a grind, and it’s hard… enemies hit you hard and you don’t have any gear to help you. But if you keep going, you level up and get better gear. Things become so much easier when you’re higher level, perks and talents that help you in the game are unlocked.

If you quit the game at level 5, all you’ve known is how hard it all is. Keep pushing. The levels you unlock later are worth it.

xo Catherine

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Blogception… Great things on the horizon!

Blogception… Great things on the horizon!

I am very excited to announce that I am contributing as a guest blogger for Sprout Therapy Services! Located in Mornington, Vic, Sprout supports children with special needs by offering a range of services like occupational therapy and social skills classes. My post will be published to their site on Wednesday, I will post an update here once it goes live.

Another great bit of news I have is that I am finally enrolled to study! After the overwhelming feedback about my blog I have decided to pursue writing as a career. I was always hesitant to get involved in such a competitive industry because I always kinda fell apart when under any kind of stress, but I feel much more confident now that I have the right diagnosis and the tools to manage it. Instead of going the traditional campus study route I have decided to do an online degree, that way I can concentrate in a familiar environment in peace and quiet without the distraction and activity of a University campus.

I’m happy to post some positive news here, rather than the usual “I’m struggling with x…”. Life with ASD isn’t all bad, folks! I just like to highlight some of the things I experience so that people can understand what it can be like. I definitely have good times and I want to share those as well x

Girls on the Spectrum – Wearing Masks, Observing and Pretending

Girls on the Spectrum – Wearing Masks, Observing and Pretending

The various reactions to my blog were really encouraging. I had a lot of past and present friends and even a few strangers reach out and contact me with some really positive things to say. The most surprising comments came from my school friends:

“Thanks an insightful read, I never realized how difficult you had found things you always seemed to take everything in your stride…”

“…we had no idea it was so hard for you, you were definitely different, but quirky and an individual and I thought you seemed confident and smart!”

“From an outsider at school you seemed confident and very intelligent!”

“…you know I would of never of picked this at all as kids.”

“I do remember in the past that you were like a chameleon always changing very quickly and very dramatically..I wish I had realised how exhausting this was for you at the time..”

“…you were always a guaranteed laugh and interesting conversation. I never so much saw the smallest hint of any of what you’ve dealt with all that time.”

A common theme in these comments is that people had no idea how I was feeling on the inside, and that I seemed to do a good job of convincing people that I was confident and self-assured, even though I was putting on an act most of the time.

This made me think about the way that girls behave on the Autism Spectrum. There is a definite gap between the behaviour of boys and girls with ASD, which is why it is often harder to recognise and diagnose girls on the spectrum and why some girls with ASD go undiagnosed altogether.

“We think the social difficulties in some girls with autism may be less obvious. Some women with autism describe a strategy of copying somebody. They pick somebody in their class or workplace and they just copy everything about that person: how they dress, how they act, how they talk.” – quote taken from an abc.net article by Francesca Happe, Professor of Cognitive Neuroscience at the Institute of Psychiatry in London.*

This quote resonated with me, as this is what I have done my whole life. I struggled socially, as I felt so uncomfortable and nervous in my own skin, that I emulated the habits and behaviours of other people. I did this to try and fit in, to make myself not stand out as different, and to try and find an identity for myself. Little did I know that my real identity was being squashed this entire time – more on that later.

It took me many years to learn how to wear my masks. I have memories in kindergarten and early school of wandering around at recess and lunchtime by myself – not really knowing how to include myself in the activities of other children. Boys were easier to play with than girls, they were very game/play focussed and didn’t spend as much time discussing things that I did not understand. I did not care about the things that girls talked about, they spent a lot of time talking about boys, music, fashion, current pop culture, and often speaking negatively about other children. I did not understand how to include myself in these conversations. Mostly because I did not care about those topics, I had little interest in boys at this stage, I did not care about fashion or music in a broad sense. How could I connect with these girls on these levels? I couldn’t, so I often didn’t.

I remember connecting with my brother from a young age. My brother was very technical, into computers and gaming and lego and Star Trek and most things that boys enjoy doing. These are things I understood. Star Trek is set in a science fiction world with interesting alien characters. I connected with the characters of Spock and Data, one Vulcan and one Andriod, both characters intrigued and confused by humans and human interaction and on a constant quest to discover their humanity. How ASD is that? Also, in the Star Trek universe, humans and technology are as interconnected as fish to water. The thought of this was incredible to me. Computers are logical and follow a set process that I can understand. I am comfortable with computers. My first word as a baby was computer. What a world to live in! My brother and I bonded on these mutual interests and our relationship was easy. Looking back I feel like who I was with my brother was the most true to my authentic self.

My relationship with my sister, however, was much different. It was harder from the outset, as I was the annoying little sister to a teenage girl who read her diary, played dress up with her clothes and wore her makeup. The age difference alone was a hurdle to our bonding, but the fact that I destroyed a lot of her things was another. I remember she had a case filled with Barbie dolls and clothes that she absolutely loved. She was saving them for her own children. As a young child I would cut their hair and dismember them, not really understanding how to play with them like girls normally do. As I got older and my curiosity and social skills developed somewhat, I would instead practice social interactions with these dolls. I would watch and observe different people and social interactions at school, at home, and replay them with dolls. I would wear my sister’s clothes and put on her makeup and read her diary and pretend I was her. I didn’t realise this at the time, but looking back this was the beginning of my learning and rehearsing my real world reactions and interactions.

When I was young, I idolised my brother and we bonded over similar interests. As I grew older, my idolisation switched to my sister as I became more aware of my desire to fit in with other girls, as a girl. Playing video games and enjoying time on computers was not a common thing for a girl to do in my formative years, and I would get teased about being a “computer nerd” and a tomboy (now that video gaming is so prolific and popular among male and females alike, I like to think I was before my time :P). I soon realised that if I was going to go under the radar, fit in and not be different to others , I would have to learn to be a girl. This would mean changing the clothes I wore, wearing makeup, doing my hair differently, whatever the girls around me did, I copied.

I became very practised at copying over the years. Identifying the attributes I perceived I needed to fit in became so natural to me, like breathing. I would observe each person in a group, and learned to tell different personalities from one another. In order to interact with each personality, I would mimic their behaviour to not only hide my discomfort at social interaction, but to also on some level make them comfortable with interacting with me. My anxiety was not only for me, but for the other person too.

Using this method of interaction was fine one on one, but in groups was very overwhelming. Out of all the personalities to emulate, which one did I choose? Did I be the overtly confident popular child? The quiet, shy one? The funny one? I think this is why particularly ASD girls find it difficult to engage in group interaction. Not only is there an overload of sensory stimuli to process, there is also the internal struggle of knowing which mask to wear, who to emulate for a successful social interaction?

I think the common theme identified in the comments from my school friends above is a pretty good example of the different masks I wore to fit in. Some described me as the class clown. Others identified me as intelligent and confident. Nobody really saw the anxious, socially awkward girl I was inside. Judging by their memories and recollections, I must have done a pretty good job of pretending.

Now, in my 30’s, with a deeper understanding of who I am and my diagnosis, I am more comfortable in my own skin and have identified who I really am. I am the tomboy computer nerd. I wear comfortable, usually dorky and unfashionable clothes. I wear my hair in a ponytail every day and do not wear makeup. I don’t really put much effort into my appearance, I like to be comfortable and if this means not conforming to social trends and fashions, who cares?  I like my circle of friends, mostly online like-minded gamers. I like to make my friends laugh. I like to live a quiet life at home and spend a lot of time alone. This is who I am, and who I am happiest at being. I am actively trying to stop wearing my masks, as now the pressure is off to fit in. I am unique and ASD, and I can be who I really am and the the friends I make while being myself appreciate me for being me ❤

 

* More info can be found at: http://www.abc.net.au/radionational/programs/allinthemind/why-autism-spectrum-disorders-are-under-diagnosed-in-women/6570896