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

 

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First Post – An introduction to Everyday Autism

First Post – An introduction to Everyday Autism

My sister has been trying to convince me for years to write a blog. She believes that I have insight and that I articulate myself well in writing. “Yeah…” I would mumble passively. “Seriously!” She would exclaim.  “You should!” Followed by “*reasons why I should blog that I don’t remember because I zoned out one sentence in*.”  It has taken me a long time to understand WHY she thought it would be a good idea. She gave me reasons, yes. But nothing ever clicked. Nothing ever made sense to me that was the catalyst that rocketed me into action, until today.

I got a call from her about her son, who is on the ASD spectrum. Sis told me that her son had been disobeying the teacher in class, and had gotten into trouble, which in turn made him very upset. Sis asked me if I thought son’s punishment for the days when he is disobedient at school should be “no technology”.

No technology? No iPad, no YouTube, no Playstation, no Xbox, no computer. For an ASD child who’s Special Interest is technology and gaming. This would tantamount to torture!

I explained to my Sis that “technology” should not be a blanket term. Technology is not limited to one thing. Technology is all around us – what kind of technology do you want to limit? For an autistic child, if you say “No technology” that has to mean everything – Television, iPad, phone, the works. But is no technology an option, given our lives are filled with technology?  It is how many of us communicate, research, learn, shop, relax, entertain ourselves. Is limiting access viable or even fair? Where is the line?

We are a technological society. For my sister and many of her generation, technology is unfortunately a bit of a scary term. She is always recounting studies and articles shared on her Facebook page of the so called negative impacts of technology on children, and she is constantly worrying about how much is too much. I tell her to stop worrying and reading extreme articles using dubious studies and scare tactics and realise it’s not TECHNOLOGY that is some bogeyman – it is what TYPE of technology your child is exposed to that can either be positive or negative.  Limiting her son’s use of all technology as a method of controlling behaviour is fine, if it works, why not?  But what if he needs access to the Internet to complete a school project?  What if he uses a specific math app on his iPad to help him complete his homework? And, most specifically in relation to children on the ASD spectrum – what if technology is his Special Interest and he uses it to calm down and refocus?

As soon as she asked whether she should limit her son’s use of technology, as an Autistic I said no.  For me, technology is what I live and breathe. It’s my relaxing reading on my Kindle on the couch. It’s browsing Reddit on my iPhone while I’m bored. It’s playing video games as entertainment. It’s searching recipes for ideas on what to cook, and ordering my groceries online. Without a working internet connection, I feel lost. I crave that connection to information. It’s my relaxation, my rejuvenation, as well as my downtime. Taking that away would be torturous for me. My nephew is like me, technology and gaming is his Special Interest, and like most people on the Autism spectrum, our Special Interest is our passion, our entertainment, our outlet. Taking that away as a whole feels unnecessarily extreme to me. It’s like telling someone they can’t go read in a quiet corner, or have a rest on the couch after a long day.  My sister, the neurotypical, did not understand the connection her son and I have to technology and how it helps us with our Autism.

So instead, I  suggested to her thinking about the TYPES of technology she could restrict his access to in order to encourage good behaviour. I know my nephew plays a lot of “twitch shooters”, the play style of which could aggravate his ASD, stress him out and cause sensory overload. “Twitch games” are games where you have to instantly react to things, it’s all about quick reflexes and instinct. Playing those games for someone on the spectrum is intense – your fight or flight response is constantly engaged, your adrenaline is pumping, at any time an enemy player can jump out at you and shoot you dead. You might not even see them – suddenly there’s bullets and in an instant – you’re dead.  I personally try to avoid long exposure to these kind of games because it is very hard on my system. I get anxious, angry, prone to outbursts of emotion and get very tired from the constant strain on my system. I explained to my sister that if my nephew is spending a lot of his down time playing these kind of games, he might get aggravated, angry, violent, frustrated, and stressed. Whilst he enjoys it, that kind of exposure in long stretches is not good for his Autism or him (or anyone around him!). I gave the example of a shooting game he plays, and compared it to a gentle building game with soft music like Minecraft. I told her that perhaps she should classify his games and the different apps and technology he uses into categories – Low Stress, Medium Stress, High Stress – and limit his exposure accordingly. I told her that based on my own experiences and behaviour, she may find that his meltdowns are reduced and his concentration and mood improves.  While playing a gentle, Low Stress game, an autistic individual like myself or my nephew will relax and unwind and it will help refocus us and prepare us for more required social or educational activity. I told her that perhaps use the High Stress games as a reward – ie when he behaves, he gets to play Call of Duty, but only for 20 minutes – half an hour. When he misbehaves – no Call of Duty. He has to play something else. This will give the double pronged effect of calming him down (as he has been misbehaving – he may already be overloaded and playing something calming will help him relax) and being a reward system.

My sister was grateful for the advice and my offer to help her organise her son’s games into Low Stress, Medium Stress and High Stress categories and once again brought up her idea of me writing a blog and for the first time, I agreed. It surprised me that my sister didn’t understand why technology was so important, and that she did not think like me. Not being able to think from another person’s perspective is a problem of mine, I just assume that everyone thinks like I do and understands things like I do. Today I realised that maybe I do have something valuable to contribute – an insight into the Autistic mind – and that I may be able to help parents, siblings, partners, carers, friends and even people on the spectrum themselves to better understand Everyday Autism.