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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Getting the right diagnosis – TIPS

Getting the right diagnosis – TIPS

So I finally found a really awesome psychiatrist! It was hit and miss, I had to try a few before I found one who really knew his stuff when it came to Autism – and women with Autism. We clicked immediately, he made me feel comfortable and I had high hopes for a concise and detailed diagnosis. So, where to begin?

Fortunately, this time I came prepared. I had spent far too much time and money trying to fully explain to doctors exactly how I felt, and the things that I experienced. Too often I entered an appointment and immediately forgot everything I wanted to say. When I was asked questions I would totally draw a blank, or give a half bumbling explanation that didn’t nearly cover everything I wanted to say. At times I would get emotional or focus on a particularly troubling point in my life which led to diagnoses that centred around that one thing. Sometimes the psychiatrist would ask leading questions that took me in the total opposite direction and led to strange and unrelated diagnoses (as if I went into the appointment as an apple, and they told me I was a banana), and being shy and submissive I just sat there and let it happen without speaking up. This time I was determined to get everything off my chest, so I made The List.

THE LIST (aka Being Prepared)

The List was four pages long, my laundry list of symptoms, concerns, mannerisms and issues that I experienced on a daily basis. It took me two days and multiple conversations with family members and friends who knew me best. Prior to my initial psychologist’s ASD diagnosis I had assumed many of my behaviours were normal (doesn’t everyone hit their head when frustrated or burst into tears when something doesn’t go as expected?) so it took me some time to search through these behaviours and identify what was typical and what was different.

When compiling The List, I organised my points under headings such as Social & Interaction, Sensory, Relationships, Visual & Mind, Routine & Change, Verbal and Communication, Anxiety, Sleep, Memory and Day to Day. Because I am not good with categorising, I got my sisters to help me place each symptom in it’s related category. Here is an example of some of the symptoms on The List:

Social & Interaction

  • Can’t answer the phone – I need to recognise the number and be prepared to talk to that person. Even when I recognise the number often I can’t face talking to that person because I need time and energy to prepare for social interaction
  • Don’t understand or enjoy small talk – don’t see point of it, also don’t know how to generate small talk or respond
  • Find it difficult to maintain conversation – when there is a lull in conversation, I panic and don’t know what to do or say so I often say strange things
  • Don’t like going out, social interaction. Get overwhelmed quickly
  • Misunderstand social cues & social etiquette (ie: someone who often helps me will hint that they need help, I will miss this and the person will get upset and feel I have ignored them). I can be abrupt with people and am considered rude, especially when overwhelmed.
  • I hide a lot of my personal traits and try to act “normal”, this is exhausting

Sensory

  • Touch – lightest touch (eg slight rubbing on skin) is painful
  • Can’t handle tags, zips, buttons or seams in clothing – have to remove them before wearing
  • Only wear certain fabrics like viscose/elastin
  • Lights, sounds, movement, I am constantly on high alert (fight or flight mode)
  • Smells – a lot of smells make me sick – can’t be in same room when someone sprays perfume or deodorant
  • Can’t touch certain fabrics

Visual & Mind

  • Can’t “connect the dots” – struggle to understand how Point A gets to Point B without having the process explained
  • Don’t understand generalisations, can’t think of examples
  • Can’t categorize (I got help with this list)
  • Need things written down/visual eg questions, instructions, etc to enable me to follow so I can refer back as soon as I forget
  • Find patterns soothing, hypnotic – I will stare at patterns, my eyes unfocus and I lose track of time. Patterns often calm me

Routine & Change

  • I have a daily routine that I keep and I get anxious/overwhelmed if this routine is interrupted or changed, even by something as simple as the doorbell ringing
  • HATE sudden changes, I get anxiety/overwhelmed, have meltdowns – from childhood (eg: stopping off at the supermarket on way home from school when I expected to go straight home – this was incredibly anxiety inducing and made me frustrated and angry)
  • Hate unexpected visitor drop ins or late notice drop ins

Verbal & Communication

  • When I am overwhelmed (social interaction, processing information, etc) I will shutdown and become non-verbal. People talk to me and ask questions and I just can’t respond. I feel pain and confusion when they interrupt this shutdown time, like I am physically and mentally being torn away from my thoughts
  • Can’t verbalise or explain things – especially things about me
  • Can’t go “off-topic” eg: I am doing something or talking about something and somebody interrupts/distracts me by bringing up another topic, I cannot return to my train of thought or activity without severe confusion, it causes cloudiness and confusion to change topics
  • Lose train of thought midway through conversations, sentences, if I am distracted (by light, patterns, noises) or interrupted

Anxiety

  • Have to find a chair with my back to the wall, in corners, etc
  • Always have fight/flight mode engaged in public (exhausting)
  • When I have to somewhere new or unknown

Sleep

  • Have trouble falling asleep every night since I was a baby, can’t slow down my mind or stop thinking
  • Get fidgety, agitated, can’t relax
  • Sometimes in bed I get super energetic until I express that energy (eg: pushing and poking, laughing hysterically, jumping around, throwing my arms around until I am calm and fall asleep)

That isn’t the complete list, just a few examples under some headings to get an idea of the kind of behaviours I considered out of the ordinary. If you are particularly knowledgeable about ASD you may read this list and think wow, she’s super dooper Autistic, how did it take 31 years to get diagnosed? The answer is simple – ACTING. Some of my friends from over the years have contacted me since I went public with my diagnosis and they have said they don’t believe I am autistic, there is “no way” because I seem so normal. The thing is, they have no idea how hard I have worked over the years to appear that way.

“BUT YOU SEEM NORMAL TO ME?”

From a young age I observed people. I watched them interact with each other, with me, what they said and the mannerisms they exhibited. I learned what made people laugh, what offended people, what made them happy. I learned to mimic these behaviours because deep down, I had no idea how to behave. Nothing came naturally to me, I had to force every interaction, every conversation, even just walking down the street was an act. I had to walk like everyone else, act like everyone else, smile and nod like everyone else.

So of course, I was a social chameleon, mimicking the behaviours of my friends and always came across as just another normal girl. Extracting who I really was and separating that from the controlled behaviours that I had learned over the years was a part of the process in creating this List, and frankly would not have been as easy without my psychologist’s previous ASD diagnosis. I have learned so much about myself in the year since her diagnosis.

THE PSYCHIATRIST’S OFFICE

So, here I was sitting in the Doctor’s office and sweating profusely. I had never been here before so I was nervous and didn’t know what to expect. I shifted uncomfortably in my seat and tapped my foot. When the Doc asked me what brought me to him that day, I handed him The List, and told him that I struggled to remember and verbalise everything that I experienced, so I had prepared a list to help me help him in identifying what was wrong with me. I told him that in the past I had been been diagnosed with many disorders and illnesses, so this time I wanted to make sure everything was covered off and that he had a complete picture of everything I experienced. I also made it clear that while my previous diagnosis of Autism seemed to fit me best, I was not attached to any particular diagnosis or label, I just wanted someone to understand what I went through and hopefully help me in the best way possible.

I also told him I brought school reports ranging from primary school to high school, which I felt gave valuable insight into how I struggled as my school years progressed and social interactions became more complex.

Then I waited as he read The List. He underlined things, made notes, nodded, smiled, asked some questions, then after he finished all four pages he moved on to my school reports. He commented on how they all had a similar theme – “Catherine is distracted easily. She is intelligent and capable of so much more but she has trouble staying engaged”.

As my list was so detailed and my school reports gave a history, he said he felt like he knew me already, and was able to ask direct and relevant questions.As I had just spent days preparing all of this information, it was fresh in my mind and the answers to his questions came easily. For once I was quite concise and insightful, and once our hour was nearly complete he had quite the picture of my life that normally would have taken many sessions to establish.

Then came the diagnosis that I have been waiting for:

“Autism Spectrum Disorder with comorbid Attention Deficit Disorder, Obsessive Compulsive Disorder, Generalised Anxiety Disorder, Sensory Processing Disorder and situational Depressive Disorder”

Or, as I like to call it ASDADDOCDGADSPDSDD (not really). Every single one of those things completely and totally fits with me, and are the missing puzzle pieces. Finally I went into a doctor’s office as an apple and he looked at me said, you are an apple.

So there we have it, I got my Expensive Piece of Paper (if you’ve read my previous posts you may know what this means). I can now move forward and get the assistance I need to help me live independently and hopefully be much happier, now that I know exactly why I am the way I am.

 

 

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