Monday, January 31, 2011

One mark

One mark. That's all I'm waiting on. One mark. But that one mark, it could change the rest of my life.

I finished my honours coursework late last year, and now I'm waiting on my mark for that. If I get the mark I need I'll be starting a PhD in four weeks' time. I've already been accepted which in itself is a huge honour, but acceptance is conditional upon that one mark. If I get it, it could mean a whole new life for me, in a whole new world. I'll be moving interstate, have a chance to work with other academics and become a part of an academic community. It's everything I've ever dreamed of and more. Plus there's a substantial scholarship. It'll mean financial security for the first time in my life. That, to me, is huge.

But what if I don't get the mark? What then? I don't really know. I'll kind of have to take it as it comes, and that really really frightens me.

And as I write this... the email arrives that gives me the mark. 83% - Second Class Division One. It's the second highest possible mark, after First Class. First Class is what I needed. After a phone call to the uni I'm now waiting on a call to find out whether or not I'm still eligible for candidature and scholarship... if there is something I can do to 'tip me over the edge' or if it's automatic exclusion. So now it's not one mark that I'm waiting on to determine my future, it's one phone call.

There are only two people who understand what that mark means, and who have any understanding of what it means for me and how disappointed I am in myself. I feel like I'm a total failure. The first person who understands is my research supervisor. He's the one who helped me to get to where I am. I emailed him, telling him my mark. He gave a very neutral response, simply saying that he'd be interested to see the markers' comments. The second person is my one and only close friend. I've emailed her but had to keep it short and not make it all about me... because she has had a huge day herself today and has so much going on in her life... I can't burden her with my problems right now. I feel so alone right now. As lame as this sounds I just really need one of those two people to tell me that's it's ok, it's still a good mark, and to tell me that I'm not a total failure. But that isn't going to happen. I'm on my own with this one. Completely on my own. And it feels lousy.

Thursday, January 20, 2011

Family on the spectrum Part 1

My step-brother has autism. He's just turned 20 and my mum and his dad have been together for a bit over three years now. He's on the low functioning end of the spectrum. Since hitting puberty he also suffers from undiagnosed mental illness - undiagnosed primarily because of inability to communicate due to autism - and has to be medicated for this. The doctors never seem to get the medication or the dosage right, so his dad has to 'play doctor' at times to adjust it to his son's needs. When too heavily medicated he will sleep all day and night making his dad housebound, he looses all interest in food (normally there's not enough food in the house to fill him up), and he becomes almost non-verbal. But when his dosage is right he is a whole different person, as has been the case in the last few weeks. At times it's a bit like having a 6ft tall 3yr old in the house. He's cheeky, says the funniest things, and wants constant attention... but doesn't know appropriate ways of getting it.

For the last few weeks every time I have seen my step-brother it has been pretty much the same scenario - his dad and he arrive and my step-brother makes a beeline straight for me to say hello and tell me a sentence or if I'm lucky two sentences about what he's done that day. Then the usual proceedings are him following me around the house trying his best to get attention and communicate but not having the ability to have a conversation. So he tends to state the obvious - e.g. "you're doing the dishes!", "that's a dog!", or ask a meaningless question where he knows the answer e.g. "what are you doing?", "what are you doing that for?", "why can't you ... [something he's been told not to do]". It drives his dad and my mum crazy because it's so constant. But it really doesn't bug me. I get it, and I feel for him. He wants so badly to communicate and have that interaction but he's not sure how. Oh boy do I know what that feels like. Not to his extent obviously, but do know the feeling.

The talking's fine, I'm happy to play along and acknowledge his statements, answer his random questions. He comes out with some pretty funny stuff at times too, and in the past week I've noticed he's been coming out with some really appropriate stuff which is awesome, e.g. asking my sister, brother and I who we barrack for when we were passing the ball around in the backyard, and asking me who I like in Shrek (I said donkey) then a few days later saying "you like donkey in Shrek". It might sound trivial, but seeing him go from barely keeping his eyes open long enough to eat a meal to this is absolutely fantastic.

There are two things that I find a bit difficult though, ironically both as a result of my own autistic tendencies. The first is the issue of eye contact. Whereas I have never felt a need for eye contact and only do it because I know it's expected (and like to keep it to the barely acceptable minimum), he has an overly strong need for eye contact. He constantly wants eye contact, and won't accept anyone talking to him without the eye contact as well. Which means I have to make that conscious effort with him more than I would anyone else, which really does wear me out at times. The second issue is that he often wants to shake hands or be hugged, and likes to get attention by tapping me (not so gently) on the arm or shoulder. Problem is I really don't like to be touched, by anyone. The only exception to that would be my three young siblings. I don't want to be mean and push him away, but it does make me really uncomfortable at times. I can usually get him to settle for a high five instead though which is pretty cool.

I've been wondering what it is that has made my step-brother sort of hone in on me lately. I'm not sure if it's that I pay him a bit more attention than most do, if it's just a primal instinct thing of knowing I'm a female roughly his age (a very real possibility), or if it's something else entirely. Maybe a combination of factors.

It amuses me that his father shows so many signs of being an Aspie. He's fascinated with trains (how steriotypical is that!), has a very literal, logical way of thinking, and is totally anal about the way things are done. I've seen him on a number of occasions have some trouble in social situations too.

My little brother also has many Asperger's tendencies. When he was younger he walked on his toes, his voice is always just a little too loud, he seems to think and view the world so differently from anyone else, has trouble controlling his emotions, is very intelligent but his grades don't reflect this, and is very often socially inappropriate for his age. Him and me either really click or really clash - depending on both our moods on the day.

Something else I find amusing - my sister isn't at all autistic, she's a great kid, a little lacking in confidence but very 'normal' for her age. There is one thing she has always done though - she hand flaps! I've never heard of a neurotypical person stimming in a socially unacceptable way, but my little sister does. She only does it at home now though which is good.

Needless to say there are constant references to the autism factor in the daily life of my family. It's not at all uncommon to hear any of us refer to another as 'being autistic' or to reflect on something someone has done with 'that's the autistic genes'. It's all in good humour. We're all very aware and accepting that autism is a part of our daily lives and that's just the way it is. So I'm not sure why I'm so scared to tell them that I actually am on the spectrum. I'm waiting until I have the official diagnosis, because somehow I feel like I need that to back me up when I tell them. As much as all of my family are affected by autism in our daily lives, I'm not sure how my mum will take the news that her eldest daughter has Asperger's. I'm also not sure that I want to tell her. Some things I need to contemplate I think.

Sunday, January 16, 2011


I'd like to invite anyone who's interested to check out the following Facebook page, and please join if it applies to you:

Aspie Women - Adult Diagnosis

I've set up this group in the hope of uniting women with Asperger's who were not diagnosed until adulthood or who are adults now considering the possibility that they may have Asperger's. There is so little info out there about this ever increasing group of individuals, so I thought it may be useful if we could learn a bit from each other.

Thursday, January 13, 2011

Can write a first class academic thesis but can't handle a job at KFC

I finished my internship in mid November 2010, and won't be registered to teach until sometime in 2011. So I did what was expected of me, I went and got a job to bring in some money until I start studying again and/or teaching. I got a job at KFC. As the manager knew my mum because she had worked there previously, there was no interview as such, it was just 'ok, you start as soon as your uniform comes in'. I did my first shift about a fortnight later. I psyched myself up, telling myself that the job didn't mean anything so I didn't have to stress about it, just turn up, do the job, and get paid. I walked in on my first day and without any training or anything was put on the front counter to serve. That meant simultaneously trying to work out where the various meals were on the computerised till, what to pack in the various meals, and dealing with general customer rudeness and stupidity. For my brain that thrives on order and knowledge, and with my trepidation of pretty much any social encounter, this was absolute hell. After a four hour shift I was completely emotionally and mentally exhausted, wanting to just crawl into a hole and stay there until the rest of the world just disappeared. I had no intention of ever going back, it was just too much. I lied to my mum, saying that they hadn't rostered me on again. Then she decided to intervene on my behalf, coming home a few days later to tell me I was rostered on for a five hour shift the following day. So I went, because I knew that was what was expected of me, and I couldn't find a way to explain just how hard it was for me. My second shift was profoundly worse that my first. Because I was so stressed/nervous about not knowing what I was doing my hands were physically shaking, so bad that I was dropping things, spilling chips etc all over the place. I packed many of the meals wrong, and had one particular customer abuse me because I had mistakenly given him extra chips. I couldn't help myself, I asked him why he was complaining about EXTRA food that he got for nothing? The manager wasn't impressed. Apparently that's poor customer service.

I didn't go back for another shift and I have no intention of doing so. I just mentally can't handle it. When my mum found out she gave me a lecture on how sometimes we have to do things we don't want to. As much as I tried to explain she just didn't get it. It's not a case of not wanting to, it's that for me that situation is unbearable to a point where it impairs my functioning in the rest of my life, and I just can't see that it's worth it for any amount of money, but especially not for $19/hr.

I communicate best in writing, always have, but even now I'm struggling to put into words how and why it's so difficult for me to work in a place like KFC. Any customer service job that I've ever had, I haven't lasted long. It's partly the poor people skills, and the fact that I forget to smile (I only ever smile when I'm genuinely happy, which obviously I'm not when at a job I hate), but it's also the fast paced multi-tasking that does my head in, especially when it involves tasks that I don't feel competent to do.

On the other hand, I have found one thing that I do incredibly well. I'm not trying to blow my own horn, so to speak, but for the first time in my life I can honestly and proudly say that I have one thing I enjoy doing and that I feel confident and competent in doing. That one thing is academic writing, and the research process along with it. Fingers crossed, I'll be starting a PhD this year. In 6.5 weeks' time in fact. The beginnings of what I hope will be a successful and enduring academic career. I know that I need to put my all into it, because it's what I want as a way of life, not just a job to go to to earn the money that puts food on the table, but something that does that and more. A career where I can make some small difference in this world and all while doing something I love and am good at. I can finally see where I want my life to lead, now I *just* have to pull out all stops to make it happen.

Friday, January 7, 2011

Info on Asperger's

Just a couple of links / references that I found useful in understanding a bit more about Asperger's. These are the ones that come readily to mind, I will add others at a later date:

On 13th December 2009 Talking Life discussed "Adults living with Asperger's Syndrome". I found it incredibly enlightening. This is the link to the podcast, though you would need to scroll down to find the appropriate episode:

A couple of books I have read (again) recently which I found really useful:

"The complete guide to Asperger's" - Tony Attwood

"Asperger's Syndrome: A guide for parents and professionals" - Tony Attwood

If anyone is reading this and has any links / references they would like to share please add your suggestion(s) in a comment to this post.

Thursday, January 6, 2011

Why I sought a diagnosis

There are three words that have echoed in my head, almost daily at times, ever since I can remember - "is that normal?" A question that I continually ask myself. I lay in bed at night running through the social encounters of my day, analysing and over-analysing what I said, what the other people said, wondering if I missed anything, wondering if I pulled it off, wondering about how I acted and spoke, if I appeared "normal".

See I've always know that I'm not 'normal'. My step-father often delighted in pointing this out to me, but even before meeting him I knew that there was something missing within me. Everyone else seems to have an inner instinct that guides their social interactions. They seamlessly glide through everyday life, intuitively knowing what to say and how to act. But I never have. Ok, realistically I'm sure it's not as easy as that for everyone, but what I'm getting at is I've always felt it was quite a bit harder for me that it is for most. It's like there's a connection in my brain that's a bit faulty.

I didn't have friends as a kid, but that really didn't bother me. What bothered me were the adults (teachers and family) who insisted that I should play with the other kids at recess and lunch, and that I should go to birthday parties etc like other kids did. I was always quite happy sitting by myself, it was only when an albeit well meaning adult tried to encourage me to interact with other kids that I had a problem. But I soon came to learn that that was what was considered 'normal', so by the time I reached primary school I learnt to find a group of kids who tolerated me without making too much fun of me, and I'd sit somewhere near to where they were playing so that the teachers were less likely to pick that I was on my own.

When I was 11 my mother explained to me that my (then) 3yr old cousin had been diagnosed with autism. The next time I saw my aunt she explained to me what autism is and described characteristics of it, and I can remember saying to her - "that sounds like me except worse!"

I'll talk a bit more about my school life and teenage years another time, as there's so much to say, so much that now makes sense to me.

As an adult I have continued to 'play the part', and most of the time I function successfully in daily life. But I've always got that question in the back of my mind, questioning everything I do and say - "is that normal?".

I started a Bachelor of Primary Education in 2007, and during that year we had a lecture on Asperger's. Although I'd know about autism for many years and retained the impression that I have many autistic traits, until then I didn't realise that it was possible for a person to go undiagnosed, and to appear to function 'normally' for all intensive purposes. That opened my eyes, and made me really wonder about myself. So much of it rang true for me. I read everything I could get my hands on on the topic, and the more I read the more my life made sense. But then I thought to myself, ok, so maybe it fits me. So what? I get by, I don't need a diagnosis. Plus I really really hate councilors (a whole other story there). So I just got on with life.

Towards the end of 2010 I finished my course. I had to complete a 10 week internship teaching at a local school. It was during that time that I realised I wasn't coping. Between that, the stress of finishing an honours thesis, and various other major ordeals in my personal life I just didn't know how to cope. I can walk into a classroom in front of a bunch of kids and teach, be completely comfortable and have a great time. But unfortunately the teaching profession also expects one to participate in social 'niceties' such as staffroom interactions. The emotional and physical exhaustion that that caused me was absolutely unbearable. I asked myself again, "is this normal?" and I realised that no it isn't. The career I have worked so hard for is being jepardised by whatever it is that is wrong with me. I realised that I couldn't let that happen. I had to do something. Again the question of Asperger's came to mind, so I took this question to my GP. It was the first step to understanding myself and the way my brain works, and to working with my brain for once rather than against it. It was the best decision I ever made.

Kick starting this thing... a bit about me and the purpose of this blog

So who am I and what is the purpose of this blog?

Well, I'm a 23yr old woman from Australia who began the process of being assessed for Asperger's syndrome in 2010. I'm still going through the process and haven't yet got the official diagnosis (due to the combined particular difficulty of diagnosing adult females, and lack of access to specialists in my geographical area), but so far it's painstakingly clear to myself and my psychiatrist that I fit the diagnostic criteria of an aspie and will eventually receive this diagnosis.

I decided to start this blog for a number of reasons, but mainly because it's so hard to find info on adults with Asperger's, and even harder still to find anything on women with Asperger's. I wanted to reach out to others like me, and being from a small country town there's very little support available in my area, so I figured hey, give the internet a shot! Everyone's different, but maybe by sharing my story with others and inviting others to share their story too we can all learn something together. Here's hoping!

Another purpose of this blog for me is as an outlet to talk freely about how this has and continues to affect me. Like many aspies I don't have a large group of friends to confide in and have deep and meaningful conversations with, and I'm pretty sure that my one and only friend gets a bit sick of the constant lengthy emails that she receives every time I feel the need to share my feelings, thoughts and experiences.

I intend to post regularly, and you can expect my posts to involve descriptions of what my life has been like as a girl / woman with Asperger's, links and references to information I have found useful in my search for a greater understanding of it, and my thoughts on it all. I want to invite anyone and everyone to make comments, but please be nice :)
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