Coming to Terms With Change

Life has been kicking my arse recently. I can’t think of a single person who, at some point or at many points in their life, could say this has never happened to them. No matter who you are, what you do or what you have there will be times when God/the Universe/life seems to be conspiring against you to bring you down. And once you’re down it will proceed to kick you in the balls and then steal your TV.

I’ve always found, though, that the reason this happens is that ‘the Universe’ is trying to make me see that I need to change something. My attitude, my choices, whatever.

So that’s what I’m going to write about today: Choices.

Decisions can be hard for some people. Others can make major life choices as easily as they choose pizza toppings but I am not one of those people, because decisions often mean change. Aversion, or inability to process, change is one of the staples of Autistic spectrum disorders, and it’s a horrible one to try and work with. I can remember going into my English classroom one morning in year ten to find that the teacher had moved all the desks around for an exercise, and I nearly had a panic attack. I couldn’t tell you why- logically I knew that nothing bad was going to happen because of it, that nothing was going to hurt me because the desks had been moved- I just couldn’t help it. I still have that reaction now, even for something as small as a change of dinner plans, but I have a tighter control over my emotions these days and so I don’t let it show.

(My point about the lack of rational response is possibly an important sidetrack: people with ASD rarely have appropriate emotional responses to anything. The extremes I’ve found are having no reaction to a traumatic/emotional event, through to overreacting to something that doesn’t even warrant a second thought. It can be hard to handle for me, so I can’t imagine what it must be like for someone watching it. When I go toward the latter, I give people full permission to slap me with their gloves. End tangent.)

Those examples I gave are instances of physical change, and are easy to avoid or to manage- I told my special needs support about it, and she agreed to make sure I was informed beforehand of any unusual arrangements. However, what I’ve been going through recently have been changes of an emotional sort.

I had planned to go to university at the end of this year. For the first time in my life, I thought that I’d get to do the ‘conventional’ route and go from A-levels to a degree, and maybe be normal. I went through a whole summer of angst and indecision before coming to the decision to do history at Bath Spa, and I was content with that choice even in the face of my personal tutor who tried to insist that I apply to more than one place. Well, I’m not sure that this week’s decision will make her much happier. A week ago I added to my UCAS application three courses at the University of the Arts, London: Two photography degrees, and a degree in fashion photography. Today, my parents took me out to lunch, and on the way they quizzed me: What did I really want to do? Did I think that having the history there, as a back up was a good idea? How committed was I to the idea of pursuing a career in photography?

I thought about it a lot. It was difficult, and scary, and a little painful because more changes? HELL TO THE NO. But they kept asking the questions and forced me to think about what I really want out of life.

I decided to take off the history option and to go for photography one hundred percent.

And then they said they would buy me a digital SLR, and I maybe blacked out from the shock a little.

The point of this is how they handled it. It was a tough, emotional choice for me to make and I can see how many parents could well take it upon them to make that decision especially when faced with a child who shies away from changes. The thing is that I believe it’s possible for anyone to overcome this, but you need to let him or her make their own choice. Help them lay it out realistically and see all the options, but make sure that at the end of the day you go with what they choose. The more you do this, the easier it gets. I promise. And with reference to the new camera: bribery should always be an option.

Because There is NO TIME for Thoughtfulness

Yeah, I haven't started my classics essay ("How much importance does Herodotus attach to oracles and predictions?") yet, and it's due in tomorrow. In my defence, my special-needs assistant hasn't rung me back to organise our sessions yet, and oh-my-hell I still can't take notes properly. How did I get to be an A2 student? How??

Anyway, I thought I'd write something really really short today. About my family. Because this is the Aspergers Blog, and my family? We are just full of the autistic-spectrum-disorders.

My Mum is fifty-seven. She's a career physiotherapist, who didn't go to university. She was the national life-saving champion five times. She makes the most gorgeous jewelery. She very defiantly has Aspergers, even without a diagnosis.

My Dad is forty-seven. He's a retired police inspector (on health grounds after a car accident), who's done various jobs in IT, training and coaching, memory techniques and, you know, stuff. We think that he might have Aspergers (at least, he claims this is true), but none of the rest of us are convinced because when Mum and I talk about how we think, he gets confused and frustrated, like most 'normal' people do. In my opinion (oh, I hope he never finds this...) he's a psychological hypochondriac.

My sister is two months shy of her eighteenth birthday. She's social butterfly who talks easily to people, has a big group of friends, is a huge girly-girl, and is generally the life-and-soul of any party. However. She's a mathematical genius, not through any sort of hard work (because: HA! Haha!) but because her brain just works that way. Emotionally she's incredibly male, if you know what I mean by that? Would rather not talk about her emotions, thank-you-very-much, etc. So, really, she's not got aspergers, but some days you really wonder.

And there's me. I love clothes, and make-up, and hair and yet have no idea how to do any of it properly. I play the same videogames, music and films over, and over, and over again until I've pretty much memorised them. Then I play/listen to/watch them again. I have OCD, and I knit to help this. I am a perfectionist, and as such I cannot keep things tidy. I don't know how to have a 'superficial' relationship, but once I find people who're also like that I have the best relationships of anyone I know. I'm kinesthetic and visual, which is a combination that pretty much never happens in conjunction with aspergers. I cannot. Do. Math, or science (but I can make a bomb. Hello, FBI!)

We also have a dog with cleanliness issues (among other things) and a cat who's just the most chilled-out guy ever (upside: utterly lovely, downside: drool!)

So yeah. That's my family. We have four TVs, six computers, and stacks of books and CDs. We cook, we take photographs, we watch Too Much Friends (also Simpsons). We don't communicate well, we fight, we cry, and we have the absolute best discussions on music, philosophy, personal development, art, math and the Internet.

We might be crazy, but we have the best stories.

Nineteen Years in the Making

Many of the traits that we recognise as ‘Aspergic’ were observed by Hans Asperger in 1944, but the syndrome wasn’t given official recognition until around 1994.

In 1994 I was six years old, and my parents could tell that there was something different about me; they’d heard about Aspergers Syndrome three or four years earlier when my Dad was involved in the early NLP research, and working with Tony Buzan, as well as from one of my cousins who was training to be a mental health nurse (her older sister is severely mentally handicapped).

No one believed them. I was labelled as ‘spoilt’, and ‘difficult’ and ‘anti-social’ as early as kindergarten. My teachers picked on me for being slow to understand verbal instructions; I can’t remember how many times I had detention (in primary school) for not completing my class work.

Unlike most Aspergic children, I showed no particular interest or skill in math (my younger sister is the mathematical genius), or science: the areas in which we are supposed to excel. Neither did I appear to have any interest or talent in art: the only creative subject I ever did well in was creative writing. The only subjects I ever enjoyed were history and dance- I was possibly the least co-ordinated child in any of my schools, but I started ballet age three, and after a few years of HATE I discovered that I love to just move.

At age eleven, after two awful months at senior school, my parents took me to see a psychiatrist because I was depressed. Shortly afterwards I got referred to a child psychoanalyst, who in turn handed me over to the nice people who test for things like autistic spectrum disorders (ASD), of which Aspergers Syndrome is one. They told us that ASDs get increasingly difficult to test for once you pass the age of about six, and that it’s almost impossible to get a concrete diagnosis after you reach twelve-years-old.

Six months later I had my diagnosis: Aspergers Syndrome. I had a label, and we had something official to take to my school and shout HEY, LISTEN TO US THIS TIME, JACKASSES.

They didn’t, and I left, less that six months after I began there.

My parents homeschooled me for two years. I wouldn’t be half the person I am today- wouldn’t have the ability to sit here writing this- if it wasn’t for the effort they put in during those years. It was a hard time, for all of us: Not only was I trying to learn how to be ‘normal’ (and I hated some of the things I had to learn, like making eye contact with people), but I was twelve and spending every single day with my parents (look me straight in the eye and tell me that wouldn’t have made you a little crazy?) As maddeningly frustrating as it was at times, I cannot thank my parents enough for those two years.

I moved from Hertfordshire to West Sussex just after I turned thirteen, and I went back to school. It was better than it had been, but still not great. I had three great friends, but they were a little, well, weird themselves, and I got bullied a lot. About halfway through the year, I made the decision to apply to the private school in the same town, the one that my sister had just started at.

It was the best decision that I ever made, and the two years I spent doing my GCSEs there are my argument against the people who think that private education should be abolished. The school were amazing. I was assigned an educational psychologist to see me every week and help me catch up with work that I hadn’t understood because it hadn’t been explained in the right way. They arranged for me to take an assessment that would give me extra time and a laptop in exams. I didn’t like any of the girls particularly, but that was okay with me. I didn’t have to worry about bullies, or getting into trouble because I didn’t understand the work I was given. I loved it. I passed all my exams, and even got two As. I went to college.

I had chosen entirely the wrong subjects. I didn’t know anyone going there. I wasn’t prepared for the amount of independent learning that we were expected to do, and so I dropped out after six months; but that was my own mistake. The college themselves were fantastic (and they gave me my own laptop for classes!)

I spent the next two years in a variety of jobs, mostly working at TESCO until I looked around and saw all the people who work there all day, every day, and probably will for the rest of their lives, and I realised that I don’t want that to be me. I applied for a different, bigger college, where lots of people I knew were going to be in the same year as me and in the year above me. I originally applied to do a vocational course in Performing Arts, but I changed my mind. I still do that course, but I take the two-A level equivalent, rather than the three, and I take modern history and classical civilisations.

I’m nineteen, nearly twenty. I go to college with people two years younger than me. I completely screwed up my AS exams. I have some amazing friends, and some not-so-amazing friends. If they didn’t know that I was autistic, I doubt that the casual observer would ever guess it. I don’t write anymore, I’m still terrible at math (and my sister is still a genius), but I take awesome photographs.

It’s been a long, hard road (that might possibly have detoured up some mountains), and the end isn’t in sight yet, but you know what? I’m normal. Quirky, and a little obsessive, but hey, we all have our ‘things’.

I want to help people who are dealing with Aspergers Syndrome, either themselves or with their children. That’s what all this is about. I want to know what you want to know. I’ll answer any question, no matter how big or small you think it is, because the books out there are great, but you can’t ask them personal questions, can you?

My answer probably wont be text-book, because I can only go from what I know of myself, what my parents tell me, and what I’ve read, but I’d like it to help.

Aspergers Syndrome isn’t the end of the world. It’s just a new one.