The World Through Different Eyes

Hi there, my name is Elana and I'm an eighteen year old girl from the UK who just happens to have High-Functioning Autism. I love to sing, play the piano, write, draw, paint, create and laugh! (It's the best medicine you know!) But my true passion in life is indeed music and I hope to go far someday.

First off let me introduce my family- yes including the animals! 

Mum... What can I say about mum? Hmm... She's really good at nagging ha-ha! No really, she's got to be the best mum in the world! She's the only one who hasn't given up on me, and in fact all of us. And she's the only one that still fights for us now. If it weren't for her love and determination then I don't know where I would be, honestly. Just so everyone knows that!

Louis is my fifteen year old brother who also has Autism. Most of his time is spent on the computer- He's a real computer wiz! (Much better than me!) But when he's not on the PC and he's in a chatty mood, we do have some very "interesting" conversations to say the least! Obviously he's my brother and he can get on my nerves now and then with his hyper activeness and "honesty" i.e-(And yes this is just an example.)

Me: Do you like this picture I drew? (Let's say it's a picture of a dog.)

Louis: ...The right front paw looks wrong... 

This isn't him being rude, it's just him being honest, although it can be a little upsetting sometimes, I know that it's not intentional. So yes, on the whole, it's all good.

Natashia is my thirteen year old sister who too suffers from Autism and now Epilepsy (which is still undiagnosed apparently- damn "professionals"!!) We always have got on extremely well despite the age gap, and are quite often cracking up about random things that most people don't find funny! We're just special like that!

Our Cats:

Litsy is my bestest friend in the world! She's stood by me and loved for just being me ever since we first got her when I was seven. She's my special cat!

She's eleven years old now and has a bit of a bald tummy for some reason, so go easy on her! Also everyone says she always looks angry... I don't know if that's true or not, but all I have to say is: she's not angry, she's just misunderstood like me! *Huggles her*

Ruby is the rebel cat who kills any small animals she can get her paws on, and who is the naughtiest cat in history! (I swear!) She bites, she scratches, she kills, she breaks stuff, she steals, she disobeys, she answers back and she winds everyone in the house up! And... she's part Siamese! Which is probably the cause, but certainly not any excuse for her behaviour! Yet strangely, we wouldn't be without her! (She's a cutie really, I just hate to admit it!)

Also she's a real poser, as you may noticed!

Sapphire... Well she may be Ruby's sister, but character wise they couldn't be more different... Sapphire is (unlike her sister) a pure Siamese- a blue point we think, as you can probably tell from this picture. She loves to eat, she loves to sleep and she rather dislikes strenuous activities, such as playing, running and even walking! She's very soppy, but hates cuddles... Oh and she likes to head-butt people in a strange, but non-vicious way. We have no idea why that is...

And finally, Hammy! She, as you can probably tell just by the name, is a hamster. But! She's the smartest hamster you ever did see, and the bravest! She almost got devoured by Ruby and was badly injured, but did she die? Nope! She had a cyst, it was looking bad and the vet had to drain the fluid a few times, but did she die then? Nope! She's a survivor! Either that or some kind of robotic hamster, or better still, an alien hamster! Ooh... *creepy music*

Um... anyway...

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End of introduction now and back to life with HFA...

Now, what you're about to read is just MY perception of things and MY experiences and feelings- We're all different!

People may look at this and think "Oh my gosh! Me, me, me! All this girl goes on about is how hard HER life is!" Like I said, I can only speak for myself and of my own experiences, we're different and see things in different ways. 

Then people might think: "She's probably just trying to get attention!" Well this is NOT the reason I set up this site! I am not trying to get attention or get people to feel sorry for me. What use is pity to me anyway? It doesn't help me or solve anything.

The real reason I'm writing this, and being so very open and honest, is so that I can hopefully help other people both relate and perhaps better understand this condition. Plus help those who also suffer from Autism or Asperger's to realise that they aren't completely alone in this world, even if they feel it.

By talking about my life, feelings, dreams, fears and experiences I hope to give people who know nothing about the condition an insight as to what it's like to be me. And by doing so this will hopefully give people a greater understanding of how I function- therefore giving people an idea of what it might feel like to have Autism, or just help people understand a bit more.

Whilst reading through you will come across bit of metaphor here and there, if you don't understand, don't worry. I'm better at metaphor and always have been, it's more my own language. Anyone who reads this who struggles with similar difficulties will most probably be able to understand it right away. But most of it I've written in a pretty straight forward way, so I doubt it will be a problem.

So yes, here we go.

How Autism Affects me in Person

Firstly, I know that having an Autistic sibling is hard from experience, but actually having Autism yourself is so much harder! Along with isolation and the fact that I can't get on and do stuff that I want to in life, there's also my depression that pulls me down. Sometimes I feel that I just can't face the world at all and I'll sit in my room and cry so hard it hurts. Then other times I feel I can do anything, but still don't have the confidence to do it. It's a really frustrating feeling to know that physically you can do pretty much anything, but in your mind you feel you can't. It's like being trapped in a cage- the door's wide open, but you still can't flee. Like a bird with a perfectly good pair of wings, yet still, no matter how much will power, still can't fly.

People say that if you want something enough, you'll go out there and get it. Well for people like me that's not the case at all! Fears are stronger than the want, or in fact need for something. Anyone who has Autism or Asperger's would know that all too well.

I have so many fears, I don't think I can name them all. But when I say "fear" don't think of a fear of the dark, or a fear of someone close to you dying, it's nothing like that. It's like a whole new definition of "fear"... There is usually no explanation or reason for this fear, it's just there and it does paralyse you.

It's not about strengths or weaknesses, it's simply about those invisible chains that hold you back. It doesn't matter how much you struggle and tug at these chains they still hold you down firmly. You try and try to resist them, but you just get worn down and battered because the invisible chains create invisible cuts- which ultimately create invisible scars, never to heal...

I Just Want to be "Normal"-

All my life, just the word "Autism" has brought me to tears. Even now, each time I'm reminded of my "disability" I feel like crying. It makes me feel so very sad and alone- like a reminder that I really don't belong. Along with hearing constantly: "She can't do this, she can't do that and she's eighteen!" That can't be helped unfortunately due to unhelpful "professionals", but it still hurts and it's still so hard to hear.

My mum has always told me to be proud of who I am and that being different isn't a bad thing. But no matter how many times she tells me this, I still don't feel any better. It seems that people have very set views on Autism and Asperger's. They seem to think that if a child (or adult) can't talk, sits in the corner and slaps him/herself and makes strange noises, then they are Autistic. And if they are verbal, intelligent and just seem a little shy and withdrawn, then they are perfectly fine. While I'll admit that some people do have severe Autism, it still makes me angry that people are ignorant enough to believe that!

I personally love being different and unique, but I would be lying if I said that I enjoyed life like this. Being different and unique is one thing, having everything that entails that is another, and that's what I find so hard. It's people's views and judgments that make life for me so very difficult.

People can only sympathise and accept things that they can see. If something's not visible, like Autism and like Depression, then it gets ignored. Even my sister's Epilepsy has been ignored and she collapses in the middle of doorways etc! This is just not the right attitude and has been the main problem all along!

My head's always screaming at me: "Be normal! Everyone else can do this and that and you can't! Pull yourself together!" And many people tend to join in because to an outsider they would think that I'm just an average Eighteen year old who's a little shy and too lazy to get a job or go to college. Either that or when they're told that I have Autism, they start patronising me and making me feel like I'm barely human...

No one can understand something that seems so damn simple to me! And it's now I ask myself- will people ever get it right?

Autism Runs in the Family-

I, along with actually having Autism myself, (and as I mentioned before,) have a younger brother and sister who are also on the spectrum. All our needs are very individual, but this is just because we're all different people. That actually has nothing to do with the Autism at all. Just like any average person, we all have our own likes and dislikes and also individual strengths and weaknesses. You can't say that I'm not Autistic because I hate routine! That's just me, and just like a common cold, everyone suffers with slightly different symptoms. People seem to forget that...

Anyone who has a family member who has Autism or Aperger's and lives with them 24/7 will know that it does affect your lifestyle a fair bit. There's so much we can't do for so many reasons which, of course, does frustrate me, and everyone else I'm sure, a lot. And now that my sister's developed Epilepsy and is on and off medication at the moment, we are even more restricted.

Going out "as a family" is one of the most difficult things. I now usually refuse to participate because it's so hard! Let me give you an example of an average outing to, let's say, a museum-

PA: "So what shall we go and see next?"

Natashia: *Is off in a dream*

Louis: *Is hyper and talking a mile a minute*

(People stare)

Mum: *Doesn't care and just focuses on Louis or Tasha*

Me: *Want's to be with some other family*

(Then it starts to get really busy!)

Tasha: *Goes into a strange drunk like state and seems completely out of it*

Louis: *Curls himself up on the ground*

Mum: *Stresses because Louis and Tasha are stressing*

Me: *Stresses because of everything and knowing that everyone else is stressed*

Mum: *Stresses more knowing that I'm stressing too*

PA: *Is completely oblivious*

(People stare more)

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So yes- although that may sound just weird, it's hell when you're in that situation! Especially when you're not coping with crowds or something yourself! It just makes you feel more self conscious and then, of course, you cope even less! 

Life at Home-

A majority of the time I'm sat in my room either on my PC, writing, drawing, playing my keyboard and listening to music etc. Since I am unable to get a job and don't feel confident enough to go anywhere alone at this time; I rarely get out anywhere. This makes me even more angry with myself as there was a time that I felt confident enough to go out that front door and walk down the road to the local shops- albeit it was a short period.

We do have a few PA's that come during the week, but for more reasons than one, I still don't get out much.
 
As for my mum, she's usually stuck at home doing paperwork and organizing and attending meetings with "professionals". Usually to do with education for my sister or her Epilepsy, as there seems to be a huge battle with this at the moment.

We barely ever have "family time" mostly because mum always needs a PA in for various reasons. It can be useful when we want to get out, but I personally get very tired of it and wish for some real "family time" without PA's because they are usually always less stressful. Even at weekends and we don't have PAs usually, we can't do anything together because my mum's either too tired, or still doing paperwork. This is something that my mum hates as much as I do. But right now, despite the PAs, there is barely any real support for any of us because we can talk and function normally to an extent and so we're dismissed yet again...

School Will Never be Something I Forget-

School for me was like putting me in a room full of cats- I was the mouse.

My school days now are officially over now, thank God! But they are not something I'll ever forget. Most of my memories of school are traumatic and distressing ones. Ever since I first started school it became noticeable that I didn't quite fit in or interact well with the other children. I remember quite often sitting quietly in the corner of the playground, feeling so lonely, yet not being able to interact properly. No one picked it up then and I thought I was just weird. I did have one friend, but she used to bully me and I didn't tell anyone other than mum because she was my only friend and I didn't want to lose her I suppose. Although I don't really remember much about what I thought or felt then.

I then moved schools when I was seven and was actually quite happy for a while. I made a few friends and I didn't dread school so much. However, I'm sure the other kids still found it hard to communicate with me because I was very good at shutting off- and still am actually.

Everything broke down, however, when I moved up to middle school. I personally don't remember much of it, but according to my mum, I was in a very bad way. So I was pulled out after just under a year spent there. That is when my "cat behaviour" began to become more of an issue.

After a year of having home tuition for a few hours a week and being put in a behavioral unit in between. I was finally put into a school that supposedly specialized in Autism. For the first year it wasn't too bad. I covered up a lot that I couldn't express at the time, but I did have some good times there. However, the real memories I have of that place are very traumatic ones. I don't really want to talk much about it because although it was a few years ago now I still feel very stuck there. I will say this though, I would NEVER wish for anyone to be where I was at that time.

 "Cat Behaviour"-

After I had been pulled out of my middle school I was apparently in quite a state. I remember a few things vaguely, but my memories before that time are actually much clearer for some reason.

The "cat behaviour" played a very big part in my life at that time. I basically used to turn into a cat when things got too stressful. As a nine year old it did seem a little odd to people, but then the average nine year old wouldn't have had to deal with the stress that I had to deal with.

I do remember following Litsy around pretending that I was her mum. I would study every movement she made and mimic it- even down the way she would wash herself. Then I would eat meals with her out of cat food bowls. I would follow her absolutely everywhere! She basically was my family in my world and at this point I was probably even closer to her than I was to mum. I could relate to her better than I could any human and I thought I was a cat.

At this point in my life, although I don't remember a great deal, from what I do remember there was a lot of tests being done on me. What tests, I don't actually remember- but a lot of "professionals" would come into the house. But whenever I got too stressed I would change into a cat and would only respond to someone if they treated me like a cat.

I wouldn't talk, I would walk like a cat and refuse to walk normally- in the middle of town. People would stare, but I didn't care. When people tried to talk to me I would meow at them and start washing like a cat. It would confuse them and they would eventually back off.

I've changed a great deal since then. I've found other ways of dealing with things, I've grown up. But inside, I'm still as lost as I have ever been.

I'm Fine, Right?-

So, I meet someone new- whether they're a neighbour or just someone who comes into the house for whatever reason. As soon as I say I have Autism I either get a weird look, or a "well you seem fine to me!" It's all very much- "Oh you look fine so you must be fine!" I think people just think I'm being difficult or lazy whenever I don't feel able to do something.

For instance, going to the shops alone, at the moment I can't do. I feel too much fear and too self conscious. That seems to have got worse as I've felt more pressure to go to college and stuff.

Whenever either myself or my mum has to mention the fact that I have Autism I can't help but feel guilty. People look at me in an odd way whenever it's brought up. They seem to think it's just an excuse or something. And then I begin to feel like I'm cheating my way through life, even though I'm being completely honest. I don't understand why people think I would lie about something like this! 

Loneliness is my Only Friend-

Making friends is something I've always found to be hard (as I mentioned earlier.) When I was young I didn't really need them, I had a younger brother and sister to play with if I ever got bored. However, like I said, at one point I did have one friend, but she used to bully me.

I suppose though when it comes to it, I've never really had any real friends. But still I've always  wanted them, I've always needed that company, but I've never been confident, or "normal" enough... And nowadays I just feel that I'm so different that no one will want to be my friend. Just a fear probably, and yes, me putting myself down is almost certainly a contribution to my isolation.

But when it comes to it, I've never really felt I could relate to anyone. When I try and explain my fears and my hopes and dreams, no one really seems to understand, they just move along swiftly. It's most frustrating, but really there's nothing that can be done...

No One Hears me, Though I'm Screaming Inside!-

This has been something that's angered and frustrated me for years now! Not only do people lack the understanding and compassion, but they also seem to lack the will to listen and at least try to understand! People don't seem to have enough time! I feel like I just want to scream at people sometimes- "WHY WON'T ANYONE LISTEN TO ME?!"

It's either this or that, there's never an in between- the world is never willing to meet you half way!

The World is Like a Jigsaw Puzzle- 

The world is like a jigsaw puzzle- NOT the people with Autism! The people are the pieces and our fate is the picture it creates. Almost every piece has a place and slots in somewhere- however some pieces are forced to fit into spaces that they will never fit into. This is not because they are "wrong" or "broken", they are simply different and are a specific shape. The more they're forced into the spaces, the more they bend and break. This is unnecessary!

People like me are basically shoved into society, even though they'll eventually fall apart without the right support. This is all because they appear to be all fine! I think it's so unfair! Would a person in a wheelchair be forced to walk 50 miles? I think not! Just because something isn't visible doesn't mean it's not there! Can you see oxygen? No! But we know for a fact that it's there, do we not?

People are very shallow and very judgmental and for anyone with Autism or Asperger's it's very hard.

"Boxes"-

As anyone with Autism knows, there is a very wide spectrum. While there are some people who suffer from Low Functioning Autism, others, like me, suffer from High Functioning Autism. But even still the spectrum is much wider than that, because it all depends on the individual. Like some people are noise sensitive (I can be a little bit and get worse when stressed.) Some people can't stand certain materials touching their skin (my brother can only wear really basic clothing because he can't stand the texture of a lot of materials.) Then some people can't stand the thought of dirt and germs (again like my brother- he has to wash his hands all the time and sometimes makes them very sore.) Some people find it difficult in crowds (I do very often) and some people have routines (I personally am the opposite and can't stand them, but both my brother and my sister have very set routines and become quite distressed if the routines are messed up in any way.)

But back to the "boxes"... It seems in life you always have to be put in a box and if you're not then you don't go anywhere. You're either "disabled" where you feel even more alienated and isolated, or you're "normal" and you feel lost, scared and very misunderstood. There is no in between and there is no real flexibility- that becomes obvious in a school environment. You don't get the help you need because hey, you can walk, you can talk and you can function normally to an extent. But inside you're falling apart and are just seen as unintelligent when you find it hard, or just shy if you're like me and would just smile and go along with something even if it terrifies you.

Eye Contact-

Some see too little, but I see too much, that's why eye contact is difficult for me. It's like you're seeing too much- like a guilt because you seem be able to see straight through. People have so much to hide and I often feel like I'm intruding almost. That is why I find it very hard to look into the eyes of a stranger- you just see so much. Strangely though, looking into eyes of babies or young children isn't even half as hard. Likewise, eye contact with people I know very well isn't as hard either. And of course animals are the easiest. It's almost like they understand because they can somehow speak your language and don't judge or expect anything of you.

I can usually give eye contact with strangers, but never keep it for too long. I'm very self conscious about it and sometimes find myself concentrating on giving eye contact rather than the conversation I'm having the person.

Come Into my World-

I'm sick of the world forcing me to be something I'm not- forcing me to fit into a society that won't accept me for who I am. For once I think they should come into my world and see how things work there! Then I'll try and force them to fit in and function properly in this world, then see how they feel!

Why can't the world meet me half way? Why should I have to change for a world that isn't willing to change for me?

In my world everything's beautiful and everything's appreciated. Everyone there pays attention to even the smallest of detail. The sky is a canvas, our dreams are the colours and the rivers reflect the paintings. The wind is our music, leading us away and the raindrops are our memories. And the sun is the fire in our hearts- the passion that keeps our world alive.