My life on the spectrum- PART 1


Uploaded by CuriousColours on 25.07.2011

Transcript:
Hi, I have been meaning to make a video for sometime

but my camera wasn’t working properly

and neither was the webcam on my laptop

but it finally got fixed today so I thought I would take

the opportunity to make one

the reason that I thought I would make one

is because there are quite a few people

out there on You Tube making videos about Asperger's

so I figured I would make my own one as well

and give my perspective on it

I also have a blog so I thought it would like in nicely with that

Also, my main reason is because I was presenting at The Autism Show

(in London) last month- in June

and something came up which I would like to expand on

One of the people in the audience said...

it was actually the very first question...

they said "You don't look like you have Asperger's" "You don't look autistic."

I kind of made a joke about that but I wanted to say

...and talk a little bit about that...

just what it means to be on the high-functioning end of Asperger's

So, you know...I get that a lot...people say "You don't look autistic"

I don't tell that many people but they say...

"You can't be autistic, you're too sociable, you've travelled and all that"

And yes, I am sociable but what they don't realise is that...

the ones who do say that don't realise that

they see me when I am sociable,

they see me when I'm not making an idiot out of myself

and they see me when I WANT to be sociable

but so much stuff goes on behind closed doors

People don't realise how much time alone I actually need

or how much of a structure I have in my life

which is very different to a neurotypical person's life

and yes, I am very independent, I have done a lot of travelling

I have done a lot of stuff which, I think,

a lot of neurotypical people have not done

I have been to 31 different countries and I've lived in 5 of them

So I do feel very independent and very adventurous

The other thing is that....there is obviously a downside to that

I feel very lucky in many ways but there is a downside

I think that the main issue is that people don't realise

all these things....all these needs that I have, such as alone time

or when there is a loud noise and things like that...

and that shakes me up but people think that I'm exaggerating

but I am not...it actually physically hurts my ears

it still really affects my nervous system and shakes me up

or I don't know...maybe if I am very sensitive to certain things or...

I don't know what else...

there are so many things in my day which affect me

and I am kind of used to living with it

and I react in any way, it is seen as me being childish

or incredibly sensitive...or exaggerating...or whatever...

or making a scene...although I do not really do that anymore

So really, I don't want to be treated differently

And I appreciate that I look completely normal

And people are treating me like everybody else

but when they see me, that's very much me at my best

and you have to really consider what goes on behind that

behind this persona that I am when I am with others and socialising

Once a neurotypical friend of mine

we met up on a day...not so long ago

We met up when I was not in a very sociable mood...

I was completely disconnected and she said to me

she noticed straight away

She said "you're not...you" but it was me

This was me being completely spaced out

I mean, I wasn't in a bad mood or anything

but I was just not really, fully present

and just staring into space and was not able to take anything in

I was just in a spaced out sort of mood

the sort of feeling you have when you're really tired and not really present

but probably a little bit more than that

I was just in my own thoughts

And this is something that happens regularly

If I have 2 or 3 days when I am around people

then I just switch off and get into that sort of mode

Also I find...I think this is what gets to people the most

People don't mind seeing me spaced out because it's pretty harmless

But if I'm in my "alone time" and somebody comes

and they want to chat to me

And I've had enough...I'm full and I've had my dose

and I can't take anymore in

and I need to get my energy back

And they try to socialise with me or they try to talk about something

which does not seem very important to me at the time

because I am completely switched off from the social world

And sometimes when this happens and the person doesn't understand

that I am trying to do my own thing and focus on being in my own

I get pissed off and the other person gets annoyed with me

because I got pissed off and they haven't actually done anything wrong

So I think that affects people quite a lot

Because obviously socialising is a very natural part of the day

So when somebody doesn't want to do it,

it's quite a difficult thing to understand

for people, that I am not pushing them away

but it's because I need to be in my world to recharge

There are other things...certain things that I just won't do

I guess it's what normal people take part in on a regular basis

Generally speaking, I would rather read a book

I would go to the odd party...or to the pub

It is not a regular occurrence and it's not the most pleasant one