Forgive me if I seem to stare...



Forgive me if I seem to stare but what you don't understand is that Other People, this tribe so different from how I feel, are endlessly fascinating to me. You may think you are ordinary, even a little dull, but to me you are better than an afternoon at the museum.

Other People are like education but with ice cream, learning the fun stuff like what they do when they argue (in public! joy!), or how they raise their kids or what they think is a good idea for tea. I like to see the way their face changes when something annoys or amuses them, I like to watch them as they think to themselves and don't know anyone sees.

Yes, it is creepy, I am creepy, but then so is the whole world. At least I am honest when I say I watch you and, take this as a compliment, I learn how you behave so I can behave also.

This is a good thing. To learn to pass along the street and not worry the people going by, to behave as those around me behave so that, in life, I can be friends with them and move through the world with the minimum of friction and the maximum chance of having fun.

It is good to watch, and yet I know it worries people. They feel uncomfortable, predated almost. I remind some part of them of dark places and cold nights with eyes unseen waiting for dinner. I remind myself of that too, at times.

Take it in good part, Other People. I watch you because I am fascinated. You are so amazing! I want to see what makes you tick. I want to see what you do when you are being yourself. I don't want you to see me though.

Let me not rattle your nerves with my unwavering stare. Instead, pass by as if I wasn't there and go on your way, unaware of me moving to let you by or turning a little as you brush on and into Canned Goods.

I leave with a lift in my step and a little more knowledge and you leave in innocence and only here for the shopping. This is as it should be.

And if we should ever meet in what is laughably known as real life, I will pretend not to stare and we might be friends. Don't worry, I'm quite safe and so are you.

Now, do that thing again when you laugh. Yes, that one, right there.


Amanda




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Why I'm still saying No.



"I've got too much on," I explain. Or at least I think that explains it.

There is a moment of considered silence, the kind where you know the other person is deciding whether to say what they think or let you away with it - again.

"Like what?" they ask, obviously determined to pin you down.

"Well, I had that thing last week," I say, waving my hand at the event which I spent 4 weeks building up to and am still coming down from on the other side.

Their face twitches like a fly landed on their cheek, except there is no fly. The fly is me, the one in the ointment, in the doorway, in the line of sight. That fly buzzing around, the one they need to keep in one place long enough so they can -

"You can still come," a sideways triumphant gleam. "That thing was last week, it's been eight days, you're not too busy!" Done, dusted, you're coming. Right?

"No!" I refuse, not even knowing how else to refuse than saying No. If I can fully explain myself, in person and face-to-face then it still isn't sorted because my explanations don't fit the standard Reasons to Avoid or Depart that most people keep in their head.

"It took a lot of doing," I try, clenching my hands and starting to pull faces. "That thing last week, it took a lot-"

"It was last week!" Exasperation sets in, as usual. "Last week," they empahsise as if I am five. "This week, you're not busy."

Busy is so relative! I'm not actually doing anything much, no, but I feel busy. The sense that I have lots of different parts of life clamouring for attention is very strong still, the come down from being stressed, anxious, overwhelmed and officially busy last week hangs around into this week too. I am still busy because I feel busy.

While I'm casting about for a reason they will understand and accept (other than No, which seems like an invitation for more pressure to say Yes), they take their chance to ice the cake.

"Anyway," they shrug, as if I am already gathering my coat to come, "it'll be fun!"

I stop in my tracks, not moving, frozen in disbelief that they could use the F-word in this way.

"Fun?!" I splutter, incredulous.

"Yes!" I get a happy face, oh joy. "You enjoyed yourself last time, after all your moaning!"

Last time I managed not to leave early, you see. It's always a mistake to show weakness by not walking out when you want to. Stay the full time one week and people expect it every week; don't run out crying one week, they decide you had a great time; don't beg to be taken home; they know you've finally got over your funny little social thing.

Don't refuse to come in the first place? You will be asked, pushed, pressured, kicked into the car and driven to the damn thing whether or not you explain yourself or claw, pitifully, at the window all the way there.

No, I want to say. I want to back away and say NO until it's listened to, a word with rights, an answer that is acceptable because it's the only one I can give.

"Hurry up then, or we'll be late."

They walk out the door, leaving it open behind them, confident I'll follow.

"No," I whisper, then decide whether or not to pick up my coat.

Amanda




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Is it bad to feel Special?



You know how you try not to be that kind of special? It's not that you want to be normal but being able to pass for normal usually makes life so much easier.

Far, far easier to stifle down your meltdown than run out crying and slapping the doors until they open; better to keep quiet than give in to the little voice in your head that desperately wants to tell Dave about his hair; terrible to find yourself making That Face because Liz has started explaining Windows to you again; awful to realise you have been making your own repetitive noise for the last five minutes to drown out the noise of your co-workers talking.

Yes, being that kind of special is for when you can't help it - as long as you can help it, you tend to keep it under wraps until you're somewhere safe. Then, like a tight belt, it can all hang out and you collapse and forget the rest of the world.

How galling then, to find myself having to pass for normal lately and need to put up with people discussing RT Teen with me, as if he is Special.

I've been trying to set up work experience for RT and have found a really great place where he can explore his Art and help other people with theirs. It's volunteering so no 'proper' job, but he's going to be learning all kinds of things, including how to deal with other people.

He does need some help. He has coping issues, he finds people difficult and stressful sometimes, he finds life the same, he needs guidance and care and someone who can tell him when to just quit it, if he swims in the cool sea of honesty too much.

But how disheartening to have him discussed like he is Special. Not as the eccentric academic who finds life a little perplexing, but as someone who is on the spectrum and needs help because people like him need help; 'they' need support, 'they' need guidance.

I know 'they' do, I know we do. I know I could have conducted each of these interviews and phone calls from the starting point of, 'Myself and my son are both on the autistic spectrum'. But would it have been the same?

How would the conversations have gone if I didn't do grown-up? After all, if you're on the spectrum and admit it in a professional setting, you immediately become one of the people needing help. It's a metamorphosis visible to the naked eye, seen in the face-change, the eye-flicker, the unconscious movements of the hands as people take longer to choose their words, either for fear of causing offence or because they want you to be able to understand what they are talking about.

Instead I have been the mother of a son on the spectrum and, in looking for help, have endured well-meaning 'they's and kindly comments on soft achievements and gentle results. The only meeting where he was fully discussed as himself was with an adviser who knew RT years ago and takes everyone at face value - Joan, you are a star!

My son is an academic with an acerbic style of honesty; he is an artist who transforms illustrations into digital images to an industry standard; he is an eccentric person who revels in meeting other eccentric people. He is very special, but is he Special in that other way?

Maybe it's not so much the wrongness of this word, but the rightness which bothers me? Am I asking too much for the world to view him as a highly-intelligent, creative person who needs a little extra help? Does his place on the spectrum mean he is automatically Special? Am I more fearful of the label than what it entails, for him and for me?

I don't know. All I know is that we have to go for a joint interview on Monday and be told lots of information about an opportunity to join a project for people like him. I am not ungrateful, I really hope it works out. But I hate that it's all set up from the premise that there are people like him: every person in the project will be someone's best beloved, with their own amazing qualities, lovable endeavours and awkward habits.

I have to put aside my worry about RT being treated as Special and, yet again, concentrate on not being Special myself. I need to be his advocate so I can pick up all the information and help him make a decision. I must not, must not! sit and stare at the person talking because of their teeth, or look at the calendar, or the window, or the fax machine. I must not allow myself to become bored and make my own entertainment, I must resist the urge to be funny.

And RT must have the free rein to be as Special as he likes, without me worrying over it or wanting to stand between him and the kindly people looking at him in that particular way.

In the end, if this will help him, does it matter how they refer to him or exactly what it is called?

You know, it does matter, it really does. Sometimes I think it's the only thing that matters because we all start with a name, a word which defines who we are when we aren't able to say it for ourselves.

And no matter what, our name should be the only label we carry around because that one was written in permanent ink and sewn on with love.

Amanda




My books and writing blog, with free stuff.
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