Climbing

Although I did a bit of bouldering as a student, I didn’t take up climbing again until 2010, and I wish I’d come back to it sooner – it has turned out to be so good for me and my inner aspie in so many ways:

Coordination
I can sew (apparently unusual for an aspie), and I can parallel park in the tiniest space, but I’m incapable of negotiating a doorway without sustaining injury; I have bruises on every limb, and no idea where they came from. When I climb, I’m forever scuffing my knuckles and elbows on the wall – which, by its nature, is abrasive – and it’s rare for me to get home without having drawn blood; but the desire to improve my balance and technical skill is the perfect motivator for accurate movement, and I find it incredibly rewarding to climb well.

Obsessiveness
There are few situations where being obsessive is a useful and socially acceptable asset, but belaying (basically: holding the other end of the rope) is one of them. Safe belaying requires you to do the same things, the same way, over and over again (from taking in the rope, to locking the carabina). Ultimately, your climbing partner’s life depends on you getting these details right. Knowing that my autistic traits are, for once, working to everyone’s advantage is rewarding too.

Concentration
There’s a lot of noise in my world: about 40% of it comes from outside, and can be drowned out with iPod + earphones; the remaining 60% comprises mostly random (sometimes obsessive) and frenetic thinking – inside my head, all the time – and is almost impossible to still (even when I’m asleep). At the club where I climb there is usually music to cover external noise, and the internal noise can be tamed by the need to pay close attention to what I am doing: it might sound trivial, but you need to know not just where all your hands and feet are at any given moment (sometimes to within millimeters), but where they need to be in two seconds’ time, and five seconds’ time… and so on – otherwise you’re off! I find it impossible to think about anything else when I’m climbing, and so the noise stops; regardless of how hard my muscles have to work, I can rest.

Exercise
Hauling your body off the ground can take a lot of energy and, when you’re hanging by your fingers, a lot of strength too; so climbing provides a good workout for both the cardiovascular system, and almost every muscle in your body! And, unlike some other sports, it’s not boring.

Socialisation
I can be around people without needing to be sociable. Apart from sorting out practicalities with my belaying mate, I don’t have to interact with others if I don’t want to; I can just do my own thing (climb the wall), and no one else has to care. (Yeah, it hurts when everyone – except me – is invited back somewhere at the end, but I’m used to that.)

Team Work
I did a 24h climbathon last weekend (a great excuse to drink lots of coffee), and between us we scaled 43,320m (that’s 150,000′ or 27 vertical miles) – the equivalent of seven of the world’s biggest mountains (the highest from each continent) stacked on top of one another. For once, not being a team player did not get in the way of contributing to a team effort. I liked that.

Anyone Can Climb
My youngest (who could climb out of her cot before she could walk) started wall climbing at the age of three, and is still loving it two years later. There are easy climbs and hard climbs. There are clubs and courses, and one-off tasters. Find your nearest UK climbing wall here!

The Ten Stages of a Forgotten Cup of Tea

You decide to have a cup of tea, but later on you find…
1. You forgot to fill the kettle.
2. You filled the kettle, but forgot to switch it on.
3. You remembered to switch it on, but it was still unplugged from the last time.
4. You managed to boil the kettle (twice), but forgot to get the cup or tea bag out.
5. You reboiled the kettle (three times), remembered the cup, and a tea bag, but didn’t get as far as actually adding any water.
6. You remembered to put the water in, but forgot to take the tea bag out.
7. You remembered to take the tea bag out, but forgot to put the milk in.
8. You remembered to put the milk in, but forgot to drink the tea.
9. You drank half a cup, but forgot the rest.
10. You find half a cup of cold tea in the microwave three days later…

How far do you get?

A-Z of Autism

A is for Autism, Asperger’s, Aspies, Ability, Abuse, Attwood, Acceptance.
B is for Bullying.
C is for Clumsiness, Communication, Colour, Crowds, Confusion, Claustrophobia.
D is for Detail, Diagnosis, Doctors, Depression, Disability, Distress.
E is for Education, Employment.
F is for Focus, Fascination, Friends.
G is for Genetics.
H is for Humiliation, Honesty, Headphones, Humour.
I is for Ignorance, Intelligence, Interest, Input, Isolation.
J is for Judgement.
K is for Karma.
L is for Light, Loss.
M is for Meltdowns, Misunderstanding.
N is for Noise, Nightmares, Neurotypical, Normal.
O is for Oops, Organisation, Obsession.
P is for People, Pretending, Planning, Processing.
Q is for Qualifications.
R is for Rejection, Routine.
S is for Spectrum, Synesthesia, Stimming, Stress, Solitude, Silence.
T is for Teasing, Texture, Taste, Touch.
U is for Understanding
V is for Validation.
W is for Weird, Wiring.
X is for xx
Y is for Yabbering.
Z is for Zero

I’ve tried to avoid using words that mean the same thing, or represent the same concepts, and have stuck to those that mean the most to me. I’d be interested to know what words best represent your own experiences of autism, either directly or indirectly.

Autism Awareness: a Datum

So I decided, if I am to raise awareness of autism, it would be useful to know what the datum is.

I realised it’s all very well talking to other aspies, parents of autistic children, professional care-workers, and others in the know – but if I wanted to know the level of awareness amongst the general population, I also needed to talk to the man on the street. Short of actually going out into the street (though I might yet do this) the closest I could get was to ask fellow drinkers in the pub. We have a good cross-section of the community in my local, and my responders included a working man, a middle class woman, and a member of the House of Lords (just come in for a quiet pint with his wife, poor bloke). I asked them plain questions, with no leading, correction or comments of my own. I explained that I wanted their perceptions, however prejudiced, ignorant or opinionated. This is what I asked them, and their replies are in no particular order:

If I said I didn’t know anything about autism, and asked you what it was, what would you say?
I don’t know.
I don’t understand it – don’t need to understand it; we’re all equal human beings.
You watch it on TV, and read about it in the newspaper… is it a children-related thing?
Is it a mental illness?
Autism isn’t the same as autistic… is it?
It’s is not physical or physiological, it’s a mental illness (like depression).
Autistic people have no need for emotional support.
Ooh, I’d have to think really hard about that one.
I know more about the mild form of autism – it’s a mental disorder.
It’s about control, OCD, neatness, need for order, emotionally challenged, difficult to mould.
They always have their own agenda.
They are emotionally challenged.
It’s a condition with communication problems – they can be non-communicative.
They can communicate through other channels, such as art.
They are difficult people to care for, because they live in their own world.

Can it be cured?
It can’t be cured, but it can be managed.
You can’t catch it. They’re born with it, aren’t they?
If it could be cured, I think autistic people could lead independent lives.
(No one else had any suggestions about cause or cure)

Do you know anyone with autism?
My daughter tells me she thinks my grandson has Asperger’s syndrome, but that’s not autism.
(No one else said they knew anyone with autism, and I’ve been a regular in that pub for two years…)

Do you think you could identify someone with autism?
No, but if I met someone with autism, I would read up on it – but I wouldn’t ask about it; that would be patronising.
I could spot it pretty quickly.
I wouldn’t necessarily be able to spot it, it would depend on how severe it was.
Thalidomide you can see, but you can’t see autism.
I’d know as soon as someone spoke to me.
I’d be able to tell after a while.

Do you think the onus is on autistic people to integrate themselves into society, or is the onus on society to help bridge the communication gap?
It’s a two-way thing.
Well, they can’t do it by themselves!
The onus is on society (most common answer)

Only one person asked me “what is it then,” and I answered his questions for a minute or so (I still didn’t tell him I was autistic – don’t know why!). He thanked me for explaining and said he was glad to have the knowledge and a new insight.

I suppose the best thing was that when I left, they were all talking about autism.

Where Society Meets Autism

I know this sounds weary, but I am tired of always being the one who has to adapt to any given situation. Because, although people are generally kind and tolerant of those with disabilities, most people don’t even know I have a disability (see previous post). Even when they do, they make no allowances; they still touch me on the arm, joke with me, and expect me to put up with the most god-awful environment without a murmur of dissent. Even my (otherwise supportive) husband groused at me recently, “why do you have to always take things so literally?” Er… hello?

Okay, I accept most people don’t know anything about autism (except what they’ve learned from Rain Man and reading the Daily Mail), and I can’t realistically expect them to understand all the issues I have to deal with on a day-to-day basis. But if they’ll go out of their way to help someone in a wheelchair (as they should), I wish they would do it for me, just sometimes. In short, I’m envious of the care shown to those with more obvious disabilities, and wish people could have a greater understanding of how autism affects my ability to interact. All day. Every day.

But, no. I’m expected to fit in, to shut up and put up with it all. Just as the wheelchair-bound used to face narrow doorways, head-high cash machines, and stairs. I applaud society’s gradual drift towards a greater understanding of disabilities, but I can’t help wishing it would be our turn sometime soon. Unrealistic, I know, but I would love it if people didn’t automatically think I was being difficult. I would love it if I didn’t have to explain to my son’s teacher that he was upset not because he’d been told off, but because he didn’t know why he’d been told off. I would love it if those with autistic children weren’t treated like bad parents. I would love it if people said, “Oh, you’re autistic, is the lighting okay in here?”

Feel free to make use of the picture!

So, Did You Grow Out of It?

I have, seriously, been asked this question. We were talking about the 2010 film The Social Network, and commenting on facebook-founder Mark Zuckerberg’s various aspie-type traits. I’d mentioned how I’d been “just like him” when I was younger (only without the genius), and that’s when my friend said, “So, did you grow out of it?”

At the time, I just muttered, “no.” I didn’t know what else to say; when faced with such ignorance (however well-meaning), I was speechless.

So, here are some answers (those I give, and those I wish I could give) to the responses I get to saying I have Asperger’s:

You? YOU have Asperger’s?
Yep.

Are you sure?
Yep.

But… have you actually been diagnosed? By a proper doctor?
Yep. This one.

Don’t you think you should get a second opinion?
Nope.

Oh, you mean Ass Burgers. Ha ha ha!
Har har har.

But only boys get Asperger’s syndrome…
Now you’re going to tell me all about someone you know whose son who has Asperger’s syndrome.

But you’re not actually autistic
Let me guess. You’ve seen Rain Man.

Well, it is a spectrum…
I know. You’ve seen Rain Man.

You obviously don’t have it very badly…
You wouldn’t last five minutes inside my head.

You must be very high functioning…
Yes, I can talk.

But you seem so normal…
Yep. Should have been an actor.

So, did you grow out of it?
Nope.

It’s only a label…
It’s better than all the other labels I’ve been plastered with all my life.

You’re still you…
No I’m not; I no longer carry the weight of failure everywhere I go.

It doesn’t need to change anything…
Oh yes it does.

You’re not actually ill though.
Do you need me to be?

Okay, so you have a disability, but you’re not actually disabled by it, are you?
How long have you got?

It won’t affect you long term though…
Hahahahahaha!

I know people mean well, but seriously. Why do they feel the need to try and make it better, usually by questioning the validity of my diagnosis and telling me everything they know about autism? You’d never say, “Oh, you have cancer? Are you sure you saw a proper doctor?” And go on to explain all about your aunt’s colostomy and her resulting irrigation-problems. Would you?

It would be much nicer if people would give credence to what I’d just told them, and resisted the urge to tell me all about the nephew of a friend who has Asperger’s (and how he freaks out at fireworks and likes to line up his toys), and everything else they’ve ever seen on the news or read in the paper. And then not tell me how unlike that I am.

Praise me for coping so well if you like and, if you really want to have a conversation about it, please don’t tell me what it’s like to have autism. Try asking me instead.

Living the Nightmare

I am almost always trying to achieve something in dreams, and other people are ‘getting in my way’, usually physically (physically blocking me), or bureaucratically (I’m sorry, madam, you can’t do that), or a combination of the two.

Dreamworld expectations are always realistic and reasonable – like I just need to get through a barrier to retrieve my rucksack (I never know how I come to be on the wrong side of the barrier), and my rucksack has all my stuff in it, including my car keys, and I have to get the kids from school, so I just need my bag… but the man won’t see that. The man will tell me I have to buy a ticket to get through the barrier, and the conversation will go like this:

Me: But I already have a ticket.
Him: I need to see it then.
Me: It’s in my rucksack, just over there.
Him: I don’t know that.
Me: Well if you’ll just let me get my bag, I’ll show you.
Him: You can’t come through without a ticket.
Me: But I have a ticket – how d’you think my bag got there in the first place?
Him: Your friend might have put it there.
Me: But I’m here on my own.
Him: I don’t know that. You’ll have to buy a ticket to come through the barrier.
Me: But my money’s in my rucksack too. I just need my rucksack.
Him: If you can’t buy a ticket, you can’t come through the barrier.
…and so on.

And then I’m trying to find someone to lend me the money to buy another ticket, and everyone’s looking at me like I’m deranged. And no one will help, because they think I’m a freak, but I’m just trying to get my rucksack, so I can get my car keys and pick up my kids, and I can’t even phone the school to let them know I’ll be late, because my mobile’s in my bag too, then suddenly I have a phone in my hand, but I don’t know the number, then I see it’s a smartphone, so I try looking it up on the internet, but there’s no data signal, and AAAAAARRRGGGHHH

That’s when I lose it. Big time. My worst nightmare: a meltdown in public. I scream and shout and cry and collapse on the floor, banging my fists and pulling my hair. Everyone looks at me saying, “there, we knew you were a freak…”

I get this dream, in various guises, maybe twice a week, and I always wake up with a sense of failure and loss and isolation that stays with me all day. Other people with Asperger’s syndrome might relate, and understand why this scenario haunts my dreams: in reality, it’s never that far away, and particularly when dealing with real-life jobsworths (such as our friend above), the nightmare sits on my shoulder daring me to lose control. The last time I got close to this, there really was a barrier – 2m high, and the guy wouldn’t let me though – so I climbed over it, literally*. And boy was he pissed. And boy was I smug.

One day I hope my dreams will catch up with my growing real-world confidence, and I can wake up feeling like a sucesssful freak instead.


*Being on my way home from the climbing wall, where far more technical climbs of 8m are the norm, his little 2m job was a synch. If only it always worked like that!

Finally, it All Added Up

 
I didn’t do well at school, and I never knew what I wanted to be when I grew up. It wasn’t until after my diagnosis (at the age of forty), whilst reading the list of suggested professions in Tony Attwood’s The Complete Guide to Asperger’s Syndrome, that I finally realised what I could have been. I wished someone had suggested [I’ll tell you in a minute] when I was thirteen…

But back in 1983, I was taking a revolutionary careers-assessment test… on a computer! The idea was that this computer… thingy… (controlled by a specially trained operator) would assess your answers to pre-designed questions, chunter away for several days, then spit out what it thought would be your best career choice. I remember struggling with the questions – it was a load of nonsense as far as I could tell – and I could only mutter at the end that “I don’t want to work with people”, and “I quite like animals”. The answer? – I waited days for this – that I should be a animal-testing lab technician. I can tell you, it took me a long time to forgive computers for that.

So, after spectactularly failing to be a Customer Service Advisor for the Nationwide Anglia Building Society (how’s that for inappropriate?! Lasted 13mo – my only ever ‘proper’ job), an electrical-components assembler (16mo), a gardener (1yr), a groom (2yrs), a car mechanic (2yrs) – some of these concurrently – I knew what I didn’t want to be. I should have looked more closely at what I did with my spare time.

I had forgiven computers when I discovered The Spreadsheet. How could I not, when suddenly I could generate colourful, accurate, gorgeous tables and graphs of everything and anything, in an instant: from the progress of my diet, through kakuro tables, and on to tracking the kids’ temperatures during illnesses. It should have been obvious all along, but it took until I saw that one word in the back of Tony Atwood’s book… Statistician.

It wouldn’t have been an obvious choice at the age of thirteen; I hated maths at school, thanks to the singularly uninspired droning of a woman whose name I have mercifully forgotten: drone drone sine theta over drone divided by drone drone all to the power of drone drone drone. Enough to make you rip your ears off. The following year we had some bloke who wrote so quickly it was all I could do to catch the notes – as they came back under the bottom of the roller blackboard – before he wiped them off again. And wrote down some more. Never had time to actually listen.

So, with my youngest now at school, I started a part-time OU-degree last month (BSc in Maths & Stats), and am pleased to report that – having watched my kids in a sweet shop a few days ago – I am as happy as that. Perhaps it has become my new obsession, to spread out the workbooks, sharpen my pencil, and dive into linear recurrence sequences, but it’s been a long time since I felt this content. Now I have the pleasure of my own (silent) study, with the Venetian blind swivelled to ‘closed’. I have coffee (latte, with chocolate sprinkles, no sugar), and a supply of almond slices. The room is devoid of vicious boys trashing my stuff, and bitchy girls (stage) whispering behind my back. Speedy-writing man died many years ago, Mrs Drone* isn’t here, and no one will give me detention for forgetting my homework (again). All is calm, and I am finally loving my education.


*I remembered her name, and Googled it, finding this comment about her: “…she got me threw my O Level.” Says it all, really.

Why a Good Friend is Like a Good Cup of Coffee

 
Having been brought up on a diet of instant coffee and bullies, I disliked both coffee and people. There was never any point giving either of them a second chance; why bother when you know you’re going to hate the experience? Besides, before I could ever try (or retry) anything new, I had to understand how it worked… in meticulous detail, and neither coffee nor people seemed worth the effort.

So I wish I could remember what peculiar circumstance took me out of my comfort zone and into Costa for the first time. The discovery that there existed something other than Nescafé transformed me from a tea-shop-bourgeois to a coffee-bar-chick. It was a happy occasion, and just reward for my bravery. (Oddly though, and despite my now-renowned love of the stuff, it took until today’s barista treated me to an impromptu latte-making lesson, that I realised I’ve never needed to understand the process to enjoy the coffee.)

People have taken me a little longer.

I had long-since got as far as realising that I don’t really hate people, per se. It was my inability to make sense of how they work that rattled me. I’ve always been frustrated by the lack of a blueprint or data-table to reveal the hidden workings of human interaction; there is nothing tangible for me to dismantle, inspect and put back together. If only people were more like coffee machines, I could understand them better, and perhaps be more trusting.

My aspie diagnosis was my Costa moment: it has enabled me to realise that the people I love are not just those who profess to understand me, but those whom I don’t feel the need to understand – people I can let be without having to know every detail of their every motive. It’s like not just letting someone else drive, but being able to shut your eyes while they do it: unnerving to begin with, but so much more relaxing once you get used to it… a bit like your first taste of good coffee after a lifetime of granules.

Education. Education. Education.

 
My Asperger’s diagnosis has brought many issues to the fore, not least my pitiful state of education.

Despite my love affair with learning, I have only the barest formal qualifications. I try not to be bitter about the delay in my diagnosis and that I received no support at school, either educationally, or pastorally: it’s hard to study when the girl behind is flicking Tip-Ex in your hair (again) and the teacher is laughing (again) because she’s too incompetent to do anything else.

I escaped the savagery of school at fifteen, with the minimum qualifications. My parents were horrified, in a predictably middle-class way, and packed me off to sixth-form college threatening withdrawal of all my human rights. Having had enough of being pushed around, I left home.

I stayed on at college though, and did manage to gain an A-level. You see, I still loved learning, it was just life I couldn’t cope with.

I lasted 13-months in the workplace (nuff said). After three years of self-employment, I gave in to the realisation that I had to get more qualifications; £90 a week was just not enough to live on. Even then.

And so to university. Again I loved the learning; but again I couldn’t hack the rest of it. I had a breakdown after three years, and dropped out with nothing to show for the bad taste in my mouth.

I’m still scraping a living. I sometimes wonder how different life would have been if I’d been diagnosed as a child, but I don’t believe in regrets; I believe only in moving forward from this point.

It’s taken me fifteen years this time, but I feel ready to give education another go; this autumn, my youngest will be starting school. And so will I. Wish me luck. I want to get it right this time.