It’s no Excuse

excuse noun /iks-kūz’/*

1. A plea offered in extenuation or explanation, in order to avoid punishment.
2. Pardon or forgiveness.
3. Indulgence.

ORIGIN: Latin excusare, from ex from, and causa, a cause or accusation.

Excuses are emotionally charged things, in search of absolution. They are what we offer when we’re trying to “get away with” not doing something we know we should have done. They carry a negative quality; I am at fault (e.g. I’m late for a meeting with a friend) and I regret it. As such, excuses are usually preceded by an apology, e.g.: “I’m sorry I’m late, but the traffic was terrible.” If I offer an excuse, it’s because I want you to say whatever I’ve done wrong doesn’t matter, so I don’t have to feel bad about it (because otherwise I will).

reason noun /rē’z(ǝ)n/*

1. Ground, support or justification of an act or belief.
2. An underlying explanatory principle.
3. Conformity to what is fairly to be expected or called for.

Origin: French rasion, from Latin ratio, onis, from reri, ratus to think.

A reason is a statement of fact, which carries no emotional charge; I am still late, but I am not seeking my friend’s forgiveness (even if I start with the socially essential apology): “I’m sorry I’m late; there was an accident and the traffic was terrible.” As it’s clear there’s nothing I could have justifiably been expected to do to avoid being late, the issue is not one for which forgiveness is appropriate, my friend will probably say, “Don’t apologise; it’s not your fault.” It’s a good reason.

This situation is completely different from: “I was late because I didn’t leave enough time to get through the rush hour jams,” in which case my friend (however open-minded she might be) would be justified in feeling annoyed, and think (even if she doesn’t say), “that’s no excuse; you know the traffic’s always bad at this time of day.” This is an bad excuse.

Of these two forms of explanation – the excuse (unjustifiable) and the reason (justifiable) – one is seen as good, the other bad. One requires forgiveness and the other does not. How any particular explanation is received depends on the wronged party’s own life experience and generosity of spirit.

So, when I hear someone saying “he [or she] is just using Asperger’s syndrome as an excuse for not doing it…” my hackles rise. (Sure, the aspie might be milking it to his/her own advantage; but aspies, by definition, are not inclined to manipulative behaviour.) In most cases, it’s likely that the other person simply has no concept of life on the spectrum. Particularly if the aspie “appears normal,” his/her autism is seen as an excuse, an unjustifiable reason, for being unable to do whatever “it” is.

Conversely, more visible disabilities (and the issues involved) are easier for others to comprehend. You have to be pretty sheltered (or cruel) to accuse a partially sighted man of using his blindness as “an excuse”. You’d never blame a deaf man for needing subtitles, or the paralysed for being unable to walk. These disabilities are imaginable: if I close my eyes, or stick my fingers in my ears, I can get some idea of what it is like to be blind or deaf. I don’t need an analogy to explain paraplegia. I can imagine the fundamental issues, and even with my limited “empathy”, I can see any of these disabilities would have a severe effect on my life.

But you can’t temporarily rewire your brain and pretend to be autistic.

Living with autism is hard enough without being made to feel I must justify everything I can or can’t do. Or apologise for it. So it’s important to keep educating others, to gently explain that – whatever their own experiences of life – I can no more “pull myself together” than a blind man can see. Asperger’s syndrome is not an excuse for the way we behave; it’s a reason.


I recommend The Man Who Mistook his Wife for a Hat, by Oliver Sacks, as a fascinating voyage into the world of neurological disabilities – conditions that are virtually impossible for the rest of us to imagine.

*Taken from The Chambers Dictionary, 12th Edition, 2011. I have omitted definitions irrelevant to this post.

A-Z of Autism

A is for Autism, Asperger’s, Aspies, Ability, 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.

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.

Hello, my name’s Leigh, and I’m an…

 
I’m an aspie. There, I said it.

It was on the 16th November 2010, at 1.05pm, when I was diagnosed with Asperger’s syndrome.
I cried.
It was a life-changing moment, but also a (albeit, harrowing) confirmation of a long-held suspicion, and not a surprise.

It has been a surprise for many others, though – those who don’t know me. “Well, it is a spectrum,” they say. “You obviously don’t have it very badly.”

They wouldn’t last five minutes inside my head.

From the age of three I’ve known I was different, and that I didn’t want to be. As I grew up, I studied body language, facial expression, tone of voice, and everything else that goes along with ‘being normal’. I convinced myself that if I just worked at it hard enough, I could be like everyone else. I got quite good, didn’t I?

The trouble is, the more skilled I became at pretending (which is all it could ever be), the more people expected me to behave ‘normally’. As I mastered increasingly subtle ways of interacting (you lot have no idea how complex a conversation is, and on how many levels), it became harder and harder for me to keep up. I became exhausted. Long term, chronically tired. Which is why I finally had to know.

Knowing is good, of course – it has to be – but, remembering that I’ve dedicated my whole life to being accepted into your world, having the door slammed and locked in my face is… well, it’s been a bit upsetting.

It took me two weeks to stop crying. I went through denial, bargaining, anger… I raged at everyone: the people at my school/university, for making my life hell – peers and staff alike (note to VJ: You bullied the autistic kid. How big d’you feel now?); my parents, for their attempts to correct me with ‘discipline’; and everyone else around me for having what I wanted. I’m through that now. You’re fine. (Please scratch anything I said/wrote to the contrary in recent weeks. Thanks.)

I’m calmer now, and can forgive myself for so many things: I’m not a failure; I’m not a crybaby; I’m not a fusspot; I’m not rude or uncaring, a stubborn little madam, or any one of a myriad of confidence-destroying labels. I’m an aspie.

Learning all about what makes an aspie is like a homecoming, and reading Tony Attwood’s Complete Guide to Asperger’s Syndrome, is like reading a Haynes manual for Being Me. I wish I’d read it thirty years ago. I wish my parents and teachers had read it… Anyway, I’ve decided. I’d rather be a happy aspie, than an miserable impostor.

So when I talk to much, don’t get your jokes, object to being teased, want the music turned down, wander off by myself, or whatever… please understand I’m not being awkward, I’m being me. I hope you’re okay with that.

I am.