A Mild Form of Autism?

This tweet was prompted by an incident at an autism-awareness event last month. Towards the end of proceedings, I spoke to the assembled company about Asperger’s syndrome being a hidden disability, and how my already considerable difficulties were worsened by society’s expectations of normality. I said I wanted people to understand that, just because I look normal and can (for short, exhausting, periods) put on a performance of normal, there is nothing mild about having Asperger’s. There were calls of agreement from the audience, an autism-friendly round of applause, and I went back to my children – their little faces glowing with pride that their mummy had stood up and spoken.

Next up was a woman who had a son with severe autism. Bristling, she spoke about how severe her son was, yes, very severe, and how you might see the two of them around town, and how you couldn’t miss him because he was so severe… Something inside me died. Even to me, it was clear I had offended her, about which I was mortified, but she had misunderstood me; she thought I was saying all forms of autism are the same, and that I thought I suffered as much as her son. I confess, I nearly burst into tears on the spot.

I hate conflict, and in particular, any division within the autism community; but there is a division, isn’t there? Right there: the devision between people with severe autism and people like me. I can see why their carers think I’m so very lucky: I can talk, I can drive a car, I am married and have children (and a realistic hope of grandchildren). I even have a job. What more could I possibly want?

For the next three hours I considered giving up autism advocacy. I questioned how someone with my lack of subtlety can possibly get across something as important as autism awareness to the general community? Hell, I couldn’t even get it across to the autism community. But a pep-talk from an aspie friend put me back on my feet; I took out my phone, wrote that tweet, and Twitter completed the rescue.

So, sure, Asperger’s syndrome can be considered mild when compared with severe autism. It can be considered mild in the same way as losing a leg can be considered mild compared with paraplegia. But do we refer to amputation as a minor injury? Do we go around telling amputees, “count yourself lucky you’re not paralysed”? No. We do not.

That severe autism exists, does not make my life any easier. And nor do my struggles detract in any way from the enormous difficulties facing severely autistic people and their carers. I’m a huge fan of positive thinking – I can talk, I can drive a car – and being positive helps me in so many ways. But it does not cure me. However lucky I might be in comparison with other people, I still struggle with my own, very real, issues.

So, please, don’t take what I say, then add a “yes but…” and list all the things that could be worse. Please just hear me: I’m not saying there is no severe form of autism, just that there is nothing mild about having Asperger’s.

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.

Detailing the Big Picture

This morning I did well. The small girl’s tooth is hurting, and I needed to tell her teacher about it.

Okay, here’s the backstory: many of the small girl’s baby teeth came through calcified, meaning the top layer of hard enamel is soft in places (like chalk), and wears away easily. The upshot is, regardless of how much care she takes of them, her baby teeth (particularly the molars) are rotting before they fall out. Fortunately, her adult teeth are coming through strong and well-formed, so the problem should not last forever; but in the meantime, she has a chronic problem with her teeth.

Earlier this year, one of her molars became infected. She developed a “gum boil” (where the infection bulges out of the gum below the tooth), which mercifully relieves some of the pain, although causes its own discomfort. The dentist said we could pull out the tooth, or “jolly it along” until it falls out of its own accord. The small girl is only seven, and this tooth is not due to fall out until she’s eleven, but he and I both felt we wanted to keep it going as long as we could. He packed a disinfectant-steeped wadding into the cavity and filled it. After a course of antibiotics the gum boil, the pain, and the worst of the infection had vanished. But we were warned it would return.

Six months later, her tooth has became infected again, the gum boil has reappeared and the pain has returned. So, yesterday, we went to the dentist again. He took us back round the decision-making loop (we’ll have to do this at least half a dozen more times over the coming years), but the original “jollying along” plan still looked like the best. He replaced the disinfectant wadding, refilled the tooth and told us to come back when it flared up again.

This morning, the gum boil has gone down, and her pain is less, but she has a bad taste in her mouth from the disinfectant (it will take a few days to wear off), and it’s distracting her.

As an aspie, I find it almost impossible to pick out those details that are important to other people, especially when I don’t have time to think about it: I’m unable to tell instinctively what someone else wants or needs to know. But this morning, like I said, I did well. We had already arrived in the playground before the small girl asked me to speak to her teacher. With no time to prepare, my brain wanted to tell the whole story, as above (because that’s actually much quicker for me than weighing up individual points and trying to second-guess how much value the small girl’s teacher will attach to them); but I stopped myself. Despite the whirling explanation in my head, I managed to say only the words in bold. Didn’t I do well?!

On Being an Autistic 3-year-old

My first school photograph sits on the bookcase in my study. I say “school”, but it was nursery school and I was just a few weeks past my third birthday. “Awww,” you might have said, or maybe “ahhh.” How cute!
 But you’re not saying that, are you? Because you can see the picture, rather than just imagine it. You’re probably saying, “Oh…”

I’m often asked, ‘at what age did you first know you were different?’ and I’ve always said, ‘about three’ but without knowing how I knew that. But – looking at this photo – I now know how I knew: that occasion is the first time I can remember not ‘fitting in’.

It’s not my earliest memory, but it’s a very clear one: each child was summoned in turn to the photographer’s chair, handed the puppet, told to smile, and had his or her picture taken – no doubt for the pleasure of our parents, and the profit of everyone else involved. I can clearly remember watching the other children go, knowing I didn’t want to. And not understanding why I had to.

Barring two snapshots of me as a baby (taken by a family friend), this photograph is also the earliest picture of me, so this occasion was the first time I’d been aware of being photographed. I’d never seen the man before, or his strange equipment, or the bright light, or the flash screen, or the flash… When I say “I couldn’t see why I had to have my photo taken” I wasn’t being stubborn; I was scared. But as a toddler, I couldn’t have begun to explain how I felt. All I knew was, regardless of how simple the situation seemed to my teachers, I DIDN’T WANT TO DO IT. As I write this, nearly forty years later, the memory of that fear and anxiety brings tears to my eyes. But they didn’t understand why I should be scared, and so my fear was considered irrational. Invalid.

They tried cajoling and persuading me, but I wouldn’t go. They left me until last, because I was being so “difficult”, and in the end they forced me. I was carried to the chair, sat upon it, and with the toy thrust into my arms… click.

The expression on my face says it all.

Afterwards, I cried. I bawled and wailed. I remember nothing else, except being firmly restrained. Why? What was the point of it all?

So, I knew I was different at a very young age – when I didn’t go to the photographer’s chair like the other children. And, no, I didn’t just want attention. I wanted them to leave me the hell alone.

I’m proud of that picture now; I still feel like that sometimes, but it shows me how far I have come – the years of struggle learning to cope as best I can. It also represents a lifetime of being told I was Difficult (amongst other things) when really I was just Different. It took another thirty-seven years, and a chartered clinical psychologist, to prove I was different; but I’ve known for a long time… yeah, even when I was three.

[A earlier version of this article was first published as a guest post on autismmumsdads in March 2012.]


You know that vacant look people have when you tell them you have Asperger’s syndrome? The look so very vacant that even an aspie can read it?

Why do we tell people about our autism in the first place? In my case, it’s because I want them to understand me better; I loathe being judged as difficult or callous or intolerant – when actually I’m making a pretty good job of coping. But I’ve realised I’m addressing the issue in the wrong way: when I mentioned Asperger’s to a new friend recently, the vacant look appeared and he quickly confessed, “I don’t really know what that is.” Apart from the instant honestly (which is refreshing), the scenario is frustratingly familiar; but I haven’t got all day to explain about autism and, let’s be brutally honest (I’m told I’m good at that), my friend isn’t really interested. If he wants to know more, he’ll ask, (and I’ll have to judge, or possibly ask, if he wants the 30-second answer, the three-minute answer, or the hour in the pub over a couple of beers.)

But really, all people want to know is how my having Asperger’s affects them. Some of my close friends are brilliant in this respect: they know to wait until I offer the hug first; they know I’m not trying to make a fuss by asking for the music to be turned down (I hate fuss. Obviously); they know that even a late birthday card from me is a sign of my enormous affection. But they have worked all this out for themselves, and bother to make these small consessions (plus many others no doubt). And I am grateful. Conversely, I am less stressed in their company, and they see more of the happy, relaxed, jovial me, which is what they want. The friendship is strengthened. Everyone wins.

Just a little bit of understanding, and a few tips, can go a very long way. But we spend too much time trying to explain what autism is, and how it affects us; we should spend more time explaining to others how it affects them, and how they can get the best out of us with even just a tiny bit of insight.

To this end, I have chosen a twitter hashtag, and am tweeting tips for better interaction, for example:

But it’s not just about what I want for myself – it’s about AS/NT interaction everywhere.

I am inviting you all, aspies and neurotypicals alike, to offer your own ideas on how we can better get on with each other. Please join in at: #iamaspie.

The Naming of Toys

               The Naming of Cats
               The naming of cats is a difficult matter.
               It isn’t just one of those holiday games.
               You may think at first I’m as mad as a hatter,
               When I tell you a cat must have three different names.

                                                                                  –T. S. Eliot

When I was a kid, my mother bred siamese cats. The queens were given classical Greek names, like Electra, Athene and Antigone. When Athene was done over by the local tom cat, and seven little black kittens appeared soon after, it was decided I could keep one. You might think I’d wanted to call her Blacky, but no. Too abstract. This particular kitten had a habit of sleeping in a tray full of germinating delphinium seeds on top of the night storage heater in the kitchen, and I knew exactly what I wanted to call her. I can still remember my upset when my chosen name, Seed Tray, was rejected by my mother (who probably wanted Persephone or Hestia), and we eventually settled on Delphinium.

My naming of toys was similarly pragmatic, but as no one ever needed to call for them in the garden late at night, I was given a free rein. Forever remembering the rejection of Seed Tray, I have always felt my children should also have a free rein in this matter (leading to a small rodent with the grand title of Edward Guinea Guinea-Pig), and their toys have names like Big Baby, Big Bee (we also have Bee and Little Bee) Dog, Blue Dog, Rabbit and Pink Rabbit. You might think some imagination had come into play when my daughter introduces you to Lolly, until you realise she couldn’t say dolly when she was two.

The small boy does have some slight variations on this theme. He also has Flappy (a pteranodon), Hoppy (a grasshopper) and the unfortunately named Horny (a triceratops). But I cannot think of a single toy in our house with a totally abstract name.

By contrast, my father had a rabbit called Honeybunch, and my sister’s toys had names like Crazy (a bear she thought looked a bit mad) or Barney (a knitted bear with no connection to the name Barney). Her dolls had sensible girls’ names like Susan and Rebecca. I was so jealous of her thinking up the name Barney, that I called my version (who had blue knitted dungarees instead of green), Berney. That’s as abstract as I got.

So herewith a gallery of toys from my childhood: back row – Horsey, Crazy (my sister’s mad-looking bear), Berny, White Dog and Rabbit. Front row – Bluey, Pinky, Penguin and Mousey. What did you call your toys?

One Giant Leap

I was thirty years old, and had done a lot of walking in the past, but standing at the start of the Coire an t-Sneachda path, facing the true wildness of the Cairngorm mountains for the first time, my confidence deserted me. This was big. This was serious. And like a frightened rabbit, I Couldn’t Do It.

In the ranger station, the log sheet recorded routes of those who had braved the tops that day. Oh, how I admired those magical folk who could make such a giant leap onto the summits, while I bottled a low-level walk into the coire. The ranger laughed, saying, “go, you’ll be fine,” and I found myself trusting him, even though he knew nothing about me or my experience. Unlike my own, I felt his judgement worthy of respect, and it was as though he’d given me permission to go. So I went. To my surprise, I survived. Heady with success, I wanted to do it again… and again. And again.

Twelve years on, I hike into much remoter areas than Coire an t-Sneachda. Places where mobile signals are like hen’s teeth, and I won’t see another soul for the duration. I must be totally self-reliant, knowing both what I can do, and what I can’t do: what gradients I can and cannot tackle; what river level is safe to cross and what is not; what weather conditions will compromise my route. These limits continue to grow as I push myself onwards, one small step at a time.

It seems odd now to think of that frightened rabbit on her first day in the big hills; these days, I’ll stroll into Sneachda just to take the air. I’ve done it so many times now, in all weathers, and I don’t need permission from the ranger any more. But that first walk was my first small step, on which many subsequent small steps have been built. Now, that frightened rabbit has become one of the magical folk, having turned experience to self-confidence, and many small steps into one giant leap.

Coire an t-Sneachda, 16th May 2012

What Colour is Monday?

According to Twitter, Monday is: red, yellow, blue, brown, aquamarine, gray, pink, the colours of each letter the word contains (black, white, blue, orange, red, yellow), bigger than Tuesday, male, and “I have no idea what you’re talking about”. Welcome to my world!

Days have always been coloured for me, and for many others it seems, though I was probably in my mid-thirties before I realised not everyone saw them like that. Some numbers have colours for me too, and some letters have tastes, but that’s all for me; but I wanted to explore this subject and find out what other people see, and I’ve been asking around. An aspie friend has different colours for the days: Thursday is black for her, which is every shade of wrong for me – I say ten is black, and Thursday is yellow! Seven is yellow too (though sometimes it’s purple). Friday is always purple (and @spiraldrain tells me coffee is purple too).

These associations are strong and unshakeable, and I have had mine for as long as I can remember. Even longer than I’ve had my “Colour Piping” learn-to-play-the-recorder book, which gives colours to musical notes in exactly the same order as my days, which is really, really freaky – but otherwise a total coincidence.

One of my number colours is very strong: blue for two and four. Others, I had to think (though the result is still well-defined): you can see them all in the picture, except perhaps eight, which doesn’t stand out; eight doesn’t have a colour for me – it’s not white, it’s clear (and I’m told it’s male as well). Ten, you’ll see, is black (and black, is most definitely not Thursday ;o)

And for me, the letters i, e, j, and f are sweet, the rest are sour, but my son associates letters with certain smells: he says the letter W smells like pomegranite, M smells of cinnamon, I smells of burning metal, and R smells like cow pats! (I guess I’m glad he spends enough time in the great outdoors to know what a cow pat smells like!)

I was delighted to receive the hugely varied experiences of others – from days with not just colours, but smells, tastes and genders too. @kitty_pickles wrote, “it’s a odd one & no mistake! Particularly when the words for colours are a different colour to the one they describe,” which reminded me of one of the tests on Dr Kawashima’s Brain Training game (for the Nintendo DS): it has you click on words of a certain colour, red for example, but the words themselves might actually read “blue” or “yellow” or whatever. I wonder if this task is easier or harder for synesthetes.

We also got talking about our view of time: for me, time is a flat tape stretching into the distance in front and behind me. I can ‘zoom out’ (to view a greater time-scale) by ‘floating’ higher above the tape. The tape is white, on a white background, yet its edge is defined. The days and dates are written in black. Now I couldn’t begin to draw this for you (it’s all I can do to describe it), but @Soundcube has the skills to illustrate his own view of time (see right).

What is your experience of synesthesia? Answers in the comments box please!

See also @myaspielife’s post, born from the same discussion.

Smarties: How do you Eat Yours?

The girls’ school PTA handed out tubes of Smarties last week with the invitation to “eat the contents, then return the tube filled with 20ps.” They’ve worked out that each tube holds £9.60 in 20p pieces, so ten-out-of-ten for the fundraising idea!
“Ooh, Smarties!” I said (being a lover all chocolate). “Can I have a tube?”
“Only if you promise to fill it up with 20ps.”
I duly promised, and was handed a tube.
“The question is…” someone said. “Are you going to eat them yourself, or share them with your children?” [Laughter]
“Eat them myself!” I replied. “I love Smarties. I line them all up by colour, and…”
But I got no further; they had frozen, like rabbits in the headlights.

In an age when it’s socially acceptable to talk about how you eat your Creme Egg (I bite the top off mine), the lining-up of Smarties is still enough to reduce three grown women to a state of abject terror.

Er… why?

Okay, I don’t know why, and it seemed I’d discovered yet another invisible line by jumping over it, both feet stuffed into my mouth as I went. (And this was despite two of the three women in question knowing I’m autistic, thus – presumably – expecting me to be a bit… odd.)

Now, I can tip a tube of Smarties into my mouth with the best of them, but lining them up by colour (then eating the extras until there are the same number of each ;o) is a simple pastime that amuses me, and harms no one. If you said you liked throwing your Smarties into the air and catching them one by one in your mouth, I wouldn’t bat an eyelid; people do that with popcorn, and they eat Creme Eggs in all kinds of ways. So, is it that I ventured to say that I lined them up? Or was is the lining-up that bothered them? I’m confused. Why is lining up Smarties such a social deviance?

Answers in the comments box, please!