The Boy in the Coffee Shop

Last weekend I watched a boy, aged about six, standing on the chair in my local coffee shop (Costa, if you’re wondering): his parents just let him stand there, calling out, and clearly disturbing other customers. Some people stared with open disapproval and muttered to their companions. Others – in true British style – pretended nothing was happening. I couldn’t help throwing glances in a wanting-to-watch-but-knowing-that’s-not-polite kind of way. I couldn’t help it: I saw the anxious look on his face, and found myself relating to every flinch, shiver, and sound he made. It reminded me of a previous visit when, as an experiment, I took off my headphones, and exposed myself to all the input – my autistic world of the coffee shop – and wrote it all down as it happened. This is what I wrote:

There are people talking and laughing, cups chinking, a spoon stirring in sugar, the waitress clashing plates together as she clears a table, chairs scraping on the floor, someone’s dropped something with a clatter, the door opens and closes, the cold air comes in – in contrast to the heat in here. If I look up, there’s a glare from the spotlights that hurts my eyes, and a glare from the window too. I can taste my last mouthful of coffee, even though I’ve swallowed it: I can feel the smoothness of the milk, the sweetness of the chocolate sprinkles, the bitterness of coffee. There’s a man two tables away with a tuna panini. It reeks, even though he’s sitting two tables away, and even though I like tuna – like “rose-scented” air-freshener, the smell is too strong to be pleasant; it’s too much. Someone’s mobile goes off DIDIDUDA…DIDIDUDA…DIDIDUDADI. The barista bangs the coffee holder BANG BANG BANG, he grinds more coffee URRRRRRRRRRRRRRRRR, he froths the milk WHHHOOOOOOOOSSSSSHHHHH. A child is whingeing on the other side of the room, GRIIIIZZMMMWHAA. Someone opens a bottle of coke, FIIIZZZZZZZZZ. There’s hubub. There’s music. The woman at the table next to me is gesticulating as she tells a story to her friends, and I can’t keep her arms out of my peripheral vision; it’s distracting me, which annoys me because I’m trying to concentrate on writing this. This is why I sit in the corner – the other two sides of me are occupied by wall; they don’t move, talk, smell, or nudge their bags into my space. (You never catch me sitting in the middle of a public space.)

And this is just the physical external stimuli. What about the other stuff? I am feeling sad and grumpy about an earlier argument, and feeling inadequate because of the the proto-meltdown I had as a result. I’m stressing about a complicated work project – not because I can’t do it (I can), but because I haven’t done it yet. My knuckle hurts where I skinned it climbing last night and I have a rope burn on my arm, which is sore (it drew blood). My neck is stiff. There’s caffeine buzzing in my head, but I’m also slightly faint from low blood-sugar (I forgot to eat). And I’m tired.

All of this drags my attention. All of it all at the same time – or at least in the space of a few minutes, which is the same thing to me. It’s overwhelming – I don’t have time to process each input in turn, and I feel like I’m drowning in it; but with headphones on (to cut out the sound part), a bit of sensory-processing space is freed to enjoy those aspects of Costa I like: the colour-scheme on the chairs, the comfy sofas, the warmth, the pictures (which are comfortingly the same everywhere – so I don’t have to process them anew each time I go into a different shop), and most of all, the coffee – medium latte, with chocolate sprinkles – which I adore.

So when you encounter a “weird” boy (or girl) in your local coffee shop – standing on the chair being “disruptive” – take a closer look: Does he seem anxious? How does he respond to sudden noises? Could he be autistic? Perhaps his parents are not ignoring him, but supporting him – letting him manage in his own way until he can settle to the environment, which he did, given time. So, please consider congratulating them on his behaviour (I did), because he’s coping fantastically well.

©Leigh Forbes

Meltdowns and tantrums: know the difference

I’m vexed at how the word “meltdown” is being slowly hijacked by the general population, and used to describe someone having a massive tantrum. Let’s be clear right from the start: an autistic meltdown is not a tantrum. Not even remotely. Not ever.

A tantrum is defined by Chambers (12th ed.) as “a sudden fit of childish, uncontrolled bad temper or rage”, and has the synonyms: temper, rage, fury, storm, outburst, fit, flare-up, blow-up, scene, paroxysm, paddy, and hissy fit. A tantrum is what people (aged two onwards) have when they’re angry about not getting their own way.

Meltdown (in the non-nuclear sense) hasn’t made it into Chambers yet, but online sources define it as “an emotional breakdown” (The Free Dictionary), “a very fast loss of emotional self-control” (Merriam Webster), and “an uncontrolled emotional outburst or a mental collapse” (Oxford Dictionaries). Synonyms include: freak-out, crack-up, fit, disintegration, collapse, tantrum, hissy fit, breakdown, angry, and crazy.

Sigh.

What is a meltdown?
Firstly, let me tell you again what a meltdown is not: it is not a tantrum, a hissy fit, or a mere loss of emotional control – any emotions I experience are the result of the meltdown, not the cause of it. In reality, it goes much, much deeper than that: a meltdown is a processing failure, like when a computer becomes overloaded with too many instructions, and goes haywire. A meltdown is a loss of cognitive control – I can no longer think. If we use the analogy of an epileptic fit as a hardware problem, a meltdown is the software equivalent.

What triggers a meltdown?
Many of my stress-triggers are the same as neurotypical people’s (anxiety, fatigue, illness, hormones, low blood-sugar, conflict, overwork, etc.). Then add the autistic stressors that neurotypical people somehow filter out: noise (particularly sudden loud noise), bright lights (particularly flashing ones), visual clutter (e.g. too much mess, traffic, people), frenetic activity, unwanted physical contact (including from my own clothes), any change or disruption to normal routine (including expected change, like going on holiday or redecorating), having to socialise (including with friends), all the noise in my head, etc. Throw too many of those at me at once, and I just cease to function.

Sometimes, it might look like the meltdown has been triggered by my not getting my own way, e.g. disruption of my plans; but in that case, the need to work out how to manage my day differently from how I’d planned (in order to accommodate someone else’s plans), on top of all the other things I’m trying to manage, becomes the final processing-request that freaks out the computer. It’s not that I’m unwilling to engage with the idea, I just can’t process it. Not at the same time as everything else.

What does meltdown feel like?
For me, the only emotions I feel during meltdown are extreme frustration, panic and fear. I am not angry – not in any way.

I’m frustrated by not being able to function properly (often because I’m failing to understand something, or make myself understood), panicked by being overwhelmed, and I’m scared because I can’t work out what just happened, what is happening now, and what is going to happen next. It’s not just that I can’t think straight – I can’t think at all. To begin with, the words I speak might stop making sense. I might roar, scream, shout, swear, and/or cry. I might pace about, and rarely I might throw things or hit things (only things, never people) – but even then… even if I appear to be in a rage… let me say this again: I am not angry.

Alternatively, I might go straight to the secondary stage (which I call ‘shutdown’ – like when a computer freezes altogether), where I can no longer work out how to speak or move. In this stage I curl up in a ball and become mute. I’ll probably close my eyes, put my fingers in my ears, and want to cover my head. I’m trying to shut it all out.

So you see, a meltdown is not a tantrum, and a tantrum is not a meltdown. They are totally different things. This is not to say some autistic people don’t have tantrums too, but it’s vitally important to know the difference.

A tantrum is a hissy fit, where the person is acting out his/her feelings of being hard done by. A meltdown is a loss of executive function brought about by cognitive overload, or in more simple terms – I’m temporarily unable to do anything that involves thinking, i.e. reason, remember, plan, problem-solve, or perform tasks: there is only chaos in my mind.

How to help me during meltdown (any hopefully other aspies too)

  • Please don’t panic – meltdown is a temporary state (like an epileptic fit), and I will recover.
  • I don’t need a doctor or medication – all I need is peace, quiet, and time.
  • If possible, get me to somewhere quiet – preferably with subdued lighting or no lighting at all. I will recover most quickly in silent darkness!
  • If there is a window, please close the blind/curtain.
  • Please do not touch me – very important (although for some people a hug will be calming).
  • Please ask other people to stay away, and try to ensure no one comes bursting into the room.
  • Please ask “what can I do to help?” but don’t press for an answer; many of us become mute in meltdown.
  • A glass of water will probably be welcome.
  • Please don’t offer or ask me anything else more complicated – I won’t be able to process the question.
  • You are dealing with a highly intelligent adult, so please resist any temptation to speak in a sing-song voice.
  • Please stay with me if you can, but at a distance, and please don’t try to make small-talk; this will seriously delay my recovery.
  • Bear in mind that once recovered, I will be exhausted, humiliated, and embarrassed, and will probably just want to go home. This is okay – once I’m functioning again, I’m perfectly safe to leave on my own.
  • I might not be able to express my thanks effectively at the time, so please don’t be offended if I simply walk away. I will be enormously grateful for your care and understanding.

This is a very personal subject, and one that’s close to my heart. Thank you for reading to the end.

©Leigh Forbes


Related posts
Living the Nightmare
Assaulted by the Detail
What’s Wrong with Labels?
It’s no Excuse

Bullying, Abuse, and Autism: a survey

» Bullying & Abuse: Introduction
» About being Bullied, by Anon

THE SURVEY IS NOW CLOSED.
Thank you very much to everyone who took part.
Ad hoc results are being tweeted @spectrum_life, and full results will be published in due course.

If you would like to take part in future research, please subscribe to our “research” newsletter (see right-hand column). Your subscription details will not be linked to any survey you subsequently complete, and your anonymity is guaranteed.

Original Post (published 9th January 2014)
Many autistic people experience some kind of bullying/abuse during their lifetimes.

We have compiled a survey, on Survey Monkey, to explore these experiences in a little more detail. If you are autistic, or think you might be autistic, we’d be very grateful if you would take five minutes to look at these 10 questions, to let us know a little about your own experiences. None of the answers you give with identify you in any way, and your anonymity is guaranteed.

How we are defining bullying and abuse:
PHYSICAL abuse doesn’t need to involve black eyes or broken bones; it also includes ANY kind of unwelcome physical contact, e.g. being pushed, hit, slapped, poked/prodded, pinched, spat at, having your hair-pulled, etc. – even if the other person says he/she is “just joking” or “just mucking around”.

PSYCHOLOGICAL abuse includes: being called names and/or made to feel small or humiliated, being threatened, feeling you have to do things you don’t want to do [or can’t do things you want to do] to keep someone happy, having your belongings taken and/or damaged, having someone checking your phone or emails, or always wanting to know where you are and who you’re with, being prevented from seeing your friends/family, someone playing ‘mind games’ with you, sulking with you until you give in, being told “you have no sense of humour” or “you are being unreasonable” or “irrational” when you object to any of the above.

SEXUAL abuse includes: you having to endure ANY kind of kissing or touching that makes you feel uncomfortable (even if you are in a sexual relationship with the other person), and/or sexual contact that you don’t want, but feel you can’t say no to (because of threats, sulking, etc.). It includes non-consensual sexual contact with you while you are asleep, drunk, or under the influence of drugs.

©Leigh Forbes


The Aspie Guide to Surviving a Family Christmas

Christmas is an intense time, even for neurotypical people, and it can be so much harder for autistic people, especially if you are undiagnosed or your family do not accept your diagnosis. There is more social pressure at Christmas than at any other time of year, to “do the right thing”, and you might feel your own needs are being lost in the tidal wave of traditional expectations.

Don’t be afraid to look after yourself. It is not selfish to protect yourself (and others) from the consequences of you becoming overloaded!

1. Schedule some down time: if you’re spending Christmas in company with more people than you are used to, make sure you schedule some time alone, at least once a day – more often if necessary. Tell others in advance that you’re planning to do this, but don’t feel you must apologise for it. Explain that for you to stay relaxed and happy (rather than getting stressed and grumpy) while in company with others, you need to pace yourself, and know you can get away (and recharge your batteries) when things get too much. If they don’t like it, that’s their concern, not yours. Your concern is looking after you.

2. Cut down the input: if you’re expecting to be around small children, consider investing in some earplugs. Seriously! The type used by musicians allow you to hear what’s being said, at the same time as cutting out the worst of excess noise. If you can’t get hold of any of these, regular earplugs are available from all good pharmacies.

3. Watch what you drink: remember how tired you will be by the end of it all, and think about whether you really want to add a hangover to that.

4. Be prepared for change: actively think about how your routine will be affected by the festive season, and try to anticipate any potential feelings of discomfort/distress. Knowing in advance why you’re feeling so unsettled (even if it’s always obvious in hindsight), goes a long way to helping you cope with it at the time.

5. Try to relax: if you’re playing host this year, you’ll probably have everything planned down to the last detail! But try not to let yourself get frustrated and/or anxious if things go wrong, or timings slip. Do not beat yourself up trying to provide the “perfect” day (there is no such thing). And even if you don’t feel the need to make a complete escape, make sure you schedule some relaxation time into your plans.

6. Get out for a walk! Try to get out of the house at some point during the day, however sluggish you feel or reluctant you are to go. Fresh air and exercise will work wonders! It’s also a great excuse to escape (even if you have company) from the pressures of being confined to the house with other people.

7. Get plenty of sleep: try to ensure you get enough sleep in the days leading up to Christmas, and afterwards. There’s always a strong temptation to wrap that last present, tidy that final corner, or prep one more bowl of veg before the big day. If there are still chores to be done, it might be better to get up early and do them in the morning (when you are fresh, and more efficient), than struggle on late at night and then be so overtired that you can’t sleep.

8. Don’t feel under pressure to be “normal”: there are so many expectations surrounding Christmas – about the food you should have, the kind of presents you should give, how you should decorate your house, who you should spend the time with. Yet there is no “should”. If, for example, you have no responsibilies, and just fancy spending Christmas alone with a box-set and a bottle of wine, you do just that. It’s possible that others secretly want to do the same!

9. Remember medication: this isn’t a trite or frivolous suggestion – it’s so very easy to forget regular medication (which could be anything from vitamins to antidepressants) when your routine is disrupted; but if Christmas is likely to be stressful, it’s all the more important to make sure you have all the help you can get!

10. Show this post to others: if you want support to convince others of your need for adopting these coping strategies, consider showing this post to your partner/parents-in-law/friends/etc., so they can see that this is a very real issue, and that their support will go a long way to helping you enjoy your Christmas too.

And remember, in just a few short days, it will all be over for another year!

©Leigh Forbes


Why Don’t You Take More Care?

My sister says it was always me who knocked over my coke in the Wimpy when we were kids. I remember exasperated cries of “it would be you” and “not again” and “why don’t you take more care?” But I never knew the answers. Over the years, I developed strategies to avoid knocking over my drink, but it still happens. It seems I was born clumsy, and there’s only so much I can do about that.

I can parallel park and I can sew, but I can’t walk through a door without colliding with it. Nor can I put a mug away in the cupboard without crashing it against the shelf. Nor can I drink a cup of tea without knocking my teeth (or spilling it). My limbs carry a dozen bruises at any one time, only a couple of which I can ever explain. As a child, I was on first-name terms with staff in the local A&E. In short, I’m accident prone. And my small girl is the same.

Proprioception, often referred to as a sixth sense, controls your ability to know where your body is without visual reference to it: proprioception is what lets you touch your nose with your eyes closed. It’s a sense we take entirely for granted; but imagine life without it*. Imagine having to watch your hand as it reaches to pick up that coffee. All the time you must make judgements: not only about where your hand is in relation to the cup, but where your hand is in relation to you. It would be like operating a remotely-controlled robotic hand, except that once you have the cup, you can feel it’s warmth against your skin. However, if you close your eyes, you immediately lose track of the cup’s position, and are unable to bring it to your lips, because you no longer know where it is. Imagine that.

Many aspies have issues with proprioception. This is not the same as spacial awareness – I can easily judge, for example, if my car will fit into that parking space – It’s only a problem with where the various parts of my body are in relation to everything else, including other parts of my body. Yes, I’ve been known to smack myself in the face by mistake.

I am teaching the small girl the strategies I’ve worked out: to keep her cup away from the edge of the table (and not in line with anything she might reach for); to tie back her hair and roll up her sleeves before a meal; to “concentrate on avoiding things in her way” (“look where you’re going” is not a useful instruction for an aspie). But still, she spills her drink, dunks her cuff in her food, and covers her limbs in bruises. Just like her mother.

It doesn’t help that she, also like me, is hypersensitive to touch. We feel more than other people. The oft-cited analogy, of the lightest brush feeling like an electric shock, is not far off. This led me, as a child, to be labelled a crybaby. I never understood why people didn’t understand how much it hurt (whatever “it” was). I gradually learned that an injury didn’t count if I had nothing to show for it, and subsequently never understood why things hurt so much, without leaving a mark.

So I look at my daughter now, alerted by yet another wail of pain, and presented with yet another microscopic self-inflicted scratch to kiss and sympathise with, and I do sympathise. I know exactly how she feels. And however exasperating it is that this is a six-times-a-day occurrence, you’ll never catch me saying “why don’t you take more care?” because I now know the answer: she was born clumsy too, and there’s only so much she can do about that.


Some people find using weighted belts/blankets/lap pads help with proprioception issues. See sensorydirect.com and rompa.com. See also this great article about making a DIY weighted blanket.
*This topic is the fascinating subject of Oliver Sacks’s article, “The Disembodied Woman,” which is included in the anthology The Man Who Mistook his Wife for a Hat, (Summit Books, 1985. Picador, 2011).

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?!

#iamaspie

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.

Coping Strategies

I am planning a series of posts detailing coping strategies that work for me. I know they work for others, and they might work for you (or your favourite aspie) too. I’ll be looking at the usual aspie-related issues, starting with task management, but let me know if there’s a particular topic you would like to see covered.

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!