Define Happiness

Many autistic people are said to have difficulty understanding, labelling, and describing their feelings, but I’ve always considered myself to be quite lucky in this respect – I’ve always thought I could describe how I felt, most of the time at least. So when Joanna (the my co-admin on this site) asked me yesterday, “How do you know when you’re happy”, I blithely answered, “When I’m feeling cheerful… when I have that joie de vivre, that glow inside. When I’m glad to be alive.” “Yes,” she said. “But how does that actually feel?” And I was stumped. She explained that I’d answered a question about a feeling by just using other feelings to describe it, leaving her no wiser about my experience of happiness.

We played around with the idea for a while, talking about anger, anxiety, and fear: we found we could describe those emotions in terms of of physical responses (adrenaline, racing heart, trembling, sweating, etc.), but when Jo said fear and anxiety felt like shouting inside her head, I jumped on that, saying happiness was like laughter inside my head; but none of it describes that all-consuming joy happiness brings. No even remotely. We tried describing happiness as an “absence of those negative emotions” (i.e. anger, anxiety, fear) – giving a feeling of calmness, of being safe – but that only touches on contentment. Again, it doesn’t come close to happiness.

Chambers Dictionary defines “happy” as:
1. Lucky
2. Fortunate
3. Expressing, full of, or characterised by, contentment, wellbeing, pleasure, or good.
4. Apt
5. Felicitous
6. Carefree
7. Confident
8. Mildly drunk

Definitions 1-3, and 7 are just other emotions (4, 5 & 8 aren’t relevant in this context), so only number 6, I think, comes close to a true explanation; but Chambers goes on to define “carefree” as a “lack of anxiety, worry, or responsibility”, which just brings us back to the absence of negative emotions we already talked about.

I could say happiness is when I smile – when I smile a huge genuine smile – the kind another friend of mine describes as my “mountain smile” (the one on my face when I’m on top of a large hill – see right). I can certainly remember how I was feeling when I took that photo, but if you asked me, “But what makes you smile?”, or, if you couldn’t see the picture (or recognise the facial expression as happiness) and asked me what caused the primary feeling…? I wouldn’t know.

So Jo made me aware that those of us who can supposedly identify and describe our emotions, still over-rely on cross-referencing them with other emotions, merely describing each feeling in terms of other feelings. This means there is no person-to-person datum for happiness – no baseline to which other people can refer. Negative emotions, however, cause obvious physical responses, and are thus easier to explain: everyone knows what an adrenaline rush feels like, or when your heart misses a beat, or when your legs feel like jelly… so why can’t I describe happiness in this way? The very closest I can get is to say “my heart feels larger”; but don’t our hearts “swell with with pride” and “fill with love”? So perhaps this explanation only describes a generic positive-emotion… it doesn’t nail down happiness at all.

I’d love to know how you define it – answers in the comments box please!

©Leigh Forbes

Getting Down to Detail

In his book, “Language: the Cultural Tool” Daniel Everett writes,

We can understand information [as] … all the things there are to talk about. It is perhaps infinite. But culture and circumstance will severely restrict what might be said in a particular exchange between two people … human cultures narrow the things there are to talk about and keep the flow of information manageable.

Is this what we autistic people don’t see, or don’t need? This restriction on conversation topics? It’s what costs us friendships (albeit with the wrong kinds of people – those who never really liked us in the first place), and stops us making social connections; because we talk “too much”, and/or about the “wrong” things. We obviously don’t have this cultural “information filter”. But is that really such a bad thing?

I have my own interests, those “hobbies” psychologists so patronisingly like to call “special interests”, but I’m generally interested in a much wider range of topics than other people, and can be interested in almost anything… but only as long as it contains detail. For example, I’m quite happy talking about the weather, but if the conversation doesn’t quickly move on from nice-for-the-time-of-year-isn’t-it to dew points and adiabatic lapse-rates (or whatever), I’ll get bored. Skirting about on the surface of a topic is so dull! I could listen all day to a meteorologist, or a rare-breeds sheep farmer, or an art historian – anyone passionate about their subject, and willing to talk about it – to discuss the detail… to provide that “restricted information”. But find someone like this at a party – the chap who “only talks about honey badgers” – and he’s called THE BORE? Not fair! I’d go to more parties if only they were full of people willing to talk dirty detail with me.

I love other people’s passion in their subjects; but although asking newly-met people what they do for a living is a socially acceptable question (resulting in a socially acceptable response), asking them what their job actually entails, on a day-to-day basis, elicits raised eyebrows and awkward foot-shifting. Why is that? People are said to be at their happiest when talking about themselves, but asking them about what they actually do is considered too personal – that is, unless you’ve known them for a while (a “while” being hours, days, or weeks – and somehow you’re supposed to know which). Ask someone about the details of their job, and they blush and bluster, and say, “it’s all a bit boring really.” But it rarely is.

In some ways, autistic people are much more socially adept: we don’t spend our lives as slaves to social etiquette, trawling through the standard (acceptable) “levels” of conversation, before being allowed to get down to detail – the place where people make connections and build real friendships.

©Leigh Forbes

Dear Teachers…

Some years ago, I entrusted my only son, my firstborn and my friend, to another woman. Let’s call her Mrs D. She was the first teacher I had encountered as a parent, and I had no idea what to expect. I knew teachers deserved respect, and I determined I would not be a “problem parent” like my mother. I would let Mrs D get on with her job without interfering.

It was a small school – part of what attracted me to it, only three class teachers, plus classroom assistants, and a headmistress: all women, most in their late forties or fifties. Motherly, I thought, if not grandmotherly. How nice for the small boy; he never knew a grandmother. I needn’t worry about a thing.

He loved his first two weeks, appearing beside my bed dressed in his uniform at 7am every morning. He bounded out of class at the end of each day, full of what he’d been doing and the fun he’d been having. After a couple of weeks, the novelty began to wear off, but I’d prepared for that, and chivvied him along, asking him every day what was the best thing that happened. By Christmas, he was answering “lunchtime”. Then he started talking about being “bored”, and being “told off” at lot. Next I heard he’d been kept in at break time for “not completing his work”. He’s five, I thought, not fifteen. I spoke to Mrs D, but she said he had to finish his work. I shrugged it off. What did I know about class discipline? But more and more things began to niggle me: he started calling himself “useless”, and saying his work was “rubbish”. Then, at the end of his second term, he came out with “I hate school”. This was enough to break my heart, and I began to worry. Perhaps I should go into school and say something. But I didn’t want to cause a scene. I didn’t want my child to suffer because he had a “problem parent”. Hell, I knew how that felt.

So, distressed, I watched from the sidelines as Mrs D spent three years destroying my son’s confidence. She taught him phonics, maths, and phrases like “what’s the point?” I, the child of my own aspie mother (who never gave a second thought to marching into school and making my life hell by proxy), was torn. I didn’t know what to do.

Mrs M, whose class he moved into next, was a good teacher. A nice woman too. I liked her. The small boy liked her. But still there was something missing; he would come home saying he kept getting told off, but didn’t know why. I spoke to the SENCO about autism – her reply? “I’ve seen a lot of children with autism, and I can assure you, your son’s not one of them”. I had no answer. I’d only been recently diagnosed myself, and I didn’t want to cause a fuss. So nothing changed. Meanwhile, I watched while Mrs D began to destroy the small girl’s confidence too, and with my even smaller girl due to start the following autumn, I knew I had to do something.

After facing up to the agonies of a change I didn’t have to make, I got the smaller girl on to the reception-class intake-list for another school, and her sister (desperate to stay together) won a place on that basis. Mrs M persuaded me to leave the small boy with her; he’d grown up with his classmates, she said. They all knew his little ways (not that he’s autistic or anything). He was “doing well”. I gave in. I always was a sucker for guilt-trip tactics.

The girls flourished at the new school, and within a term it became obvious my son needed to be there too. I reconsidered Mrs M’s remark about him having grown up with his classmates… but actually he’d been through toddler group and preschool with the kids at his sisters’ school – he would have friends to welcome him. It could be done. To minimise the disruption, I wanted to leave it until the end of the academic year, but a place became available after Easter, and I had to jump. Stressful? I can’t begin to tell you!

He had seven terms at that school, and although we had little dips and bumps along the way, the two teachers who taught him gave him the confidence to aspire, to be himself. And by validating his autism, accepting him, and managing his issues without needing to apportion blame, they gave me the confidence to stick up for him. He’s now approaching the end of his first term at secondary school (where the SENCO said his autism was so obvious she didn’t need him to have a diagnosis to be on the special-needs register), and is continuing to develop his self-reliance, his responsibility, his confidence.

So, to Miss P and Mr R, I want to thank you. Between you, you rescued my son from a pit of academic despair and managed to prepare him for secondary school in only two years. It brings tears to my eyes to think of the change you worked on him. The work you gave him was harder, the challenges greater, yet in those two years, he often came home from school enthusing about what “a great day” he’d had. You inspired him to learn – which is all a parent can ask. You also took on his autism with a fearless calm. His oddness was not a problem for you, and you spoke gently to me about any issues there were. You didn’t make me feel like I was making it all up; you helped me to help him. As a result of all this, he is not only coping at secondary school, he’s doing well. And I sincerely thank you for that.

©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

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


Assaulted by the Detail

I was sitting in a meeting, on the first floor of one of a local autism-charity’s support centres, considering that particular room’s suitability for people with sensory difficulties, when my aspie colleague observed how bright the glare from the window was. I couldn’t help adding that the sun’s reflections off passing traffic sent sequential flashes of light across the walls and ceiling. Our neurotypical colleagues smiled, shook their heads, and admitted they hadn’t noticed these details. At that moment, a green flash appeared, and the noise of a diesel engine sounded outside. Those clues, coupled with a particular rattle as the passing vehicle went over a bump in the road, signalled (to me) exactly what kind of vehicle it had been. “Green lorry!” I declared. The others grinned. We noted down “get blind for window,” and moved on to the next subject.

My brain, however, began analysing the tonal quality of the green, and a range of green-lorry images shot unbidden into my head: Asda, Waitrose, John Lewis, the Co-op, Yodel, Tuffnells, Eddie Stobart. The meeting’s attention had now turned to the clutter in one corner of the room, and the need to free up the table for other purposes, but part of my mind had darted off on a tangent, trying to decide which company the lorry had belonged to: the colour was too yellowy for John Lewis, but not yellowy enough for Yodel; too light and too far south for Eddie Stobart; it was a good match for Waitrose, but their lorries are only green front and rear (the sides are mostly white). My best guess was either ASDA, Co-op, or Tuffnells. At this point, something about the rattle returned to my consciousness, suggesting the lorry had been a lighter-weight non-articulated truck, rather than an HGV. This likelihood was supported by the fact that the road outside was a busy, but urban, route, and HGVs tend to take the dual-carriageway instead. One half of my brain had just agreed to put up a noticeboard by the door, while the other settled triumphantly on a Tuffnells 7.5-tonner.

This kind of detail often assaults me. I call it an assault, because I don’t choose to think about green lorries. We aspies can’t help consciously processing a huge amount of input at any given moment, whereas others can just subconsciously filter it out. People often think I’m rude if I can’t hide the fact I’m distracted, which is frustrating; if someone shouted in your face – which is what the green flash was like for me – you’d be distracted too. It doesn’t have to be a sudden event either; a large amount of general input can render me completely dysfunctional given enough time. It’s all about the quantity. Right now, I’m only having to deal with: the light input from four sources (laptop screen, and three lights); the feeling of my legs being crossed; the sound of my typing; the occasional car on the road outside; an ache in my back and shoulders; the smell of casserole wafting from the oven; hunger; and the sound of the children playing downstairs. If one of the kids started crying, or if the casserole began to burn, anyone would notice. But I’m aware of it all now – these things are occupying my attention, yet I can still write. I realise this makes me a good multitasker, something rarely considered an aspie skill.

Fortunately, the meeting I mentioned above was aspie-friendly: if my distraction had been spotted, no one would have taken offence, which is refreshing. So, please, spare a thought for everything else that’s going on in an aspie’s head and, if you spot him going off on a mental tangent, realise his distraction might be conscious, but it’s not necessarily voluntary.

And remember, if there’s ever a quiz round about green lorries, make sure to have me on your team.

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?!