Meltdowns and tantrums: know the difference

I am 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 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: for me, 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 (fatigue, illness, hormones, hunger, conflict, 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), change of plans or some other disruption, 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 am 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 am 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, 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 will curl up in a ball and become mute. I will 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 am 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).
  • 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; some 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 (and possibly embarrassed), and will probably just want to go home. This is okay – once I am functioning again, I am 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.


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

About Being Bullied, by Anon

The author of this post is a reader of this blog, who has asked to remain anonymous.

Taking the bullying survey came as something of a shock to me. I know I was bullied at school, but I hadn’t realised the extent to which bullying has been part of my whole life.

As a child I was bullied both physically and psychologically by my parents. I am a child of the 70s so smacking was just part of life for pretty much every child I knew. I do clearly remember one occasion though in which the level of violence seemed extreme: I would have been 8 or 9, and my mother administered a slap to the top of my leg. As I was stood in the bath having my hair washed at the time, the combination of wet skin and hard slap left a clear hand shaped welt mark for quite some time. I think the level of violence shocked me more than anything because of my nakedness – I was utterly defenceless.

When I was very young, maybe 3, I was having the mother of all meltdowns, so my dad thought putting me in my nightdress, under a cold shower would snap me out of it. I presume the shock must have worked. Funnily enough I have a strong aversion to baths and showers, and have to force myself to have them, even now as an adult.

My uncle told me that he had to rescue me from the understairs cupboard which my mother had locked me in, on at least one occasion. I was very small then, and have no memory of it. I do though suffer from claustrophobia, but bizarrely, find comfort in times of distress from squeezing myself into small, dark corners.

I have been bullied by other family members over the years too. My maternal grandmother was a particularly unpleasant woman, she felt it perfectly acceptable to never get my name right and to make very nasty comments about my physical appearance and my character on a regular basis.

Two of my uncles thought it was hilarious to make me the butt of their jokes at family gatherings.

One of my cousins delighted in taking the mickey out of me in front of her friends and enjoyed excluding me from their clubs and games, even though this clearly distressed me.

School wasn’t ever a great place to be, I was teased because of my unusual name, as well as the physical features on my face that made me a prime target as soon as I was looked at.

We moved a lot, and each new school experience brought more of the same. I always made one or two good friends, usually other outsiders or the class underdog who I often felt it was my duty to befriend, support and protect.

At secondary school things became much worse. My parents had decided to send me to boarding school, and when this became common knowledge I was a snob, stuck up etc etc. Of course I deserved to be chased home from school with the threat of a good beating; to have my tormentors shout abuse from outside my home after school; to have to watch my back and close my ears to the abuse that was hurled at me day after day at school. My good friend at the time, who my mother thought was a bad influence as she lived on a council estate and had a father in prison, went out of her way every day to take me to school and back, affording me a degree of protection. The school never once tried to stop any of this.

I didn’t want to go to boarding school, and tried everything I could to get out of going. On the morning of my entrance exam I refused to get out of bed, so my father physically pulled me out of bed, ripping my thumb in the process. I still have the scar. Trying to deliberately fail the entrance exam didn’t work, and so I was packed off to be a termly boarder, despite only living 20 miles away, and having the offer of a lift home every weekend from another parent. No, my mother had been trying to pack me off since I was 7, so there was no way she was going to lose the opportunity to be rid of me for the longest period of time possible.

School was horrible. My accent was wrong, my looks, my personality, the same old same old, only this time with added class war. I was left alone in the dormitory at weekends as my room ‘mates’ were invited home with their weekly
boarder friends for fun and adventure, all of which they filled me in on in glorious, crowing, technicolour detail on their return.

Eventually, as so often happens, the bullied became the bully, although I wasn’t very good at it, and after being given my one and only telling off by the headmistress, I stopped, and didn’t become a repeat offender. Instead I grew a thick shell, and became known as a cold bitch instead.

My first boyfriend was a bully – sexually, physically and psychologically – I didn’t think I deserved any better. I had already been sexually abused at a party, which again I felt I deserved – I was so socially inept that I drank myself stupid, was too scared to ask where the toilet was and vomited where I sat. I was taken to the bathroom and cleaned up by the host, who then took me to her parents room to sleep it off. I remember coming round to find someone’s fingers inside me, then promptly passed out. At 13 a family friend had tried to have sex with me whilst his sister was in the room and our parents were downstairs, thankfully he was pretty easy to push off, physically, but that same person has, over the years, played mind games with me on a huge scale, and yet I still find myself desperate for his approval and affection.

Once school was over the world of work beckoned. I didn’t fair so well there either, my poor executive functioning got me into trouble on several occasions and a personality clash with a senior member of staff left me sidelined, belittled, mocked and berated on an all too regular basis.

I left home and moved in with my boyfriend at 17. His mum was lovely to me, and I couldn’t believe how different a family could be. Unfortunately the relationship developed problems, and we both started to veer dangerously close to violence out of frustration with our inability to communicate effectively. We managed to stay friends though, and he has been a positive influence in my life in many ways.

Work continued to be difficult for me – I cannot abide injustice, and have walked out of two jobs in protest at how poorly others were treated. Sadly I have never experienced that same kind of support in return. Eventually I grew up a little and realised that shit happens and sometimes you just have to put up with it. That attitude saw me stay in a job in which I was sexually abused on an almost daily basis, by my boss and some customers, for nearly 7 years. Yay me!

My mother continued to deal out psychological bullying, even once I became a mother and a wife. Eventually I had enough, and just short of my 30th birthday I stopped communication with her. As a result my father attempted to get my aunty and uncle, who were the only relatives who supported me, to stop talking to me so that I would be all alone and have to see sense! During that period I had several letters from relatives telling me what an awful person I was, how my parents had only ever done their best for me, and that I was an ungrateful brat who was clearly in the midst of some kind of mental breakdown. I don’t believe that to be true, but only because of the support of several people who have known me well for a long time, and have witnessed my mother’s behaviour towards me first hand, were it not for them I think I would believe it was all my fault.

I met someone who I thought was a good friend during this period, but unfortunately things didn’t work out so well. She thought it perfectly acceptable to ostracise me from the ‘community’ I belonged to – telling people I was a liar, a fraud and countless other stories, all of which were false. A few people stuck by me, but many told me privately that it was easier for them to side with her. One person who kept up a friendship with me on the quiet, was, when found out, also ostracised as a lesson, which affected her daughter’s friendships. She was very apologetic, but had to think of what was best for her child, so that friendship was, to all intent and purpose, ended because of a vindictive, insecure bully.

It hasn’t stopped there. But to be honest, it’s too depressing to go on. I have been intellectually bullied and derided for having strong morals and opinions. I have been sexually bullied just because I was an easy target. I have been psychologically and physically bullied by those who were supposed to love and protect me. Is it any wonder I prefer not to allow myself to get close to people? That I shut myself off the instant I find myself feeling that a pattern I have lived with for as long as I can remember is starting to be repeated?

My husband says that people probably don’t mean what I take them to mean, that it is more likely that I feel harsh intent because I have become so used to experiencing it and so can’t see anything else. I’m torn between thinking he has a point and wanting to scream that it is not just me being ‘overly sensitive’ again.

The biggest problem though is my internal bully. There is no escape from her, and as she loves to echo the insults, torments and failings that have plagued me my whole life, ultimately there is no escape from any of the people who found (and still find) me to be such a nuisance, so unworthy of kindness or thoughtful consideration.

I have considered explaining to my estranged family that I have Aspergers, in the hope of some understanding, but I can only see it being used as another stick to beat me with, so I remain silent, as always, and let people think the worst of me.

Related content:
» Bulling, Abuse, & Autism: a survey
» Asperger’s in Women
» Think you might have Asperger’s syndrome?”


Bullying, Abuse, and Autism: a survey

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.

Autism & Counselling Poll – Results

Huge thanks to everyone who took part in the Autism & Counselling straw poll (it’s still open if you haven’t voted!). I initially had the idea whilst preparing an essay on research methods (and I wanted to how the results of such a poll varied with sample size), and chose ‘autism and counselling’ as it is a subject close to my heart: after 111 responses, 77% of us have accessed some form of counselling at some time. As Life on the Spectrum is a worldwide community, it is impossible to compare these figures with the general population in any valid way, but the UK government’s Social Trends report for 2007 (1), says that 16% of adults in England had suffered a common mental disorder* in the week before the survey, and and 1.6% had accessed counselling.

For those who are interested, the graph below demonstrates how the results varied according to sample size, producing a 17% difference between ten and fifty responses. The yes-vote seems to have settled at between 75 and 77% after sixty-four votes. I will leave the poll in place to see how (or if) the results change with an even larger sample.

I hope to conduct future research into many aspects life with autism. If you are autistic (either formally, or self-diagnosed), and would like to help, please sign up to our research newsletter in the sidebar! Thank you!


*Common mental disorders (CMDs) include depression, anxiety, panic disorder, phobias, OCD, and post traumatic-stress disorder.

1. Social Trends 40 – Health (pdf)

Autism & Counselling: a straw poll

In an effort to get some idea of whether autistic people access (either private or publicly funded) counselling or not, please take a moment to answer the question in the sidebar to the right. Thank you!

(I plan to use the numbers produced by this poll to demonstrate the accuracy, or otherwise, of sample sizes, for a university assignment.)

I’ll also be doing more research on the efficacy of various forms of counselling, and the role of autism in the therapist/client relationship, later this year. I’ll be very grateful for your participation again in the future, and if you’d like to help, please get in touch via the “contact” tab above, or subscribe to our research newsletter in the sidebar :o)

Autism Awareness Day – collected tweets

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!


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.

What’s Wrong with Labels?

People can’t help but label other people. Our fundamental labels of “friend” or “foe” are essential to basic survival, and the rest lead on from there. Subconsiously, we are asking ourselves “is this person going to hurt me?” or “is this person someone I want to become acquainted with?” or “is this person a potential partner?” In order to answer these questions, and calculate the potential threat-levels posed by other people (on all kinds of levels), we first work out how well they match with us: we look at their education, the way they speak, their ages, their clothes, their jobs, their interests, etc. And we label them in our minds. Ask anyone to describe the person sitting next to him, and he’ll say something like, “she’s thirty-something, brown hair, well dressed, middle manager…” or whatever. He can’t describe her (to himself or to other people) in any other way. He has to use labels.

The problem arises when people apply the wrong label. And I fall foul of this as much as anyone else: a mother at my children’s former school spoke in a particularly clipped manner, which I interpreted this as snobbery (the wrong label). I disliked her just for that reason. When someone told me she was foreign (the right label) – a fact that had been impossible to see through her impeccable English accent – my whole attitude towards her changed.

So, having said all that, some people worry that I allow myself to be defined by the “autistic label”. On the basis that I’ll never stop people sticking labels on me, I much prefer to be called “autistic” than all the other descriptives I’ve had stuck on me over the years.

So, there’s nothing wrong with labels, but there’s a awful lot wrong with the wrong labels.

Typical Autistic Characteristics How Society Choses to Label Them How Society Could Label Them
Uncoordinated cackhanded restricted proprioception
Keeping oneself to oneself unsociable private
Stimming retarded harmless
Doesn’t get the joke thick differently humoured
Laughs more loudly than others annoying gets your joke
Says the “wrong thing” rude mistaken
Identifies ways to improve critical useful
Doesn’t understand teasing oversensitive differently humoured
Prefers not to make eye contact guilty retiring
Likes routine and organisation awkward organised
Free thinking dissenting thinks outside the box
Keeps odd hours creepy polyphasic
Wears comfortable clothing scruffy self-caring
Interested in detail pernickety attentive
Uncertain of how to interact standoffish shy
Interested nosy interested
Trusting gullible trusting
Honest tactless trustworthy
Sticks to the rules dogmatic law-abiding
Keen to share ideas opinionated contributing
Happy to talk about interests boring sharing
Prone to anxiety weak has a lot going on
Likes to plan ahead fussy organised
Wary of others paranoid bullied
Hypersensitive to light/noise/etc. intolerant amazingly tolerant

Please help by not perpetuating negative terms, but by encouraging the positive terms instead.