Stimming and sibbing

Stimming is a self-soothing behaviour employed by some people to take their minds off all the other extra stimulation coming in that might otherwise overwhelm them.  Some of these behaviours are obvious to other people – the “classic” hand-flapping, rocking, humming, nodding and other outwardly visible behaviours.  Others are invisible or at such a low level that they are considered by outsiders to be “ordinary” habits or quirks – nail biting / cleaning, hair fiddling, chewing the insides of the cheek.

It might seem ironic to use a particular stimulus to counter other stimuli, but for some it works if it is distracting enough, and the person can focus on just that one stimulus.  For some, the stimulus doesn’t have to be the sole focus of attention, it just needs to take care of the senses that would basically get bored and clamour for attention when conscious attention is required elsewhere.

Sibbing is a subset of stimming.  SIB stands for Self-Injurious Behaviours – things like biting oneself, or banging one’s head on a wall.

Stimming and sibbing are not confined to autistic people, or others with neurological differences.  Therefore, while it may alert you to the fact that someone is autistic, it is not an absolute diagnostic criterion.

A lot of the time, the autist may not even realise that they stim, because they have been doing it for so long and it requires no conscious thought.  It may take the stories of another autistic person, or for someone to ask them why they are doing something, for them to even realise that they do it, or used to do it (stims employed can change with age).

The Temple Grandin quote below reminded me of something I used to do in childhood.  For a time when I was a child, we had ducks and chickens, and grains were part of their diet.  The grain came in large drums that were big enough to allow me to put my head into the grain quite deeply – I loved the feel, the tickle, of the grain through my hair, on my scalp, and around my ears.  At other times I just used to let the grain dribble through my fingers as I examined all the different types – wheat, barley, sorghum, buckwheat, and more - that came in the mix.

As an adult, I have been surprised on occasion by Other Half asking, “What are you thinking?”  When I have responded with, “How do you know I’m thinking?” he has pointed out that I’ve been drumming my fingers, or tapping my feet while pointing them towards the person I’m speaking to.  These are things that I have been completely unaware I am doing, but he as someone who knows and loves me well, has realised it means certain things are going on inside of me.

Sometimes, I employ habits that I am well aware at the time that I am doing, even if the activity itself runs mostly on ‘autopilot’, like fiddling with my hair – curling and twirling it around my fingers – something I picked up from one of my sisters.  And at times these activities appear to require more of my conscious input – doing the dishes and putting them away is an example - but leave the major part of my conscious processes for more important matters like holding deep and meaningful conversations with Other Half or a friend.

These are examples where my eyes or fingers, or both, would clamour for attention just when I need to direct my attention to some other specific task.  So next time you see me sewing when at church, or at a conference, don’t assume I’m not paying attention.  This just may be my way of appeasing some of my senses so that others can do their job more effectively.

“When I did stims such as dribbling sand through my fingers, it calmed me down. When I stimmed, sounds that hurt my ears stopped. Most kids with autism do these repetitive behaviors because it feels good in some way. It may counteract an overwhelming sensory environment . . .”  – Temple Grandin

Meltdowns, Shutdowns, and Tantrums – what’s the difference?

Let’s start with tantrums.

A tantrum is an emotional outburst characterised by actions such as screaming, crying, defiance, stubbornness, and sometimes acts of violence.  They are usually thrown by toddlers - most of us are familiar with the image of a toddler hysterical at not getting a toy or a particular food item in the supermarket.  They may also be thrown by adults - in which case they are often called 'hissy fits'.  They are normally a reaction to frustration with the world, other people, or personal circumstances.

A toddler generally throws tantrums because they haven't yet learnt skills of how to (calmly) verbalise their frustrations, what to do with being told, "No", delay of gratification, and self-regulation.  Generally, they don't know how to verbalise their frustrations because they don't have the vocabulary to express themselves adequately.

An adult normally throws tantrums because they've been taught from childhood that if they throw a fit, someone will give them what they want.  An adult generally doesn’t throw themselves on the floor like a toddler might, instead he or she becomes verbally enraged and / or physically violent towards the person, group, or thing they believe is blocking their way.

A tantrum normally stops when the object of desire is received – the toy, the food item, the undeserved refund on a product or service, subservience from an employee, co-worker, or family member…

So, what are meltdowns?

Meltdowns are a stress reaction to being overwhelmed.  Anyone can have them, but autistic people are more likely to do so.  This is because our senses are often highly receptive to stimulation, particularly from external sources, so they are more likely to be overwhelmed by various stimuli.

For instance, as well as eye contact and other visual stimuli, many of us are highly attuned to stimulation of our other senses.  For some of us, noise-cancelling headphones are a Godsend in this regard to dampen the level of aural input we receive.  Some autists are highly sensitive to texture, with many opting to cut the sizing and garment care tags off their clothes.

When the autistic mind is bombarded by too much stimulation, it can lead the autist to have a meltdown.  A meltdown can look like a tantrum in that the person can have outbursts of uncontrolled crying, screaming, and sometimes, acts of violence.

It is important to note that meltdowns are not tantrums.  They notably differ in the following respects:

·    Tantrums are directed outwards – the displays of emotion are directed out, towards the perceived road-blocker (parents, service providers, employees, family members).  Meltdowns are directed inwards as the sufferer focuses on sensations they are perceiving and tries to find ways to block them.

·     Individual tantrums stop when they are rewarded with reception of a desired object or goal.  Meltdowns are not pacified with the presentation of a ‘shiny new thing’.  Indeed, this can make things worse as the ‘shiny new thing’ and interactions with people are just more stimulation of an already overloaded system.

We do not all have spectacular noisy meltdowns; some of us just shut down instead.

Autistic shutdown can be as simple as a short-term loss of ability to articulate our needs or what is going on inside us, but I’ve also read accounts from others of their need for complete rest (and perhaps sleep) for several days.  Like autistic meltdowns, they are a stress reaction to being overwhelmed, generally by too much external stimulation.

For me, I shut down when everything just gets to be Too Much.  My shutdowns take the form of inability to articulate as a first step, and graduate to being curled up with arms around my knees, hands over ears, and gently rocking.  I know, I know – verbose me ends up unable to talk; literally unable to articulate what I need or don’t need.  Other Half will at times say things like, “Use your words,” and it’s all I can do to say, “I can’t.”

What can you as a non-autistic (or even not-over-stimulated autistic) person do for someone in these circumstances?

·    Give the person experiencing the meltdown or shutdown space, time, and peace.

·    Do not punish them – this is not bad behaviour; it’s a stress reaction.

·     Let them know that you are there for them if or when they need it.  One way you might do this is by silent care-giving.  For example, you might make them a cup of tea, leave it in front of them, and walk away, all without saying anything other than perhaps, “I’ll be in the …. room.”  This shows that you care for the person, and you do so enough to let them emerge at their own pace, not yours.

·     Stop talking.  Seriously.  Stop talking at them.  Talking is your attempt to minimize your feelings of awkwardness.  It is really unhelpful because (a) it’s more stimulation; and (b) the person having the meltdown or shutdown will just be more stressed by the idea that they are being made responsible for making you feel better…or at least getting you to shut up.  If you keep jabbering away at me, I will walk away.  So, learn to live with your feelings of awkwardness as much as the world expects us to live with ours.

Verbosity

You have a friend / family member / colleague whom you love dearly, or at least like, who is articulate, doesn’t repeat themselves endlessly, and has a reasonably expressive face or voice.

But oh man, can they talk the hind leg off a donkey.  You wish that they would cut to the chase in the drama they’re telling you about, rather than giving you the history of every character, and a blow-by-blow account of every little thing everyone said and did.  And you also wish that they wouldn’t stop-start in their telling of the story to give you the back story to the event in question.

What’s going on here?

Autists tend to like clarity.  We like it for ourselves and we like to give it to you.  The way we think it's easiest to give you clarity is to give you context.  Lots of context.

Because we have already hyper-analysed the event we’re telling you about, we have decided that these things are important for context and clarity.  Part of the problem is that we can forget that our audience does not already know certain things, so partway through we will feel the need to ‘get you up to speed’ by filling you in on the back story.

Assuming this habit grates on you enough, if you have a good enough relationship with the storyteller, tell them how you would have told the story.  Let them know which things you needed to know and which you either didn’t need to know or would have been happy to ask for more info about.  This will (a) help the storyteller not to lose their audience due to verbosity; and (b) you won’t be grinding your teeth as you politely wait for them to finish.

If you thought (b) was bad, chances are that if (a) happens then, when you return to the storyteller later, you are likely to find that they remember where their story was cut short and Will Continue It from that point.  If you don’t want that to happen, don’t avoid them, just let them know how to tell the story more succinctly.

Labels

I've met people who do not want to get themselves, or a child in their care, a diagnosis because they don't want the stigma of a label.  My responses to that are:

·      These days it's less stigma and more cachet than it used to be, and I hope to reduce that stigma further.

·      Lack of diagnosis results in lack of access to available support and training.

·      Lack of early support and training leads to having to learn many things by trial and error that often results in poorer study and work outcomes, and broken relationships.

·      Lack of support and training can leave the autistic person vulnerable to abuse, because we are less likely to see the red flags, and have no or very few psychological tools, techniques, or other resources to deal with it when it comes (and it will come).  Meanwhile, abusive people (whether they intend to abuse, or do it due to lack of thought, care, and consideration) can almost smell our vulnerability; we become proverbial sitting ducks.

Before I met Other Half, I had been in a relationship that was very unhealthy.  I had had no training in recognising the red flags, and no knowledge of how to (successfully) ‘push back’ or extricate myself.

I stayed in that relationship for far, far longer than I ever should have, while always hoping for rescue…but I didn’t know what form that rescue could, would, or should take, and didn’t recognise it when it was offered.  I also didn't know know how to exercise the rights and choices I thought I still had, never mind the ones I thought were no longer available.

This, by the way, is what I found myself sobbing about when I read the paper I mentioned in my “My reasons for a diagnosis” post of 8 January 2021. (Don't worry, dear reader, Other Half knows all about that relationship.)

Now, I'm not saying that one has to be autistic to be caught in a bad relationship - there are far too many bad relationships around for that to be the case - just that we are particularly vulnerable.

·      It is the choice of the autistic person (or their parent / guardian / carer) whether they declare their diagnosis.  No-one else has to know – no-one gets stamped with an obvious visible sign upon diagnosis.  However, their difficulties may have made them visible already anyway.

Communication breakdown

Part of the definition of ASD that you may see includes “difficulties with social communication and interaction”.  You might be wondering if the friend you have in mind therefore qualifies – they seem so competent with talking to people, managing to hold great conversations, even being witty (!), and delighting in events with many guests they can interact with.

If you ask them though, you might be surprised at what is going on for them in their minds.  Here are some experiences I am aware of for myself and others:

·       Despite all the things they try, they never feel that others really ‘get them’.  They will often retell the same thing in slightly different ways in the hope that they will be better understood.  Oh, happy day when they meet someone who seems to get them first go!

·       They talk to many people because they are intensely interested in working out how others tick.  Often this will be for the purposes of incorporating what they learn into their own behaviour arsenal so that they do not seem so "weird" to others.  They may not be aware that that is what they are doing because they have been doing it for so long that it has become an automatic, subconscious behaviour.

·       They talk for extended periods of time almost without a break, or letting the other party get a word in edgewise, to one or more people.  They do this because they don’t know the signs to watch for that would tell them that their audience is bored, but is too polite to say so.

If you are a member of the bored audience, and know the person well, consider telling them privately that they can be verbose to the point of being boring.  But please, please do not leave it at that!  Give them some clues of things to look for in others, otherwise your autistic friend will likely (a) repeat the same verbosity at another time; and (b) may beat themselves up that they still don’t ‘get it’ or ‘get other people’ despite their best efforts. (a) is painful for you; (b) is painful for your friend.

If you can, it's also helpful if you can give them pointers on what to do instead - the "try X", not just "stop doing Y" idea.

Analysis

If asked, many autists will tell you that they hyper-analyse.  Everything.  Academic subjects, sports, special interest topics, spatial orientation of objects, light and shade, colour, sound, the line of ants travelling from the back door, through the kitchen, and out the dining room window, patterns in the carpet, patterns in language.  Everything.

But if there is one thing probably more likely than all the rest to be hyper-analysed, it is social interactions.  I will hyper-analyse conversations I had anywhere between five minutes and many years ago, and contemplate for weeks what I will talk about in my next conversation with certain people.  My Other Half rehearses, and analyses, expected conversations months in advance (as well as those in the recent and distant past, of course).

Please understand that when we do this about our interactions with you, it is not you, yourself whom we are analysing (if anyone it is ourselves).  No, generally we are analysing the interaction to see if there were any nuances we missed, ways that we could have been misinterpreted, ways that we might have accidentally offended you, or ways in which we could have responded better or differently (based on your reactions).  We are probing our own understanding of the interaction, and by extension, our understanding of you.

You could say that we are trying to think our way into your shoes, your point of view.

But it is not you we are analysing...though I understand if sometimes it feels that way for you.

The elephant in the room

Let’s address the elephant in the room – the causes of autism.  At this point in time (February 2021), there is not known to be any single defining factor that causes the brains of some people to wire in a way that absolutely will create the behaviours and experiences encompassed by the term ‘autism’. 

Unlike low folic acid increasing the chances of neural tube defects in the unborn, what a woman eats or does not eat in the months leading up to pregnancy or birth does not seem to have any bearing on the chances of a child being autistic.  However, it is thought that there is a genetic link – autism does seem to run in families, much like motor-neurone disease.  And like motor-neurone disease, it also appears ‘spontaneously’.

Fortunately, unlike motor-neurone disease, it is not fatal.  Nobody dies ‘from’, or is potentially permanently harmed or disfigured by, autism itself (although many suffer from the way others treat them due to their being autistic, or from self-harming behaviours used to cope with a difficult world).

The same cannot be said of measles, polio, whooping cough, rubella, smallpox, tetanus, or any number of other diseases that have been eradicated from most regions of the world.  The prevalence of these diseases has decreased to the point where many people cannot remember, or have not met, one of those negatively affected by these diseases.

How did we get to a world where these diseases are uncommon?

Vaccinations.

Many vaccinations are given to young children at ages when certain developmental milestones may normally be observed.  These milestone ages may include the points at which children typically start speaking, walking, and learning to interact with other people outside their family.

When autistic children do not display achievement of these milestones at the typical age, or in the typical manner, blame is often apportioned to the most recent unusual event in that child’s life, which is often a relatively recent vaccination.  However, this confuses concurrent events (those happening around the same time) with causal events (those causing something else).

I was born in the mid-1970s.  For various reasons, I did not receive vaccinations against some diseases (note: my parents were not anti-vaccination) and so I ended up having the ‘real deal’ when it came to chicken pox and measles.

I am, and always was, autistic despite a lack of vaccination against these diseases.  So obviously, one does not need a vaccine to cause autism, nor does one need to get one of these diseases to be autistic.

But even if vaccines did cause autism and the 'real deal' didn't, why would you prefer your child to potentially die, be disfigured, or become permanently disabled, rather than possibly turning out to be someone like I am – an articulate, married, gainfully-employed engineer?

Note that I am not saying that those who are disfigured or disabled are inferior or invaluable, just that most people wouldn't actively wish that outcome of disease on anyone.  I'm also not saying that the non-verbal, single, or unemployed have diminished intrinsic value.  However, I am aware that some people hear the word 'autistic' applied to a child and immediately envisage that the child will be non-verbal, never have a romantic partner, and be permanently unemployed, hence why I started this blog in the first place.

“What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.” – Dr Temple Grandin