Back-up Voice: Non-verbal Communication

Another one I thought I'd written about but can't track down so maybe I've only mentioned in passing.

When you think of non-verbal communication you probably think of gesture, body language, eye contact and so on. I'm not here to talk about those, though perhaps I could do one day. I want to talk about what we do instead of talking, not what we do as well as talking.

Generally I have low support needs and I live a largely independent life. I tend to think that most people wouldn't know I was autistic unless I told them or I spend a long time with them (who knows whether I'm right or wrong about this of course...). Or, of course, if they meet me when I'm stressed, distressed or overwhelmed.

Suddenly I am recategorised in the onlooker's mind. I act unusually. They find me unpredictable. They don't know whether I may be a danger to them, or to the environment or myself. And here is the big problem: I can't talk.

So they don't get an answer to their questions, and they don't even know whether I'm hearing them or dissociating (for reference, I don't dissociate, so I am most likely to be hearing you). They ask more and more questions that I can't respond to; they start making ultimatums (ultimati?! ultimatae?!) or trying to get me to do things I can't do or that won't help. I get more distressed, it takes longer to deescalate.

The thing is, once I start to calm down, which I can often do well by myself with time and space, I begin to have access to communication again. When I'm in high distress I can't communicate at all, but as it comes down (or if I can catch it on the way up) things start to return. The trouble is, speech is often one of the last.

So alternative methods of communication are key. I haven't cracked it completely (if there is a finished point, which I highly doubt!) but I've learnt a few tricks that I thought I'd share.

One of the first things I'm able to do is nod or shake my head in response to a yes/no question. This is really useful because it tells the other person I am hearing them. They immediately feel calmer because a connection has been established.

Once my body begins to relax I am often then able to sign. Because of my work I know a little basic Makaton and fingerspelling. Within my work setting I have managed to convey the person they could fetch to help me (did take a while for them to realise I was signing, but they did and then worked in out from the initials!), but it does have its limits - in the general public not everybody knows any signing. Or in a situation like I found myself in last week, they may not be able to see! I was behind a door and because my eyes were closed I didn't know that they only had space to open it a crack so they weren't even seeing my increasingly vehement "quiet time" signs that I thought should be understandable to Joe Public...

As I deescalated further I eventually thought of typing. Once calm enough to open my eyes I wrote a simple message on my phone: "I'm autistic, I just need some quiet time." Credit to the staff at the restaurant, they were incredibly kind and respectful throughout the incident and the evening, and at this they straight away told me that they would close the toilets and come back and check on me in five minutes, which they did, by which time I was up and ready to leave and able to thank them quietly (they had only appeared once I was in recovery phase anyway - the whole process usually takes a lot longer).

In the past I have also used pen and paper to communicate in this way. I think it is slightly more difficult than typing but is another tool in the box.

And of course my sunflower lanyard, if I am wearing it, can explain to the onlooker a little about me ie. I am autistic and might just need some space. It also has details of how to support me in distress if I showed them the right card.

Also to note, sometimes as my speech returns it comes very quietly. At times I can mouth the word with a sign or a whisper will come out. So if you pay close attention you might get some words before normal volume is reached.

I'd be interested to hear from other people who are nonspeaking or occasionally nonspeaking, have situational mutism etc - what are you back-up voices? What tools help you and have you found anything especially reliable for interacting with members of the general public?

How close to crazy?

Note to self: be less crazy.

I've developed a habit when distressed of repeating a short calming phrase to myself and Baby Peggy. It's quite effective but I think it makes me sound more crazy than I am. Or maybe I am just more crazy than I think I am.

Pacing around repeating "It's ok, we're gonna fix it, it's ok. It's ok, we're gonna fix it, it's ok" (or similar) is not normal behaviour. But it does help! The rhythm of the words, and the reassurance of telling myself that it will be OK even if it's not now can help to stop me escalating further. The sameness of the repetition can eventually smooth the seam of transition between distress actions and problem-solving, de-escalation or "moving-on" actions.

But it is disturbing for others to see (or rather, to hear), particularly if preceded or accompanied by an even more dysregulated presentation of crying, flapping, shaking, self harm, being a ball in a corner etc.

I don't know where the balance lies between helping myself and not being a nuisance. Sometimes it feels as though I can do little about it even if I wanted to and that these are ways to stop anything worse from happening. I have had to accept that being inconspicuous as I would like to be is just not always realistic.

I don't know whether it was the repetitive phrases or the general presentation or the fact I had a baby with me but I obviously went one step too crazy this time. 

It had already been a difficult day on a backdrop of raised stress levels. Meltdown 1 had been surfaced from after two and a half hours of recovery, and Meltdown 2a had avoided escalation by furiously (manically? desperately? absently?) continuing with my previous plan of action. I should have known (and probably did know) that Meltdown 2b was pretty much inevitable if anything even slightly untoward were to greet me.

Which of course it did in the car park of Aldi, in the form of a lady unloading a trolley in the back of the space I was reversing into.

The car was half in and half out of the space, waiting didn't fix it and instead the lady started to gesture to me (I was too stressed out from earlier to process that her signals meant she needed me to move out of the way so she could get the trolley out of my way), the baby started to cry, and I was expecting an important phone call at any moment.

Executive function swanned off entirely so I just could not work out what to prioritise or in what order things needed to happen. Or even what things needed to happen! Luckily having a baby makes it simpler in some ways as they trump all else on a fundamental level that can usually penetrate even the depths of my problems. Start with the baby and hope the rest follows. 

Of course, starting with the baby meant getting out of the car, which meant the problem that involved another person put itself all over me while my brain was still offline and in basic "comfort the baby" mode. It could only do one job at that moment - language was pretty much absent other than repeating a comforting phrase. Responsive language, problem solving and social interaction were way down my brain's priority pathways and out of reach. So I was largely ignoring the other lady in order to do the thing I needed to do first.

I would have got through, and indeed did get through, all the other jobs eventually, it just took longer than for other people and I looked more unusual whilst doing it.

And so I worked through the backlog of tasks and got onto the supermarket shop about fifteen minutes later. (The lady solved the problem that involved both of us in the meantime, which took a job off my list!) Order restored after a really difficult afternoon.

And then the bit that made me realise once again that I'm actually a crazy person. A couple of police officers wandering up the aisle opposite. Not hugely unusual in the town where I live so I carried on as normal. But it turned out it was me they wanted. The lady had been worried enough that she had sent the police to check on me. 

They were very calm and as discreet as they could be and we just had a little chat and they left me to it (although they did wait outside the shop and check on me again when I got to my car!) but it was a new experience for me and not entirely comfortable. I know I can be unusual and do become distressed at times, but generally I find my way through things and don't tend to cause others a problem. When this happened I felt even more conspicuous. I felt embarrassed being talked to by officers in public. And I felt acutely aware that I needed to present myself in a very "normal" manner or it would be so easy to suddenly find myself on the wrong side of crazy, popped into a van and detained for assessment. It's the second time I've had a possible close shave with the mental health act and it makes you feel suddenly very vulnerable.

I suppose I am grateful that somebody cared enough to make sure I was OK (I had assured her that I was, but clearly hadn't convinced her), but the whole thing left me unsettled. I realised when I went out the next day that I was really quite anxious. Anxious I would have another meltdown - they are not fun and because of the high distress of that day as well as the pre-existing background stress factors I am now feeling much more like I did eighteen months ago than how I've been feeling recently - and additionally anxious that if I did, someone would report it and I'd end up on the wrong side of crazy, with people saying I can't look after my baby or sectioning me. Until yesterday I felt less anxious in public than before having a baby: I know how to act with a baby, I know the conversations off by heart, I know how to behave with a baby, I have a purpose so am not occupied by trying not to be weird etc.  But now I feel more anxious instead, because of other people's responses to me doing what I need to do. And I also start to question the confidence I had in being able to look after a baby. If I can get that distressed around him then am I really fit? I hope I am, but it has shaken me and knocked my confidence. It has made me a little paranoid in public and much more likely to mask, which is widely recognised as being detrimental to wellbeing (also borne out by my personal experience).

So I guess I have to once more examine the balance of how much "me" is acceptable, and how close to crazy is too close.

But for the minute I'll just snuggle down with Baby Peggy, go for walks away from the people, and try to let my brain get back to "now" me instead of year-and-a-half-ago me.

Some "rest the brain" activities

Let's Get you Sitting on a Chair

or, Please Stop Inconveniencing People

Why on earth does it matter whether or not I sit on a chair?

The only conclusion I can come to is that it makes everybody else feel more comfortable (well, everybody who's boring and boxed up in the norms of society...). 

Is it an Autism?

Today the lovely people at the dentists' surgery got treated to a visit from my Oortizum (see Harry Thompson's page recently for this to make more sense - there's been a theme about identity-first language and everyone is joking about trying to find an Autism that is lurking somewhere, somehow existing outside of a person. Anyway, I digress.).

I was trying to process a change to my expectation by flapping gently with my Tangle and rocking back and forth before I left the surgery so I could let my brain accommodate the new information and work out what to do next. The receptionist asked if I was OK to come back next week. I replied "yes" and continued regulating. A few minutes later this loop repeated itself (in retrospect, she probably meant "please leave now" and also you are being strange and making me and the other patients uncomfortable, but this is not what she said). A few minutes later she repeated yet again and my brain went bang. "I keep telling you yes! It's fine, it's fine, it's all OK" as bits of my Tangle went flying all over the waiting room.

I managed to find a corner to crouch in to gather myself and let my brain and body do their thing. The poor bewildered lady went for backup. I had forgotten to wear my lanyard - a lesson I could probably learn from, although I'm not sure how much it would have helped in this situation!

I do not want your chair!

Thenceforth the main thing the noisy, fast-talking, incessant-questioning (but also very well-meaning) dentist seemed concerned about during my meltdown was that I sit on a chair. What?!

He didn't get the point that this wouldn't help from a) my ignoring the suggestion b) my getting more distressed as his insistence became stronger c) my shouting "no" at him and getting even more distressed (if you know me you will know I am NOT a shouty person!). 

Only once I had later had time to calm down (They got me a drink and left me alone and made a plan and told me what would happen. And brought me my bits of Tangle. So really they were very lovely!) and was able to talk again and he once more asked me to sit on a chair, gesturing to one across the room, did I ask permission to stay where I was (on the floor in the corner by a chair). He said I could stay in the corner but could I sit on the chair. I finally managed to express "it doesn't help to sit on a chair" and he gave it up as a bad job and agreed I could stay where I was.

Neither member of staff was unfriendly, they just didn't know what was happening and didn't know what to do. They were feeling a little desperate as I wasn't responding (again, to people who know me this would be a positive sign that I am working on recovery). I could tell this because the dentist urged me that I would have to answer his questions about how to proceed or he would have to send me away into the cold which he didn't want to do. He was at a loss as to what to do with this perplexing and unpredictable individual.

Ah look, the people are behaving

So perhaps my sitting on a chair would have made them feel better. I would look normal to them and anyone else coming in and they would feel they had helped me because normality was restored in their waiting room.

But the thing is, I wouldn't have been OK, or not as quickly. Crouching and being in a small space help me to feel safe, and this makes my recovery quicker and my stress levels after the incident lower, reducing the risk of further overwhelm a little.

For these people the sign that I was OK was sitting on a chair, and the sooner it happened the better. But for me that would not have been better. It would not have meant that I was feeling better. It would have meant that I was sitting on a chair. Less regulated than I could have been. But behaving normally. Putting on "normal" behaviour doesn't magically make the normal behaviour helpful to me, and it doesn't change the way my brain works. 

So next time you feel tempted to ask someone to change their behaviour, just check whom you are trying to benefit - do I want them to feel better or do I want them to make me feel better? If they're harming themselves or someone else then absolutely they may need to change. But maybe what they're doing is just what they need to be doing and maybe I could be OK with that. Maybe if I'm OK with it it will help others feel more comfortable around "unusual" behaviour, which will mean more people can be more themselves in more places more of the time. And when people know they can be accepted rather than making people scared or uncomfortable, they might just have a better life.

I searched for unusual behaviour on Google images and this was the result 😂

Also a note:

Double empathy problem. He didn't know that I knew they were trying to help. He kept reassuring me of this later on so it was obviously bothering him (and even rang the GP to get them to check on me - a whole other hilarious story!). I had no animosity towards them but they did not know this: my behaviour, distress and shouting were due to my brain not being able to deal with everything that it was being asked to, and nothing to do with my thoughts or feelings towards the people involved. I think perhaps people look at a meltdown or shutdown and interpret it as an emotion, and an emotion that is felt towards them because they are there or they were involved in the escalation of distress.

I rarely feel an actual emotion in these states: what I am feeling is overwhelm. Brain exploding because more is being asked of it than it can provide in that moment. It doesn't even have space for an emotion or an opinion on things - all that is in there is "too much" or "help" or "I can't cope" if I had to try and translate it into something.

I kept thanking them and apologising. I didn't know whether they knew I wasn't upset with them but just couldn't compute the change quickly enough. I didn't know if they knew that I knew they wanted to help.

So my communication was not understood by the people with me, and at times I did not understand theirs. An interaction between people of the same neurotype would likely have resulted in less confusion, a quicker de-escalation and less concern afterwards. 

What to do about undesired behaviour

Lengthy post warning!

I had a question this week about how to support somebody who displays undesired behaviour and I think the thoughts we pulled out could be of interest to a wider audience.

I was going to write about the particular behaviour in this post, but as the principles we talked about apply to a wide range of "undesired behaviours" it seems wiser to begin the discussion in a more general way to allow those with a range of difficulties to relate.

Most people are no stranger to unwanted behaviour. Every parent or carer will be more than well-acquainted with the problem, and others won't have to look far to find it. "Attention-seeking" is an umbrella label often attributed to a whole host of issues including emotional dysregulation (tantrums, autistic meltdowns, anxiety or panic attacks, withdrawal - including what can be interpreted as "the silent treatment" in adults) and self-harming behaviours (including not only self-injury but eating disorder behaviours, drug and alcohol misuse, trichotillomania, dermatillomania, and many more), but this term is incredibly misleading and usually inaccurate. Such behaviours are indeed attention-needing, but many go to great lengths to conceal undesired behaviours, particularly self-harming ones.

So, when supporting somebody who lives with these kinds of difficulties, how do we best go forward?

The vital point to remember is that every behaviour is performing (or attempting to perform) a function. Nobody engages in these kinds of behaviours because they find them fun. Hard as it may be to believe, the toddler mid-tantrum is genuinely having a harder time than you. The person having an anxiety attack at a really awkward to is not only dealing with their anxiety attack but the pain of knowing that they are causing an inconvenience. The person who hurts themselves is devastated when you find out, because of the pain it will cause you (to add to the shame they already feel for resorting to such a method to try and deal with their unbearable inner pain).

Here are some possible functions of "undesired behaviour".

Expressing distress - making internal pain visible can be an acknowledgment for oneself that the pain is real and needs to be dealt with, or it can simply be an overflowing of the inner distress when somebody feels so dysregulated that they cannot help themselves (think of people in the Bible tearing their clothes with grief).
Trying to cope - self-harm can be a way of avoiding even more extreme solutions such as suicide, and it can actually make people feel better, releasing endorphins and thus relieving their distress or anxiety momentarily.
Communicating distress - often people try really hard to hide their "negative behaviour" but sometimes such behaviour can also be an attempt to show that things are not OK, or somebody might secretly wish that somebody would find out and help.
Fulfilling a sensory need - some behaviours perform a sensory function that either soothes, alleviates boredom or entertains. Sometimes they aid concentration or form part of a routine. Behaviours performing this function can become very habitual and compulsive and be very difficult to move away from.
Responding to overload - meltdowns and shutdowns and some self-injurious behaviour are often triggered directly by sensory or emotional overload, especially in people with autism or mental health problems, as the body's way of protecting itself from perceived threat.
Fulfilling a compulsion, addiction or belief - eg. "I will get fat if I eat", "If I don't thoroughly check that the car is safe I might cause an accident and kill somebody." The unwanted behaviour is attempting to alleviate the anxiety by avoiding the anticipated outcome.

People end up using behaviours repeatedly because they work. They serve a purpose. Even if to an outsider they appear negative, for that person at that time, they are helping in some way, and if we wish to change the behaviour, we need to address the underlying purpose.

Before looking at potential options to help with these categories of unwanted behaviour, it also important to examine why, as well as how, we intend to go about this if we wish for success. For whom is the behaviour undesired? If the person using the behaviour is distressed because of it then you have good grounds for working towards change. If it is actually harming others or putting the user's life in danger, then again it needs to be addressed for obvious reasons, but if the behaviour is not actually harming anybody (in body or mind) does it really need to change or do we need to reconsider our response? Why does the behaviour make us uncomfortable?

Unusual...yes. Wrong...?

Does "less socially acceptable" always equal "problem"?

Also worth considering here is whether the person wants to change (linked to "does the behaviour cause the person using it distress or not?"). Sometimes they need to change (if they are putting a life at risk), but if they are not ready for this (eg. somebody in the depths of anorexia) it will be very difficult until the brainscape has sufficiently recovered to allow a desire for change. Once there is a desire for change there also arises the question of motivation to change. Early in therapy I found this a really difficult concept. Of course I wanted to get better, but I genuinely didn't believe it was possible. I couldn't imagine how it was possible that things could ever actually be different for me. Because of this I could not muster the motivation to do the things I had to do to get better, because it didn't seem worth it. They went against everything I believed at the time, and felt like the stupidest thing I could be doing.

Now I had an unfair advantage here, because I had heard of people previously being rejected for mental health treatment because they were "not ready for change" so although I didn't lie - I was motivated and knew I couldn't stay where I was - I did big up my motivation in order to get my treatment. And once I was in treatment and my therapist figured out that although high my motivation was not enough to allow me to sustain the changes I had to make, we did some work on "motivational enhancement therapy." It makes me angry that this is so unfair, that because I had that heads up I got the treatment I needed but the other person didn't (although my condition was also different so I don't know how it works for theirs), but it's just a point really, that for people to make the kinds of changes involved in leaving some kinds of behaviours behind, the incentive required is unimaginable. You telling them to change is just not going to cut the mustard. If they don't want to they are unlikely to, and even if they want to, if they thought they could, they already would have done it.

So, once we've ascertained that we are going for change, how do we go about it? What kinds of solutions can counter these effective coping strategies that have developed to deal with really complex and difficult issues? My ideas are obviously not exhaustive or based on any research or therapy programme, and simply those that spring to mind. Please feel free to add, argue or otherwise discuss and share thoughts.

Expressing distress - look for alternative outlets as well as working on awareness of how to deal with things before they become overwhelming. Journalling, martial arts, drawing, talking to others, using sensory tools are just some ideas but different things will work for everybody. Be creative! Accept the person as they are, and that right now they need to do this to make life bearable. Sit with them in the dark if that's what is needed to keep them from being alone in the dark. Let them know your feelings about them haven't changed. It's OK with you for them not to be OK. Work with the person on identifying things in their life that increase and decrease stress and how these can be balanced better.
Trying to cope - as above, really. Other ideas for "green activities" (ones that contribute to wellbeing) could include being outside, being with animals, music, reading, swimming, meditating and anything else that helps!
Communicating distress - work on acceptance, making yourself a safe, compassionate and non-judgmental outlet where the person feels able to let out the big, scary stuff. Or if you are not the right person for that, help them find somebody that is. Support with communication skills can be helpful here, potentially including scaffolding strategies such as non-verbal communciation methods like wristbands or symbols, or pre-learnt phrases that can be used as required. Work on self-advocacy, understanding and accepting one's own needs and having a sense of self-worth will all help here.
Fulfilling a sensory need - here it's good to really get practical and imaginative and look for something that will mimic the sensory effects of the behaviour as closely as possible without being harmful. Chewing a chew toy (try different ones, or a rubber on the end of a pencil for an adult, or anything else that works), fidget cubes with buttons and switches, putty/blue-tack/playdoh/slime, popping bubblewrap (with fingers or a pin...), the list really is indefinite. If you can't find something that mimics the effect, play around with finding something different but equally engaging, that uses the same body parts (eg. keeping fingers busy, rubbing a soft or smooth fabric over skin instead of doing anything else to it. Spreading PVA glue, letting it dry then peeling it off is a good one we all remember if we were in primary school before mobile phones...). Perhaps create a box of tools that can be chosen from.
Responding to overload - try and work out triggers for overload and avoid these where possible. Look for strategies to help when overload is approaching or takes over - soothe boxes, exit routes, grounding techniques can help, amongst others, but sometimes all that can be done is to make the area safe and wait until the storm has passed. Then ensure the person has someone who can care for them because they will be wrung out physically and emotionally, even (or especially) if they have caused harm to others or environment.
Fulfilling a compulsion, addiction or belief - this is one that is probably best addressed through medical care by professionals trained to work with these conditions. Online CBT may be a help to some people, but these issues are very complex to deal with effectively.



I know this is in no way comprehensive or applicable to everybody, but it's at least some thoughts and ideas to play with.

For myself, the only approaches that have resulted in a positive change in my behaviour have been from people I feel safe with, who are not shocked by what they discover, who do not judge, who understand or listen to try and understand, who accept me as I am at that moment including my behaviour: those who show true compassion.

This doesn't mean that they don't care and don't want to see a change in me, but it means that I don't have to change before I can be with them. They can be in the dark place with me when I can't get out of it. If a person is chained up in a dark cellar, no amount of standing at the top shouting encouragement or telling them to come out is going to solve the problem: they are still in a dark place on their own. Sometimes people need somebody to come into the dark place, be with them there, nurse their wounds, help them build up strength and then work with them when they are able to start working on the chains.

Acceptance and a lack of pressure to change, combined with support to understand myself and grow, to put in place positive coping strategies and alternative behaviours are the routes that have led me to a decrease in "undesired behaviour."

Busy Being OK

I can't really be sitting here by a field, the wind in my hair, birds in the air, while the day is carrying on without me. And I am not there. I am supposed to be there. I have a duty to be there, and The Plan was to be there. I can't not be there. Yet the wind in my hair and the pain in my stomach tell me I am here, and so do the tears as they start to fall. It's a cruel twist that the wind helping to calm me is carrying the voices of the local school children playing outside.

There are difficult conversations to be had, and difficult, heavy decisions to be made. The magnitude of the moment is at once a crushing heaviness and a weightlessness of incomprehension. For now, all I can really understand are the wind, the flight of the birds, the movement of the clouds, the water droplets on the leaves next to me. The tractor in the field behind me turns the soil. I remember how to breathe again.

Now, with the sun on my face and the wind moving my body, I know that for the minute it is fine to be busy being OK. I will sit here for as long as I need to.

I sat next to a field for two hours. Not quite true. I sat next to a field for an hour and a half, then I did some mindful stretching next to a field for half an hour. Then I went for a walk. I crunched leaves, I followed butterflies, I laid on the earth with the sun on my face. I stopped to watch the water sparkle and the dandelion clock fly away on the wind. I made a moment for the tiny blue wildflowers, I smelt the cowpats and I felt the textures under my feet. I let myself be captivated by the dancing and flickering of tiny white leaves bright among the darker trees of the woods. I remembered me. I am very grateful to be able to do these things, no matter what else I can or can not do.