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?

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.