Sunday 19 June 2022

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?

Thursday 2 June 2022

Tired

I don't want to fight any more, I'm exhausted.

The landscape around me feels bleak despite the warm (finally not wriggling) bundle of comfort in my arms.

But there is no way out. 

My options are to fight or to abandon all that I love in this world.*

Well, it's a little more complicated than that - I could live a half life that involves both fighting within myself and neglecting my husband, son and pupils/colleagues, as well as not enjoying any of those relationships fully. To be fair, even giving in and letting the darkness win involves fighting anyway. Or I could try and delay one by doing the other and just prolong the anguish. But ultimately it boils down to resigning myself to what my head says or fighting back against it.

Abandoning my family again can't be an option. So if I can't fight for my own benefit at the moment I need to constantly remind myself of the implications of giving in. It's confusing because making the "right" choices feels more like giving in, and doing the "wrong" thing feels like what I should be doing. I need persistent reminders that not listening to the darkness is not the easy route of giving in but the correct, responsible, hard grind of making sure that I can fully perform and enjoy my various roles in life. None of the Peggies deserve a half-me.

When nearly everything inside you fills you with shame and disgust at your "right" actions it certainly feels like a bleak battle. But I know it gets better. I know that my brain will eventually see the "right" way round again - even though the very thought of that switch fills me with alarm and horror right now. I have been round this loop enough times to eventually try and trust what doesn't feel true: the words, warnings and examples of those around me remain the same as my mindset changes, and I have to trust that they are truth and not poison.

It's relentless and it's exhausting; please bear with me.

These two Peggies are my world. Worth fighting for.


ETA: After some much-needed quality time with my trusty Rainbow Peggy I am feeling strengthened in resolve and hope. Still exhausted and still back to front but resolved to pursue the path I am told is right.


* Please note - before you all start panicking, I am not suicidal and have no intention of leaving the world; by abandoning I mean allowing my life to go down a path where everything becomes skewed, where I am not able to be there physically, mentally and/or emotionally for those I love and for myself, and where destruction follows me bringing pain and brokenness to the people I care about.