Communication failure strikes again

My PIP review form came this week. That's not what this post is about, but it does mean that at least this little incident served some purpose in reminding me that I am not a Round Peg. I often find tasks like this difficult because I think that I get on pretty well in the grand scheme of things and shouldn't be asking for or receiving special treatment like adjustments at work or benefits from the government.

But last week it turned out that not only am I incapable of sitting on a chair,* but I am not the world's finest communicator. 

I shall wait for you all to retrieve your lower jaws from the floor where they have fallen in shock...

I tried to go home sick from work on Wednesday. This is already notable, in all fairness. I am terrible at knowing when I should or shouldn't be at work: I do not understand the Line (except the one where you've been sick) and how or when to draw it. It is too vague; it is a fuzz, not a line. I had got as far as consider that maybe I should probably draw it. I could not bring myself to call in sick on teacher strike day. I would go in and give it my best shot, get through the day and arrange after school if I still felt bad that I wouldn't come in on Thursday (that is easier because it is planned and the decision is spaced away from the action and I know what to expect on the day).

After I got to work we were informed that our class would be closed and told where we each would be covering. Once the informer had left the room I realised I had only found out about the morning (processing time...). Located Person With Information. Asked what I would be doing in the afternoon. They said it hadn't been settled yet and I would find out later. Thought very quickly. Replied "OK, maybe if I'm not desperately needed I could go home: I'm really not very well but I didn't feel I could call in sick on teacher strike day."

The Person With Information saw me a little later and expressed sympathy, saying it was a strange day for us all and I could wait in my class until the pupils arrived if that helped. I agreed and mentioned that my symptoms (fever, intense headache and incredibly sore throat) were not helping either.

When I eventually went to ask what was happening in the afternoon, having already taken my lunch break because I was unable to find People With Information, I was told I was going to cover someone who was ill and needed to go home. I mentioned for a final time that I was also ill and went off as instructed.

They didn't need me for five minutes and I needed to fetch my coat and as soon as I left the room I found myself in tears. I had a little cry, washed my face and continued the day. I would like to say with grace and professionalism but I definitely whinged!!! At least I have enough self confidence to whinge about it - in the past I would have been so upset, and ashamed that I'd asked for something I shouldn't have, that I wouldn't have uttered another word about it to anyone.

The next day I went to school. And the next.

Now I bluffed it out and joked about how I was clearly well enough to be there because they hadn't sent me home, but genuinely, even though I knew maybe I should be at home, I also believed that. Remember I'm not good at making that call, and not confident in those decisions once made, so if someone says or acts in a ways that suggests I have got it wrong, then I assume they must be right.

By Friday evening I was taking antibiotics for Strep A throat and ear infection. That I have probably now spread to half my class.

The two problems were a: I wasn't confident in how ill I was or whether that was too ill to be at work, and after many years I still don't have a reliable way to make that decision and b: the communication regarding my tentative decision failed. Although I have managed once or twice in the past, I still did not have a reliable way of communicating that decision.

The thing is, at the time I only knew about one of those problems and so I believed I was wrong and should be at work because it had been judged to be so. The second problem only came out on the Friday when I asked to keep my phone on me while I waited for a doctor call-back. This was a different Person With Information and one who had only been present at my third attempt to convey that I was unwell (my attempts became clumsier each time, and I didn't reiterate the bit about going home because I had already said it so they already knew I wanted to and I didn't want to seem demanding as I have been told plenty of times in that setting and others that just because I ask for something doesn't mean someone is obliged to give it. A fact that I am only too well aware of).

Their understanding of the situation was very different from mine. They had not received that message that I had requested to go home, and assumed that I had not made it clearly enough to be understood. I got the impression that it was very much my fault that this had happened. I still don't know whether this was indeed entirely my fault or perhaps a little of the old double empathy. It is in the past and ultimately now doesn't matter.

When told that it is my responsibility to say I need to go home rather than work's to send me, I asked what I should do when I have made that decision and have asked and haven't been allowed. The Person seemed confused by this question and suggested the part about how I probably hadn't communicated clearly enough. But helpfully, they gave a script, so now at least I have a solution for problem b and I can't feel worried about it being too demanding because it is literally what I've been told to say. It's just very confusing when half the time you're told you shouldn't ask for things and then you're told you should!

So yes, the upshot is, I am not Round (for many other reasons than just this!!) and I will try not to feel guilty filling in my PIP review. It's not my decision whether they award it, anyway - I will just give them the information.

*that's a joke - one day recently I managed to fall off one in two different ways in the space of five minutes, causing much hilarity to myself and others

Echolalia

So my previous post has made me finally write this one! I've been mulling over another of those "autism comorbidities*" for a few weeks - one that I've not thought about much before: echolalia.

Now I found this great article that pretty much says everything I wanted to say about it, so I would suggest you read that instead.

But if you can't be bothered I will summarise:

Echolalia is basically repeating words or phrases, either immediately or later. It used to be described as "meaninglessly" or "pointlessly" but this is SO WRONG. People do it for many reasons: to help process what they've heard, to communicate a response, to perform socially (ie. they know a response is required but don't know what), because it's fun or stimmy, to communicate a new message, to practise speech sounds, to make links and categorise new information (ok, that's similar to the first one I said - processing).

Actually it's not just an "autism" thing - people quoting films in everyday conversations are technically doing it - but autistic people can tend to do it a lot more, or a higher percentage of their communication might consist of borrowed phrases. In fact it's amazing how much you can say with recycled dialogue and some communicators are ingenious at getting a message across either what they have. I always remember Joanna Grace telling of a lad who said everything he needed to through quotes from Thomas the Tank Engine: "But wait, we've left the refreshment lady behind!" was the way he reminded the teachers of a quiet member of the class who nearly got left behind one day!

I do it more than I had realised - like with the surprising item in the bagging area title to my previous post. I think I do it mostly for fun - it is a little like word play to me - and also because my brain makes links, connections and patterns. It likes to join things together looking for patterns, so often if I say something that is also in a book or song I will extend my sentence by finishing the quote, for example Little Peggy might be wandering off up the road as he does, and I will say "where are you going?" but then I finish with "to, little brown mouse" from the Gruffalo. Sometimes I carry on further through the story! If I say "here I am" I usually follow it up with "send me", a quote from Isaiah in the Bible that I've heard a few talks on.

Maybe it's partly completeness for me. If my brain has made the link to something else it wants to complete that thing or at least acknowledge the link in order to let go of it and move on. Other times it's playful. And perhaps if I am not in the mood to communicate directly it is easier to use someone else's words as they feel less personal or vulnerable. At any rate I think it's less effort and more fun to use preloved phrases - I don't have to put words together, I can be a bit artistic, and in a weird way I know it's "right" because it's already been said by someone else, so I can't get it wrong and be weird. Which of course is nonsense because it can make you sound a lot more weird! And writing that I realise I have a whole lot of words and phrases that I have pilfered from many many real life people over the years - some I just like, but I think the theory may be "they are accepted and respected; if I use their words I will be too - I will belong and won't get it wrong.

So yes, read the article and get interested - the more I think about it the more fascinated I get!

*What a terrible term! Basically just a Thing, that quite often coincides with being autistic, but can happen without being autistic and not all autistic people do it.

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?

Relationship is Key to Communication

Checking for something on my GP record I came across the report from my recent psychiatrist review. I'm not normally under a psychiatrist but everyone under mental health services is offered a psychiatrist review after having a baby. This means the psychiatrist and I hadn't met before and didn't know each other other than them having read a brief summary of my medical notes.

At the time I was aware there had been some gaps in our communication but over all I had a neutral feeling about the experience - it happened and it wasn't particularly significant. 

When I read the report I realised the size of the discrepancy between what was received and my experience.

The more I think about it the more I realise how much less than optimal that appointment was. It wasn't anybody's fault, but it made what could have been a useful checkpoint into a box-ticking exercise.

I am aware that I wasn't doing my best communication on the day. My brain function was a bit compromised and my emotions were offline so I didn't even think of some of the things I could have expressed (like how the matter of what therapy I may or may not be getting has been going on for about a year and is driving me mad). 

Some things I might have wanted to say two weeks previously didn't seem important because they had faded as my priorities changed and my perspective skewed. Other things I tried to communicate but obviously didn't quite succeed at.

If I lived a few miles up the road I would have known the psychiatrist. I have practised communicating with that one. I have developed ways to tell her the most difficult of things and get round the troublesome bits of my brain. She is familiar with my idiosyncratic style of communication. And there's simply the fact that she knows me and would have been able to tell just by how I was presenting that I wasn't doing great.

I know that my situation is perhaps unusual in that I don't know my local psychiatrist and I do know the next-door one, but the point I'm getting at is the importance of relationship in communication. Especially for people whose communication is not "typical" or who appear to communicate fine but actually might not.

It wasn't anybody's fault - I could have communicated better but wasn't really in a state to do so, and the psychiatrist could have helped me more but she didn't know me so she didn't know there was anything to help with or how to help. 

But reading the report showed me that even what I thought I was communicating or tried to communicate hadn't reached its target effectively and that the gap between us was bigger than I had thought. Even things I had corrected on were still written wrongly. The group I mentioned in my previous post had a session on effective communication last week and one of the features highlighted was relationship. I've noticed it before in my post about continuity of care and here it pops up again. I think the frequency with which it appears means it's important. Not always possible, but important.

I'm a person too, and that's OK

Sorry this is a long one! Think I'm guilty here of trying to tell the whole story and wittering on about something that could be said succinctly. And doing that very clumsily at times. But I can't be bothered to edit any more to make it pretty and readable because I add more instead of editing out!

I had a good reflection today.

In a group we were talking about self-esteem and assertiveness and I had a bit of a warm fuzzy thinking about how much I have come on in this area over the past few years. 

One of my core ideals is to be kind to others, to help people when I can and to have a positive effect on those I come into contact with and so for me people thinking I'm unkind, self-centred, rude, greedy or lazy is one of the worst things that could happen. I know I shouldn't care so much what people think of me but I do. Because I communicate in a different way from the majority of people (eg. I don't always realise the truth may be offensive - if I state the truth it is simply that, without judgment, but I think others infer a judgment and are then upset because they think I'm saying something is bad when actually I'm just saying something is) and my face and body language don't always convey my true feelings in the way people would expect, I have many times been misinterpreted and this has resulted in my beliefs, thoughts, behaviour and emotions gradually becoming more and more skewed in order to stay safe from being viewed in those upsetting ways that are so against my values. (Perhaps it seems so intolerable because not only is it upsetting but it's not true. It doesn't line up with the facts of who I am?) 

But recently I've become less black and white and learnt that expressing my own needs, thoughts and opinions does not necessarily mean other people's are squashed and that I am acting against my values. "Both of these things can be true" is a phrase I frequently come back to that really has transformed how I approach some aspects of life (when I remember!).

Back to self-esteem, thankfully I have never had the belief that I am a completely terrible, useless, rubbish person - I had some internal confidence in the things I had abilities in and in myself as a vaguely kind person. But... I did not esteem myself highly, or much at all. I didn't think I mattered. I would happily put myself in rejection or ridicule's way if it were a matter of someone else's wellbeing but if I needed something or felt hurt I would stay quiet. I downplayed abilities for fear of being rejected or ridiculed. I placed little to no importance on myself, my needs and my wishes. Although I didn't believe I was bad or useless, I somehow believed I was less important than others and that if there were any discrepancies the other person must be right. Put others first; don't presume upon anyone to put themselves out for you. I still think these are worthwhile values, but my brain is black and white and takes everything to its logical conclusion, so these become "your needs and wishes are not as important as others' and you must never inconvenience anyone." And then "you should be invisible and not need anything." 

Somewhere over the past few years I have moved on slightly. The therapy and support I've had has probably (definitely) helped! I'm not sure whether I have consciously tried to be more assertive in my communication (where previously I would have been passive because I was so worried that I would appear aggressive/awkward/obnoxious, offend somebody, inconvenience somebody or just that they would misinterpret and think I didn't care or didn't like them) or whether it has happened naturally as I have started to understand and accept myself more.

I was so scared of trampling on others that I daredn't exist. I still mitigate most requests with disclaimers and most refusals with apologies but I now place enough value on myself that I am more likely to express my needs or do what I need to. I don't (always) automatically feel guilty and that I am bad or wrong for stating honestly my perspective with respect and kindness towards the other party. 

And on reflection it's actually better for everyone if I am assertive (which doesn't mean trampling on others but expressing my needs and opinions clearly but kindly). Being assertive involves behaving with proper compassion (not just "niceness") to both myself and others, and gaining an understanding of this through therapy has definitely helped too. It's obviously better for my own wellbeing because I don't end up in burnout and resorting to unhelpful coping strategies (as much) - which would be reason enough to celebrate - but it can be helpful for others too. Looking at it the other way round, I feel much more settled amongst people who are assertive because I know I can ask them things because I know they will say no if it's not right for them. If I can't trust someone to say no then I can't ask them to help because I can't be sure they won't help me at their own expense. When I know people understand and are comfortable expressing their needs or opinions then I'm not worried that I will hurt them unwittingly. And so I can return the compliment by not giving people the extra work of trying to guess when and how to help me and whether my needs are being catered for. 

As we talked about what low self esteem can look like - including never saying no, always saying sorry, perfectionism, avoiding situations eg conflict or going out, not challenging self etc - I realised that I am much less like that than I used to be. Sometimes it's little things like saying "thank you" instead of "sorry" and other times it's bigger things like asking for help when I feel that I shouldn't need it, or saying "no" to something that will be detrimental to me. I have actually come a long way and that is great. Some of the things I have learnt have started to stick and although I still struggle with many thoughts and beliefs about myself and the world, some of those problematic areas have seen a shift. And the fact that I'm more comfortable with that says a lot in itself about how I value myself. Other things will be harder to change but it is helpful to notice that some movement has happened and that it is both acceptable and positive. Maybe other changes will eventually become acceptable too.

Edited to add: Searching for a title for this, I realised I am much better at referring to myself in the first person now - maybe I'm getting better at having a "me."

Change and the difficulties with acknowledging it

Change is ouchy and yucky. It means moving away from the familiar and predictable where I know what to do and what to expect. It means I don't know what will happen or how things will be. It means different, and for me, different and unknown is unavoidably tagged with unsafe. 

So if a change is happening I am automatically vulnerable, and my brain is telling me I am in danger. This is part of my autistic neurology not just a psychological conditioning that I can teach myself to think differently about.

A change in myself is extra problematic, because not only is the world unpredictable and unreliable, but I myself become so. For a while I am not who I am used to being, and I don't know what I think of the new version. Initially, different is almost always wrong (again neurological, not a conscious choice), so I must learn to accept the new version and whilst doing so any reminder that it is a new version increases the awareness of change and feeling of discomfort.

An unwelcome or unchosen change, or one I have no control over, feels even more unsafe, for obvious reasons.

So I like to keep my information safe, to be in control of people's perception of me, to have any changes I do decide to make firmly fixed in my head and adjusted to before they are presented to others.

When I tell someone a piece of information I am no longer in control of it. It is like a little bit of me has been stolen and I don't know for certain what will happen to it. It might get shared with more people, so I might get a shock if someone talks to me about something I haven't personally told them about (it may or may not be that I don't want the other person to know, but I certainly want to know who knows!). Or something else may happen with the information. If I tell someone I like stripy socks, they may go and buy me three pairs of stripy socks thinking it will make me happy. I might like the new stripy socks, but I did not expect them or ask for them and so they cause disarray in my mind. They might even be the wrong kind of stripes, or the wrong kind of fabric, or I might not have space in my drawer for any more socks, or I might have been looking forward to choosing myself some new socks when I had worn through some of my older pairs, but now I can't justify that because I have too many socks already. I must remember to communicate my gratitude for the gift in a neurotypically-understood way, and figure out whether I am to reciprocate in kind, or in some other way at some unspecified point in the future by doing a favour or giving a different kind of gift (which I must then remember to do!), or whether it would be considered strange or ungrateful to give a gift in return. This is a hypothetical situation but one that could happen to me, just to give you an idea of how even a simple piece of information can run away from me and cause difficulty, even though everyone's intentions are kindness and I might well like the socks!

Other people having my information brings all kinds of unpredictability. In addition to the issues above, simply the fact that they now know the thing in my head means that they may choose to talk to me about it at a time when I was not thinking about it, and that is unexpected and out of my control, which makes me feel cross, which is actually because I don't feel safe because things are out of my control and unpredictable. I find it easiest to talk about things or make changes or decisions when I am in control of them and they can't run away from me and take on a life of their own.

Changes and decisions take me a very long time to process. When I need a new phone, I start thinking about six months before my contract runs out "Soon I will have to think about what phone I am going to buy." I then need to look several times at what is available, over a period of several weeks (usually a month or two), ideally both in shops and online, before I am ready to make my decision, buy the new phone and change over to it. I thought about dying my hair for probably about ten years before deciding to actually try it, then for a few more months as I decided whether to really do it, when, and which shade to buy. It then took me about three weeks to get used to without being put out at my own appearance in the mirror. And the shade wasn't that different from my natural colour.

I tend not to consult other people until right at the end of this process, when I feel I have got my head round a change that is going to happen. I would rarely share that I am thinking of getting a new x, y or z, because somebody might get one before I'm ready and I hadn't decided which one I wanted. They might not get the one I want, or, because it takes me so long to think about it, I wouldn't know whether it was the right one or not - I am rushed into making a decision or someone making one, before my opinion is formed. And then I never like the thing because I never had the opportunity to decide whether I liked it. Once I am mentally adjusted I am a little more able to cope with other people's responses. I didn't tell anyone I was hopeful of a relationship with Mr Peggy until we actually got together. I probably won't discuss the names we are thinking of for baby until baby is born and we have decided on a name. It helps me keep ownership of the decision and feel as though I belong to the new version of things.

But because any change has been such a big mental shift, it can still make me feel unsettled when people comment on a change, because it highlights in my head that it has occurred and even when the change is a positive one it still carries a quantity of discomfort in its newness. To have people comment on a change in me makes me feel vulnerable. Perhaps because it points out the me-ness in the change - I have made a change based on a personal decision or preference, other people will see part of my personality and then be able to judge me on that. 

So sometimes I don't make changes. Often I have no desire to make changes - sameness is very happy to many autistic people. If I do make a change sometimes I don't tell anyone about it, or I hide it. The final line of defence is to head off or disarm the worst of the discomfort by getting in there before anyone can comment on it. Tell everyone about it, make a joke about it, out it before someone else can, before it's out of your control. You still have to deal with all the problems I explained before about people knowing the thing, but at least their finding out was under your control.

Changes happen when you are pregnant. For quite a while you can hide them. I told people before it became unavoidable so that it was in my control. But you can't control when people start seeing or commenting on your bump. In pregnancy it is suddenly not only acceptable but lovely and wonderful to talk about your body size and shape and CHANGES that are happening. But I am still adjusting to those changes and I don't have the luxury like when I'm going to dye my hair, of not telling anyone until I am ready to. They can say what they want when they want, and they aren't being horrible, they are excited just like I am (OK, the only person who can be as excited as me is Mr Peggy, because it is after all our baby! But they are still excited.) and most people like to talk about that kind of thing. But change for me is always uncomfortable, even when it is the best kind of change in the world, like having a baby that we have waited so long for (and I know for sure I'm not the only one who isn't always happy as Larry about everything that happens during pregnancy).

The best thing you can do? Ask me factual questions, ask me how I'm coping with pregnancy or what the best and worst things are for me at the moment, tell me lovely stories (not horror stories!) about moments you treasure from pregnancy or your children's early lives. And with general changes, a comment that acknowledges the change but doesn't focus on it can be better for me than an outright, "Oooh, you've had a haircut!" (This is one reason that I haven't had a haircut for five years. I never have to have that conversation. What am I meant to say to that? "Um, yes, that is true, clearly."). Or maybe what I'm thinking is to be specific rather than general. I prefer a conversation that is about something... where the response to what you have said is logical not something I have to dream up. Maybe pick an aspect rather than commenting generally. "I like the colour," with no preamble, rather than "Have you had your hair done, ooh it really suits you." This is similar to how I don't like greetings and would rather just enter straight into a conversation. Or say it indirectly to someone else in my hearing: "I love Square Peggy's new hair!" When it comes to acknowledging change I think for me it links a lot with Exposure Anxiety, and the types of approaches that work well with this and PDA can be helpful - indirect communication. See this post and this one for a little on this, or Google. But perhaps these are points for a discussion on neurodiverse communication tendencies!

Basically, a long old ramble to say change is hard, acknowledging change is even harder, both of these make me feel unsafe and like the world is falling apart or bits of me are being stolen. You can help by asking questions that I know how to answer instead of making comments which can leave me feeling almost violated, and by being specific, or by talking indirectly about things.

How to tell the Story

 As I finished writing the previous post and discussed it with others, I started thinking about the techniques I use to try and overcome the various obstacles to communication that I listed. They don't address all of the barriers and they don't always work, but maybe some of my sneaky ways of cheating the system might help someone else with similar difficulties, or might be tweakable for someone else, or helpful to somebody trying to support communication for people with brains like mine.

I don't know that (or what) you want to know/it doesn't occur to me that it's something people would want to know/I've already told somebody/I can't think of any things to say.  These are tricky ones to get around because it's hard to know what you don't know. In some contexts it helps if people ask fairly specific questions (eg. in appointments), although this can lead to me not saying anything that isn't specifically asked so beware! In other contexts questions make it even harder for me to talk (eg. "are you OK?"/"how was your day?" General statements about the sort of things people want to know can be helpful eg. "please tell me if/when you feel bad enough that you use the crisis line" or "I like it when you tell me about specific things that happen in your day". These don't put me on the spot to perform immediately, but I can use them in future when I want/need to communicate but don't know what to say/whether someone will want to hear.

It doesn't occur to me that other people might not already know whatever it is that's in my head/ I forget that I could say things just because I want to say them/I struggle to say things purely because I want somebody to know. Sometimes I can CBT myself a bit in these situations and/or think back to the frequent conversations with my numerous professionals and peers and remind myself that people don't know what's in my head unless I tell them and there is nothing remarkable about saying things, even if people aren't interested or already know them.

I don't want attention. Telling people one to one and by a non-invasive communication message like text or direct message can help with this. Sometimes dropping things unexpectedly into unrelated conversation works for me though it probably isn't great for the other person! I may also try and change the subject again very quickly afterwards to deflect attention away.

I don't know how to say it. I find processing by writing particularly useful: brain dumps, blogging or just scribbling down whatever I am thinking or is bothering me. Other people use drawing and various different tools to help them figure out what's in their head and how to translate it into something other people might understand. If I don't have the time to do this on the spot I might be able to use a flashcard - I have a cunning one that reads "there's something I need you to know" - to get the ball rolling and help me avoid the distress of feeling trapped and despairing. We might then agree that once I've figured it out a bit if I can't at the time, I will email an explanation or a copy of my brain dump to discuss when we next speak.

Demand Avoidance/Exposure Anxiety/I don't want you to know.

• Writing a text message about my day or my emotional state and sending it before I get home so I don't have to say it. This is less "directly-confrontational" and sometimes manageable. A bit like writing this blog, I can pretend it's just writing and that I'm not actually telling anything to any people. Pressing send can be difficult so it's best if I do it really quickly without thinking about it and then move quickly on to something else.
• Getting in there first before anyone can ask me a question. Sometimes I can't do this though, and other times when I do it tips me over into some weird manic over-talky state which is like an elaborate mask (I can't communicate as myself so I'm almost acting a part and distancing myself inwardly from the vulnerability/anxiety that communicating brings. This is very Exposure Anxiety, if you are at all familiar with Donna Williams/Polly Samuel). So I'm still not sure if it's a good cheat or a bad one, because it does the job of communicating what I need/want to communicate, but leaves me exhausted when I come down from it.
• Saying the thing in some entirely unrelated context where I wasn't planning to say it. This takes my brain by surprise so it doesn't have a chance to say "no" and stop me from communicating. It also gives me a feeling of safety because I have taken the other person off guard with it so I feel in control, which protects me slightly from the vulnerability of exposing the insides. Again both routes around Exposure Anxiety. I hate unpredictability in others but I like to maintain a sense of my own unpredictability... Perhaps because it keeps me freer from expectations that I am afraid I won't meet (ie demands, think PDA traits).

What do you do to help you tell the story? What do you find helpful or unhelpful as someone wanting to hear the story? Please let me know - this is very much an ongoing work for me so any ideas are helpful!

None of the Story: Why didn't you tell me?

I've been asked to do a follow-on from my previous post on telling the whole story. As I touched on in that post, I am often prone to the exact opposite and telling nothing at all. Why?

I don't know that (or what) you want to know. Unless I am specifically told otherwise (eg. by being asked specific questions or instructed to inform a if x happens), I assume that what I might say will not be of interest.

It doesn't occur to me that it's something people would want to know. The previous point could be specific to person - I might say things on a certain topic to one person because they have specifically told me they are interested. But I will not extend this to the general population, because I have no information that anybody other than the person who said "please tell me" is interested. If nobody happens to have told me it's a topic I should tell people about, then I may just not tell anybody about it! I don't want to bore people and I don't want to get conversation wrong.

I don't want attention. Attention is a kind of demand to perform, which brings a risk of failure to which I am very sensitive. Speaking in a group of people, no thank you. Unless I am there for the actual purpose of sharing information on something I am well-informed about, but that is different - then I know what people want to know and I'm not relying on my personal performance; rather the factual content of what I am delivering. I have too many experiences of getting conversation wrong to want to invite attention.

I don't want you to know. I'm actually pretty open when people want to understand things, so it's relatively rare that this will be the reason I'm not telling someone something. If it is, it's probably because the thing makes me feel very vulnerable and I'm not ready to share it with them yet. Perhaps I fear I will be judged or misunderstood, or perhaps I am still judging myself about the thing and feeling intense shame. Sometimes I can also feel the need to be in control of information, especially if it is information that is valuable to me and I fear it losing its essence or it being mistreated if I let it get away from me. But more often than either of these, when I think I don't want you to know, it is actually exposure anxiety or demand avoidance being triggered.

Demand Avoidance. I wouldn't say I fit the whole profile of PDA (Pathological Demand Avoidance), but I certainly experience some of its traits at times. An anxiety-driven need for control and drive to avoid everyday demands can strike at varying intervals or in varying contexts, making it difficult to do what is expected of me (by myself or others). For example, for as long as I can remember, way back in childhood, being asked how my day was has made me inexplicably feel angry. This has never changed. Even if I want to, I feel utterly unable to give that information when it is requested of me. I can't express the anger that rises when the question is asked, because it is not reasonable. I feel bad because it seems like I don't want to interact with people and am shut off from them. Basically asking that question is a recipe for disaster! Sometimes I want to tell the person about my day, but if they ask, I can't. Sometimes I want to be able to do it so much that I am rehearsing on the way home what I will tell them, telling myself it will be OK, but I make it into such a demand of myself that I still can't. Or they ask before I have said it that ruins everything. If nobody asks and I don't plan it, sometimes it can slip out sneakily later and fool my brain. Because I didn't have to, I could. 

Exposure Anxiety. Perhaps even more pertinent than demand avoidance for me is exposure anxiety. I wrote a little on this here. It's basically a sensitivity to the awareness of your own existence. When attention is drawn to the fact that I am here, existing, I can find it hard to bear, resorting to avoidance, diversion or eventually retaliation responses. Things that may trigger that sensitivity include making decisions, making changes that might betray a personal choice, realising people are listening to you, your name being used, having a noticeable effect on the world, and many more. So obviously anything that invites attention, such as just talking can sometimes be difficult, never mind talking about something that matters to me and might betray the "me" that wants to stay safe in anonymity.

It doesn't occur to me that other people might not already know whatever it is that's in my head. I can't count the number of times I sat in my psychiatrist's office and had to be reminded that nobody can know what is in my head if I don't tell them... I mean logically I know that, but functionally I forget it quite often. Because things seem so obvious to me, I can't see how someone else could possibly not see them. I mean, I blinked for a split second longer than usual, how can they not know that I'm overwhelmed by emotions or memories and trying not to melt down?! I know that I'm worried about x, y, and z, they know about x, y, and z so they must know how worried I am. I have seen two pieces of information and come to a conclusion, so it would only be natural that everyone else has come to the same one, right?! I'm not quite sure how I manage to maintain this belief that I'm the same as everyone else when I know darned well I definitely am not!! I think I am getting better at this one in recent months though - certainly working hard on saying how I feel and what I need people to know (this is really hard, see exposure anxiety below) and checking whether I'm on the same page as other people rather than assuming.

I've already told somebody. This was a big one in the past and still pops up from time to time. Once I've told one person, I forget that not everybody knows. In my head, I have done "telling," I am past the "nobody knows what's in your head" stage, and so "knowing" is now the status quo. Except that of course "knowing" is only the status quo for the person I've told. If they remember me telling them. You can see the flaws in this brain glitch!

I forget that I could say things just because I want to say them. It's not only worth saying things that are so interesting somebody asked about them. There are many reasons someone might not ask,* but it doesn't necessarily mean they don't want to hear, and in the grand scheme of things, it usually wouldn't actually matter even if I said it and they weren't interested. But sometimes I forget all this!

*They might not know what I could tell them, so they don't ask. They might not want to be nosy. Many reasons, all of which affect me very strongly on the other side - I rarely ask questions because it doesn't occur to me that I can - I don't want to pry and I assume that people would tell me if they wanted me to know. I realise the complete incongruity of my approaches to sharing and receiving information!

I can't think of any things to say. Alternatively, I genuinely have nothing to say. This is my general state of being in everyday conversation. How do people think of stuff to say all the time?! I need a topic, specific pointers, questions, a thing to talk about. Even then I can struggle sometimes. 

I struggle to say things purely because I want somebody to know. This is slightly different from saying things because I want to say them - it goes slightly deeper. It is hard for me to overcome the feeling that if I am saying something purely to help myself, uninvited by somebody else and to benefit myself in some way rather than at random, then I am greedy for taking up time and space and effectively asking something of them (listening). This ties in a bit with exposure anxiety too.

I don't know how to say it. I know there is a thing that I want to say, but I don't know the words to make somebody else understand it. It can seem such a monumental task to work out how to say it that I don't even know where to start. If it's a precious thing, saying it wrong is worse than not saying it at all. Being misunderstood brings us full circle to the previous post and the importance of truth and accuracy. I find wrongness hard to tolerate, and if it is wrongness in someone's perception of my inner life, it is devastating. Sometimes I can't quite even work out what it is that I want to say or put it into words for myself. I may have to do a whole mind map to figure it out, or write for an hour or two. So it's no wonder really that things don't always pop out in conversation!

Gosh, twelve reasons I haven't told you! No wonder I get told off for not being communicative. And then start telling someone else the Whole Story and get told off for that. So start not telling the story again... And to think that I once questioned whether the whole "social communication" aspect of autism really applied to me!

Do tell me if you can think of any more reasons, or if you have great tips for working around them. Hm, maybe I should do another follow-on about methods I use to try and get past these obstacles...

Having just spoken to Mr Peggy I have realised that this post is a perfect illustration of telling the Whole Story and am laughing a lot that I am doing the very thing I just wrote about. And I realised that I could have answered with much more succinctness (definitely a word) his question about how the truth/everything being known being important interplays with telling nothing at other times: it's binary. Like so much in an autism brain. I'm either telling, or not telling. If I'm telling, you'll have to deal with the Whole Story; if I'm not, you'll just be guessing. 

I even worked out the parameters I would ideally work in for what gets told: things that people need to know, things they want to know, and things I want them to know. Trouble is, I still have very few ways of knowing how to allocate Brain Things into those categories! Ideas on a postcard again please!

The beauty of a reasonable adjustment

Oh bless the beautiful little cotton socks of my GP surgery (and the invention of the SHOUT service that does not require verbal communication, and the people who have worked to help me accept my needs).

With the encouragement of the volunteer on the SHOUT line last night, I psyched myself up for one last phone call (feel I'm doing well on the resilience front here!), to my GP surgery, to explain my situation and ask for help.

I went in autism-focused, spiel written, and began with "I will read it out. Please don't interrupt until the end because I have autism and will get mixed up." She listened and waited until I had finished, before asking if she could continue. She said she would get a doctor to ring me back.

And here we reach the climax of the work I have achieved: instead of being a good patient (or just being overwhelmed and on autopilot) I responded that that would be a difficult problem!! And the beautiful woman uttered glorious words, the like of which have never previously been heard from the mouth of a GP receptionist (or something...): "would email be any better?"

Dear lady you, you, are the Queen. Nothing would be better than email. 

When your communication needs can't be accommodated

At the risk of becoming ranty, I'm turning to trusty Mr Blogger once more to solve all my life's problems. I mean, to help me process things that happen and deal with my emotions in a non-destructive way, of course!

I have a particular problem at the moment and I can't find a way to solve it. I've tried really hard to make it work and I've resiliently asked for help and expressed the problem multiple times, but to no avail. Hence I fear this is just going to turn into a rant.

I knew there would be difficulty in having all my post-discharge support remotely (in hospital, I had support to access remote appointments and to debrief after them and still had trouble managing), and I knew the adjustment from 24/7 care to 2 remote appointments a week would be challenging. I also knew that the phone and video calls were my only option, so I got on with it. I found things that helped: using my headphones so I can hear better and am not filtering out extra sound to hear the voice on the other end, buying extra data so I can take my support team for walks - it's easier to engage and process when I'm outside, and once I've used the movement to help me regulate at the beginning of the call I usually feel better able to sit somewhere and manage the rest of it. I take time out in my sensory cave when I'm feeling overwhelmed after a call. I am trying so hard to make it work.

All these things help, and mean that on a good day I can get benefit out of an appointment even though I come away exhausted and often realise shortly afterwards that I didn't say what I needed to say, or that I didn't process something properly and missed out some conversation that could have really helped both of us.

But on a bad day I can't communicate properly. I can't say things at all so the person doesn't even think I'm communicating (often they probably think that I'm managing with the remote conversations because I am engaging and talking about some useful stuff). They go away because they think it's a bad time to talk, and I'm left feeling even more alone, hopeless, trapped and useless because my one chance at getting some help has failed. I have to survive until the next opportunity. Which I still can't access properly because I'm still autistic. 

I have a meltdown afterwards. The only way I can get help is by dialing another number. I don't know why I think this will help. Maybe I don't, but it's the instructions I've been given and it's my last shot at trying to help myself. I'm working on resilience. Keep on trying. Unsurprisingly I struggle with that phone call. Eventually they get some information out of me. They say they'll get my nurse who knows me better to ring me back. I can't tell them that I've only spoken to her 4 times anyway and another phone call is going to add to my distress and overload, not solve anything.

She rings back later and it's a disaster for both of us. She shouldn't have been put in that position, but it wasn't anyone's fault. I couldn't give them the information they needed. I'm the problem. Another meltdown. It's a good job I've lost all sense of public decorum or awareness of anything beyond my distress or I'd be very embarrassed by my behaviour.

I get home and stay safe the rest of the day, thankful for the presence of Mr Peggy. All the blankets, time to write an email apologising for my distress on the phone and trying to explain my problem (this email to send via my other nurse, because they're the only one I'm allowed to email). Comedy TV. They all help me keep calm until the night time. The odd half hour of sleep here or there. The anxiety builds before the second of my scheduled phone calls of the week, with the poor Peg from yesterday. I can hardly bring myself to answer it. It's my last attempt at engaging in this remote support - I'm going to have to go it alone after this. I know where that is likely to lead.

The phone call doesn't help. She can't fix anything (not her fault), I can't fix anything. She goes away, not wanting to overwhelm me with telephone conversations, but meaning I'm support-less for another 8 days. "Ring the office or the crisis team if you need any more support." Great plan.

I've tried all avenues, so I guess it's like it's always been: you have to cope alone and you should be able to. I spent seven months being told it's OK to be different and have different needs, and being helped to work things out, but none of that's true in the real world. Your needs are unreasonable. The 8 days may well be longer, because I'm not sure I can face the disappointment and distress of another phone call and its aftermath. 

Sometimes lockdown is really 💩

And the OT, insurance people and car servicing people trying to ring of me may as well go stick their heads in an oven (although actually, often if you explain your difficulties they do accommodate and communicate by email...).

Doesn't play well with others

Been writing a lot, not about me. Clues as to the kind of week I've had. I felt a little bit hypocritical posting wonderful posts about wonderful things when the internal life has in all honesty not had an enormously pretty week. Half term hasn't sat right, I've been surviving instead of replenishing as I'm supposed to in the holidays, and I'm scared witless of what will happen when I go back to work because of that. Poor Mr Peggy has barely seen me, and when he has I haven't really been there. He doesn't know about any of this because this is the only way I can manage to tell him. Sorry, and thank you, and I love you.

Anyway... enough of putting you honestly in the picture! The Brian told me to write about being misread, and the dangers of performing too well.

Indeed, I have required every coping method under the sun, good
and bad, and as my doctor commented, a few more besides!!

It's a well-known fact that people with autism (including people who speak and people with Asperger's) have difficulties with communication. Stereotypically, verbal people with ASC tend to take things literally, don't always get jokes, misread social situations etc etc. But how often do we talk about what happens the other way round? What about expressive communication?

When people speak and have honed their copying and performing skills sufficiently to generally pass as "neurotypical", it is likely that others will forget or be unaware that they may have difficulties with expressive communication. If you're "social" enough to survive conversations and social situations then you're one of the crowd and judged by their social rules.

That can be gratifying, but I discovered today it has its hidden dangers.

My doctor's surgery very usefully has an online service, which is great for people like me. I can book appointments without the dreaded speaking machine (well, if there are any... and not with nurses or Urgent Care), I can check when my appointments are (hello last minute - or any other time -anxiety!) and I can read my notes on there too (useful for all sorts of reasons).

I read my notes after an appointment and realised I had come across as "guarded", "closed" and elements of my demeanour were noted. Now, I don't have a problem with these observations because the are entirely accurate in a way, and I imagine are clinically useful, particularly in the context of how I may present at different times.

The thing is, although they would conjure up a very accurate image of my outward appearance, the assumption about my inner state, specifically my intentions, is misleading. My motivation (albeit subconscious) in avoiding eye contact and curling my legs up is to increase my communicative capacity. Despite appearing guarded and closed, by regulating my sensory and emotional world in these ways (eye contact is stressful and exposing at the best of times, and increased touch/proprioceptive input over more of my skin is calming) I am trying to con my body and brain into thinking they are safe and that it is OK access the important and very personal information and then to try and give that to somebody else.

The long pauses and short answers are testament to the difficulty I contend with to produce even the little information I am giving. They don't mean I don't want you to know. They mean it's even more important that you do know. They mean I know it's important and that's why it's more difficult for me to get it out. I need extra time, more clear and specific questions, understanding. (Although sometimes I might not be able to tell you because you've asked... that's a different matter and you'll probably receive exceptionally clear "I don't want to talk about this" vibes, even if I do want to talk about it but can't right now because you've just asked!)

So, the observation that I am needing to feel safe and I am not communicating is absolutely valid and a useful indicator of mental state, but it is easy to misinterpret these presentations as implying a wish not to communicate instead of the very real and painful need to communicate. I would hazard a guess that this doesn't just apply to me.

The thing that got me was that I wouldn't have known I came across that way unless I had read those notes, and it makes me sad to think that people might interpret my behaviour that way. Think of the potential impact of a lifetime of that kind of misunderstanding on someone's social life. And wellbeing. If I cross my arms it's because I need some more physical feedback, not because I don't like you or don't want to talk to you.

To dare to expose something real and important about oneself - a wish, a choice, a need, a feeling - is a terrifying, monumental task (when I finally finish the book I'm reading about 'Exposure Anxiety' I will write a big old post on it!). For some context, consider that my brain tells me that a blink of the eyelids or a pressing together of two fingers may even be an immoderate display of emotion; anything more could be an unforgivable betrayal of the insides. Please don't misinterpret my efforts to battle the anxiety brought on by even contemplating such a task as outing the ins.

So when you next see some communication expressed, question its intention rather than assuming what you would naturally infer. Use your knowledge of the person and their nature. You can try asking if you're not sure. We may or may not be able to answer. Maybe we'll write a blog post about it later.

When ASC becomes ASD: do I need help?

Although I technically class as having a disability, I don't tend to consider myself as disabled. Generally speaking I am well-enough adapted to function in mainstream life without my autism spectrum condition disabling me significantly. I know my strengths and weaknesses, I no longer feel that I must participate in situations I find especially difficult and I am surrounded by people (family, friends and colleagues) who understand me enough to allow me to function my best and partake in full time work, leisure activities and as much socialising as I require.

Recently it was suggested that I may find it beneficial to have some kind of advocate or support person to help me in certain situations such as medical appointments. I took this as very caring overdramatisation (definitely a word, if you were wondering), along with many of the other things that were said at that time. People who care about me and want the best for me but take things a bit too far.

As I reflected I realised a part of my mind knew they were right about many of the things, but the uppermost part - the poorly part - disagreed. They suggested a person to support me again. I considered the idea enough to mention it to family members who very sensibly didn't take one "side" or the other, and merely allowed conversation around the matter.

You see, I have autism and a mental health condition, but I am highly functioning. I am fiercely independent and a perfectionist. I have always been a high achiever; someone who doesn't need help. This now means in my head that I don't deserve help, I am not eligible for help and that I am being greedy, wasting people's time and resources and being attention-seeking if I accept (or, perish the though, ask for) help. And if I tried asking once and was rejected, then no chance! And anyway, I've had loads of help for my mental health and my workplace go above and beyond to support me and let me perform to my potential.

Until yesterday.

I've had a recent health blip related to my mental health. I asked for help just before I wasn't able to any more, and then my brain went to the place where it didn't want any help. Everybody had stepped into action but I didn't want it. They were all looking after me when I couldn't do that for myself, and I had a follow-up appointment yesterday when things had evened out somewhat health-wise.

I was on a high when I came out: the doctor was happy for me to be working because I'd told her I felt better, my tests had improved. In fact, she said that perhaps I'd had a virus the previous week accounting for my symptoms. Yippee! Back to normal just like I wanted.

But half an hour later I found myself in tears. I realised my colleagues were absolutely right. She hadn't asked any of the right questions, and because of that I hadn't given her the right information. I didn't know how to tell her, or correct her mistakes, or question her conclusions. I didn't even process that she had got it so wrong until after that. When the people that know me - Mr Peggy, work Peggies, CMHT Peggies, urgent care practitioner Peggies and even mental health charity Peggies - are all concerned, that should make me question the judgment of one GP who gives a different opinion. I let her tell me it was all fine. That's what my sick brain wanted to hear anyway - it will have a field day with that. But there's a part of me somewhere that wants to be well, and if it saw this happening to someone else it would shout, and shout loudly.

She was right in a way: I am genuinely feeling better and I am genuinely fit to be at work, but she was not right about the rest of it and I did not have the processing capacity or the communication and social skills to address that.

So I come to conclude that perhaps I am more "disabled" than I thought. Maybe I need some help.

I'm so thankful I have such wonderful Peggies looking out for me

I'm not 100% convinced so if anyone has experience of using an advocate or somebody to help them with navigating difficult situations, (eg. helping them to identify and communicate what is in their head and to work out confusing questions about recovery, work, autism and mental health) please get in touch - I'd love to hear from you about how it worked, what worked, what didn't etc etc.

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."

Failure or Progress? When the autism monkey invades

This term has been going pretty well. Admittedly I've flagged a bit since week two, but we're on the home straight: 4 of 7 weeks completed and this is the last week of my evening commitments so I know the next two weeks will have more space. I've got much better at dealing with things, understanding and communicating my needs and so on and so forth, so have been quietly looking forward to completing a whole half term clean: last term (an 8-weeker) only held one drama and that was solved by the new and groundbreaking technique of going home and recovering (shocking I know!).

We had a great time!

Then came this week. I misjudged the weekend, having a wonderful day dancing on Saturday with friends, but instead of taking Sunday as a nothing day I took the utterly wild decision of doing an hour's shopping on my way home. This sacrificed my alone time and I had jobs to do in the evening once Mr Peggy was in. I should know better, but sometimes I get complacent and think it can't cost too much to do one extra Thing at the weekend (I generally limit to one Thing per weekend, and try to keep alternate weekends empty, having learnt that this allows me to function during the week). Turns out it does if you're me.

Monday nearly finished me off and I knew I wasn't on top form for supporting some of our little people, so I did a Thing (bold just to differentiate from the Things above!!). I found Mrs School and told her I thought I needed to call in sick for tomorrow. Mrs School has been on this whole parade with me and understood what a Thing it was and was very proud of me for my great achievement. I spent the rest of the week being congratulated by various people for this step in my development: rather humorous but very powerful. How grateful I am to be surrounded by supportive Peggies who are invested in wanting the best for me.

So, having done the Thing I returned on Wednesday, back to functioning level and feeling rather pleased that my bravery had paid off. Yes, I did mourn the loss of my clean half term and deal with some rude Brian behaviour but I came out on top and realised that I am still the winner because actually, I recognised the need and acted on it before ending up in disaster-land. I was able to reflect that a half-term with a day off and without crisis at work is a better achievement than a full half term having dragged myself along at 25%, lost progress on my mental health and needing the full holiday just to begin recovering from the term. Yay! Well done Peggy!

Enter FRIDAY MORNING.

SQUARE PEGGY is much as she has been every morning. She struggles to get out of bed and reflects that actually, she does pretty well day to day. When you consider that by the time she gets to work she has overcome several difficult transitions and sources of anxiety (Getting out of bed, getting out of the shower, leaving the pets, getting out of the car. Dealing with the anxiety of possibly being late, what might happen during the day, whether she's been an acceptable human being etc.), it's reasonable that she sometimes feels a bit wobbly. 

FRIDAY MORNING presents SQUARE PEGGY with an email announcing that the weekly Friday morning meeting (that she panicked for the whole journey she would be late for) is cancelled. She doesn't cope well without this meeting and if she misses it her Friday always feels uncomfortable. FRIDAY MORNING then informs SQUARE PEGGY that assembly is semi-cancelled and to take place in classrooms instead.

SQUARE PEGGY cries in a bathroom for 20 minutes to process this information, then gets herself to class. She plans to try and tell someone it isn't a good day but this is difficult to communicate. She tells herself that if she can get to lunch time she is doing hydrotherapy in the afternoon and that will be OK. She can do this.

As she goes to collect the children FRIDAY MORNING informs her that the pool is closed due to illness. Five minutes later a visitor she had forgotten was coming for the morning enters the room. She holds it together until the children are safe and settled in class and excuses herself to visit the bathroom, where she cries for another five minutes. 

Long story short; Friday is not spent at school either. I've not had the week I was expecting, and today hit me right out of the blue when I thought I was fine.

A tramp on my moor solves a lot!

I have come a long way though: I am now able to reflect with less self-criticism and take on others' comments about the difference between this week's wobbles and those in the past.

On Tuesday I called it before it got to the stage of turning into a crisis. Full on win.
Today I had no idea it was coming, but actually I overcame the first wave of Bad Stuff and didn't completely melt down even at the second. I was able to verbalise what the problem had been, I didn't have to wrap myself in my blanket and calm down for half an hour, I could accept that maybe it was sensible to go home. I went home even though Mr Peggy was there, and I told him I was coming. I looked after myself on the way home, because I'm learning that I am not an exception to the rest of the world: I make progress when I am safe and cared for, not when I am told off and criticised.

I still have an ideal of perfect functioning that I feel substandard for not meeting, and the outcome isn't what I was looking for, but neither is the outcome entirely negative. I am learning, I am progressing, and as that happens I may well move more towards my ideal of functioning. But if I don't, I will accept that. I have autism. This means some things are more difficult for me than they are for other people. It is sometimes hard to be me, but it is not wrong to be me.

Review of William's Den

Not my usually blog post, but I just loved this outing. I had at least as much fun
as the person I took with me! https://www.williamsden.co.uk/

What an absolutely fantastic place! Having heard about William’s Den from colleagues in a special school, several of whose classes had visited for their summer trip, I decided to give it a try with one of the young people I work with. We were not disappointed! The site is great in that it provides and endless range of opportunities through carefully thought out resources.

There are many different types of resources, from traditional children’s climbing frame equipment with slides, ladders, monkey bars and more, to water play and sand play (with tethered accessories including funnels, pulleys, and all different methods of processing and exploring sand and water!), zip wires, sticks and planks for den building, balancing and whatever else comes to mind, tunnels and hills, wide open spaces (yet all safely contained), a wild grass meadow, mud kitchen, tyre swings of different shapes, a grass theatre and more.

It is a place where the imaginations of children of all ages can run wild. It is designed to encourage interaction (circles of swings instead of lines, and countless opportunities to collaborate on projects of all descriptions). It invites playful, exuberant whole body movement and children and adults of all ages can be seen running, climbing, balancing, tipping, hanging, stretching, falling, swinging, crawling and sliding as they play. If you want to know why I’m raving about that, visit www.jabadao.org. More and more research is highlighting the terrifying effects that our society’s lack of value in movement is creating. One study showed nearly 90% of children beginning school with physical development below expected levels, which impacts on learning in all areas. (And I’m so annoyed that I can’t remember where I learnt that! Here is an article that could have used the same source as whatever I watched or read.)

And if you’ve ever wanted to see an example of somewhere that facilitates learning through play, I couldn’t point you to a better site! Not only is it a natural environment for physical play and  collaboration and communication encouraging language and social development; the possibilities for exploring every area of the curriculum are tremendous. Real-life maths and science come into their own as children of every stage of development explore sand and water at their own level, filling, pouring, using pulleys, building simple or elaborate structures. Problem-solving skills are put to the test, and experimentation is invited as the resources are versatile enough that they do not just suggest one use, but can be employed however the imagination leads. Resilience, risk assessment and many other vital areas of psychological development are also promoted and supported through the environment. For sensory learners there are not just a lovely range of natural textures to touch with different parts of the body, but opportunities to create sound and experience vestibular and proprioceptive movement. As the young person I visited with is very mobile, I’m not the best to comment on the facilities in a physical accessibility context. Hopefully somebody else can! I would say most of the site is wheelchair accessible. There is a "disabled toilet" but I wasn't able to inspect and it is not advertised as a Changing Place. A person requiring a hoist would be unable to access the upper levels (and much of the equipment) as far as I know, but if a one or two person lift is safe this would enable use of many of the ground level areas.

The whole site is built responsibly with sustainability in mind. The play equipment is made from natural materials which are “pre loved” wherever possible (which also makes it aesthetically pleasing and a calm environment! On which note, I noticed as the day quietened down towards evening that there was relaxed but pleasant music playing: a welcome change from the tinny, jingly or slightly manic music often to be heard at play venues!), rainwater is harnessed to power the toilets, and even the floors and ceilings are made with waste and recycled materials. This is just a taste - for more see https://www.williamsden.co.uk/sustainability/. I can’t comment on most of the food, but if the ice cream is anything to go by, the cafe dishes out first rate grub (but there are also covered and open air picnic spaces), and as well as the usual knick knacks in the shop are some lovely toys which reflect the ethos of William’s Den (accordingly priced!).

And when you get tired there’s even a room upstairs accessed from the climbing frame with a beautiful view out over the surrounding landscape, with great big bean bags and some soft bricks for building if you or your child is in need of a more relaxed spell.

Staff are attentive, all areas maintained constantly to a good standard, there is a space to put your mobile number on your child's wristband if desired, there are food places with visibility to the play areas, and from outside one set of toilets you can also see through a large window to keep an eye on any remaining children or so your children can find you easily.

In a time when so much time is spent indoors looking at screens, interacting through technology rather than face to face, here is a place where the whole family can spend quality time interacting, exploring and developing. I can’t recommend it enough!