Sensory Series Part I: Sensory Experience can be Shared

I've had a blogging hiatus. No particular reason, but I haven't felt the urge to write anything for a while. It's been an interesting time in my life, blog-writing hasn't seemed to be the right response, and I have perhaps had less space for bloggy thoughts to develop.

The idea has been tapping at my brain cells a little recently though, and I thought autism awareness week would be a good opportunity to make a comeback (missed it slightly!). I've had plenty of food for thought, with some genuinely life-changing training through my job, which will probably come to you soon in some form or another!

What I want to talk about today comes from a bit of a journey of sensory awareness that I've been on recently.

I've discussed before that I don't have too many really troubling sensory problems, but over time and with discussion with people similar to me I have come to realise that my sensory world nonetheless has an enormous importance in my life.

It has the power to make things a bit more tricky (I am thankful that it doesn't generally have the power to render me drastically less functional), but more importantly it has the power to make things amazing! My sensory world (which is really just my experience of the world) can hold the key to calmness, freedom, joy and even connection to others.

Curling up in a blanket always wins!

I learnt fairly quickly after discovering my autism that I can benefit from sensory input. Touch and proprioception are the biggest ones for me: I love to be wrapped tightly in a fleecy blanket or to wear clothes that give tight, even pressure, I love to lie on the floor, I feel safest when curled in a ball, when as much of my body surface is in contact with something else as possible.

Recent training with JABADAO in "Developmental Movement Play" gave me so much insight to the importance of awareness of our bodies' sensory needs - for myself and others - that I will probably write a separate post about it (or several!). It is no exaggeration to say that my life and the lives of those I care for have been changed and will continue to change as a result of the time on this training.

This was the first time that I discovered that positive sensory experiences didn't have to just be for me, on my own. They can actually be an invaluable form of communication between people, much deeper and more fundamental than linguistic communication that people with spoken language naturally turn to.

Upside-down is good too!

Through JABADAO and my work, I also came into contact with Creative Humans, whose director Amy Manancourt not only runs this truly inclusive (a word I'm actually not fond of for many reasons, but Creative Humans really are just a group of people being and creating together) company but provides massage therapy and yoga therapy too. Amy demonstrates a profound understanding of the body and what it needs. Through practising my own movement play and visiting Amy for treatments, I have begun to attend to my body and what it needs, having a greatly beneficial effect on my wellbeing.

At my most recent treatment, Amy suggested that I attend her company's upcoming workshop for an opportunity to move my body. It didn't take much persuasion, and as I knew pretty much what to expect, my excitement overrode any anxieties I would normally have about the new situation. I was not disappointed. My anxiety tends to be primarily social- and communication-based, and I have to say that this is probably the least stressful occasion I have ever attended!

Now, movement play is all about bodies and what they need, and communicating on a fundamental level without words getting in the way or lack of words being a barrier. Words are simply not used. Even (or maybe especially?) for a wordy person like me, this is a perfectly freeing environment. At the workshop, I didn't have to negotiate anything verbally. The session begun when I arrived, and I could just slowly join the area, moving as my body wanted to.

What took me a little by surprise was how much and how easily I connected with the other dancers and participants. There was freedom to observe, to copy, to try things out, to make suggestions, to be alone or to be with others. I was strangely aware of the therapeutic effect of the environment I was in. I was truly me, and actually connecting in the most real, authentic way that I ever have. It was safe, I was real, and I was a part of things without having to pretend or "translate". I had only really experienced that maybe twice before: once during an "experiential" session on my Music Therapy module at University, and then during the JABADAO training when Penny (Penny Greenland; JABADAO founder and director) came and worked with me briefly.

For me it's novel to be calm whilst connecting

Movement play was just the beginning of my journey with sharing sensory experiences. It works with the touch, proprioception and vestibular senses, which tend to be my "best" - my "go-to feel-good" - senses. If I need to put myself right, get myself feeling right in my body, feel real, it's movement, curling up, wrapping up that do it for me. So I suppose it's a bit of a no-brainer that I felt I had found my people when I discovered this area of work.

However, starting from that point has prepared me for an expansion of awareness of my sensory world and the possibilities of connecting through it. The other training I have been on this year has been with Joanna Grace of The Sensory Projects. Jo is a sensory engagement and inclusion specialist and came to my workplace to deliver a training day on Sensory Stories. Just as with Penny from JABADAO, I could have spent days listening to Jo! Some people seem to have an almost endless well of insight, wisdom and experience to learn from, and an engaging manner of presentation to match. These are two of those people!

After the Sensory Stories day (which I would recommend to anybody working with sensory beings - people whose primary experience of the world and understanding thereof is sensory rather than linguistic - or in fact many others in the care or education sectors) I was lucky enough to be able to attend Jo's annual training day on Sensory Engagement for Mental Wellbeing. I was astounded and quite outraged to hear that although one study found 84% of their survey group of people with PMLD (profound and multiple learning disabilities) to be displaying signs of low mood/depression, most of these people have no appropriate mental health support because they are unable to access what is routinely provided. Add to this that the problems are often not recognised due to apparent lack of change in wellbeing, or changes being attributed to pre-existing conditions, and it can make for a pretty dismal state of affairs.

"You have time for me" is another of the
strategies for mental wellbeing

Thankfully people like Joanna are working to change this by finding and sharing strategies to support the mental health of sensory beings: how can we make it true for every person that "I am safe", "I can effect change", "The world is a place I can explore" etc? I'm not going to go into an of the content here, but you can find Jo on her website (see link above), Facebook, Twitter, LinkedIn etc.

My point in all this rambling is that I began to properly link together sensory input with its effect on my mental wellbeing (and to begin to observe that in others). When working with sensory beings, here is a basis for the fundamental connection that I feel so strongly through movement play: a place where people interact as equals, both providing valuable input and opinions. It doesn't only happen through movement - that is just where I found it first, and maybe the most meaningful channel for me.

When we find that point of true connection, we do wonders for the wellbeing of both parties.


P.S. This post had a sequel but I deleted it in a moment of brain malfunction, so you'll have to wait until I've re-written a less good version. Sorry!

What is reasonable?

One of the worst things about being autistic is that I have found I often have no idea what is OK, normal or reasonable.

I always used to think I was pretty objective and mostly knew what was normal, reasonable or accepted. I never really questioned my responses to things, but I think this was because growing up at home my family and few friends were pretty easygoing and pretty similar to me. We never felt the need to dictate to each other how to do things or what opinions to have. We were often approaching things from the same direction and our opinions were often similar, and when they weren't, it was fine to differ and that didn't threaten or offend anybody.

In the last couple of years my experience of different people from different backgrounds has widened, and the proximity I am in with some of them is a lot closer, and it led me initially to questioning, and then to a lot of confusion.

I will ignore questions of fact here, as fact-based disagreements are more a matter of negotiating by tact and I covered this a little in my previous post on memory.

It's opinions, expectations and ways of doing things that are more of a problem, when there is no "right answer" or each party is equally convinced of the correctness of their perspective.

I know that my opinion or way of doing things isn't necessarily the only valid one, and a different way may seem as good to someone else as my way seems to me ("every man is right in his own eyes"), but I also know that I am entitled to an opinion.

I find it really difficult to balance these two points. How often should one give way to another? For many years it didn't occur to me to form my own opinions, and when I did I rarely expressed them, assuming that they were erroneously formed or otherwise invalid. When I eventually developed a sense of myself I realised I was sometimes right when I differed from others and I became able to stand on my own two feet, but I lost some of the gentleness I had before I realised it was OK to be me.

I can't sustain denying or hiding my (autistic or personal - if indeed it is possible to distinguish) opinions the way I used to, but I can't bear the thought of trampling on other people to be me.

So I suppose I am now wondering just how much it's OK to be me. Are my expectations, desires and opinions reasonable or not? Are they any more or less valid because of autism? (eg. I really hate that particular smell, and it's not just a matter of opinion, but how do you explain that to someone else, and if they love that smell, it's surely not fair that I can just say no, denying them something that brings them pleasure.)

I think it works something like this, but how
do you know what is a want and what is a need?

It's all about compromise and negotiation, and everybody having a bit of give and take. The trouble is, I have no idea how much of each and where and when, is reasonable! And there is no objective way to work out how much something matters to someone else either. If something bothers me a little but I know it's a big deal for someone else, it's easy for me to compromise to accommodate them, but when it bothers me a lot, it's hard to know if it bothers them a lot too, and whether I'm being reasonable or not.

When the problem continues despite repeated attempts to explain, then I assume my reaction must be unreasonable and I must learn to deal with the issue, no matter what it costs me. Can anyone tell me whether this assumption is correct?

I think it also depends on who the other person/people is/are. A matter is often easier to resolve with work colleagues because you are less emotionally involved and afraid of offending them, and I think it's understood that people will differ and just get on with things in their own way, which is harder when it's things in your own house with your own family.

I was also going to write here about What is Reasonable in conversation and social interaction, but I think I will split it into two posts as it's becoming a bit lengthy!

So I think there are no magic answers to working out what is reasonable, and that each case is different depending on the situation. That is what makes it such a tricky subject, because there's no objective "fairness" formula and no quick answer. I just hope that as I get older and more experienced, these conundrums will become clearer to deal with and I will get better at accepting other ways of doing things.

Please comment if you have anything to say on this matter - it's a really tricky one for me!

What is AS for me?

In no particular order, here are the things that AS means for me in my life.

Uncertainty is a huge issue for me. Maybe the biggest. If someone says "maybe I'll do this" I will spend the next indeterminable time period repeatedly going over the options of what will happen if they do or don't do that thing; how my day will look, what will I need to expect, what will I need to be prepared for, and I will be constantly questioning "does that mean they will do that, or they won't do it or they themselves don't know yet (in which case, again will they or won't they end up doing it?)", trying to work out the probability of each of the myriad possibilities of how the day will run. And the thing they are doing could even just be "I might go and buy milk" or "I might make a cake." If there is any uncertainty at all, the issue will remain in my mind as unresolved, like a flagged or unread email, demanding attention until resolved. If there is any emotional involvement with any of the options the chasing of thoughts escalates and often comes out physically in my body as feeling sick (if worried) or in repetitive gestures like finger wiggling or fist clenching if excited (though I think I manage to keep these down to only in private).


Another aspect of uncertainty is uncertainty of people's expectations. I need clarity in what is expected. I am very happy to do a task for you if I know exactly what you want, but if there are options and I have to guess, it becomes very stressful for me. If I know something is expected but I can't deliver because I don't know what or I don't have the skills, the situation seems inescapable to me and this has been the trigger for quite a high percentage of my 'shutdowns' or whatever you want to call them. The same applies to what is expected of me in a certain situation, for example when I am unsure what or how much I am expected to say, whether somebody is expecting a reply or whether they are making a joke.

Change is difficult to deal with. This can be change in my surroundings, like a rearrangement of furniture (even just a turning around of something on the work surface. Why? Why change things if they're fine? It's all wrong now. Something inside reacts and I don't even know what. It's like my whole world has been turned upside down. I can't work out what it is that I feel, but it's wrong. If someone can explain a reason for the change: e.g. "it makes more space on the surface" this can help) or a change in my expectation for the day. I think this could be linked to uncertainty, because if one thing has changed, how do I know I can rely on anything else to be as expected? As a side note, for me, big changes are often easier than little ones. This is probably because they are usually less sudden, more thought through, more expected and more prepared for. Somebody parking their bike in "my" space is completely unexpected, hits me just when I'm preparing to settle down into my own safe world after people-ing, and makes me want to cry, and sometimes shout and bang (again, why would someone do that?). It takes a while before I come to terms with the fact that I could park my bike elsewhere, and even then that space is wrong and my insides are wrong.

Searching for something else I came across this scale. I wish I could use it to show people how I feel about change. Sometimes I am at least a 7 on matters where other people may not have even realised they have made a change.

Inconsistency makes me all wrong as well. How does it not stick out like a jack-in-the box popping up in your face to people? It might be spelling inconsistency in a document or inconsistency of policy/treatment of people (this is touching on unfairness, which is entirely inexplicable and unacceptable for me), or things moving about (where has someone decided to keep the washing up liquid at work today? Why can't it just live in one place?!), or people saying one thing and doing another. I want to scream and shout "what are you doing? How do you think this is OK?"

The Plan is everything. The first thing that happens when my brain switches on in the morning, before my eyes open or I think about anything else, I work out what day it is and what is happening that day. I flash through what to expect, whom I will see and interact with, roughly how those interactions will go, what I need to take with me and wear (this I will have prepared the night before). Sometimes I know there is a question mark about something, for example, I am going to work but I don't know for sure whether we will be swimming in our swimming session or whether a certain child will be poorly. If I know there is a question mark, I can deal with that, but if something changes unexpectedly that can be more difficult, depending on the change and its implications. The most difficult ones are changes that affect my 'down time' or 'me time': if The Plan was to have the evening in alone and this changes, for example I have to go out unexpectedly, I will be quite stressed about it.

If somebody suggests something that isn't in The Plan I tend to automatically react in the negative. Don't be ridiculous, of course we can't do that. If I have time to adjust, however, I might come round to the idea. Which brings me to:

Time.  Because The Plan is so important in keeping me calm and functioning smoothly, I need time to adjust The Plan in my head if it is going to alter. Some changes I can write in fairly quickly; others can take days or even longer. If you want to go out for lunch, giving me at least a day's notice is probably a good guide.

Also under time, I need regular time to myself. I think of my stress levels, or busy-ness levels (maybe arousal levels in scientific terms?) on a scale, maybe 1-10. On a normal day at work I'm maybe on a 5; a big social gathering of people I don't know would be a 9 or 10. Relaxing at home with my husband is one of my favourite things and bring me down to maybe 2, but the only time I'm 0 is at home on my own. I'm completely me, just being, and that needs to happen a couple of times weekly to allow me to manage the rest of the time.

I also need time to get to know people and feel comfortable in situations. I probably won't call you a friend until we've spent quite a lot of time together and shared quite a lot (and I don't share with just anyone!). I have to learn to trust people and learn whether new situations are safe.

I'm pernickerty, picky and fussy about a lot of things that seem entirely insignificant and baffling to other people. Also on being fussy, certain textures, smells, sounds I really dislike. They don't usually cause me physical pain but make me want to shout or cry or flap and stamp or shake the feeling off my fingers. Bad grammar makes me twitch and it's hard to not say anything about it. The washing should be hung up just so, every fact should be accurate and precise (my memory is annoyingly better than a lot of people's, so when they recall a past event wrongly it's very bothersome, and vagueness is just messy in my head). Things should be where they belong, our days should run according to the timetable in my head (The Plan, I suppose), and everything should be predictable.

Related to this, I can be a bit of a perfectionist. If I'm going to do something I want to do it properly, to the best of my ability (or better, quite often!). This means I can often be unsatisfied with my work or not seem to value it or take pride in it, whereas it may just be that I'm not quite satisfied that it was perfect, or I'm disappointed that I couldn't make it as good as I wanted. It can also mean that I'm not the quickest worker on the block. The job might take longer but it will be thorough and accurate if I have my way. I also struggle with guilt when I think I could have done something better and this goes for relationships as well as tasks.

I'm honest. You can generally rely on me to tell the truth. Usually whether it's wanted or not. I try and be socially acceptable in this department, though I don't get it right every time. But I won't lie to you and will always give my honest opinion. You can rely on me to be loyal to my friends, do my best to do the right thing, be fair, and look after the underdog.

Not me. I only dream of such an attitude!

I have some interests. I'm quite interested in them. I like to spend a lot of time pursuing them. They are calming and predictable and very enjoyable. I find it difficult when I can't do them.

I am very caring. I want to look after people and for them to be OK. I hate it when people are mistreated or sad. It doesn't necessarily make me sad, though it can do, but it is wrong and I feel a very strong sense of care or pity for the person involved. I will be there for the person that needs me, especially if I know how to help (annoyingly, I don't always - understanding and responding to emotions can be tricky - but that has been covered in other posts). Sometimes all you need to do is sit with somebody or give them a hug.

I like animals too. Weirdly, I feel like we sort of understand each other. And they are nice to cuddle and don't ask questions or talk to you. They aren't complicated!

Decisions are difficult (but there's a separate post for that). I see so many aspects to consider, and so many pros and cons.

I sometimes get overwhelmed (by my or others' emotions, or by a lot of social effort, or something unexpected) and need to get away. If it's too sudden, I might have a bit of a shutdown, which for me often includes crying and shaking. I can't talk to people and I can't look at them for a while afterwards (my eyes are usually shut during most of it). If it's not bad enough to cause a shutdown (which thankfully I don't get too often), I can take some time to myself at home alone and watch some TV, read or think to recover. Sometimes being outside in nature alone can serve the same purpose.

I look at language a bit differently. I rather like it, and sometimes I like to play with it. I understand most simile and metaphor, and quite like them really, seeing them as a bit of an art, but I often take things literally if I don't recognise them as figurative language. If there is more than one possible interpretation of something, for some reason I don't always see the one most people see first first (my Mum says I always seem to pick the least obvious interpretation). People can think I'm being awkward, but usually it is me genuinely having to search for the right understanding for the context. I like humour and like to make people laugh. I used to be rather a punner but not so much any more, but I still enjoy playing with language.

"As much use as a chocolate teapot" is one of my favourite similes :)

Creativity is something I have a love-hate relationship with. I love the idea, but I'm actually not very good at it and find it quite scary and very pressuring and stressful if someone is watching or expecting a result. This is quite entertaining when you think that my passion until I was about 20 was music, and from then on, dance. I love to do them, but I cannot create them for love nor money. Improvisation always made me feel sick and clam up. I can't compose for toffee. Or even chocolate, which I prefer to toffee. I could never write a story from my imagination: in primary school I dreamt

The story was about an
escaped hamster!

up one story based on true events and adapted it to fit every brief. But I really do appreciate the creative arts. I can get lost listening to music or watching dance and in a room on my own I put creative expression into music or dance where the notes/steps have already been written. Particularly with dance, though, I also appreciate the technical side more than perhaps most enthusiasts. I would watch class with at least as much pleasure as a performance and I don't need a story to enjoy a performance (it can even become overwhelming if I let myself be drawn into an emotional story eg. Swan Lake or Giselle). I find it very difficult to encourage the children in my class with role play and imaginative play because I can't think of how to extend what they're doing.

Nearly forgot about this one as it's so obvious, but social situations are also a challenge for me. The more people the worse it is, the less I know them the worse it is, and the more expected of me/attention on me the worse it is. I worry beforehand about whom I will talk to, what I will say, what I will do if I can't find the answer to either of these, when and how I will leave, whether I will say anything inappropriate, whether I will be boring, whether I will say enough or too much, whether I will look ok, whether I will do any silly things with my body, etc etc. When I am there I am still worrying about most of these things, especially how to carry on a conversation and things like that. A lot of worrying and feeling sick, and I will be tired for several days afterwards if it was a big one. It is just exhausting making sure you're doing everything right!

Help!

Small gatherings of up to 5 or 6 where a family member is at least one are manageable and don't put me down on social energy for too long, and I even enjoy these sometimes.

In addition to the feelings brought on by the event itself I also struggle with feeling guilty for not enjoying an event which is obviously supposed to be pleasant, which somebody has put on for everybody to enjoy and maybe even partly for me, so then I may have to make sure I adequately persuade that person that I have enjoyed it, even while trying to recover from the strain it has put me under.

Even just a break in the staff room or a meeting in the corridor can count as a stressful social encounter: what do I say? Where do I look? How do I finish the conversation? Is it bad to sit and not say anything? Can I make my drink last the whole break/Do I look daft sitting not talking with an empty cup? Is it OK to join in someone else's conversation/nod and smile as though joining in with it?

Communication can be difficult. Although I am a very language-minded person it can be quite difficult to express myself properly about important things. Often I only think of what I should have told somebody or asked them quite a while after a conversation has happened. This can mean I can seem rude unintentionally, I can miss out on opportunities, my opinion can be overlooked (well, not expressed to the relevant party rather than necessarily overlooked by them) and I can become frustrated. Sometimes I don't know what I want to express, other times I don't know how to express it, and others I just can't make myself do it at the right time and place. I work better in written communication where I have time to consider matters, think about my real response to them and formulate that into something that will be understood properly by others.

I am funny and silly and clever and quirky. I have a great time with a few good friends and we enjoy each others' company. I might not be everyone's cup of tea but if we get along we really get along. I stick by my friends and we help each other through all sorts and have a lot of laughs on the way.

These are just the main ways I can think of at the moment of what AS means to me, for my life, but I feel like I could keep writing forever, or at least enough to fill a book! I might update if other important things come to mind. I also have a big list of quotes from a few books (Asperger's Sydrome, A Guide for Parents and Professionals, T. Attwood; Inside Asperger's Looking Out, K. Hoopmann; and Finding AS in the Family - A book of answers, C. Lawrence) that I felt really were pertinent to me when I was reading around before diagnosis, if that is of interest to anybody.

Surprise Square Day - Communicating

I'm having a Square Day today and this is what it can be like.

Today I didn't even realise it was a Square Day. Maybe I'll call it Surprise Square Day. It's been a Square Week or two actually, but I had a quiet day yesterday and knew I had the empty house to myself all afternoon so was feeling quite round this morning.

Dragged myself out of bed (always a struggle. It's just so cosy!), even spoke to Mr Peggy before showering (never usually a good idea to speak to me before I'm properly awake!), got ready for church full of the joys of spring, or something like that.

The walk was lovely with Mr Peggy. The sun was actually shining. We chatted about this and that. Holding hands is always good: I like touch. I felt very slightly wrong inside (this is a feeling I can never explain, but was hardly noticeable this morning) but everything was good, there was nothing to worry about and I was looking forward to the day ahead.

But when we got there people started talking to me. I wanted them to go away. I was rather surprised: today is a good day. Why do I want them to go away?

Now normally all this stays inside and I do my best to pretend like a good person that I am just like everybody else, that I like talking to people and so on. But Mr Peggy is a very wonderful Mr Peggy and quite often says that he would like to understand more about how AS affects me and what it's like. Naturally, having AS, I find this quite difficult to do, though I would love him to know and understand everything, but I made the effort to share.

I said 'I don't like the people today.'
Mr P: What?
Mrs P: I don't like the people today.
Mr P: What do you mean?
Mrs P (thinking 'what is there to explain?!'): I don't like them.
Mr P: Who?
Mrs P: All the people (gesturing)
Mr P (slightly frustrated at his non-communicative wife!): I need a bit more than that...
Mrs P (finally managing to work out a little what she doesn't like about the people today): I don't want them to talk to me. I don't mind them being there but I don't want to talk to them.

It's quite entertaining reading it back, but it's the sort of frustrating scenario that AS throws at me and those close to me quite often. They are frustrated that I am seeming to be awkward by not explaining things or answering properly and I am frustrated because I can't understand what else there is to know. What they also may not realise is that although that still probably wasn't a very satisfactory answer it took a huge amount of effort and self control to be able to give it.

Not sure if it's because

• It takes me a while to figure out what I'm feeling myself.
• Even once I've figured it out I don't necessarily know how to explain it to someone else.
• I don't like explaining things when I'm feeling square. I want people to know but I hate telling them. Why can't they just be in my head?
• I don't know what they want to know - I forget they're not in my head so I don't know where to start.

Why are you asking me questions? Why do you want to know? Why don't you already know? Why do I have to tell you? I don't want to talk. Go away. (But really, I'm glad they don't go away. It's the ones that stick with it and help me make the effort that make things better for all of us. Thank you Mr Peggy :))

Sometimes I think it would help if talking didn't have to happen. When I'm feeling square it's harder to talk. I can't find a way to explain why at the moment but I'll try and think about it.