This too will pass

I am sad tonight. It's an evening when school staff unanimously celebrate: the last day of the summer term! We've all been awaiting it for weeks, counting down, looking forward to the peace and quiet and all the things we will do in our spare time. But I am so very sad, almost unbearably. My sadness, like my autism so often, is invisible. It's too difficult to get it out of me to share it with somebody else, so nobody will know what's going on inside. They say we have no empathy.

I will miss my children. Their parents would perhaps not approve of my calling them "my" children, but I have spent 30 hours a week with them for a year or more, and they are a huge part of my life. Most of them will not be in my class next year. I will miss them climbing on the tables, I will miss them throwing the sand, I will miss them giving me a shove and a shout when I annoy them. The twiddles of my hair, the tired cuddles, the new words, the tiny breakthroughs. Will their new classes learn quickly to understand the words that I translate so naturally? Will they realise she needs to perch up high and learns better by watching from a distance? Will they find out how much he can do with the right boundaries? How will their summers be? What will they see and hear? Will they have opportunities to have fun, explore, learn and relax?

I will miss my grown ups. All the team in my new class are new to me. When I go back to school that first day, I won't be going in to my classroom, my home, with the people who welcomed me, accepted me and became my friends. From the very beginning I felt I could be myself with them, and I willingly invested many spoons in getting to know them, allowing them to support and encourage me, and hopefully doing the same for them. The new team are very nice; all very lovely people. But will they "get" me? Will I ever be able to be comfortable? I can't explain what it feels like to anticipate those first few weeks. It's like starting a whole new job, but one that I never even applied for. Walking into a room of strangers, and having to spend all day with them. And all of the next day, and the next day, and all the days to come. When just up the corridor is a classroom full of the people who are almost like family.

These are the obvious things that I will miss over the summer and in September, but I've discovered that right now I will also miss school. I will miss the routine, the familiarity and predictability of the different things we do each day. This is the bit where I'm different from my colleagues. I've started to almost get some kind of "holiday anxiety." It's come from observing over previous holidays that I don't function as well when I'm out of routine. My sleeping pattern gets messed up: my eating pattern does the same. I get grumpy because I'm not doing as much exercise. I either see too much or not enough of the outside world. I find it very difficult to find balance.

So tonight, as everyone is out celebrating, I am scared about the coming weeks and particularly September (I started having problems last September after the holidays, and I hadn't even moved classes then; how on earth am I going to cope this time round?), and I am very sad to say goodbye to the children who have become such a big part of me, and to be separated from the people who have got me through some times when I really thought I might break this year.

And you would never know.

We like resilient people: unconscious stigma

As I've mentioned before, I'm really lucky in my workplace. When I disclosed to my employer she showed understanding by acknowledging the trust I was placing in her by telling her, she checked whether there were any ways in which work needed to be accommodating me, and she didn't make a big deal out of it. She's never treated me any differently. Not that everything's been perfect, but I've always felt accepted and safe. When I started having some difficulties a few months later she again looked for ways to accommodate, and she encouraged me to share my diagnosis with my immediate team and facilitated my doing this. She was right: it did help. My close colleagues are amazing and it's largely due to them that I haven't exploded or dissolved entirely during the last few months!

But over time I have also noticed that even though I work in such a supportive environment and one that is by nature highly aware of disabilities and differences, there remains an underlying low level of stigma, or perhaps lack of understanding. 

It was highlighted by one particular comment which stuck in my head a week or two ago. We had been discussing how a colleague had worked fantastically hard and achieved great success in a training course when home life was really hard. The throwaway comment which hit me like a ton of bricks was "we like resilient people." 

Now I'm fairly sure the comment wasn't designed to have the effect it had on me, but because the person that made it knew I had been really struggling for quite a while, the spontaneous sentiment metaphorically floored me. I really haven't been feeling particularly resilient recently! Do we not like people who are using everything they have just to keep afloat? Are non-resilient people worth less? I suppose to a business they are. If they require more time or work from leadership then that would make them a bit of a pain. Nobody likes a whinger.

It's just a bit sad and frustrating that just as I am learning to try and articulate the problems I have and ask for the help I need, I am once again reminded why I have always found that it's best to just hide it all away and get on. Don't make a fuss, don't cause a scene, don't require time or attention, and most of all, don't appear weak. We like resilient people.

I'm very tempted to put my tortoise shell back on and keep on crawling.

Full up

I'm often trying to find ways to explain what it's like being me, or what it's like inside me when I look or behave a certain way on the outside.

I've been using one phrase recently that I think reflects it in a relatable way: I'm full up. It's what I might previously have described as feeling grumpy (and still do sometimes) or extra-autism-y, but it's not really just grumpiness, and it's one particular sub-set of being extra-autism-y. A particular type of Square Day.

Many of the children I work with are on the autistic spectrum and some colleagues and I were talking a while ago about how unsettling Christmas can be for the children because they need and are used to a low stimulus environment. Suddenly displays start going up all over the walls, their routines change to accommodate Christmas activities and all sorts of other things bombard them.

Which room makes you feel calmer?

The phrase "low-stimulus environment" suddenly made me think. I've never really thought of myself as someone that has big sensory issues and I certainly don't get sensory overload, though I do get social/emotional overload to varying extents at times. But I suddenly realised that when I get grumpy and feel irritable and don't want to answer questions or talk to people or look at them, it's because I'm already full up.

It's like there's no room inside for the extra words or sounds or touch or visual information. Any input seems like too much.  I don't get the thing where everything mashes together like you see in the YouTube simulations of sensory overload, and I would rarely have a meltdown or shutdown: I would control my response and reaction while with people, to present one that is outwardly reasonable although it may seem a bit irritated for no apparent reason.To any onlooker, it's probably a subtle, almost unnoticeable change, but inside I'm getting fuller and fuller and it takes more and more effort to keep the lid on. I suppose it's the background social/emotional/general stress/anxiety levels that are making me full up, but the result of that is that I can't tolerate any physical stimulus either.

In this situation I have no capacity to give out any of those things that are too much to receive either (e.g. answers, words, eye contact). This can be hard for those around me if they don't understand, as I just appear to be withdrawn, and I can't enter into conversation about it, probably just saying I'm fine. I'm getting better though - sometimes I can say I'm feeling grumpy and it's not their fault or something to that effect.

The best treatment is to leave me alone and completely minimise input of all varieties, which is fine for a day or a few hours, but it's really tricky when I go through a patch of feeling like that most of the time. It's not fair or realistic for people like Mr Peggy to stop giving me input or receiving from me. Any ideas how to manage times like this?

While I've been exploring this thread of thought and beginning to understand a bit better, I've also been thinking about how stress levels from different stimuli interact and cause different effects in me: the outcome or "symptom" of the stress often seems entirely unrelated to the cause of the stress, which I find quite confusing, but I think it works something like this:

Specific stress IN                                                                          Specific noticeable "symptoms" OUT

eg.          unexpected change                                                                                   eg.    avoiding eye contact

               waiting for something      ➘                                                                     ➚         irritable at questions 

  having to make decisions ➙ General stress/anxiety/arousal levels rising  ➙     not talking    

              being tired                        ➚                                                                       ➘       stimming but not       

         a horrible smell                                                                                                    touching others   

This accounts for how I can be experiencing the "symptoms" of being full up but not recognise a related or specific trigger. It's like there's a transformer inside, masking the nature of the input, so it can be a mystery to work out what's really going on!


So after that ramble, I think what I'm trying to say is that being full up is a comfortable way I've found to describe that mental state where the background level of stress/anxiety/stimulation from any one or a variety of causes has got to the point where even any extra sensory input makes me want to snap, and that the causes of this state may not be blindingly obvious or apparently related to the type of stress I am showing. It was a pretty groundbreaking realisation for me, but probably common sense to others! I'd be interested to hear whether others identify with this so do let me know by commenting or sending a message.

Instructions on how to hold a conversation

This was going to be the post on "what is reasonable in conversation and social interaction" but it has turned into a list of points that I must consider when making conversation. They're just off the top of my head so it's definitely not exhaustive, but certainly exhausting!

I often struggle with what is reasonable to say. I used to just say very little in group situations or with people I didn't know well, but I have got a bit better in the last few years: gained some confidence, realised people think it's weird if you don't talk, realised people may actually sometimes be interested in what I have to say. The trouble is, sometimes I can have real trouble knowing whether to say the thing that's in my head.

It should be relevant, but it is OK to slightly change topic to something related. Is my thing related enough?

Has the conversation moved on since I thought of what I was going to say. While I was waiting for a suitable entry point, is my thing still relevant?!

It should be interesting. There's no point taking the floor in a conversation if what you have to say isn't interesting.

There should be a point to it - a reason for saying it, and a potential route for the conversation to extend. Dead ends are very embarrassing.

Funny is good. People like funny, and people find sarcasm/being slightly rude about people you get on with/literal interpretations funny, but only to a certain extent. If they don't realise you're being sarcastic or joking they can think you're really mean, and literal interpretations can go completely over people's heads if they don't think literally.

Things don't always come out how you meant them, and what was meant to be a perfect interested question or a light witty comment can inadvertently cause great offence or embarrassment for either party or both.

I used to think the rule was never to talk over somebody, but actually I have observed it is quite a usual part of conversation. So it's sometimes normal to carry on what you're saying if you accidentally start talking at the same time as someone else, but how often? What if you both stop, and then debate about who should go on? Should you insist they do or should you go first? Is it related to how important your thing is?

You should say enough, but not too much. If you don't say enough, you are boring and weird and a nobody. If you say too much, you are boring and weird and annoying. But how on earth are you supposed to work out how much is enough and when it becomes too much?! What if you just can't think of anything to say?

What is the appropriate length of answer to give when people ask a question? Is a one-word answer enough? Is an anecdote too much? Am I supposed to return the question after I have answered it?

You should remember what people have previously told you and ask appropriate questions. Asking questions is a good way to keep conversations going, if you can think of some. I like to listen to other people, and other people like to talk about themselves, but sometimes they won't until you ask a question.

What is the appropriate response to a compliment? I used to always brush compliments aside as they make me uncomfortable but I have been told this is rude and negative. I think you're supposed to say "thank you" and perhaps make a related comment. Then I have a feeling it is usual to return the compliment. But not the exact same one, because that's weird. So find something else to compliment them on. Do you always have to return one or is it sometimes OK to just accept one?

How much should you look at the person you're talking to? Must give some eye contact. But not too much.

How long should you talk to somebody for? This depends on a whole gamut of variables!

How should you end the conversation? It's good to have some rehearsed exit lines up your sleeve to try and avoid awkwardness.

And I haven't even started on how (or whether) to enter the conversation in the first place!