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!

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!

Awkward from the inside: what it's like being the person who looks awkward

Sometimes I think things are going pretty well and I'm managing OK, and I was just thinking over the last week or so how I was really pleased that although I am tired and busy I've not been feeling too 'autistic tired.'

Then along came today and reminded me that really I am autistic, and I'm just not like other people, and I can't do the things they do.

Two events during the day reminded me of this, the first coming straight away when I got to work. One of my colleagues has been going through an absolutely terrible time with some really sad and traumatic stuff to get through, and she started telling about it mostly to my other two colleagues (she knows them well, but doesn't really know me as I only started there a few months ago when the stuff started happening, so I don't feel I can really ask about it) while I was also standing nearby.

Well, I have so much empathy for her, I just want to be able to say or do things make make it better for her, or at least for her to know that is my intention. But I have no idea of the things to say or do. I don't know her well enough to go and give her a hug, and she hasn't told me personally about any of it, which I wouldn't if it were the other way round, but obviously she has talked about it when I'm there so I know about it. I didn't know whether I should go away and busy myself with another job so she could talk to them, or whether I should join them, I had no idea of anything that would be the right thing to say (luckily the other two had loads of great words) and couldn't give her a hug or anything.

I think this is how the whole empathy thing plays out in real life for me. I care so much, and I understand others' pain, but I am often incapacitated to do anything about it, unless I know the person very well. So it looks like I don't care, which is just the opposite of the truth. Or even worse, I could make it worse by being awkward, so I try not to do that, and not to give the impression of being uncomfortable, because that's the last thing someone in that situation needs.

I wish people could know I want to be with them in their sorrows and trials, their downs and ups, and I want to help. Maybe one day I'll learn how.


The second situation was a celebration for a colleague I barely know, with basically all the staff present. Painfully awkward from beginning to end. I stuck myself like glue to the two people I work with and copied them. Where do I walk? Where do I sit? Quick, bag a seat next to person I'm hiding behind. Shouldn't have my back to anybody, but have to here. Who should I have my back to? I can't just do nothing, must follow them to get cake or people with think it's weird if I don't eat anything. Accept a drink, any drink - it's too difficult to choose and you're weird if you don't have one. Just say anything's fine, or "surprise me" (not "whatever": that's rude even if it means the same thing). Listen to the conversation, focus, stop zoning out and examining your fingernails, don't rub your nails on your face, make appropriate noises and faces so people don't notice you haven't said anything. Safer not to say anything even if you wanted to: it might go wrong, people will look, it won't come out how you meant, people won't know why you even said it. It might stop the conversation. So just make the noises and faces. How soon can I leave? How do I get out? Who do I need to say goodbye to? What do I need to do with my glass and rubbish?

And go home. To an empty house: I need that right now.

Wish

As a photo never does justice to a sunset, my words are a shadow of what is within.

The special people are the ones who saw, who looked for a way in to what was underneath. Time. They gave the inside me a value, they gave me hope that I was reachable and worth reaching. They saw my quietness in the chaos of many lives.

They help me be the me I want to be (but can't imagine) and let me be the me I am.

Gently find the way in

Hold me

Listen to my silence

Need people, but the people hurt.

I need nobody, too.

Is it worth the payback no-one sees? Payback just for me.

Inside, but I can't get it out. Inside, but I can't get in.

So much, so much inside. I wish you could read me, like a book. You could tell me the story.

Love. Love so much it hurts. No empathy is a lie, a misconception.

I wish

But how?