Still looking for acceptance

As expected, this weekend hasn’t been great.

Nothing’s really gone particularly wrong. I’m just so aware of the act that I’m putting on. It puts such a strain on me. I don’t want to have to do that any more.

But I also need to feel accepted.

And there’s no chance of that if I don’t put on an act. Not just with my parents… it’s feeling at the moment as though there isn’t really anyone who will accept me as I actually am.

But if I put on an act all the time, I will lose myself again.

It’s not helpful at the moment that things are still so uncertain in a number of different ways. There are too many moving parts. And I am unsure who I can trust; unsure of who is telling me the truth. I’m scared to reach out to anyone in case I’m rejected again.

I am trying to look for any positives in my situation at the moment. I can’t find many. I don’t know how to change things. I can’t really think clearly until I get some stability – but that is such a long time coming.

I’m not sure I’m going to be able to pull myself back from the edge this time. I don’t think I’m worth saving.

I think I have enough courage for a few more days. After that, if nothing is resolved, I’m scared that I’ll be out of strength and out of options.

I’m just hoping nothing else goes wrong.

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Going into hiding

I think this is going to be a difficult weekend.

I’ve become so much more open with most people about my condition. There are strategies and aids I use to help me manage and communicate. I still get upset when I make social errors, but I’ve been working – with some success – on not being too hard on myself when that happens. (I remain hard on myself for most other reasons.) I’ve stopped being self-conscious about appearing in public wearing a rather obvious autism wristband; in fact, it’s almost become my safety net.

But this afternoon, I’m driving up to see my parents.

And I can’t be open with them. They don’t understand why the label has made a difference to how I act. They expect me to act in exactly the same way that I did 18 months ago. And I try to meet their expectations, because I’m scared that if I don’t they will cut me off completely.

But, as time goes on, hiding who I am now just gets harder.

Every time they visit me, I have to run around putting everything to do with autism or mental health in a hidden cupboard or high shelf – both literally and metaphorically. Every time I visit them, I have to remember not to pack – or to hide away – the things I use to try and keep myself grounded.

I feel torn between two worlds; two different ways of being.

I resisted the label ‘autistic’ for a long time. But I’ve become comfortable with that as part of my identity.

But it is part of an identity that I don’t think my parents will ever accept.

I think this is going to be a difficult weekend.

Autism in different eras

These are a few random musings. I’ve no historical evidence for any of these statements; they are just my thoughts and hypotheses.

I’ve been wondering for a while about whether the present time is a good or bad time to be living with high-functioning autism. (I’m only talking about high-functioning autism here because a) it’s the type I have and b) I am not sure any era would be particularly good for someone with a different type of autism.)

I’m still undecided.

In previous eras, the condition would never have been diagnosed; the term itself wasn’t in use at all until 1911 and then not for the condition that we’d recognise as autism today. But there would have been some options for someone with autism to be accepted.

Someone with autism could potentially have gone into the church. There, there would have been set rules to follow. A strict routine. And the possibility for solitude if needed. And, looking at the, er, more interesting ideas coming from some of those of an ecclesiastical bent, the minor strangeness of those with high-functioning autism may not even have been noticed… (I do wonder whether the religious life was used almost as an early mental health institution in some cases.)

And through most of history there seem to have been strict social rules to follow. The Regency and Victorian period took these to extremes, but at least it would have been possible to know where you were and how you should act. Well, if you were well-to-do, anyway. If you weren’t, then I suppose it was just a matter of doing what you were told. Maybe not such a good time to be autistic and logical, particularly if you’re female.

Men with high-functioning autism probably would have fared rather better in history than women (hmm… sounds familiar!). Eccentricity would have been a lot more tolerated in men, particularly if they had scientific minds. That, in many periods of history, would not have been accepted in women. Nothing much has changed there, then, although thankfully women seen as ‘odd’ are no longer in danger of being accused of witchcraft and burnt at the stake.

In today’s world, differences are more understood – which can only be a good thing.

However, society generally seems to be rather more fragmented now than it was in the past and it’s difficult to keep up and understand when things change. Cultural norms seem to change more quickly and the pace of technological change is huge. (I find it incredible that people reaching adulthood this year have never known a world without Google; where information had to be gathered and collected rather than just typing words into a search engine and having information at your fingertips.)

And, although differences may be more understood, I am not sure they are any more tolerated or accepted. Technology makes it easier to find communities of the like-minded, but I wonder whether it’s at the expense of having to live with people different to oneself. And although diversity is talked about a lot, I don’t know whether in practice it actually exists. I’ve certainly noticed changes in the way some people treat me since my diagnosis.

I’m not sure there’s ever been a perfect time to live with autism. I definitely wish there was some way to go back in time and live a simpler and less confusing life – but, on the other hand, I’d struggle to give up the technology which has become a lifeline.

So I remain conflicted.

But I live in the time I live in, and so have to try and make the best of things if I can.

And I still hope that one day I’ll be accepted.

Maybe the best time to live with autism is actually the future.

Obsessions and bad cover versions

Obsessions are strange things.

Sometimes they can be helpful: distracting, soothing, comforting. I can lose myself for hours.

Other times, they are extremely unhelpful.

That’s where I find myself at the moment. I’m stressed and unhappy. I’d normally try and find solace in one of my obsessions. I really wanted to spend a day reading today. But unfortunately, one of my obsessions – and what I’d be reading – is murder-mysteries. Which is… probably unhelpful, considering.
So I’ve been trying to focus on other obsessions instead, just to try and keep myself occupied. But it hasn’t been altogether successful. I’m having a bad day with audio processing so listening to music isn’t really helping that much. I’ve been playing a bit – but my fingers are still really sore from the concert on Saturday (five hours of having to apply significant pressure to metal strings will do that), so I’ve only been able to play for an hour or two. I keep running out of energy on the computer games I’ve got loaded.

But all I really want to do is lose myself in a few good books.

I have rediscovered a couple of my favourite songs, though. Which I wanted to share with people. But… I can’t find them on YouTube. So I decided to record my own versions. (Please ignore the quality of the singing, guitar and recording. If I could have found better versions to link to, I would have done!)

This song is exactly how I feel at the moment:

And this one makes me feel calmer when I am down:

Just a quick update

It’s been quite a challenging few days and I’m still feeling quite vulnerable.

The good: I played in a concert on Saturday. And, barring one missed entry (not just on my part!) it all seemed to go quite well. Although there ended up being a few people there that I knew, which was difficult because it was unexpected. Also, my parents were there – it seemed odd to have them present in the new life I’ve been trying to build down here.

The bad: I tried to kill myself again on Saturday evening (Yes, I am getting help. And have no plans to try again.). Absolutely nothing to do with the concert. Which takes me to…

The confusing: Something happened on Friday that’s made me completely reassess who I can trust; who I can believe; what I may or may not have misinterpreted in the past. This is one of the things I find difficult about autism. I’m socially clueless. And when people tell me things, I tend to believe them. I can’t judge when someone is telling the truth, so I have to either believe everyone or disbelieve everyone. And I am (still!) absolutely distraught about where this takes me.

So I’m now trying to get some sort of a plan together to get me through the next few days. Lots of music. Lots of writing. A couple of trips out so I don’t have to be completely alone.

I’m still hoping that things will get easier at some point; that everything will fall into place. Although I don’t know when that’s likely to happen…

Looking for quiet

It’s been a nice day here in Sussex today, and my foot finally seems to be on the mend, so I thought I’d go on a trip out to try and manage my anxiety. It always gets worse when I’m housebound – although I’m definitely not the fittest person in the world, I find physical activity calming. So it’s difficult for me when I can’t walk.

Today’s excursion was to Bodiam Castle. Which is a lovely place in lovely surroundings. Well, it was from what I could see…

I couldn’t stay for too long. There was an incredibly noisy group who kept shouting and it was simply too much for me from a sensory perspective. I had to leave.

And this is where it gets difficult and controversial.

The group were all disabled. I don’t know what condition(s) they had. I do know that their behaviour and volume was probably not in their control. So it’s not as though I could ask anyone to get the group to be quiet (unlike an unruly school trip, for instance).

I’ve come across this difficulty before – ironically, with some autistic people who have noisy tics.

I don’t know what the answer is. To manage my own disability, I need quiet and calm.

But there are people whose disability means that they are noisy.

So who “wins”?

There’s been a lot of publicity about various autism-friendly cinema screenings and theatre productions recently. I love theatre, in particular, but the sound effects and lighting can be difficult for me. So you’d think that one of these would be perfect for me.

But what you get – and I have tried one of the cinema screenings – are people moving around and being vocal. They can’t help it. But I can’t deal with that. My ideal would, I suppose, be an environment where everyone knows and abides by conventional theatre / cinema rules – just with the sensory aspects ‘dialled down’. That would be my ‘autism-friendly’ production.

I suppose it’s the autistic version of the introvert v. extrovert conundrum: that the world organises itself for noisy people.

I really hope I get my new earplugs soon…

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Bodiam Castle, East Sussex

A bit of a dilemma

I love music. Some of my earliest memories involve musical activities. And I’ve been playing seriously for almost 30 years. But I’ve always found some aspects difficult. Particularly when it comes to larger-scale orchestral playing.

In hindsight, most – if not all – of the difficulties I’ve faced in the past were to do with autism. The social aspects of being around groups of people. The sensory difficulties with some pieces of music.

But knowing why the difficulties exist doesn’t make them go away.

I’m learning to cope more with the social aspects. That difficulty isn’t unique to orchestral playing – and, in some ways, it’s easier for me to be in that environment because there’s automatically a shared interest. So there’s always something to talk about; and there are always people who are far more knowledgeable than I am about the minutiae of classical music (I love music; but that particular aspect isn’t one of my obsessions).

The sensory aspects remain more challenging. And that’s what leads to a bit of dilemma.

Since joining the orchestra in which I currently play, I’ve generally managed by hiding at the back. This means that, unless I’m suddenly put in front of the trumpet section, I’m not really near other instruments (apart from the double basses, who tend to be quieter and their parts tend to complement the cellos anyway).

However, this time around I’m a bit further forward in the section. Closer to the ‘main’ action. And I’m finding it really difficult from a sensory perspective. It’s making it difficult to concentrate. I’m missing entries because I can’t do something as simple as count the number of bars’ rest. The notes on the page turn into moving dots and I’m fully reliant on muscle memory to play – but I don’t know the pieces well enough for that to be a workable option.

I’ve so far avoided a full-scale sensory meltdown in rehearsal. But it doesn’t seem too far away.

I’d hoped my new earplugs were going to arrive in time for the concert next week. That’s not going to happen; even if they turn up next week, I’m not going to have time to get used to them.

I’ve always been OK in concerts before. Hopefully that trend will be able to continue. But the dilemma is what I do next. Last concert my ‘hiding at the back’ technique didn’t work. This time, I haven’t been able to use the technique.

I don’t want to give up. But I just don’t know how to make this work.

Everyday challenges: interactive theatre

All right, I’m stretching the definition of ‘everyday’ a bit.

I do like interactive theatre, though, and Brighton Fringe is a great place to see and experience it.

However… it does bring its own challenges for someone with autism. Mainly to do with the interactive bit. I can’t always play nicely with other people. I’m not always in a position where I’m able to interact with the cast. And if someone pushes me to engage, I’m likely to have a meltdown.

This is one of the reasons why I try not to go to these types of things on my own. But yesterday, it was a binary choice: go on my own or don’t go.

And even though there were bits that didn’t quite work for me (someone shouting right next to my ear is always going to hit some of my triggers), I’m glad I went. And my bracelet worked (I think) – at least I wasn’t forced to individually participate! Which wouldn’t have been fun for anyone.

As it was, there was far more enjoyment than endurance. Which makes a nice change.

And if anyone’s near any of the tour dates, I can thoroughly recommend this show: http://www.thejohnrobertson.com/thedarkroom/

I also got a T-shirt that I was very tempted to wear to my therapy session today.

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Maybe next time…

It’s all gone horribly wrong… again

The title of the post says it all.

I thought things were getting better. I was wrong. Everything just became too much again.

And now I’m not at work for a while, I am completely isolated.

Even last night, in an environment where I thought the purpose was to be supportive, I was made to feel as though I shouldn’t have spoken; as though my views don’t matter; as though I shouldn’t be there.

Is it wrong to need people? Is it wrong to wish that someone wanted to contact me first, to ask if I was OK?

Because at the moment it feels wrong.

I’m trying to do things to make myself feel better that don’t rely on other people. I’ve taken myself off to one of my favourite places. And I’m supposed to be going to an event tonight, which I’ve been looking forward to. But even that makes me feel sad; I was supposed to be going with a very old friend but they let me down because other people were more important to them.

For the first time I wish I’d been diagnosed earlier. Because I had to spend so much time hiding, not being able to be myself. I wasted so much time. And now I can be more open. That’s great. But everyone else I meet already seems to be settled; they have no room in their lives for another friend.

Maybe I just need to accept that the only thing left for me now is a hermit life. The problem is, that’s not the life I want.

The curse of the well-meaning

One of the many unexpected outcomes from getting the label ‘autistic’ is how many people’s attitudes towards me have changed.

There are some people who really ‘get’ me; who see me as an individual; who want to help. And that’s fantastic, and I am grateful to and for those people.

But there are more who seem to want to try to help. But who base this on what they have read or seen; what makes them feel good; what they think is best – without considering the needs of the individual.

It’s hard to criticise anyone for that. I wouldn’t expect anyone else to get it right. I don’t even get things right most of the time. And most people are so well-meaning.

Yet I’m sensitive to tone of voice. I hear the change in tone. I hear the condescension creep in. I notice that I am treated as though I am a child, rather than a fully-functioning adult. I bristle at the assumption by strangers that I have a learning disability* and am incapable of understanding ‘normal’ language.

The worst thing is when people start doing the neurotypical version of mansplaining. Yes, I am aware that not everyone has the same interests. Yes, I am aware that not everyone will like everyone else. I’m autistic, not completely clueless.

It often makes me question why people spend time with me. Whether it’s because they like me in my own right, or because they think they’re doing a noble thing and it makes them feel good. And this is one of the problems with autism: I don’t know how to tell the difference. So it makes me more cautious; less trusting; less willing to believe that people actually care.

Which doesn’t help when what I need is a friend…

 

*Autism is a developmental disorder, not a learning disability in its own right; some autistic people have an accompanying learning disability but my IQ is about 100 points too high to qualify!

In a bit of a reflective mood

The last few days have given me a lot of time to think. Perhaps too much time.

I haven’t yet come to a decision about a couple of things.

I still feel sad and lonely. I’m still more tearful than I should be.

I wish I wasn’t alone.

But it’s been peaceful. It’s given me the space I needed. And, despite some challenging circumstances, I’ve been managing the whole autism thing quite well. (Although I had a bit of a wobble today when people kept pushing in queues – other people not abiding by normal social rules is definitely a trigger for me.)

Which makes me wonder whether it’s not so much the condition that I find difficult, but the particular circumstances in which I find myself much of the time.

And I’m not sure what the answer to that is. Or whether there is an answer.

Here, I’m all right.

When I’m home again, I don’t know whether I will be.

But tonight, the light is amazing. And if I take nothing else with me, it will be the memory of the light to add to the pictures in my mind that I use when I’m trying to calm myself down.

And, although it’s very bad poetry, tonight I felt inspired to try and write for the first time in ages:

Evening, Port St Mary

I cannot tell where sea meets sky.

The air is scented, cool, and still.

Above me flocks of seagulls cry;

Behind me sleep soft-focus hills.

 

The waves break gently on the shore.

A yacht sits quiet in the bay.

There is no tumult any more,

Just calm night after restless day.

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A slightly scary day

Normally the only sensory issues that I notice causing me a problem are sound and sight.

Today, I discovered a different sensory issue: one with proprioception.
Specifically, the issue of trying to keep my balance on uneven ground while trying to undertake a rather undulating coastal walk.

I can’t read maps either. Which is probably why I ended up having to navigate an incredibly narrow path (can’t have been more than 18” / 45cm wide) with gorse bush to one side and a sheer drop to jagged rocks on the other. Not a sensible place for me to be. Particularly in high winds.

I couldn’t hold my balance. I fell. And now have over 100 puncture marks in my hand and leg.

If the wind had been coming from the other direction, I wouldn’t be bruised and bloodied from the gorse. I would be dead.

I don’t know how I feel about that. I don’t mind the idea of dying. But I don’t think that would have been a ‘good’ death. I think it would have been frightening and painful.

Other than that, I’ve actually coped with my autism fairly well today. Including having to do a few things that I would normally find incredibly challenging. Including an impromptu telephone call and no-notice visitors (housekeeping issues!)

Maybe I’m still in shock…

I did get some good photos, though. Here’s my favourite.

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Looking out towards the Calf of Man

 

 

Everyday challenges: travel

This is going to turn into a bit of a travel blog for the next few days!

I’m writing this from the Isle of Man, but it’s been a bit of a challenge getting here.

I’d finally accepted that I could do with some help when travelling, so had requested special assistance from the airline. Which I thought I’d managed to do online. And when I checked in at the machine, a message came up saying that I needed to go and actually speak to a person. Which all gave me a sense that everything was going according to plan.

Not exactly.

I tried to explain to the person that I’d requested assistance but he just thought I wanted to check in bags. I was getting increasingly anxious and the only thing he asked was whether I felt confident to fly today. Then he directed me to just go through security – which is one of the things that I thought I’d booked assistance with (the airline’s website refers to an ‘escort’ from check in to the plane).

Luckily security wasn’t busy. Although I was still getting increasingly panicked.

Managed to calm myself down once I got through, and came up with a plan B – to ask at the gate. As the other thing I need when boarding a plane is to get on early so I can get myself settled and not get caught in a queue (I often manage to get this when I can’t walk too well). This is something else that the special assistance allegedly offers.

That didn’t work well either.

The person at the gate said that people with mobility issues needed to get on last for safety reasons. I tried to explain that wasn’t why I’d requested assistance (and I don’t have mobility issues today anyway). Again, she didn’t understand what I was saying. Anxiety hit again. Trying to calm myself down by playing with my koosh ball and starting to tap my fingers on my leg. It wasn’t really working. To the extent that the gate staff decided to call someone to make a decision on whether I was OK to fly as I seemed so nervous.

Luckily, that person actually listened. This is where the label is helpful – being able to explain that I’m anxious because I’m autistic and my special assistance request didn’t work, and all I need at this point is to be able to get on the plane early.

So I ended up getting part of the help I need and had requested.

We’ll see what happens on the way back. Not particularly looking forward to it.

The Isle of Man’s lovely, though, from what I’ve seen so far. And this is the travel / photo blog bit:

On the bus from the airport

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A new friend

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Evening walk

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Panorama shot of Port St Mary

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Seeing the funny side of things

One misconception about people with autism is that we don’t have a sense of humour or that we can’t understand jokes or sarcasm.

That may be the case for some people on the spectrum, but it’s certainly not the case for everyone.

Having said that, I’ve never really understood the appeal of ‘normal’ jokes. And I don’t understand why slapstick is funny.

Here’s an example of a joke that used to upset me as a child, and I still don’t understand the humour as an adult:

A priest was taking a walk when he saw a small boy sitting on the pavement, crying his eyes out. The priest asked the boy what was wrong.

‘I sold my dog to a fellow for a bottle of lemonade,’ cried the boy

‘That is terrible,’ said the priest, ‘And now that it’s gone you wish you had it back.’

‘That’s right,’ said the boy, still sniffling.

‘You’re sorry you sold it because you realize too late that you love it.’

‘No, no,’ said the boy. ‘I wish I had it back because I’m thirsty again.’

My taste in comedy runs almost exclusively to sarcasm and wordplay, along with musical parody. And I don’t think this is particularly unusual – I suspect it’s something to do with that type of comedy appealing to a more analytical mindset.

I think it’s also because I understand the concept behind this type of comedy. It’s saying something but meaning something else entirely. So I know I’m supposed to read between the lines, and the humour comes from the dual meaning or misunderstanding. Saying something that could be horrendously offensive, if anyone actually thought that the speaker meant what they were saying.

It’s also the type of humour that I use fairly often to deflect tension and cover up for my own weaknesses. Although there is more than an element of truth in the jokes I make about myself – but as long as no-one finds out, then that’s all right.

Just don’t ask me to tell a ‘proper’ joke.

But here’s an example of the sort of thing I find funny (the video is appalling from a sensory perspective, however – I have to just listen):

OK, that’s not the best example, but most of the things I find amusing are somewhat more crude / sweary.

Happy to share links if anyone’s interested. Just maybe not here…