Last day at the festival

I’m writing this before I head back up to the festival site for the last time.

It’s been an interesting few days. I’ve enjoyed myself, but I am not sure I will come here again. I don’t know whether the festival has changed, or I’ve changed, but something has been different this year. I feel more out of place. And it’s not a comfortable feeling.

Music has been part of my life for as long as I can remember. But it’s started to take more of a back seat. I don’t play regularly with a group any more, although I still enjoy playing my different instruments. It’s something that will always be part of me, but it is no longer a defining part of who I am. I haven’t even acquired a new instrument this time around (although that’s mainly because I really wanted a melodeon, but they’re too expensive for an impulse buy). And I think that’s part of what feels different about the festival. I came here because I like the music. For most of the other people, it seems to be more part of their culture than it is mine.

The social norms seem to have changed as well. Small children are allowed to run around screaming and obstructing the stage crew, unchecked by their parents. Queueing seems to be an alien concept. No-one moves to let you walk past them, even if you ask. And there is a lot more tie-dye clothing this year than previously. It all makes for quite an uncomfortable experience; I can’t easily adapt to different social norms, particularly when I wasn’t expecting them to be different.

The sensory aspects have also been difficult. The acoustic sets are fine, but anything with a microphone is extremely loud. I’ve ended up listening to most of the sets with noise-cancelling headphones in. They work, in that I can hear what’s going on without getting overwhelmed, but a lot of the acoustic detail is lost and I feel disconnected from the live performance. (They don’t do enough to block out the Morris dancers, but that would probably take strong drink and illegal drugs – which, thinking about it, is possibly what causes the dancing in the first place…)

I’ll have to think carefully about whether I want to come here again next year. It might be time for a change – and that, of course, brings its own challenges!

Everyday challenges: this is my reality

This is the third year running that I’ve been to the same music festival. The first time was very shortly before I received my diagnosis, so the two events are quite closely related in my mind.

And over that time a lot has changed. But a lot hasn’t. And although I’ve developed a lot of strategies for getting through everyday challenges, the challenges don’t go away. Until the world in general becomes more understanding, life will remain difficult every time I step outside my comfort zone.

Every time I want to do something different, I have to weigh up whether it’s worth the challenge. Some challenges are insurmountable: however much I may want to do something, if it involves a lengthy and unstructured phone conversation with a stranger, it isn’t happening. Sometimes I’m only able to do part of the whole: again, however much I may wish it otherwise, I’m not able to spend extended periods of time in a noisy and cramped environment. I’m very lucky that most of the time I’m with people who understand this and don’t push me to do the impossible.

One of the most challenging things has been accepting my own limitations. Learning not to push myself too far for things that don’t really matter, or that I don’t really want to do. Learning to appreciate the things that I manage to do, rather than dwelling on the things that I think I should be able to do. I’m not completely there yet, but I’m getting there.

This weekend, I am pushing myself. Because I love this festival, and want to do as much as possible. But there are already challenges, because there always are.

One of the main challenges yesterday was travelling to the festival. I have difficulties on public transport: it is overwhelming from a sensory perspective and I can’t cope if anything goes wrong. I try and mitigate this as much as possible – I have noise cancelling headphones, and a relaxing music playlist. I try and travel at quieter times. I use my “please give me a seat” badge. I check the timetables obsessively so I have several alternatives if things go wrong.

Despite this, travel never seems to go smoothly. I had to travel across London, and my ticket wouldn’t operate the gates. The Underground was packed and I couldn’t physically get to a member of staff to manually open the gates for a while. By the time I managed, I was very visibly stimming, which is invariably misinterpreted. Then I had two people trying to persuade me to stand in the noise and the crowd to calm down before going to the platform. I didn’t have the words to say that I was only going to get worse if I was forced to stay in that environment – that if I was there too much longer I was going to go into full-blown sensory overload. Eventually they gave up trying to persuade me and let me through. But I was so overwhelmed then, that when I got to the next station I misread the departure boards and got on the wrong train (one to Warwick Parkway rather than Warwick). Luckily I’ve done that journey often enough to know where I could change trains – but it reinforced to me why I don’t travel alone on public transport if I don’t know where I’m going.

I’m staying in a hotel rather than camping, mainly so I can have a quiet space away from the festival – another adjustment, but one I’m not unhappy about! But even that has some challenges – I’ve always been able to sit in the same place for breakfast, but today someone got there before me. I genuinely didn’t know what to do, I felt I had to ask for permission to sit on a 4-seater rather than a 2-seater table but there was no-one to ask (there weren’t any 2-seaters that would have worked, as I need to be sitting against something and / or where no-one can walk behind me). Eventually that got sorted, but then a loud group came in…

It’s things like that that most people don’t even need to think about. And although I find most people willing to adapt for my needs, I still feel sometimes that some people think I’m just being fussy and that it must be possible for me to compromise. Sometimes it would be – but there’s a knock-on effect for some time.

For instance, yesterday I wanted to go to the evening concert. I really wanted to go. But I was so overwhelmed by the journey that what I actually ended up doing was resting in a darkened room from 6pm. I couldn’t process anything. I couldn’t even manage to go online.

And I’ve had people who should know better complaining that I’m not making eye contact. Yes, I can make eye contact if I really have to (or I’m comfortable enough with the person that I don’t have to think about whether I’m making enough contact / too much contact). But not if I need to listen to anything – I can’t process both inputs at once.

This is also the reason why I choose not to mask most of the time. It takes so much energy and concentration that I don’t have much left for more important things. I still have to mask sometimes, of course – mainly when I need to interact with people I don’t know. But an hour of masking can write off the rest of the day. So I try not to mask unless I really have to.

The everyday challenges aren’t going to go away any time soon. But I’m increasingly managing to live a life that isn’t just about coping with challenges – a life that can include things that I find enjoyable, not just full of things I have to deal with because that’s what is expected from me.

There’s still more to do. I’ve ended up where I am almost by accident, and if I’d known a few years back what I know now my life might have been very different. (It’s like the old joke: to get to there you wouldn’t start from here.) But more things seem possible than they did even a year ago. I just hope that continues.

Everyday challenges: other people (part 2)

It hasn’t been a good evening.

I am always exhausted after a day at work. All I want to do is get home and relax. I am normally so overwhelmed that even the thought of having to engage with someone I don’t know can tip me over the edge into near-meltdown.

And normally that’s fine.

But today, someone was parked in my parking space (the space actually belongs to me, it’s not just one I like to use). And I didn’t know what to do. There were no visitor spaces available, and nowhere else to park. I had no script. Luckily, one of my neighbours was coming in and I checked that they were OK with me blocking them in, but I still couldn’t cope with the situation. I couldn’t cope with not knowing when I might have to go and move my car, with not knowing when the entry phone was going to ring.

I was shaking when I got up to the flat after leaving my car. I knew a full-blown meltdown was on the way, and had to do something. So I scribbled a note, went back downstairs to leave the note on the car but couldn’t go back up to the flat. I ended up screaming in the car park to try and get someone’s attention. That worked, but the person who had parked there wasn’t happy. He kept trying to justify himself, but I couldn’t engage with him in a positive way. (And, unfortunately, when I am that close to a full-blown meltdown, my language gets, um, interesting and I am not in control of what I am saying.) He kept talking, saying it was “only a parking space”. That was like a red rag to a bull.

I don’t really know what I could have done differently. I couldn’t cope with the fact someone was in my space. I couldn’t cope with the uncertainty of not knowing when I would get my space back.

But it was not a good time for me to have to talk to people. I couldn’t deal with conversation, especially with someone who had broken the rules. Under normal circumstances, I would have just retreated. Tonight, that wasn’t an option – I was blocking people and spaces in, so would have had to move my car at some point, and I know I would have just become increasingly wound up to the extent where I may not have physically been able to drive. So I needed to get the car moved, but to do that I had to have a conversation I was not really in a position to have.

And, yes, a full meltdown happened afterwards, when I was back in my flat.

I am so angry that other people’s actions can have this much impact on me. I don’t understand why people can’t just stick to the rules. I don’t know why the man today had to take over my space, and I don’t know what to do if it happens again. (I can’t even find a new script with an alternative temporary parking space if mine is taken, because there is literally nowhere else to park when the visitor spaces are full.) I don’t understand why people have so little consideration for others; why they assume that what they want should have priority.

After the meltdown, I tried to reach out to someone I thought could help, but I think I got it wrong and now I’m scared that they’re angry with me.

I wish people came with an instruction manual…

Autism and comedy: target of ridicule or fair game?

I had a free day yesterday, so decided to go into London and try to see The Book of Mormon.

It was an interesting day, and an interesting experience. I’d seen the show a few years ago, and thought that I’d go and try for the ticket lottery (£20 for front row tickets!). Of course, I had a plan B if I didn’t get tickets through the lottery… one thing I have come to terms with is my need to plan for uncertainty; to contain as much uncertainty as possible within defined boundaries. So I knew that I was definitely going to see something at the theatre, I just didn’t know what.

But the lottery worked out, as I suspected it might on an off-peak Wednesday afternoon.

The show was great, I really enjoyed it – although if you’re religious or offended by swearing, you should probably go and see something else. But the experience was not without its challenges (including the heat – the Trafalgar Square fountains looked very inviting…)

Even getting the tickets threw up a challenge when the box office asked for my phone number. I don’t use the phone, never answer it if I’m not expecting a call, and don’t like giving out my number when I don’t know how it’s going to be used. I was trying to explain that, but they insisted on having a phone number before they would sell me a ticket “for security purposes”. Which is… fine, I guess, I don’t have issues with security, but it made me anxious that someone was going to call me; that I was going to have to deal with something that I’m not competent to deal with. Not sure what they’d have done if I didn’t have a phone number – probably not sold me the tickets (I wonder how that fits with the theatre’s accessibility policy?).

And the show itself affected me in ways I didn’t expect.

The last time I saw it was shortly after it opened in London, so well before my diagnosis. I hadn’t realised how difficult I would find watching some of the early numbers.

Because here’s the thing. There are standard comedy tropes that overlap uncomfortably with common characteristics of people on the autism spectrum. The outsider; the socially incompetent ‘weirdo’; the individual obsessed with minutiae.

The issue seems to be where “geeky” and “autistic” traits overlap – and of course not all people with geeky interests are autistic, and not all autistic people have geeky interests. But – as per the Venn diagram below – much of the comedy material seems to be in this area of overlap, where behaviours could be explained as either a manifestation of geekiness or an indication of autism.

venn diagram

And this was the case for the start of the musical as well. The butt of the jokes was a socially-awkward man who didn’t fit in with other people, didn’t understand social conventions, seemed obsessed with rules and had an intense interest in science fiction. Which all felt uncomfortably familiar (my special interest isn’t science fiction, but I know that particular obsession is not uncommon in our community).

I am sure that the intention of comedy is not (generally) to mock people with autism. But still… autistic traits are made fun of by non-autistic people in ways that would be completely unacceptable in relation to other disabilities.

So that was all a bit uncomfortable at first (and, yes, I do see the irony in being slightly offended at a show that sets out to offend in a completely different way).

But then one song made me cry. It’s not about autism at all, but seems to articulate the expectations placed on people with autism by the neurotypical world. Or perhaps that’s just what I’m getting from it at the moment: I am stressed and tired and was hoping that this was going to be more of an escape from reality than it actually was.

Maybe my ‘helpful’ obsession (i.e. not murder mysteries) isn’t so helpful after all…

Everyday challenges: other people

Every year I tell myself that I will use my annual leave from work at regular intervals throughout the year. Unless I’ve booked a ‘big’ holiday, every year I get to about May and realise I actually haven’t booked much / any time off. So I’m taking a week’s leave at the moment.

I hadn’t realised when I booked it that this was going to be quite this hot. I don’t handle the heat (or cold) well, and there aren’t that many places with air conditioning or proper shade. I’ve been to many countries that are far hotter than the UK and been absolutely fine – but the infrastructure is set up for heat, which it isn’t here.

In the heat, my tolerance for things that I find difficult, overwhelming or stressful is greatly reduced. Which isn’t great when I’m trying to have an enjoyable day out.

I never quite know how to describe how I interact with other people. Over the years, I’ve developed a good sense of what the appropriate social rules are in different situations. When I am able to follow those rules, interaction with other people is easy and – in most cases – enjoyable. I find new situations can be stressful, until I work out what the rules are, but that happens less frequently; my mental database in respect of appropriate social rules has become quite extensive.

But of course, I can’t control other people.

And when other people don’t abide by the appropriate social rules, I don’t know how to respond and I don’t know what to do.

That happened a bit today.

I was spending the day at Hever Castle, which is somewhere I’ve been meaning to go to for a while. I’d done my research: I know it tends to be busy weekends and school holidays, so I’d deliberately avoided those times, as I know I don’t cope well with crowds.

It almost worked. Except there were quite a few school trips there today. And one school, in particular, made the visit less enjoyable for me.

They were young children, 5 or 6 years old. I accept that young, excited children can get a bit noisy. That’s fine, and that’s one of the reasons why I always have headphones with me. But there was one child, when I was queuing to get it, that just kept screaming. The headphones didn’t block the screaming out, even with my music turned up as loudly as possible. That would have been bad enough – screaming is one of the noises I find difficult to tolerate from a sensory perspective – but the social rules also broke down. My expectation was that one of the adults would try and manage the situation more; to ask the child to stop screaming; to try and remove the child from the main group of people until they had calmed down. None of that happened. The adults seemed oblivious.

I almost couldn’t buy the ticket because I was so overwhelmed. And as soon as I got in, I had to find a quiet spot to desensitise – not exactly the start I wanted to the day.

That has all happened before – people have generally got louder and more oblivious to their auditory impact on others – and at least I have strategies to deal with that.

What happened later in the day was not so good.

I was waiting to go into the castle itself, and some children from the same school trip were in the courtyard. One of them picked up a piece of gravel / small stone and, looking directly at me, threw the stone at me, hitting my arm and causing a slight cut (luckily I carry plasters; I tend to faint at the sight of blood). I said to the accompanying adult that I didn’t appreciate a stone being thrown at me, and he just said that it was only a small stone(!). Again, no attempt was made to tell the child not to throw things, or to remove the child from the situation. And no apology was given for the child’s behaviour.

It was only a small cut – but I process these things differently, so it hurt! It also forced me into engaging with other people, when I didn’t really want to – and then instead of the expected apology, I was effectively told not to make a fuss. That’s not in my social rules database!

It was one school, and perhaps the teachers / helpers are particularly oblivious or entitled (I fully appreciate that children that age may not be fully in control of what they do – which is why I would have expected the adults to intervene, as they would have done when I was that age.). But this seems to be happening more and more often. So I don’t know whether I need to recalibrate my social rules (do I really just need to accept a strange person throwing something at me?), or whether I just need to avoid people, or whether I need to find an adults-only venue (and if anyone knows one, please let me know – everything around here seems to pride themselves on being family-friendly), or whether there’s another solution entirely.

I know that sometimes my own behaviour has an impact on others. I try to minimise that where possible, and I do what I can to manage my condition; to mitigate its impact on other people. I just wish other people would show me the same consideration.

How do you damp-proof a life?

I need to get back into the habit of writing again. I’m just not sure what to write.

I am struggling at the moment.

This year has been very difficult. Just under a year ago, my father was diagnosed with cancer. As soon as that happened, everything I’d been dealing with in my own life had to be put on hold. The analogy I’ve been using is that you don’t address the damp problem in your house when the roof blows off.

Although I’ve been shielded from much of it – there is a physical reason why I can’t be of much practical help during illness – watching him go through the treatment has been painful. My family all knowing that the odds of survival with the type of cancer he had are around 40% for the first year, but none of us actually saying that out loud. Articles in the media, blogs from people with the same type of cancer who didn’t make it, despite being decades younger. Horror stories of what his life would be like after cancer treatment, after an operation which is harder on the body than open heart surgery.

We never talked about any of that. We still don’t.

And at the time of writing, we have cause for hope. The operation – at Christmas – was a success. The chemotherapy has finished for good. There are no signs of the cancer. The doctors talk of him being ‘cured’, although I suspect it’s technically still ‘in remission’. His hair is starting to grow back, and although he’s still not up to full fitness, he’s getting there. My parents have even booked a holiday.

I don’t want anything I’m writing now to take away from that. And I am so grateful that he was able to have the treatment he needed; so grateful that he is still here for a while longer.

But – once the roof of the house has been fixed, you remember about the damp problem. And during the time you were getting the roof fixed, the damp has spread.

And I’m back where I was a year ago, only worse. Because what this year has also taught me is that I have very little support in my own life.

I can count on the fingers of one hand the number of people who have asked if I was OK; if I was coping (I wasn’t).

I haven’t had the energy to keep up with people I knew before I moved here, and none of them have bothered to contact me. That’s not unexpected, but it still hurts. It hurts to realise that, once again, I have misjudged the extent of a friendship. It hurts that some people I thought would care don’t; to understand that I am not as important to them as they are to me.

I don’t make friends easily. I don’t really know how. Even if I did, I’m at the wrong age; the wrong stage of life.

I am still alone most of the time. Still isolated.

I know myself better than I did two years ago. Some would say that’s a good thing. I’m not sure. When I was pretending – when I was adopting a different persona – I didn’t mind too much if people didn’t like the persona, as it wasn’t really me. I was happy not to be around people, as keeping the persona up was tiring.

Now I don’t have that mask, I am just myself, it’s much more difficult. I care more what people think. It cuts more deeply when I am rejected. I want and need to be around people. But I am more alone than I have ever been.

My father has a renewed chance at life. I am happy for him.

But I can’t help thinking that the burden he bore should have been mine. He has people who care about him; I do not. He has fought for his life; I have tried to take mine on several occasions.

In his position, my choice would have been very different.

You can’t have a house without a roof. But damp, left untreated, can also damage the house beyond economic repair.

So how, exactly, do you damp-proof a life? I wish I knew…

Trying to break the mould

I haven’t written for a while.

I haven’t really known what to write.

I’m not in a particularly good place at the moment. I feel as though I am fighting a war against an enemy I don’t even know.

It’s been almost exactly two years since the world I thought I knew came crashing down. Two years where I’ve had to re-learn almost everything about who I am and how I interact with the world around me.

Two years ago, I had barely heard of autism. And now, it seems to be all I ever hear about.

In the time before, when I was still managing to hide the cracks behind the thin covering of plaster that I used to try to mould to whatever I thought people wanted me to be, I had friends. I had a life – not necessarily a happy life, not necessarily an authentic life, but something that was there; something that was mine.

Getting a diagnosis has enabled me to glue the cracks together and create a more solid foundation. The cracks are still there and the glue isn’t that strong; a small amount of pressure can cause it to break again. But on the whole, the foundation is stronger than it was. I know more about who I am and what I need.

But the veneer, the covering, still seems to be moulded by someone or something else.

I no longer have the friends I had. That’s probably for a number of reasons, some circumstantial, some because I’ve changed or they have, or the threads of commonality that drew us together have been severed. They haven’t really been replaced. I haven’t been sure how.

Because it appears to me as though the only thing that people see about me now is my autism. It runs through everything I do. From the aids that I use to communicate when I can’t speak, to the behaviours that I can’t control when sensory overload becomes too much. I have strategies to try and mitigate most of that (I’m still working on how I actually manage to get through a supermarket unscathed).

I don’t mind people knowing that I’m autistic. I have no desire to hide that from anyone (I don’t think I have the capacity, any more, to hide it even if I wanted to). But that isn’t all I am. When I make the plaster mould to cover the cracks, autism will have a large place in shaping that – how could it be otherwise? But the other experiences that I’ve had throughout my life and the other aspects of my personality also need to be reflected in the final model.

At the moment, I feel as though I am being forced into adopting another persona that reflects what people want of me rather than what I want. I find myself constantly explaining; constantly justifying; constantly trying to break down stereotypes and assumptions. I am tired.

And it doesn’t feel great to know that most of the people I talk with are only there because it’s their job (I hope I’m not the part of the job that they dread, but I know sometimes I probably am). It doesn’t feel great to know that most of the connections that I think I’ve formed with others are probably less than genuine; formed out of necessity or convenience rather than mutual regard.

I wish more than anything that someone – anyone – would see me, rather than just my condition.

The people whose job it is to talk to me say that things can change. I’m not sure I believe that any more. I see my life as stretching out, day following day, like footprints on an unending desert. Always alone; any hope merely a mirage that vanishes as soon as I get close.

I often wonder what would happen if I could just stop.

I suspect that, like footprints in the sand, my mark in this world would soon disappear without a trace. Without anyone ever knowing that I was here.

I don’t know whether that thought scares or consoles me more.

April Fool

1 April has always been quite a challenging day for me.

Although most of the time I think I have quite a good – albeit dry – sense of humour, I don’t always realise when people are winding me up. So a morning devoted to the art of the wind-up isn’t ideal. I can cope with the obvious fake news stories, particularly as they have become increasingly implausible.

I normally deal with the day by trying to minimise my contact with people. I don’t want to be the butt of a joke I don’t understand. That’s happened too much in the past, and as a result I started to question and mistrust absolutely everyone. When someone says something that turns out to be false, even – or especially – as a joke, it makes me not want to trust or be around them any more.

Not an April Fool’s joke, but I still get embarrassed when I think of a practical joke that was played on me at my first job. For some reason, the team lead thought it would be a good idea to do a Valentine’s Day “secret Santa”. I didn’t know what was appropriate in the workplace, so asked a couple of people that I thought were friends. The guidance that they gave me was to buy a joke present from an “adult” shop, as that’s what everyone else would be doing. I wasn’t particularly comfortable with that, but didn’t have any reason to not trust them, so that’s what I did. Of course, they were winding me up. Everyone else just did the soft toy / chocolate thing. (Luckily the team lead realised what had happened, although I did get a bit of a telling-off for being gullible.)

To be fair, that kind of thing doesn’t happen much these days. Perhaps I’m around nicer people, or perhaps I’ve got better at identifying when someone is joking in that way.

But I think I’ll always be relieved when April 2nd comes around.

How not to deal with unexpected problems

I should be on the way to the airport right now.

I’m not.

Mix up with dates. Dates confuse me. Sure I selected the right date online but for some reason came through wrong – and neither I nor the person who checked the transfer docs earlier in the week noticed.

Had to try to make a phone call to sort it. But I couldn’t speak or explain on the phone. Had to end the call unresolved. (I don’t think that’s what people understand sometimes – it’s not just that I dislike speaking on the phone, I literally can’t sometimes).

Very, very close to a meltdown I managed to speak to the hotel receptionist and explain. Who was lovely and who has, I think, sorted it out.

I am still shaking. Can’t stop stimming and everyone is staring. Not helped by having to deal with sensory overload in the reception area. I will just be glad to get to the airport now.

I am not going anywhere again where I don’t either have transfers included or can get public transport.

Everyday challenges: holiday edition

It’s the little things that are so difficult about living with autism – particularly on holiday, which should be an enjoyable and / or relaxing experience.

Little things like going down for breakfast and the acoustics of the dining room being so bad that you are instantly overwhelmed.

Like trying to find your way through a group of people and not being able to read their body language, so having no idea about where they are going.

Like (still!) being extremely bothered by people smoking in the non-smoking area – not just because you’re hypersensitive to the smell, but because they are doing something against the posted rules, and you can’t reconcile that in your own head.

Like waiting for a tour rep to become free and other people waiting striking up a conversation. Second guessing how much to share with complete strangers.
Like underestimating how exhausting and unsettling a change to your regular routine is, and not being away for long enough to establish a new routine.

Despite all of those little things, I’m having a good time. Malta is absolutely gorgeous at this time of year. I’ve been here before and always thought it had a sort of bleak, arid beauty – I hadn’t realised how many flowers the island would have, nor how many different shades of yellow there are. I can spend hours sitting on the balcony just looking at the changing colours of the sea, from turquoise to grey to a deep sapphire blue.

And after a long British winter, it’s great to actually feel warm sun (a bit too warm, I’ve already managed to get slightly sunburnt).

I am, however, not sure I’d do this sort of holiday again. I needed time to relax, but this is too unstructured; too unplanned. There are too many people sharing one space, and limited places to which to escape when it all becomes too much.

I’m still glad to be here, though.

And today’s obligatory holiday photo follows…

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Rules are not made to be broken

I thought I had this whole travelling thing sorted out.

The arrangements that I made for the flight worked well to reduce stress – a brief period of anxiety when the priority boarding didn’t happen, but otherwise it’s probably the best experience I’ve had at an airport.

The transfer to the hotel also went smoothly, although I did have a bit of a sinking feeling when the driver seemed like he was going to be chatty.

And the hotel itself is nice. But – the other guests keep breaking the rules. And I don’t quite know how to deal with that.

Two examples. First, when I was waiting for my room to be ready I thought I’d sit in the sun with a drink. Found the clearly-signed non-smoking section – and there were people smoking. That’s been the case all afternoon. The hotel staff are trying to police it, to be fair, but they can’t be there constantly. It’s doubly hard for me to accept that behaviour because a) they are Breaking The Rules and b) cigarette smoke is one of the things to which I’m hypersensitive.

Second, the hotel information clearly states that the speciality restaurants must be booked at a certain location between 7.30 and 10am on the day you wish to use them. No. They are taking bookings in advance. At least I found that out before they were all fully booked for the time I’m here – but now I’m breaking the rules and I don’t like it.

I genuinely don’t know why people bother to have rules if they’re not going to be enforced. (And, no, I can’t just go with the flow. I like to know what the rules are.)

Still, I’m on holiday and the sun has been shining.

And here’s a photo I took from the plane. I think it’s of the Alps…

20170317_093207

Using a CRUTCH to help me through extreme anxiety

The desire to use somewhat convoluted acronyms in any conceivable situation is a bit of an occupational hazard.

But this one kind of works for me. Because when I’m extremely anxious, I need some support – and after all, that’s what a crutch is for.

The time to use this is when I can’t speak for myself; when I can’t process what people are saying; when my stims cross the line from helpful and self-soothing to something that could potentially hurt me.

So here is my own personal CRUTCH.

Calm – it’s important that you remain calm, and speak calmly and in a level tone to me. I am already in a heightened emotional state and my reactions may be unpredictable if I can sense any emotion from you.

Reassure – when this happens, I am not only anxious, I am scared as well. I’m normally quite self-controlled, so to completely lose control of my emotions in front of someone else is extremely frightening, even ignoring what has triggered the reaction. So it’s helpful to reassure me – even if I don’t understand what you are saying, I’ll pick up reassurance through your tone of voice and the cadence of your speech.

Unhurried – it will take me a significant amount of time to process what you are saying, if that’s even possible. If I don’t respond immediately, give me time and if necessary try again in a few minutes. This is not the time to put any pressure on me.

Touch – even if I can’t process aural or visual inputs, I find touch (a hand on my arm, back or shoulder) both reassuring and grounding. It gives me something external to focus on when my mind is spinning out of control. If I am not expecting it, I may flinch in the first instance – if that happens, it’s fine to try again.

Confidence – this is possibly the second most important component after remaining calm. Whatever you do or say to me, do or say it with confidence. Because if you have confidence, I can have confidence in you and know that there is someone who is there to help.

Harmless – a bit of a strange one, but it’s a good idea to try and make yourself appear as non-threatening as possible. Don’t force me to make eye contact or loom over me – try to be on the same level as me if you can. This is because I’m in ‘fight or flight’ mode. My instinct is for flight, but if I think I’m under attack my reactions can become unpredictable. I won’t hurt you, but it might provoke me into a full-blown meltdown – which is something to be avoided if at all possible.

Masking vs. self-editing

I’ve been thinking about masking and self-editing quite a bit recently. And I’ve come to realise that I’m not entirely sure where the line is between them.

Most people self-edit to a certain extent. Most people would probably answer the question “So what are you up to at the weekend?” differently depending on who is asking the question (and what they actually have planned!). For instance:

A: Not much, probably just a quiet one (to your boss)

B: Going out with a few friends (to an acquaintance)

C: Going to that new club and plan to get completely trollied. Fancy coming along? (to a close friend)

And that’s a good thing, and completely appropriate. (And absolutely not what I have planned – my actual plans for the weekend involve a therapy session and a visit from my parents!)

Not having an instinctive understanding of social situations, it’s often difficult for me to know exactly how much it’s appropriate to share. I still veer from not sharing anything to oversharing, but in most situations I remain within the ‘basically appropriate’ band.

It’s been something I’ve had to actively learn to do, but learning to self-edit is probably the one thing that has helped me most in terms of making social connections.

So if self-editing is normally a good thing, what about masking? Because while I may be happy to self-edit, I’m no longer comfortable masking in most situations.

I think the difference for me is that, with self-editing, I’m still being myself. I may not be sharing everything that’s going on in my head, and I may be a different version of myself in different settings, but I’m not saying anything false or pretending to be someone that I’m not. With masking, it’s more about adopting a slightly different persona; a different viewpoint to my real one. It almost feels like lying – and I’ve never learnt to be very good at that.

Of course, there’s a huge grey area where self-editing stops and masking starts. And I’m not a big fan of grey areas; I prefer things to be black and white, particularly when it comes to how I think and act.

I’m in one of these grey areas at the moment. I’m writing this from a coffee shop ahead of my therapy session. I’m having a difficult time at the moment, but am worried that if I am completely honest about how I’m feeling then that will potentially stop me doing some enjoyable things I have planned for next week. So I intend to go in, say I’m fine and get out of there as soon as possible.

Is that masking or self-editing? I’m not sure…

Finding my way home

As I’ve written about a few times before, I don’t think in words. I mainly think in pictures, although there is sometimes a multi-sensory aspect to my thoughts, where pictures, emotions and physical sensations combine.

But sometimes words are just words. I use them, and presumably use them in the correct context, but I don’t really understand what they mean.

‘Home’ is one of those words.

When other people used that word, I could tell that it had a hidden meaning. From their explanations, it seemed to be a place where they feel safe; a place to which they are emotionally attached; a place where memories have been made; a place that they could associate as ‘theirs’. For many people, ‘home’ seems to be where they grew up and where their parents may still live.

I never had that. Certainly growing up, the house where I lived couldn’t be described as somewhere I felt safe; I was tolerated there as long as I obeyed the unwritten and ever-changing rules, but I never felt I belonged. Going back as an adult is difficult for me – even from a sensory perspective it feels wrong: the house is full of conflicting patterns and every surface seems to be full of ornaments. And the conversation is just a wall of sound that I struggle to process. The quiet market town I grew up in is not how I remember it, either – there has been so much building work over the last few years that it is clogged with traffic and almost unrecognisable. I don’t miss it, and can’t see myself ever moving back. I would feel as though I am drowning.

So I don’t associate my childhood living arrangements with the concept of ‘home’, and the places I have lived in as an adult have always felt somewhat transient (even the flat where I lived for almost 10 years felt temporary).

But I think I am now beginning to understand the concept. My adopted town is perhaps not the prettiest, or the best located. But driving back on the motorway after visiting the place I lived in as a child, my heart lifted when I saw the same hills I can see from the window of my living room. My flat has a sense of space and calmness that I’ve never before managed to find and, in hindsight, was always what I was looking for. I have chosen almost everything in my flat, and I feel a personal connection with everything I can see or use (with the exception of a truly horrendous light fitting, which will be replaced shortly).

I would not want to leave here. If and when I do, I will be leaving something behind that can’t be replaced.

I still don’t know whether this is what other people mean when they say about ‘home’. I just know that, now the word has that meaning to me, I feel as though I am finally standing on firm ground.

An impulse control failure

An output from a psychometric quiz I took recently told me that I should act more impulsively.

That is… normally not a good thing for me to do. I have issues with impulse control and acting on impulse often leads to me putting myself at risk. That’s apparently something to be avoided.

My impulsive behaviour tends to manifest in a couple of different ways. There’s the engagement in activities that put me at risk. I’m also an impulse buyer, particularly of musical instruments and books (I have largely weaned myself off the latter since getting a Kindle). My first job was relatively close to a shopping area, so I used to come back to the office with bags full of books and – on one memorable occasion – a flute. (I hated the job, so I think shopping was a bit of an outlet.)

And sometimes, poor impulse control can lead to me signing up for things that I would never have done otherwise. I tend to think things through and it’s easy for me to find reasons not to do things – too expensive; too dangerous; what if something goes wrong? Poor impulse control counteracts that, so what happens is that I’ll sign up for something and then get a bit of a ‘what have I done?’ moment.

So today’s impulse control failure: booking a holiday for next February.

To Chile.

That’s one heck of an impulse purchase.

The truth is, though, if it wasn’t for impulse control failures like this one, I’d never have travelled as much as I have. I’m not sure I’ve ever booked a holiday that hasn’t been a bit of an impulse purchase. And I love travelling. My inner voice, that sees all the difficulties, would have been too strong. I would have been too scared; too indecisive. So in that respect maybe it’s a positive force. (If I could learn how to only use the positive side of impulsivity that might be helpful.)

Now I just need to sort out the travel insurance…

Autism: singular or plural

The more I interact with people who share my diagnosis, or who have experiences with people with autism, the more I realise how different we all are. We can all use the same word to describe ourselves, but I’m increasingly unconvinced that we’re actually describing the same condition.

In some ways it may be more helpful to think about autism as a plural; a group of conditions under the same umbrella but with each individual condition having its own experience.

Consider the UK and USA – as the quote goes, two countries divided by a common language.

If you asked a representative sample of Americans, they would probably be very clear that the British are different from them. The British accent is different; they use words to mean different things; the buildings are different; even the perceived culture is different.

Of course, if you asked Britons about themselves you’re likely to get quite a different answer. There isn’t just one British accent, there are a vast number of them. Regional dialects, although not as diverse as previously, still exist (as an example, most of the people where I currently live, just 60 miles from where I grew up, would not know what I mean by a ‘cheeselog’*). The architecture of London is very different from that of Aberdeen, and the buildings in Milton Keynes bear few similarities to those in Stratford-upon-Avon. And there isn’t a single culture either: the experience of a university-educated person working for a political lobby group in Westminster may be very different from that of an ex-miner from Merthyr Tydfil.

It’s the same with autism. Living with autism, you realise that your ‘accent’ is different from others that you meet; that your cultural framework is also different; that you are made up of different building blocks and so your fundamental architecture and how you present yourself is also different. But for the neurotypical, metaphorically looking across the Atlantic, it’s hard to differentiate.

(This cuts the other way of course, although I think the differences between the American states are more publicised in the UK media than the differences in the British counties – or even countries – are publicised in the US. A bit like all the exercises designed to reflect the diversity of the non-autistic personality and experiences, but putting ‘autism’ into a single psychological box.)

And to take the analogy one step further: if you think about it, you might realise that a political lobbyist from Washington DC might have more in common with their counterpart in London than their nationality might suggest. They might even be able to find more common ground with that hypothetical alien than someone who holds the same passport but opposing views.

But if your view is based on a perception, and the perception is primarily one of difference; of an singular ‘otherness’ that does not reflect the reality of a spectrum condition; then it is difficult to move beyond the stereotypes and find common ground. After all, the dominant voice is not ours (even, sometimes, in our own community). It’s tempting to stay within one’s own ‘borders’; to find false similarities; to think that our experiences are universal and understood by our own compatriots, and that we understand theirs in return.

That may be true. But I suspect that I can more easily understand the experiences of someone without autism but who shares my background and interests than someone on a completely different part of the autism spectrum.

So maybe it’s time to start talking about autisms, not autism.

A spectrum, not a fixed point.

And although we may still be a different ‘nationality’ from the non-autistic world, I think it’s important for both sides to remember that we still have a common language – being human.

 

 

 

*In case anyone was wondering, a cheeselog is a woodlouse. And, no, I have no idea why.

A personality quiz for people on the autism spectrum

I have done numerous personality quizzes over the years for both work and pleasure.

They’re never accurate for me. Of course they aren’t; they’re calibrated for the neurotypical. So what tends to happen, particularly with the more business-oriented ones, is that the questionnaires pick up on the analytical nature of the autistic brain and the overlap between the questions to assess introversion and autism. And therefore the category I am placed in tends to reflect the condition I have rather than the person I am.

The most amusing time was when I had to complete a psychometric questionnaire as part of a job interview. I answered the questions completely honestly, only to be told that I presented so differently in person that they couldn’t use the output of the questionnaire to assess my suitability for the role.
But if the ‘standard’ questionnaires don’t work for people with autism, what’s the alternative? Unfortunately, there doesn’t seem to be one. So I’ve come up with my own.

My version identifies five separate personality types. It doesn’t look at introversion or extroversion, as I don’t think that’s a particularly helpful classification for people on the autism spectrum as we may have sensory or social issues that skew our responses to questions measuring that trait.

So my suggested model is:

personality-diagramGeek
This personality type is one of the autism ‘stereotypes’ and is characterised by having one or two intense special interests, often in the areas of science fiction or transport. More introverted Geeks may choose to pursue their hobbies alone, or interact with others through social media / online forums. More extroverted Geeks may actively seek out like-minded individuals to attend groups and events based around their specialist interest.

At work, Geeks may thrive in an environment where there is routine, structure and / or a clearly defined set of tasks to complete. Ideally, their employment will have a connection to their special interest, allowing their encyclopaedic knowledge of the area to be appreciated.

Careers that Geeks might want to consider: librarian, administrator, IT support

Vulcan
This personality type is the other autism ‘stereotype’ and is characterised by their ability to think logically and apply that logic to real-life situations, although in their pursuit of a logical solution to a problem Vulcans may not always consider the human factor. Vulcans can be rigid in their thinking, but can be persuaded to change their mind if a logical counter-argument is presented to them. Vulcans may also be a good chess player or may have savant skills.

At work, more introverted Vulcans may prefer to be given a specific task which they are left alone to complete. More extroverted Vulcans may seek out positions of authority, although their managerial style may verge on the dictatorial at times.

Careers that Vulcans might want to consider: computer programmer, military officer, scientist, actuary

Socialite
The opposite of Geeks, who predominantly engage socially based on a shared special interest, Socialites are characterised by their more general interest in people and their desire to put groups together and see how it all works. Socialites are always happy to talk, although they may not always realise when they are talking too much or when others do not want to listen. Socialites may have sensory or other difficulties meaning that they need to control their social interactions quite closely, but this doesn’t mean that they want to be left alone.

At work, Socialites need to be around people. This is the one personality type for whom open plan offices can work extremely well if any sensory issues can be managed.

Careers that Socialites might want to consider: politician, public relations, project management, training

Artist
The opposite of Vulcans, Artists are characterised by their ability to think creatively. Artists are the most flexible thinkers of the personality types and are often kinaesthetic learners. Their ability to hyper-focus means that they are happy to spend hours on a creative project. More extroverted Artists may be drawn to areas where they can express their creativity in a social yet focussed way, such as amateur dramatics.

At work, Artists may be temperamental. They may interpret rules differently or find creative ways to comply with the letter rather than the spirit of the rules.

Careers that Artists might want to consider: graphic designer, journalist, marketing executive, architect

Hybrid
The Hybrid, although a distinct personality type, incorporates elements from all the other personality types. At their best, Hybrids are logical but creative thinkers who are capable of harnessing their own knowledge of a specialist area and communicating it to others. At their worst, Hybrids can be obsessive, unwilling to listen, histrionic and overbearing.

At work, Hybrids tend to have a good understanding of social rules but their somewhat chameleonic nature can mean that relationships with colleagues may be relatively superficial. Finding a balance between group and solo working is also likely to be important for Hybrids, as they may be extremely good at masking and therefore a stress reaction may appear to come from nowhere.

Careers that Hybrids might want to consider: law, medicine, teaching, economics

Obviously, I’m not an expert and the model hasn’t been tested. But, intuitively, it feels at least as accurate than many of the models I’ve had experience of in the past. (And just in case anyone was wondering, I identify as a Hybrid.)

If you want to find out where you might fit in on the model, a questionnaire is here. (Disclaimer: it’s just for fun, completely unscientific and could well be wrong…)

Thoughts from a garden

Just when I think things are starting to get better, something happens to make me feel as though life is impossible. Just when I think I know and accept who I am, something comes along to shake my confidence. To leave me wondering whether people actually see me, or just my condition.

The last few days have been hard. There have been a lot of tears, and not much joy.

I’ve tried to rebalance that a bit today. Although it’s not easy. I don’t want to be alone, yet here I am with no-one to reach out to. I try to do the best with what I have; to try and find comfort in any way that I can.

It hasn’t entirely worked. I am still desperately lonely.

But I have managed to find some small happiness today. And I’ve discovered that gardens are full of analogies.

It wasn’t the obvious day to go and visit a garden. It’s been raining off and on for most of the day. Only a few people were there, and those that were there weren’t staying for very long.

But even in those circumstances, there was a quiet beauty to be found in the winter garden.

Not showy, not what anyone would think of when they think of a pretty garden. Yet there it was, all the same.

Walking down a pathway flanked by evergreen trees, all the trees having their own particular shade of green, the grey light filtering through the branches, like walking through the cracks and flaws of an emerald.

The shape and colour and strength of one particular tree, leaf-less, nameless but still alive and strong.

The sight of trees bleeding into their reflection on the still lake.

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At first glance, you wouldn’t notice the beauty. But if you take the time to look closely, you start to see the different facets of the garden. Start to realise that there is more than you first thought. Even where there appears to be little life, little colour, there can still be something worth seeing.

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And that all seems to be a good analogy for living with autism. Most people just see the condition and move on. They don’t want to engage. Or they engage, but they want to change what they see; to plant different seeds; to shape the garden into a more conventional ideal.

Very few people look beyond the label. I don’t know why. Perhaps they are apathetic, fearful or something else entirely.

Everyone I have met with autism has more to offer than the condition we share. Every one of us has our own place in that garden, albeit obscured in better weather by the plants that people fawn over and photograph, that people come to see and leave remembering.

We are just there, unseen and largely unappreciated. But the garden would be a poorer place without us.

It’s just a shame that more people don’t realise that.

Finding calm in a chaotic world

I’ve been finding life quite difficult over the past few weeks. I am not good at working out when I need to rest. I think I’m fine, until I’m not.

And around me, the world still seems chaotic and I can’t make sense of what’s going on and why I’m feeling as unsettled as I am.

I’m trying to work through that. But until I do, I need to find some coping strategies that actually make life easier. The one that I’ve found that really works for me is to schedule time into my day to do nothing. (I say “do nothing”. I mean time to just sit in my sensory room and decompress.)

Scheduling in general seems to make my life easier, as long as I don’t try to do too much. I need to have a plan (preferably several), otherwise my life feels out of control and I can’t concentrate on anything. In the past, I’ve over-scheduled things and then I feel under immense pressure when I can’t keep to that schedule. So I need to keep a certain degree of flexibility in my days, just to take that pressure away from me.

It doesn’t always work the way I want it to. Sometimes external factors, or other people’s influence, mean that I can’t keep to the plan. Sometimes that’s OK; sometimes I can re-plan. More often, I pretend it’s OK when it isn’t (I probably need to stop doing that, as well), and then deal with the fallout when I’m alone. And I still tend to plan too much in one day. I don’t know whether that particular habit is one I’ll manage to break.

Today, I got the balance just about right. And it was the best day I’ve had in a long time.

I’m trying to appreciate simple pleasures more. I don’t need to be constantly rushing on to the next thing; the next experience. That risks overwhelming my mind’s executive function. Learning some mindfulness techniques has helped me a lot with this (although I don’t subscribe to some of the weirder manifestations of that particular bandwagon and I definitely don’t want to learn to dance with my own divinity…)

So today, I took the day off work. I planned to go for lunch and have a walk. Then back home, to do nothing for a while.

The lunch was indifferent. The walk was amazing. Going to a garden in January isn’t where you’d expect to find beauty. But even in winter, there was a carpet of flowers near the entrance. There was colour, and scent, and the sound of the fallen leaves crackling under my boots. At times, I could have been the only person in the garden. It was wonderful.

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Then home again, just in time to see another sunset from my window.

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Time in my sensory room followed; the coloured lights becoming brighter as the room darkened. Watching the glitter tumble down while drinking the last of my favourite coffee.

I had almost forgotten how happiness feels. It’s good to know that it’s still there, somewhere, amongst the stress and chaos of everyday life.

And it’s good to know that not everything has to be about coping. That’s been the focus for a while. But finding pleasure and enjoyment is probably more important. I think I’d forgotten that, as well.

I’ll probably crash down again tomorrow. But as long as I have some days like today, I might just be able to do this whole ‘life’ thing after all.

A Catch-22 situation

One of the things that is still difficult for me to come to terms with is how much I need to pace myself. I think I can cope with things; that I should be able to cope with things. The truth is that I can’t do everything I’m trying to do, particularly when I’m putting myself into situations that are overwhelming from a sensory perspective.

This weekend was a good example. Normally I don’t plan to do anything after my therapy session; driving home is about my limit and then 90% of the time I’m so exhausted by the session that it wipes out the rest of the day.

But I thought it would be safe to plan something enjoyable. Like going to the theatre.

It didn’t quite work out as I’d hoped. I hadn’t been to the venue before; it was crowded and I didn’t know where I was going. The volume was turned up too high and the acoustics were not great. I thought I was going to have to leave. Stubbornness kept me there, but it was a test of endurance rather than a pleasant afternoon.

I’m finding this happening more and more. Things that I used to enjoy – and still do, in many ways – have become overwhelming. I don’t know whether the world has just become louder, or whether I’m noticing it more now I’m not concentrating on putting on my own act.

I find myself increasingly reluctant to leave my home, where I am safe, where there is nothing to overwhelm me. I now have a proper sensory area set up, as well as different lighting options in most of the rooms. This makes me feel more secure, and I am glad there is somewhere that I can be safe and calm.

But at the same time I worry that I am retreating from the world too much. That I am becoming increasingly stressed when I am not at home; increasingly unable to cope with the pressures of daily life outside my front door.

If I can’t cope with the pressures, I won’t be able to keep the sanctuary I have created.

I feel stretched beyond breaking point. But I am safe here. I am warm and quiet. The patterns of the light are almost hypnotic.

I need this place away from the world if I am to have any chance of coping with real life. But the more comfortable I become here, the harder it is to leave this room.

Not for the first time, I envy people who are strong or brave. I am neither. I carry on simply because I don’t have a choice.

But tonight I am sitting here watching the lights dance. Listening to the music in my head that I can’t quite work out how to notate, but that both lifts me up and makes me cry. And that is going to have to be enough to get me through for now.

.

Anxiety – again

Today has been the worst day for a while in terms of trying (and failing) to manage anxiety.

The Christmas period was not easy, for very many reasons, some connected to my autism and some not. I thought it was going to be a good thing to get back into some kind of routine.

And it should have been, and would have been, except that things keep happening that are beyond my control.

And despite all the strategies I have developed over the past 18 months, today I couldn’t control it.

I should have picked up the signs at the pharmacist. I needed to go and pick up a prescription, and what should have been a 5 minute wait turned into a 30 minute wait. I could have coped with the sensory inputs for 5 minutes; I couldn’t for 30. I started to panic. I also couldn’t deal with someone who came in after me being served first. It didn’t seem fair, and I didn’t know what to do.

So then strangers were trying to calm me down; trying to give me options that I knew wouldn’t work, but I couldn’t explain to them why.

But I got out of there just about in one piece, without going into total meltdown.

Almost a success, really.

But then something more disruptive happened. And I just fell apart at work. Managed to get to a quiet meeting room before the real meltdown hit. At least it was a quiet one this time; just sobbing and stimming constantly for about 45 minutes.

Still exhausting. Still unnecessary. And that’s the most frustrating part.

I have strategies that work most of the time, but that doesn’t mean that people can keep pushing me. My limits are closer to the surface than the limits of most people without autism.

And I am left wondering: is it me? Am I hoping for or expecting too much?

The most dangerous time for me is 1 – 2 hours after a meltdown. The immediate emotion is spent, but if the cause isn’t addressed then the longer-term anxiety is still there. Anxiety and exhaustion are not a good combination. The anxiety provokes the impulse to do something to just make the hurt and confusion stop. Impulse control is difficult and energy-sapping for me at the best of times; exhaustion makes it practically impossible.

And this is where there is an increasingly unhelpful interaction with one of my obsessions. I’ve written about this before, but I love murder-mysteries. And there have been a lot of opportunities to indulge this interest over the Christmas period. So… methods of causing harm come quite easily to my mind.

That’s what happened today. Anxiety told me to make the confusion stop. My obsession provided the means. Exhaustion wouldn’t let me resist the impulse.

I have at least made my flat safe enough that it’s not easy to find foolproof ways to end a life. I may have ended up bruised, but the harm could have been a lot worse.

But if this keeps happening, the law of averages probably means that one day I will succeed, even if I don’t really want to, even if all I want is an end to the anxiety and confusion that has taken over my life.

I am scared about how much the actions of other people can provoke anxiety. And I don’t know what – or how much – is appropriate to share. I can’t control other people, and nor do I want to, but I sometimes wish that they were more logical and predictable.

I am scared that my strategies weren’t enough today. I don’t have any other strategies to use. I’ve become frightened to reach out to people, expecting rejection.

But there is a bright side. I’ve been looking for strategies online and I came across a really useful factsheet on supporting people with autism to manage stress and anxiety. I don’t know how I haven’t seen this before, but I somehow want to forward this to everyone I know. Because then they may actually get what it’s like. Then, people might actually understand how to help.

I’m not holding out much hope of that.

Lonely and struggling

I have just realised that it’s been more than a week since I actually spoke to anyone other than family.

That’s not a good thing. When I’m around family, I have to put on an act. I can’t be myself. So you could argue that it’s actually been more than a week since I really spoke to anyone, as the lines I speak when I’m there are not my own. The part I have to play is one that I’ve been forced to play for too many years, and has now become almost impossible.

This year will also be the first year I’ve ever spent New Year’s Eve alone.

So I’m not feeling great at the moment.

And I’m increasingly realising that I can’t go on like this. The isolation I find myself in every time I’m not at work is destroying me. But I don’t know how to break it.

I have been rejected so much over the last few months. It’s made me scared to reach out to anyone because I don’t know if they’re being genuine when they say I can, or whether that’s something else that I will have misinterpreted. And people never contact me: I don’t think it’s anything personal, I just don’t think anyone ever thinks about me when I’m not right there.

The last straw was getting a text today from somebody I used to be close to. Only the text wasn’t for me. I don’t know who it was for, but it was making arrangements to meet up for someone’s birthday (I didn’t even get a text on mine, or any acknowledgement when I sent my new address – and buying somewhere to live was a pretty big deal in my life). When I let her know it was a wrong number and sent a friendly message back, the only response I got was ‘sorry’.

So I guess we’re not friends any more. I don’t know what I did wrong.

This has happened with so many people now that it must be something about me that I can’t keep friends.

I try to be nice. I’m (genuinely) interested in other people. But I just don’t seem to be able to make connections with many people.

So all I’m left with is a family that I don’t get on with, and with whom a short visit can leave me so utterly exhausted that it takes me 2 days to recover afterwards.

Or total isolation.

Or work.

I am struggling to find any pleasure or happiness in such a life.

I don’t know how to change that. I’ve looked at other things, tried other things, but nothing has really worked.

I don’t know what to do. I don’t know where to go from here.

I feel out of options, and out of hope.

Social expectations, Christmas and families.

As a woman with autism, I’ve become used to trying to work out and fit in with different social expectations.

I don’t always get it right. Most of the time, in fact, my reactions are slightly ‘off’ to anyone who pays close attention. But most people just see what they expect to see, so often I can ‘pass’ for someone who doesn’t have the same differences.

But there isn’t anything in my experience that tells me what to do when I am unable to comply with social expectations. When complying with the expectations means that I need to sacrifice myself.

And that’s where I am at the moment.

My father is going into hospital tomorrow for a major operation. He won’t be out before Christmas. Which means that I am expected to spend Christmas with my mother.

And I don’t want to.

We don’t get on; never really have done.

But the social expectation is that you spend Christmas with your family. The social expectation is that you respect your parents and do what they ask.

I can’t do what my mother asks of me much longer.

When I am with her, I am unable to manage my anxiety. I’ve developed some pretty effective strategies over the past couple of years – but I’m not allowed to use them. Doing anything that may make other people aware that I am anything other than completely neurotypical provokes an extreme and frightening reaction.

As I become more confident in myself – as I become increasingly aware of ways to meet my own needs – I move further away from my mother’s expectations.

I don’t know whether I am simply intransigent or whether her expectations are beyond what most people would expect of a fully autonomous adult.

I know that I am being selfish in my desire to be my own person. But I don’t have anyone else to prioritise my needs. I have never been a priority for anyone else; never been loved or accepted for who I actually am (instead of how well I can pretend to be someone else). I have received more kindness from complete strangers than I ever have from my own mother.

As a woman with autism, I’m used to being in the wrong when it comes to social expectations.

But, if the social expectations themselves are wrong, what chance do I have of getting anything right?

This is probably not the time to be thinking of major changes. The only way I am going to get through the next week or so is by putting on a mask; by being compliant; by agreeing to everything; by not rocking the boat.

I don’t know how successful I will be. I’ve spent the last couple of years trying to get away from the constraints and the stressors that trying to ‘act normal’ placed upon me.

But my mother is never going to accept me for who I really am. She is never going to accept how much autism affects me and changes how I need to deal with things. In her eyes, it is always going to be the dirty little secret that must be hidden from view.

I don’t have the strength for this fight at the moment. I don’t have a strong support network over Christmas and I can’t risk becoming suicidal again. And I can’t risk my mother taking her anger at my ‘disobedience’ out on my father while he is still so fragile.

The choice, yet again, seems to be made for me.

I am nowhere in this. My needs don’t seem to matter.

I don’t want to be selfish – more social conditioning; women need to be ‘nice’ and self-sacrificing. But the social conditioning is so difficult to break.

Now is not the time to think about this. But I don’t know when – or if – there will ever be a ‘right’ time. And I don’t know how much longer I can continue to hide behind the mask I have grown to hate.

Bah, humbug

Christmas has never been my favourite time of the year.

I’ve always found the forced socialisation and change to routine difficult (at least now I know why!). And the expectations always seem to be ridiculously high. I will never understand why people think that spending large periods of time cooped up indoors with other people that they rarely see at other times of the year and with whom they have nothing in common except “they’re family” will be a happy and peaceful time.

There’s one part of the family that I always find particularly overwhelming. They all talk at once, and even if I start talking to one person I am constantly interrupted by someone else. And that’s before we get to the segregation on gender lines (I’d much rather be talking to the men about how to use Excel than the women about babies…). I don’t cope well, and often end up “helping” in the kitchen just to get away.

I haven’t ‘come out’ as autistic to most of my family – my parents know, but that’s it. I don’t know how they’d react, and Christmas is probably not the time to test that. I suspect it wouldn’t actually help much, anyway, and I don’t really see them much at other times. It still feels as though I’m hiding something, though. But perhaps that’s the price to pay for keeping the peace.

This year, it’s going to be particularly difficult. My father has major surgery scheduled for 21 December, so will be in hospital over Christmas (we are having an early Christmas celebration next weekend, so he won’t miss out entirely). So most of the time it will just be me and my mother. Which will be… challenging.

I’m trying to come up with coping strategies, but I haven’t found that many. The real issue is that I’m not really allowed to retreat – my mother cannot understand that anyone might actually want or need time by themselves. And most of the strategies that I use to calm myself just lead to more pressure; I’m told to ‘grow up’; to ‘sit still’. I don’t use the phone, so can’t call a friend (and everyone’s with their own families anyway). I end up retreating to the bathroom much of the time, but that leads to its own line of questioning!

There are some things I like about Christmas. The excuse to have fairy lights and candles everywhere. The range of food, meaning that there’s normally at least something that works for my sensory requirements. The music.

On balance, though, I’d still prefer it not to happen.

At least it’s only once a year…

The joys of (self) publishing

I’ve been writing this blog for a while now. And it’s something that I want and intend to continue to do.

However, I also wanted to do something to draw a line under the last year or so – a year that has been one of the most challenging that I have ever known. So I decided to take some of my blog entries and turn them into a book.

I’m quite pleased with how it’s turned out. It’s probably the definition of a vanity project: it’s certainly never going to win any prizes for fantastic writing or telling a particularly interesting story. I’ve no idea whether it’s even particularly readable! But it’s great to have something that I can hold in my hand and think “I made this”.

And it’s helped me mentally move on from many of the events of the last year. And, just for that, the whole frustration with the self-publishing process has been worth it.

There were a number of reasons why I chose self-publishing. Firstly, because I actually wanted it to happen; I doubt whether there’s anything that would have interested a traditional publisher. Secondly, because I wanted to retain more control. Because the writing is so personal, having someone criticise and edit would, I think, have been too hard for me to deal with. I also wanted to be able to write under a pseudonym (I just changed my surname, it didn’t feel right to change my first name), as I don’t really want family or future employers to be able to easily find this!

There have been some frustrations. The ebook was fairly straightforward but it’s taken me several attempts to be happy with the print version. (One tip for anyone else doing this: convert the file into PDF format yourself as the issue for me is that I was formatting the Word document correctly but then when it was being turned into a print-ready file the formatting changed and the page breaks were in completely the wrong place).

But it’s done, and I’m happy with the outcome.

Now I just have to think about what to write next 🙂

And in case anyone’s interested, the ebook and physical book can be found here (http://www.lulu.com/spotlight/autismblogger). Also apparently on iBooks now and should be on Amazon soon.

I want a better scriptwriter

I can’t write the scripts I need today.

I’ve been struggling for a while. Trying to push things to the back of my mind. Succeeding for the most part.

It’s reached the stage where I can’t do that any longer. I can’t find the words that I need to get through the day. Can’t get back into the routines that I need in order to function.

And things just keep hitting me.

Today’s news: we have a date for my father’s cancer operation. This was expected to be early in January. But they have had a cancellation, so it’s been brought forward. To 21 December.

Which means he will be in hospital over Christmas. At least an hour’s drive from where he lives.

Which means that I will be expected to be on hand to provide both practical and emotional support to my mother.

And I can’t do it.

I can’t be the person I am expected to be.

Christmas is difficult anyway. Seeing people I do not feel comfortable with. The noise and excitement everywhere, when all I want is a quiet life. The lack of routine.

The only thing that makes it bearable is that sometimes I am able to get some time to myself.

But this year, I will be under even more pressure than normal.

And I have no support network. So for at least a week, I will be under pressure and having to hide, with no way of releasing that pressure and no time to desensitise. For at least a week I will not be able to speak to anyone who cares about me. I will be expected to act a part that I no longer want to play.

I can’t do it.

But unless someone can write me a different script, I have no choice.

A cautiously positive day

Yesterday was a bit of a challenging day. It’s still hard for me to be assertive about the things I need to successfully manage my condition.

The tactic I’m trying at the moment is to just let the panic happen. Because the more extreme reactions occur when I’ve been trying to suppress or hide what’s going on in my head. So the strategy is just to get to somewhere private and give in to the panic for a while, acknowledging that “this too shall pass”.

Once the immediate reaction is over, I find myself more able to think of a rational way forward. I suspect it’s because I don’t have to spend mental energy on masking how I feel; it’s out of my system and I can move on. That’s not to say it doesn’t come back – for a few hours afterwards I need to be quite careful as small things can trigger the reaction again – but I can at least get on with the rest of my day.

Today has been better. I’ve managed to do a couple of domestic tasks, which is more of an achievement than it sounds; it takes a stupid amount of energy for me to be able to do the simplest thing in that regard. I’ve had a productive day of work.

And I have taken the first tentative steps towards a slightly different life. That’s a post for another time; the seedling is still too fragile to share. But it makes me happy to know it’s there.

The other thing that’s contributing to my more positive mood is where I live now. I still have a few bags to unpack (maybe this weekend). But it’s an amazing space. Even though it technically overlooks a main road, it feels close to nature. I was working today and looking out of my window at the autumn colours and it just felt so peaceful (there are often incredible sunsets as well). I feel very lucky to be here. I just need to make sure I do enough to stay.

And here are some photos – the colours are brighter in real life; my phone camera isn’t brilliant (but – unlike my actual camera – is always charged and easily accessible!).

A line in the sand

I didn’t have a particularly good weekend. I’m having mobility issues at the moment (at least I’ve now got a hospital appointment scheduled) and was in quite a lot of pain. Which probably didn’t help my mood much.

I was supposed to be playing in a concert on Sunday. And I did play – but for the first time I can remember, I didn’t enjoy it.

Music is normally my escape. When everything is right, I can lose myself in the sound and physical sensations and forget about the stresses and strains of my everyday life.

I’d quite like to keep it that way.

But this time, I couldn’t.

I have some problems with my fine and gross motor skills anyway. Despite this, I’ve managed to get to a good standard on the cello. It’s taken a while for the muscle memory to come back but it’s pretty much there now.

What I’m not so good at, particularly when my hands are a bit stiff and painful through the joint issue, is turning the pages of the music. I have tried everything. The issue is that there is quite a narrow window for the pages to be turned. But sometimes, I still can’t be quick enough. And other times, the pages stick together without me noticing.

Which all seemed to really annoy the person sitting next to me. And his criticism was not constructive, it was just critical.

“This really isn’t good enough. We really can’t have this in the concert.”

No idea what else I was supposed to do. I’d been practising with my set of music, but we couldn’t use that one. I couldn’t magic up skills that I don’t have. But no solution was offered, only criticism.

So I spent the rest of the afternoon and evening increasingly anxious in case anything else went wrong with the page-turning. And, of course, it did – probably because I was anxious. I couldn’t concentrate on the music and enjoy playing; all I could think of was the practicalities of turning a sheet of paper over.

I don’t think I want to go back. I am embarrassed that I was told off and angry about being spoken to like that for something that I cannot help.

I’m rarely angry. So I think that anger shows me the line in the sand that I need to take.

I will not tolerate being spoken to like a child, particularly in situations where I am not doing anything deliberately wrong and where there is nothing that I can do to make things better.

I will not tolerate people falsely acting as though they have authority over me. I will do what is asked, to the best of my ability. If that is not good enough, I won’t continue.

For too long I have accepted whatever words people choose to throw at me. No more.

I thought that was what I needed to do in order to get people to like me; in order to be accepted. But people don’t like me. They don’t accept me. And taking hurtful words from them won’t change that.

Now to find somewhere else to play…

Between two worlds

I was not intending to write anything today. But my normal Saturday morning habit of reading the news online while waiting for my therapy appointment has thrown up a bit of a curveball.

My reading matter of choice tends to be The Guardian website (largely because it’s about the only newspaper that’s not yet gone behind a paywall – other than the Daily Mail, which I refuse to read). It’s normally quite good escapism from what’s about to come.

But today, it’s not quite so relaxing.

Today, on the front section, there’s a lot of paid for content about autism. It’s been sponsored by the National Autistic Society, so should be relatively accurate.

I’ve read it. And I don’t recognise myself in any of the content.

It’s good, in a way, that it tries to dispel at least some of the stereotypes around people with autism. At least it’s not perpetuating the myth of the autistic individual as some kind of technology / maths genius.

But I found the content depressing – because the narrative is still around ‘look at what these people can do even though they are autistic’. It is still making people with autism ‘other’. It is still making autism the defining feature about an individual.

Some people with autism may feel like that. I don’t. Autism is part of me, not the whole. And although it’s often challenging navigating through this world that is often not welcoming to people with the difficulties that autism creates, I still feel very much part of the world, not separate to it.

In some ways I am possibly different to many people with autism. I’ve always had an intense interest in people and want to understand how they work – not just to hide my own differences, but to learn about people in their own right.

Through my desire to understand others, I’ve learnt the social rules and conventions of the non-autistic world. I’ve learnt how to read other people, albeit in a different way to most people, and to take account of other people’s feelings and needs. And that world is still where I feel most comfortable.

One example: I find the written communication styles of many of those who work with people with autism to be uncomfortably blunt. One of the so-called ‘truisms’ of people with autism is that things need to be spelt out very clearly. And it’s true that I don’t like ambiguity. However, I’m used to the social niceties of the non-autistic world and I become anxious if I receive communications that don’t conform to those.

Campaigns like this one, which highlight differences, don’t make my life any easier. I don’t want to be seen as ‘other’. I don’t want people to make assumptions about what I can and can’t do because of my condition.

I feel increasingly caught between two worlds. I certainly don’t want to have to go back to hiding my differences – I am not even sure that is even possible. I no longer have any doubts about my diagnosis, or any fear that someone will turn around and say that there’s been a mistake. I am confident in my identity as a person with autism.

But I’m also myself, not just my condition.

I suspect that culturally I will always feel more comfortable in the non-autistic world. The social niceties and conventions of that world are also part of my identity.

However, if the focus is always on difference, I don’t know how long that will remain an option.

Stalemate

I have had a very challenging couple of weeks. And I am really struggling to think of anything positive tonight.

The process of buying my flat was all-consuming for a while. Stressful, absolutely. But everything was working towards a specific and finite event. I could understand why I felt as I did, and others could understand as well.

Now that’s sorted out (well, bar a few bags I still need to unpack). And I can’t understand why I feel worse than I have done in a long time.

The best way I can articulate it is that, when I was going through the flat-buying process, I wasn’t only sorting out a more secure place to live – I was also trying to get more hope in my life. I have the place to live, but the hope is completely gone. I’m increasingly realising that other things need to change, but nothing does. I don’t have the time or energy to do a lot of the things that make me value my life. Doing the things that others require of me takes up everything that I have.

I am surviving, rather than living.

And I can’t see that changing.

I have been trying so hard over the past few months to try and change things. It’s come to the point that I need to admit failure.

I don’t know what that means in practice.

Maybe it would be better to just accept that other people will dictate how I live my life. But I’ve spent my life fighting against that type of thing. I don’t think I’m capable of accepting that particular world view. At times over the last couple of years my stubbornness about this has been the only thing I’ve had to hold on to. I can’t give that up easily.

However, the current situation is untenable. I can’t continue like this.

Somehow, something needs to give.

It’s looking increasingly as though that something will be my sanity and wellbeing.

Once-a-year challenges: Halloween

Halloween was never a big event when I was growing up. So I’ve never really learnt the social rules around the festival.

I went trick-or-treating once, when I was 7 or 8, at my parents’ instigation. It was a complete failure. Limited to the houses of people that I knew, it shouldn’t have been too bad. Except the older brother of one of my friends answered the door, telling me “get on your bike, sister”. Which confused me entirely: I didn’t have a bike with me, and don’t have any siblings. That’s one of the two memories I have of the evening, the other being the memory of the fear I felt knocking on doors and not quite knowing the reaction I would get.

Now, Halloween seems to be everywhere. And I find that very difficult.

I find adults in costumes, particularly with ‘Scream’-type masks, very intimidating. I don’t know how to react to them. I normally try and stay inside, but I had to go to the hospital today and then to get a prescription. And there were so many costumes around. Even the supermarket cashiers were dressed in Halloween costumes and had their faces painted.

I spend the evening in fear of strangers knocking on my door and demanding sweets or money. I sit inside with the lights off, but I’m still scared of the repercussions if I don’t stick to whatever the ‘correct’ social protocol is. (There doesn’t seem to be a universally-accepted way here of communicating whether you do or don’t celebrate Halloween. And I’ve been targeted before.)

I don’t want to stop anyone else having fun. I just want to be left alone. I just want to not be frightened in my own home, which should be my safe place.

I wonder if there’s a Halloween version of Scrooge?

A bittersweet birthday

After last year, my hopes for my birthday this year weren’t particularly high.

Actually, it was a pretty nice day. Difficult in many ways – I find it hard to remember that my father is still so ill, when he seems so well in himself.

It helped that I’d organised a structured activity (http://www.bewilderbox.co.uk – I can thoroughly recommend it!), although there was still quite a lot of free time.

I managed to keep my mask on most of the time. I’m not sure whether that’s a good thing or not. But the one time it slipped, it was made clear to me that letting the mask slip wasn’t acceptable.

I have a lot of thinking to do over the next few months, and I think I need to make some difficult decisions.

I am increasingly confident in my own identity as a person with autism. I am increasingly able to engage with the world on those terms and ask for the accommodations that I need.

But it’s clear that that particular identity will never be accepted by my family. The expectation is that I will continue to wear the mask, or adopt the persona, that I crafted over so many years in order to survive and hide my differences.

I’m starting to question how long I can keep up this dual life.

My father still uses some of the strategies that I am increasingly rejecting. And I just keep thinking – I can’t hide who I am for another 34 years.

But for today – still my birthday! – I’m taking what good I can from the day.

I enjoyed the activity. I am happy that my father could participate to the extent he did; that he is still well enough to think (and eat cake).

I am sitting writing this entry in my own flat. That wasn’t even a remote possibility a year ago.

I still have cake, and coffee, and wine.

I am surrounded by items in my home that I have chosen and that I love.

I can be quiet and calm here. Being alone tonight isn’t ideal, but I can – at last – let my mask go for the day and just be who I am, where I am.

For today, that is enough.

I’ll have to wait and see about tomorrow.

A trip to the hospital

I love that the NHS exists. I think, most of the time, it does a great job. And it’s fantastic that I don’t have to worry about whether I can afford to get the treatment that I need.

I just wish that more of the staff had some kind of autism awareness training.

To be fair, today’s appointment was a vast improvement over the last time I had to attend a hospital. At least I got to go to a fully-built hospital this time. And at least my autism diagnosis had made it onto the referral letter and the consultant had noticed the diagnosis.

No-one had a clue how to deal with someone with autism, but at least they were aware.

It didn’t start off well. The hospital doesn’t have clear direction signs and I had to ask about four people where I could find the relevant department as I kept getting myself confused.

There weren’t many people in the waiting area, so noise wasn’t an issue. However, there were a lot of visual distractions (I noticed on the way out that there was a feedback notice thing saying that people had complained that the waiting area was too bland, so they put up pictures. I felt like completing a feedback form saying that there were too many pictures so can they please remove them.).

Then, I had to be examined. I’m usually absolutely fine with physical contact, as long as it’s a relatively firm touch. Unfortunately, the nurse was trying to be gentle and I kept flinching away. This was misconstrued as being in pain, and I couldn’t get anyone to understand that no, I wasn’t in pain, I just couldn’t stand that kind of touch – but if it was needed, they should just get on with it and ignore my reaction.

I also had to keep explaining that I was listening, even though I wasn’t making eye contact, and I wasn’t as anxious as my physical movements might make me seem.

I am sure everyone meant well, and they all seemed very nice people. Just… no clue about how to deal with someone with this condition.

It’s exhausting having to explain things all the time, almost wherever I go.

When actually, I’m nervous and scared when it comes to medical appointments and I just need to concentrate on getting myself through it. When I need someone there with me to support me, but there isn’t anyone so I have to do it by myself.

I hope that will change over time.

I am not looking forward to my next appointment.

A side-order of philosophy with lunch

It’s been a while since I used an analogy. But I thought of something as I was buying lunch a couple of days ago.

I have some pretty major issues around food, mainly because there are some textures and flavours that I can’t physically force myself to eat. Unfortunately, this lets out most of the standard sandwich options (mayonnaise or that kind of dressing is on my ‘do not touch’ list!).

To get around this, I normally bring in lunch. But I’d forgotten to pick up the correct bag (my morning routine has about reached its limit of tasks I can undertake) so I didn’t really have that much choice.

So as I was standing there, trying to find the best option of the two or three things that I could actually eat, it struck me that this was actually a pretty good metaphor for my life at the moment.

I can’t have what I really want. I’ve done the figures and it just doesn’t work.
There are some things that I cannot tolerate.

But in between those extremes, there are different choices that are – if not appetising, then at least palatable.

There are going to be compromises, some of which are forced upon me and some of which I actively choose, because of both who I am and the condition with which I live.

It’s a matter of selecting the best from the options available, not trying to get something that isn’t, at least at the moment, going to be possible. Because if I keep on trying to get to the ideal solution, then all I am doing is continuing to make myself unhappy by wanting something that’s out of reach, rather than trying to be content with what I have.

The problem is that I don’t know what the best option is. And, unlike lunch, you don’t get a second chance the next day.

Now the obligatory link to this song:

Illness

This is probably on my mind more than usual because I’ve been off work for the last two days.

I don’t know whether this is an autism ‘thing’, but I find it very difficult to tell when I’m actually ill. The high temperature and falling over when I tried to get out of bed was a bit of a clue this time. But until it gets to that stage, I genuinely don’t realise that there might be something physically wrong with me. Which means that I can’t rest or get things organised before it gets to that stage.

It’s similar with mental health, as well. I can’t tell that my thinking is starting to become disordered until I suddenly realise that I’ve become practically suicidal. That happened over the weekend, too, so it’s a double whammy of being mentally and physically unwell at the same time.

There also isn’t a clear delineation between the mental and physical for me. Sometimes I can feel ‘ill’ but I don’t know whether it’s anxiety or whether there is an underlying physical aspect. I suspect that it all links into how I perceive the world – for instance, emotions for me are a physical as well as a mental sensation.

It makes it quite difficult to know what the right thing to do is. I normally compromise with sleep, as that can work for both mental and physical ailments.

The practical side of illness is also challenging for me. With reduced resilience from either a mental or physical ailment, my capacity to think and plan also reduces. I can’t think of the steps I need to take to do quite simple tasks. And, unfortunately, there’s no-one I can call on to help me: it’s something else I need to cope with completely on my own.

This can lead to some rather unhelpful outcomes. Yesterday, with a raging temperature, I really needed to drink a lot of water and take some paracetamol to try and bring my temperature down. Logically I knew this. But I couldn’t organise myself enough to work out how to get the things I needed. So I had to just do without. I couldn’t even manage to get to the kitchen to take some medication I rely on to be able to function on a day-to-day basis. Today has been a better day, but I still haven’t been able to do everything that would help me feel better (I’ve managed water and medication, though).

It’s worse when other people are ill. Even though I can’t look after myself very well, at least I have some idea about how I feel and what would help me. With other people, I am clueless. I don’t have a script and I am not able to do anything practical to help.

Which makes it complicated with my father at the moment.

There seems to be this expectation, with cancer in particular, that families will rally around each other to help out.

That’s happening, to be fair. Just not with me.

I think my father understands why I can’t help; that it is just not within my capability. It’s not that I don’t care, or that I am not worried. I am just unable to provide the help he needs.

But I am aware that I am not sticking to the script. I am on the outside yet again. And when the dust settles, I don’t know what will be left of my family relationships. Probably not much.

I am glad my father has help and support through this difficult time. I am glad my mother can call on her extended family.

But it has made me think. If I was in that situation, I would have nobody. And that might be OK. If it was me going through the treatment, I might be able to cope alone.

It’s not me, though.

And I can’t cope with this alone.

But, as with the last couple of days and my own minor illness, I don’t have much of a choice.

Already a bad day

It’s another one of those days when everything just feels too hard.

I’ve at least managed to get myself into Brighton. Which was harder than it sounds. I had to go back to my flat 3 times as I kept forgetting important things (car keys, purse, phone). And I’ve just remembered I need to post a card to my parents today but forgot to bring it, so I don’t know whether I’ll now get it posted in time.

Driving was fine. That always relaxes me. It’s something to do with the combination of the movement of the car and being in my own space where nothing can get to me.

But I can’t drive all the time. I don’t think I could afford the petrol, for one thing.

So now I’m in a coffee shop waiting to do something I don’t have the energy for today.

The music playing is at least relaxing. Something classical. An instrumental version of a song from The Magic Flute.

I’m still finding the environment somewhat overwhelming. Even though I’ve found a dark corner and the music is not intrusive. Words are still not coming to me as easily as they sometimes do. I’m having to concentrate a lot to write this. And I’m very grateful for the spell-checking function, as my spelling has become appalling (although better than it would be if I was writing this by hand).

I need to get my flat sorted out this weekend. I don’t think living with so many boxes around is helping me much. And I need to get my musical instruments set up: they form an important part of how I unwind. I’d hoped to do some of that yesterday, but I didn’t have the capacity after everything else.

I’m extremely unsettled today. Can’t quite put my finger on why. It may just be that everything’s built up and I have no obvious outlet for the pent-up tension / stress / emotion (I don’t even know the right word to describe it – it’s the electric spider sensation again coupled with a visual of a kind of ball of energy). It may be that – now everything’s basically sorted in terms of living arrangements – I am now concentrating on the even harder emotional realities going on in my life.

I need things to get easier. I need to have a couple of weeks where nothing is stressful; where I can calm down and re-settle myself. I’m not going to get that in the foreseeable future, though. I don’t even seem to get a day without something else happening at the moment.

I’m not a strong person. And this is all more than I can bear. It’s so difficult to even keep on going. But I have to keep on going, even though it’s hard and even though I don’t always want to, because I don’t really have a choice.

And now I’m starting to feel absolutely frozen. I can almost feel a shutdown coming on. This isn’t the time or place for that. But my words are disappearing more quickly than I can type. And that may also be something that I can’t control.

A day of changes and multiple tasks

I don’t handle either change or long lists of things to do well, so today’s been quite a challenging day. I did manage to meet my single criterion for success (avoiding meltdown), though, so am trying not to be too hard on myself for not being able to do everything I’d planned to do.

It’s difficult. If I write down a list of what I’ve actually done today, most people wouldn’t find it hard. I still have the mindset that I should be able to do what everyone else can do – but some of the activities are so much harder for me that I just can’t. And I don’t really have anyone to help with the day-to-day minutiae of life. I just have to do what I can, and what I’m not able to do will just have to wait or not get done at all.

So my day of change started out by having a stranger in my flat (to measure up and give a quote for new bathroom flooring – not very exciting!). An invited stranger, but still… Someone I had to make small talk with. A function where I didn’t know the social rules.

It went OK, I think. Got through it. Got the information I needed.

Then I had to go and pick up something I’d ordered online. That wasn’t quite so straightforward. I originally went to the wrong place (not entirely my fault; I’d followed the signs for collecting by car but didn’t realise – and it wasn’t clear from the signs – that this service was only for groceries. So I had to go into a very busy and overstimulating shop and wait for ages for someone to actually turn up at the counter. Then the person serving became annoyed with me because I had to ask her to keep repeating herself – she spoke very quickly and quietly, and I couldn’t pick up what she was saying.

It was a real relief to get back to the car and spend a few minutes desensitising.

Then the more difficult part of the day. Handing back the keys to the place I’ve lived for the last 2.5 years. It’s good to have moved on, to now have a place of my own. But it’s still change. I had to go back to the old flat to do some meter readings and it was strange and a bit disturbing to walk through an empty place. I didn’t like it. And then the act of physically handing back the keys, explaining a couple of things to the letting agent.

I was already exhausted. But there were still things on my list. I had to visit a couple more places, to update my address and to pay for the flooring. Both of which were extremely difficult from a sensory perspective (I almost didn’t manage to get through the first transaction as I simply couldn’t focus on what the cashier was saying).

I’d intended to stay in town for a coffee and some people-watching. But I was so overwhelmed and overstimulated that I know I wouldn’t have been able to cope. So just went home and ended up sleeping for about five hours.

I’m sad that I always seem to be compromising on the things I find enjoyable. I manage (most of the time) to get through the things I have to do, but then don’t have anything left in me to do the things I want. I don’t quite know how to change that. I hope that soon there will be fewer things I have to do – moving always creates a lot of ‘must-dos’ – and I can do more of the stuff that makes up a life, not just an existence. Tonight, though, that’s looking a long way off.

Home at last

Well, I’ve moved.

The removal people came yesterday. It was an incredibly stressful day. I don’t like people in my space, unless I know them well, so to have three strangers there was never going to be a pleasant experience for me. And I didn’t know how to act around them.

It wasn’t helped by the fact that I’d asked a couple of people about what removal men might expect and was given answers along the lines of “don’t worry, it’s fine, they’ll just want to get on with the job.”.

Nope.

First thing they wanted was a cup of tea. I was completely unprepared for the request. I don’t use milk or sugar, so didn’t have anything like that handy. They basically told me to go to the shop and get some. I didn’t feel I could refuse – as I’d obviously done something wrong by not having the right tea-making equipment in the flat – so ended up having to walk about 20 minutes to get milk and sugar, with my joints playing up and dosed up on fairly strong painkillers.

I could have refused, I suppose. But I don’t know what the implications of that would have been.

The moving noise was also stressful. The crashing and banging of furniture. The anxiety that things wouldn’t survive the move in one piece.

Ended up basically curled in a ball on the floor once they’d cleared the bedroom, just because it was the only place that felt vaguely safe.

I am not moving again. At least, not as long as I don’t have anyone to help me on the day.

There’s probably no reason to move: I already love my new place. Although there are still a lot of boxes, as I wasn’t able to do that much unpacking yesterday. I had intended to do more, but I was so overwhelmed by the rest of the day (and in so much pain) that I couldn’t do much more than sort the bedroom out and then rest.

And it is such a relief to have somewhere of my own (well, the bank owns most of it at the moment, but still…). Somewhere that I can make a proper home. Somewhere where – provided I pay the mortgage – I can’t be asked to leave on someone else’s whim. I hadn’t realised how much stress renting a flat was placing on me. And I don’t have to obsess about pensions (in a non-work capacity!) any more: as long as I’ve paid off the mortgage by the time I retire I’ll be OK.

Even though I haven’t finished unpacking, it already feels like home. I don’t think I’ve ever had that before. It’s a nice feeling.

I’ve realised while writing this how much I’ve started to put down roots here. Which is also good thing, and something I haven’t had before. Now I just need some more people in my life to make sure the seedling grows up to be healthy. Although I don’t have a good track record with plants…

Tired and not coping

I haven’t sorted out as much as I should have done this weekend.

I don’t know whether I’m ill, or tired, or just overwhelmed by everything that’s going on. But I find myself able to do less and less before I need to rest.

I think one of the problems is that there is just so much to do. I’ve tried to break things down into smaller pieces, but then the sheer number of small tasks becomes overwhelming in its own right.

And I keep getting interrupted. A text message from someone to whom I would rather not speak. The noisy children being noisy – and they’ve now acquired pogo sticks; this is not an improvement.

It didn’t help that I took some (more) things to the charity shop this afternoon. I hadn’t even left the shop when one of the volunteers started laughing about people who bring things in. I don’t know whether I inadvertently violated some kind of social rule or whether they were just being unkind. It made me feel incredibly self-conscious. I thought I was past caring about that kind of thing; it appears that I’m not. Luckily there’s quite a lot of charity shops where I live, so I won’t have to go in that one any more.

Everything just seems unrelenting at the moment. Everything I try to do just seems to cause more stress.

I feel as though I am close to breaking.

But there is nothing I can do other than keep on going.

Something needs to change. I know that. But that’s too difficult to think about at the moment.

I just need to get through the next week or so.

I don’t know how to do that. I don’t know if I have the strength.

I have no choice.

More home-moving challenges

Today has not been a particularly good day.

I started out with a long list of things that I had to get done in town. I did the first two: get a bacon sandwich and pick up my prescription from the doctor’s surgery (the bacon sandwich was pure self-bribery to get me out of the flat).

Then it all started to unravel

I needed to be in the surgery longer than I had planned as there was a long queue. Unfortunately, the reception area was an absolute disaster from a sensory perspective: full of noise, smells and distracting visuals.

I’d intended to go back to the car for a short break before doing the rest of my list. But when I checked my phone (I’ve had to start doing that more since my father’s illness), I had a voicemail message from the estate agency.

I did not cope well. Tried to call back, but couldn’t speak to the person who called me.

Couldn’t complete my list. Had to just drive home. Managed to postpone the meltdown until I was indoors at least.

It was the worst meltdown I’ve had for a while.

And I still had to make that phone call, talk to the removal people and make another phone call.

That is… not a good thing for me to be doing after a meltdown. For very many reasons.

But I didn’t have a choice.

I am still overwhelmed and exhausted this evening. I don’t know whether I’m going to be capable of doing anything tomorrow. I tried to rest a bit this afternoon, but the screeching children outside made it impossible (I definitely won’t miss that when I move).

Today, yet again, I’ve pushed myself too far. I know that.

I had no other option.

I don’t want to do this all again tomorrow.

I may have to.

Not-quite-everyday challenges: Moving

I finally exchanged contracts on Friday, so that means that I’m definitely moving. On 4 October I will get the keys to my own flat (well, majority owned by the bank at the moment. But mine as long as I keep making the mortgage payments).

Which is a good thing.

I need my own space, where I am in control over who comes in and who doesn’t. Where I’m living currently is very nice, but it isn’t mine and I have always been aware that my tenure here could be terminated. (I’m dreading the inevitable viewings by prospective tenants. I don’t want them to happen, but can’t refuse. I’m trying not to think about that too much)

I’ll be able to have a proper sensory / chill out room. That’s something I’ve been wanting for a while and I’ve already started buying stuff for it.

I’ve been struggling all summer because there are a group of children almost constantly playing outside when they aren’t at school. And they play loudly. Near-continual screeching and / or skateboarding. I have found the noise very difficult to cope with. My new place will have some traffic noise, but I’m able to tolerate that.

So it’s definitely a good thing. It doesn’t particularly feel like it at the moment, though.

I don’t handle change well. And this is a huge change.

I have issues with organisation and sequencing. It’s all to do with how my executive function works (this blog explains it far better than I can).

And due to issues beyond my control, I’m having to sort all of this out myself. Which is not exactly what I had planned when I first started the process.

I hope that the strategies I have in place will be enough to get me through this.

I have to-do lists all over my current flat and more on my computer.

I am trying to pace myself. I am resting when I start to become overwhelmed. But that, in itself, makes it harder to plan. I’m used to pushing myself through; to being right up against a deadline; to expend tomorrow’s energy as well as today’s.

This time, I’m trying to do things differently. So far, it’s working. I haven’t sorted out as much as I wanted to. But I’m not exhausted; I will be able to do some more tomorrow. And I have managed to avoid meltdown. So I’m counting that as a victory, at least for today.

I just have to do it all again tomorrow…

The complexities and contradictions of an autistic extrovert

This is a sort-of-but-not-really continuation of this post.

Some people might think that an autistic extrovert is an oxymoron; a contradiction in and of itself; something that can’t possibly exist in the real world. After all, if one considers the etymology of the word ‘autistic’, it comes from the Greek autos, or ‘self’. And it can be a struggle to comprehend that others are different; that they have different viewpoints and different narratives, let alone to understand those viewpoints and narratives. This contrasts with the etymology of the word ‘extrovert’, which derives partly from the Latin word for ‘outside’.

So how can one person be both trapped within themselves yet draw energy from other people?

It’s a contradiction that I live with on a daily basis. And I suspect I’m not alone.

There has always been a dichotomy between how I present myself to strangers, and how I act around people I know well. I’ve had a variety of explanations for this over the years: shyness, lack of confidence, lowered inhibitions when drinking…! I always explained myself by saying that people think of me as quiet, but I’m actually a loudmouth when you get to know me.

All of which are probably accurate, to some extent.

In hindsight, though, what was happening was that I had subconsciously adopted the persona of an introvert. Adopting this persona meant that different social skills were expected of me; that I could hide my differences behind the mask. But I couldn’t sustain the act with people I knew well, or when my inhibitions were lowered through alcohol, stress, or exhaustion. In those situations, I reverted back to type.

My false conviction that I was an introvert was probably fed by the cod-psychology questionnaires that were popular throughout my teenage years and the early part of my adult life (including with some employers). It wasn’t until I started the autism assessment process that I realised that there was a significant overlap between some of the answers that indicated ‘autism’ and those that indicated ‘introversion’. But – for me at least – the reason behind the answers was different; driven more by the challenges of being around people than the need to be alone.

This conviction was reinforced by a lot of the reading I did immediately post-diagnosis. The stereotype of the autistic individual sitting in their own little bubble didn’t feel ‘right’ to me, but that seemed to be the prevailing wisdom about what it means to be autistic. I didn’t have the confidence or knowledge at that point to challenge that.

Then I started to realise a couple of things. Firstly, that I was much happier when I was around other people. I became afraid of being alone; scared of what monsters I might find in the darkness. Secondly, how much my sensory sensitivities impacted on my natural instinct to seek out large groups of people.

I started to think that I may not be an introvert after all. In fact, I became convinced the opposite was true. But how to reconcile the two words describing different needs: self and other?

I actually don’t think there’s a contradiction at all.

My understanding of ‘introversion’ and ‘extroversion’ is simply that these words describe someone’s energy source. An introvert needs time alone to recharge their internal batteries, whereas an extrovert gains energy from being around other people. It doesn’t dictate how someone relates to others, so it’s possible to be an autistic extrovert in the same way it’s possible to be a shy extrovert, or an outgoing introvert.

But, as with most things autism-related, it isn’t quite that simple.

At a high level, and as an extrovert, I need to be around people. If I’m not, my internal energy levels become depleted quite quickly. Isolation can have a significant detrimental impact on my mental health.

However, although being around people increases my energy level, at the same time it can – somewhat paradoxically – deplete my energy level. If I am in large groups, the sensory impact can become overwhelming very quickly. Even on a one-to-one basis, the effort needed to maintain a conversation and process information can drain energy.

Conversely, sometimes I find myself ‘overcharged’; either because the sensory inputs are too much or because I’ve just had too much social time. That’s when I need to retreat, to drain my battery a bit before carrying on with my daily life.

The analogy that comes to mind is listening to an MP3 player while trying to charge it using an ineffective charger. The electricity used can be greater than the amount taken in through the charging process. In that example, the battery may never recharge. So it’s a matter of finding the right balance where the battery is able to charge whilst energy is still being expended (but without blowing the fuse).

And I may want to be around people, but as someone with autism it’s always going to be a bit of a struggle. However much I learn and understand about myself, I’m always going to have the triad of impairments that are the hallmark of this condition: I am always going to be, in some ways, different from most of the people I encounter. Making social connections is always going to be more difficult for me than for someone who is not autistic.

I have found that – however much I may wish to be in the middle of a large group of people – small group situations are probably the optimum for me. Such situations lack the intensity of a one-to-one conversation but reduce the risk of sensory overload. It’s different if I know someone well; then, a one-to-one conversation is purely energising. That doesn’t happen as often as I would like, though, so small groups are probably the way to go, at least for now.

As a person with autism, there’s no doubt that my life would be easier if I were more introverted; if I could recharge by being alone. I wish I wasn’t quite so reliant about the social connections that I so desperately need but find extremely difficult to maintain. That – for me – is the real complexity, and the challenge, and the sorrow of being an autistic extrovert.

But that is who – and what – I am. And I’ve spent too much time behind the mask of introversion to want to pretend any more.

I may be high-functioning, but that doesn’t mean I can cope

I normally avoid the term ‘high-functioning autism’ when talking about my condition. I don’t really understand what it means in practice. According to Wikipedia, it just means someone who has autism without an accompanying learning disability.

My main problem with the term (other than its relative meaninglessness) is its implications. To me, someone who is ‘high-functioning’ is someone who can cope well with what life throws at them; someone who could, at least on the surface, ‘pass’ for someone without the condition.

That doesn’t feel a great deal like me at the moment.

People keep telling me I’m coping well with the stress I’m under in my personal life. They don’t see me with the mask off.

They don’t see me having an hour-long meltdown because I’ve had to make a fairly standard telephone call.

They don’t realise that I haven’t had a hot meal in about a month, because I can’t get myself organised enough to wash dishes and prepare food. Or that I’ve never yet managed to clean my flat without assistance, even though I’ve been living alone for over a decade.

They don’t know that, every night when I get home from work, I shut down for at least two hours because I am so exhausted and overwhelmed by everything that all I can do is lie there, somewhere between sleeping and waking; tears pouring down my face because I am too tired to stop them.

They don’t hear my screams every time I am interrupted by the telephone ringing, because it disturbs my script and intrudes into what should be a place of safety. And they don’t see the bruises where I’ve attacked myself to make the intrusion go away.

To the outside world, I probably do seem to be coping. I generally manage to hide my emotions until I’m away from people. I maintain basic personal hygiene (although that’s sometimes its own struggle) and normally manage to engage with people to the extent necessary.

They can’t tell how isolated I really am; that there is no-one to reach out to when things become too much; that the isolation has affected me to such an extent that I’ve tried to kill myself three times this year.

I’m coming to the realisation that I need more help and support than I’m getting. I just don’t know who to ask, or if help would even be available.

Because the truth is that I’m not coping. At all.

Admitting it is a different matter entirely.

Walking the tightrope

I haven’t written for a while. Life has become increasingly stressful, and I haven’t had the energy to do much beyond the tasks I absolutely have to do.

There is so much that is still uncertain. My father has started his cancer treatment, which promises to be both lengthy and brutal. I still don’t know where I am going to be living beyond the end of next month; if the flat purchase falls through there’s a very real possibility that I will be homeless. I’m trying not to think about that too much.

It’s all made harder by the fact that I am alone. I don’t feel as though there is anyone I can reach out to when things feel impossible.

This is where being an extrovert autistic is a bit like being the world’s worst tightrope walker.

As an extrovert, I need to be around people. That’s where I get my energy from, and being alone for prolonged periods is very difficult for me.

As a person with autism, I’m socially clueless and find being around large groups completely overwhelming from a sensory perspective.

In practice, the way that I need to balance these competing needs is to socialise quite a lot but on a one-to-one or small group basis. But in order to do that, there have to be people I can socialise with. And unfortunately, that’s not really the case at the moment.

(Structured activities also tend to work, but I don’t have the time or energy to look into those at the moment. Maybe when I get more certainty about my living situation.)

I think there have been a series of unfortunate events. I’ve never had a big social group, but it’s really only in the last three years that I’ve felt completely alone. Before then, there was always someone I could contact if things started to become unmanageable. But life and people move on. It’s no-one’s fault. But I haven’t been able to replace those connections, and now I am not sure I have the ability.

So I don’t know where that leaves me. Without people, I lose energy and I lose hope. Yet I don’t have the energy to try and forge new connections. I don’t have the confidence or self-esteem to pick myself up if I am rejected or unwanted.

But I’m not going to get through the next few months on my own. And the tightrope doesn’t have a safety net, and I am already losing my balance. Emotionally, I am back where I was in April and that scares me a bit.

I don’t think there’s an easy answer.

Coping in this altered world

The world has changed. I feel it in the water. I feel it in the earth. I smell it in the air. Much that once was is lost…

The Lord of the Rings: The Fellowship of the Ring

I first heard those words almost 15 years ago, sitting in the cinema with my father. I didn’t understand them until now.

We still have no concrete news. There is still so much uncertainty.

But the world has changed. The ground that I thought stood firm is shifting under my feet.

But the world hasn’t changed. I still have work to do; tasks to complete. I cling to my routines. They are one of the few constants that I have left.

I find myself less able to cope with the day-to-day challenges that living with autism brings. Last night, on the train, was just one example. I didn’t realise until the train set off that I was sitting behind a young lad who had his own issues, including noisy tics. I would normally have moved, except I have mobility issues at the moment so physically couldn’t.

I tried to use my normal strategies. But they didn’t work. I couldn’t control my reactions, although I tried my hardest. I had to use my bracelet to communicate when someone asked if I was OK. That’s the first time I’ve had to do that with strangers.

And the worst thing was, when I went to get off the train, the lad apologised to me. Shared the reason for his behaviour.

I wish I’d thought to say that he had nothing to apologise for. That he couldn’t help his reactions, as I couldn’t help mine. That my reactions didn’t mean that I was angry, or annoyed, or thought badly of him for acting as he did, or blamed him in any way.

But I didn’t think of that. Overwhelmed and exhausted, all I could do was say that it was fine and explain that I have autism. I wish I’d apologised to him in exchange. I just didn’t think.

I am having to process so many emotions at the moment that it doesn’t leave me much room for anything else. There’s grief, of course there is, even though we don’t yet know quite how bad it could be. Shock. Incredible sadness.

Those emotions I can share with others. Those emotions are completely understandable.
But there are others, more intimately connected with my autism.

Guilt, because I know that I cannot provide the practical or emotional support that will be asked of me.

Fear, because uncertainty is always frightening for me.

Anxiety, because I don’t know what the social rules are around this type of thing. And I’m out of practice with identifying them.

Shame, because I am thinking of myself at this time and not just of my father.

I don’t know how this will all end. But the world is not as it was. And it never will be again.

My father has cancer

I don’t quite believe the news. It’s completely unexpected. I don’t have a script, and don’t have the words.

I managed to hold it together on the phone when I was told. I said I didn’t know what to say. That seemed to be acceptable. There is nothing practical I can do to help at the moment. I wish there was. Practical I can do. The emotional side is much harder.

I am scared. I’m not telling my parents that.

I don’t have many other people to tell. I managed to call a friend tonight. She is great, but she doesn’t live anywhere near me.

I don’t think there’s anyone locally I can call on. That’s the problem I’ve found with autism: you don’t make friends easily and you don’t know when – or who – you can ask for help and support.

I don’t want to be alone tonight. I need someone to give me a hug; to tell me it’s going to be OK, even though I know there is a real possibility that it’s not.

I don’t have that. And those four words keep going around in my head: “my father has cancer”.

Another issue with trust

It’s quite late here, but I’ve given up trying to get to sleep (for now at least).

When I’m anxious and upset, sleep is one of the first things that goes. My sleep pattern’s always been quite disturbed, so I try to keep to a strict routine. Most of the time it works. Just not today.

When something bad happens, it can take me a while to process the implications. I can talk quite calmly and reasonably about the occurrence very shortly after I know about it – that’s probably a warning sign that it hasn’t quite sunk in.

It also takes me a long time to trust someone. Not only am I unsure of people in general – possibly because I don’t read them well – but I’ve had some bad experiences in the past when I’ve trusted people that I shouldn’t have done.

And that has happened again. And I am devastated.

It’s someone I should have been able to trust, as well. Someone who I relied on for support. That’s what makes this so difficult. Not only can I not trust that individual any more, but I also don’t know if I will ever be able to trust anyone acting in that particular role again. Which cuts off one of the major ways of getting the support and help that I need.

I found out about it yesterday (maybe the day before yesterday, if it’s after midnight when this posts). It didn’t fully hit me until today. And I have – completely unsuccessfully – been trying to mask all day; to pretend that I am fine. But my internal processor is working at full capacity to try and make sense of this new world I find myself in, so everything was pushing me over the edge. Things I normally could have laughed off or ignored just made me feel so unsafe and insecure. And I couldn’t explain why – it had nothing to do with what was happening today, really; I was just overwhelmed and vulnerable. At least I managed to keep myself calm enough that the proper meltdown didn’t happen until I was at home again. It was a particularly bad one this time. And I am left exhausted yet unable to get the rest I need.

And it’s made me realise yet again how completely alone I am.

I think if I told anyone what had happened, they’d understand why I am upset. Why I am having to reassess everything I thought I knew. Why I am left wondering whether there is anyone I can still trust.

But there is no-one that I can tell. There is no-one I can reach out to.

I feel as though I have gone back in time by a year. And I don’t think I have the strength to do this again, and to do this alone. But I don’t seem to have much choice.

Living with autism: the first year

I started writing this blog when I was going through one of the first difficult periods post-diagnosis. I was really struggling to accept my diagnosis. I genuinely thought, at the time, that someone was going to turn around to me and say there’s been a mistake. I didn’t know – and still don’t – whether that would be a good or bad thing. As time has gone on, and particularly since I’ve met more people who share this condition, it’s clear that that isn’t going to happen. And I’ve now (just about) accepted that.

Getting a diagnosis, a label, has been hard to come to terms with. It has made me question everything I thought I knew. But I think I’ve come out the other side with a better understanding of myself and my needs as an individual.

For me, the process of accepting and coming to terms with my diagnosis has almost been like some kind of grieving process, although I didn’t go through all the ‘classic’ stages.

Shock – I didn’t really go through this stage. Although the suggestion was unexpected, as soon as I started reading more, I could see that the label potentially fitted. So it wasn’t much of a shock to then have it confirmed.

Denial – This was a fairly short-lived stage on its own, but the feeling kept coming back for several months. The written diagnosis took a while to come through, and I didn’t feel able to fully believe that I really had the diagnosis until I had something in writing. Even when it came through, I found the wording slightly ambiguous and was worried that someone would at some point turn round and say that they’d made a mistake. It probably took about six months to be able to ‘relax’ and be more confident in claiming the label for myself.

Anger – This is a stage I only went through in hindsight. I didn’t really feel angry at all at the time, but looking back on the last year it’s obvious to me that this was happening from about three months from October to December. I’d been fighting everything and not really getting anywhere. So in hindsight, it’s pretty obvious that I was going through an anger stage. And this still bubbles up on occasion. I still go through stages of thinking that it’s not fair that I have to deal with this, and still get flashes of anger that this was ever suggested as an option.

Bargaining – I didn’t go through this stage at all. It never really seemed like an option.

Depression – Like anger, this is something I didn’t realise that I was going through at the time. In hindsight, this hit shortly after the report from a somewhat disastrous workplace assessment. (The assessment didn’t cause the depression, but was the catalyst for making me realise and reassess a few things.) This stage lasted about six months and I’m still not sure that I’m out of the stage completely.

Testing – For me, this hasn’t been a standalone stage. It’s been more of a continuing theme throughout the last year, that I’ve been almost testing different identities, different ways of being now this label has been given to me. And it’s taken about a year – and lots and lots of testing – for me to be confident that I now have the right ‘fit’ for me.

Acceptance – Somewhere I didn’t think I’d ever get to at my darkest point! But a year later, here I am. But I had to go through the other stages first. I needed to grieve and mourn for the life I thought I had. I needed to test out what felt right for the person I’ve had to learn to become.

But as I’m writing this today – exactly a year after my diagnosis – I feel fully confident in my own identity for possibly the first time in my life. It’s something that I think would be difficult to understand unless someone has been through something similar. I’d spent most of my life believing that there was something different about me, but through social conditioning had learnt to hide the differences relatively well. However, by hiding the differences I’d also had to hide parts of my ‘core’ personality. I’d cultivated the perception of always being the quiet one in the corner – when, actually, I’m naturally quite gregarious. (Still in the corner, though – it’s where I feel safe!) But, when I was still trying to hide my differences, it didn’t feel safe to talk unless I was very sure of the person I was with. Now, any differences can be explained away, so I’m able to relax more about being who I actually am as a person. Which is a good feeling. And it’s a place I don’t think I would have been able to get to without the diagnosis.

I suppose the original purpose of this blog has pretty much been fulfilled. I started it as an online diary to try to come to terms with the diagnosis and what it means for me in practical terms. But I’m not ready to stop writing yet, so I suspect the blog itself will start to change its focus somewhat: to be more about the day to day issues, misunderstandings and idiosyncrasies of life on the autism spectrum.

So, one year down. Hopefully many more to go 🙂 

Everyday challenges: the folk music festival

There are times when I can almost forget that I am different.

There are times when my differences come into sharp relief.

At the moment, it’s the second one. Because I’m at a music festival (the Warwick Folk Festival, if anyone’s interested), and becoming acutely aware of what I have to do just in order to cope, let alone enjoy myself.

I’m lucky that the types of music I tend to like tend to be a bit less popular, so things naturally don’t get so big or so busy. (Plus acoustic sets are generally welcomed!)

Even so, I’m struggling a bit with the environment. I can’t completely avoid queues and crowds. It’s by no means certain that I can get a seat in a place that feels safe enough for me to stay and listen to the music. And there is nowhere on the festival site where I can go and get some quiet time if and when it all becomes too overwhelming.

I’ve managed to get around the latter to a certain extent by booking a hotel rather than camping, so at least I have somewhere quiet available to me. Unfortunately, what was a 10-minute walk is now an hour’s walk with my current mobility issues, so it’s not working as well as I’d hoped. But it’s still better than the alternative.

But it has made me think a lot.

I keep seeing news stories about people setting up autism-friendly screenings, events, areas… for children and young adults.

(I was even reading about an autism-friendly music festival that someone’s set up. It’s not one that I would go to; it’s not really my type of music and I suspect I’m well outside the target age group. But for people who would like to go to the larger festivals but can’t manage, it’s great that there is something that would help them to have that type of experience.)

I don’t see much, if anything, about autism-specific adjustments for adults.

I also don’t see much about autism-specific adjustments to help people with autism participate in ‘normal’ events, rather than setting up events mainly / purely for people with autism. Don’t get me wrong: autism-specific events are great for some people. But others, like me, would prefer to participate in more mainstream events.

And I think it would be relatively easy to make adjustments that would really help.

Depending on the location, there could be a room or tent that could potentially be used as a quiet area.

There are arrangements for the mobility-impaired; special areas sometimes. So it must be possible to come up with similar arrangements for those of us who can’t bear to be crowded.

There are normally lots of volunteers. So some of them could be given autism-specific training, so they know how they can help if needed.

There would need to be some way of identifying people who need to use the arrangements. But most events seem to have wristbands and / or lanyards, so I don’t think that would be too difficult.

It takes thought, though. And adults with autism seem to be an invisible minority. We don’t come to anyone’s mind unless there’s a reason. But there will be more and more of us as time goes on; as diagnosis becomes more common; as children with autism grow up.

For now, I’ll keep on doing what I’m doing. Knowing that sometimes it will be a struggle. Knowing that sometimes the difficulties of just being in a particular environment will turn out not to be worth the enjoyment that I get from the event.

But the good news is that this time, the music outweighs the difficulties. This time, I’m glad I came.

And I have increased my musical instrument collection…

Literary inspirations

In learning to accept my condition, I’ve taken inspiration from many different and diverse areas. One of the main sources of inspiration for me has been literature.

There are three characters that I keep returning to as I grow towards a greater understanding of what it means to live a good life with autism. I’m pretty sure none of these characters were written with autism in mind – but they still speak to me.

Carrot Ironfoundersson

One of the Ankh-Morpork guard in Terry Pratchett’s Discworld series, Carrot was brought up by a Dwarf family and was surprised – despite his height – to be informed, at a relatively late age, that he was a human. Even when he realises that he is biologically a human, he retains many of the Dwarf customs and considers himself to be a Dwarf. For me, it’s an interesting analogy for being diagnosed with autism later in life.

Carrot can also be very literal and rule-abiding, and has a genuine interest in and liking for people. All of which sounds very familiar.

It’s telling that Carrot only really finds his place amongst a crowd of other ‘misfits’. As a human, he would never be fully accepted in the Dwarf society. But having been brought up as a Dwarf, a purely human society doesn’t particularly appeal to Carrot’s character and beliefs. Again, I find myself identifying quite strongly with this.

George Platen

Science-fiction was always going to be quite a rich source of material for someone on the autism spectrum. And I’ve been a bit of an Isaac Asimov fan since infant school. Even from that young age, one of my favourite short stories was always Profession.

The premise of this story is that George doesn’t have the right type of mind to receive a formal education and so is sent to something called the ‘House for the Feeble Minded’. What George doesn’t know is that this is actually a second ‘test’ to see whether he has both the innate capacity for original thought and the stamina to pursue it.

Re-reading this post diagnosis, the whole novella seems to be quite analogous to an autistic person trying to live in a neurotypical world.

Miss Jane Marple

This character probably needs very little introduction! I find most of Agatha Christie’s books enjoyable; there’s something about the restricted and somewhat characterised personalities in the books, coupled with the logical element of solving the crime that appeals greatly to me. And there are elements of most of the detectives (with the possible exception of Tommy and Tuppence) with which I identify.

Miss Marple, however, turns her mind to analysing and assessing behaviours of the more domestic kind. The main way in which she solves the mysteries is by realising similarities / parallels to other incidents. This is, of course, quite close to the way in which I relate to the world around me.

Miss Marple is also unusual in that she is a character who is very connected and interested in other people, but remains slightly separate. She has many acquaintances but very few close connections. Again, this is something with which I can identify.

The running theme with all these characters, however – and I appreciate that they are all fictional creations – is that they manage to live happy and fulfilling lives, despite their differences.

Which is certainly something I hope and aim for. Not being a fictional creation, however, it’s not simply a matter of writing my own happy ending on a page. But drawing these analogies does give me hope and a sense of the possible. Which is never a bad thing.

 

Running out of words

I am not writing the post I meant to write today.

I have the post in my head, all ready to go. But I can’t translate the pictures in my head into words on the screen at the moment.

I’ve been struggling with that all week. It’s worse with speech. I find myself in the middle of sentences, not knowing how I got there or what words to choose to get myself out of the linguistic cul-de-sac.

(Cul-de-sac always makes me think of French hobbits.)

But this is exactly what I mean. I write or say something, and immediately my mind makes different images, unrelated to what I am trying to communicate.

I don’t know why this is happening again.

I have been particularly anxious this week and am trying to hide it. That could be one reason.

I am still uncertain about where I am going to live in 3 months’ time. That could be another reason.

I am scared that this all means that I am building up to having a really bad meltdown. Which can’t really happen with my parents visiting this weekend.

I hope to be able to write the other post at some point this weekend. We’ll see…

The (somewhat dubious) pleasures of commuting

One of the most challenging things about working isn’t anything to do with the office environment at all. It’s the daily commute.

It doesn’t help that I need to rely on probably the least reliable train company in the UK. Everyone who uses them seems to be getting annoyed – their unreliability has even made the BBC News website.

But, as with so many things, it is all so much more difficult for someone with autism.

The mass of people crowding me: the noise, visuals and smell of the crowd overwhelm me. I try to focus on whatever’s playing on my iPod. It doesn’t always work.

I’m a hardened commuter. I survived the London rush hour for almost five years. Not quite sure how…

But – ignoring the bit through London – previously, there were always ‘known unknowns’. I had a change of train and it was foreseeable that one train would be delayed and I would miss my connection. So there was an easy plan B, which I had to use almost as much as my plan A (in fact, I think I wrote most of my masters’ dissertation in the Costa Coffee on Guildford station, as if I missed one train there wasn’t another for an hour and a half!).

The difficulty this time is the uncertainty about when – or if – a train is actually going to turn up. I’ve scripted and planned as much as I can to try and manage that. I’ve blocked out time in my work diary to try and avoid getting to the office and going straight into tasks I find more challenging. I’ve stopped planning to do anything in the evenings. I make complicated plans based on both logic and conjecture to try and make the whole thing as painless as possible. For instance, I’ll sometimes get the second train out if two end up running close together, even if it’s slower, just to have a bit of a quieter journey.

But it is still incredibly tough. I’m exhausted when I get into work most days and when I get home again. And by the end of the week all I want to do is sleep.

I’ve also started to notice that my brain occasionally does a really weird thing. I’m genuinely not sure whether this is to do with autism or not. But sometimes when I’m tired, or stressed, or anxious (usually tired) I almost try to overcompensate for this by becoming super-extrovert. It’s almost the opposite of a shutdown, but equally uncontrollable. My brain switches into overdrive and I become almost hyperactive – talking really quickly; becoming excitable; losing any brain-to-mouth filter. And I’m aware it’s happening, but there’s nothing I can do to stop it.

I’m hoping my plans to move will happen. At least that will give me a different mode of transport to hate!

The elephant in the room

Like everyone else, the person that I am today has been shaped by experiences and challenges. Some of the challenges I have faced are due to the group of characteristics that carry the label ‘autism’.

At the end of this month, I will have had the label for a year. Of course, I have been living with autism and its effect on me for a lifetime. There is much more to me than autism, but my personality and my autism are still inextricably linked.

That’s one of the things I’ve found most challenging over the past year. In trying to work out who I am, and where I belong in the world, I’ve come across many different narratives about autism. That’s unsurprising, really, as everyone with autism experiences their condition differently.

But many of the narratives are so negative.

And because autism is so personal, so key to my experiences and to who I am, reading or hearing something negative about autism feels like a personal attack.

Funnily enough, it’s fine when someone else with autism is talking about what they find difficult, or what they dislike about living with their condition. I fully acknowledge that being autistic is often incredibly hard-going. I wouldn’t be writing this blog if I wasn’t still struggling with it to some extent.

But the narrative that autism is somehow ‘bad’; that there needs to be a ‘cure’… that is an uncomfortable and upsetting thing for me to hear.

My brain works in a different way to most people’s. I see the world slightly differently sometimes. But that doesn’t mean I’m bad, or wrong, or need to be fixed – I’m not broken, just constructed to a different pattern!

It’s easy to dwell on the negatives that autism brings. They are the most obvious external signs. But for every negative, I find there’s a positive side.

The brain that finds navigating through social situations hard and exhausting is the same brain that can spot patterns in behaviour and draw conclusions about what could happen next, often to a greater degree of accuracy than someone who prides themselves on their ‘people skills’.

The sensory sensitivities that make it difficult to be in a crowded and noisy environment can also be used to bring a great sense of joy, happiness and belonging through listening to and playing music.

The person who thinks in pictures and struggles with the abstract has learnt to collect and use words effectively, because each word has its own individual meaning and the visual metaphors she uses can convey some of the images in her mind.

But, in spite of all of this, autism is still the elephant in the room.

Even when people try to take positive action, it can come across as negative. Campaigns about getting more autistic adults into employment seem to focus either on trying to persuade employers that people with autism can be effective despite their autism, or on stereotypes that I personally find unhelpful and inaccurate. (Put me in one of the roles that is stereotypically associated with people on the autism spectrum and I’d struggle: I don’t have the right skill set.)

I want people to employ me because I’m actually good at what I do. And part of what makes me good at what I do is how I think, and one of the main reasons why I think how I do is because I’m autistic.

I want people to like me for myself, not just spend time with me because they think they are somehow doing a charitable thing or doing their good deed for the day.

Most of all, I am scared that others will listen to the negative messages that are everywhere, and that they will judge me. Very few people actually talk to me about my condition and how I am affected. I wish they would start. Because that’s the only way that the elephant in the room is ever going to leave. And it’s taking up far too much space that could be used for other things…

Trying to keep calm

I’m still trying to distract myself from all the Brexit uncertainty. It’s not proving easy (especially as I work in policy, so it’s kind of relevant!).

Today I got my mortgage offer through. It’s all happened very quickly: a month ago I hadn’t even considered buying a flat. And now I’m very close to committing myself to something for the next 30 years. And I’m seriously wondering whether I should pull out.

The flat is almost perfect for me. It’s in a reasonable location and I’m not being over-ambitious with the amount I need to borrow. I don’t even mind if I end up in negative equity for a while, as it’s somewhere that I’d be happy to stay for as long as necessary.

The thing that is making me think twice is uncertainty and worry. Mainly about whether the mortgage offer will be pulled between exchange and completion.

But if I don’t carry on with the purchase, I’ve still got the worry about where I live. Whether my landlord will decide to keep or sell the property I currently rent. Whether the rent will go up significantly. Whether I will ever be in a position to buy again. If I can’t buy somewhere to live, what will happen to me when I retire.

I haven’t decided yet what I want to do.

And I don’t handle uncertainty well. I’m not the kind of person to keep calm in a crisis (and, as a side-note, quoting this poem at me does not help at all). This evening, I’ve had my first real meltdown for about 2 weeks. No harm done. I’m at home and safe, although still scared.

I hope it will all work out. But I’m reminded of the dichotomy between one of my favourite songs and its video…

(It still makes me laugh, though. Which is very welcome at the moment.)

Life in an uncertain world

One of the ways that autism affects me is that it is almost impossible for me to cope with uncertainty. And, unfortunately, it appears that there will be nothing but uncertainty for a while, following on from the referendum result last week.

There will definitely be changes as a result. I don’t know yet how – or if – these changes will have a direct impact on my life.

But although I didn’t vote to leave, and I think it is the wrong decision, I will find ways to cope with any change that this will bring. What I’m finding incredibly difficult at the moment is all the speculation about what might happen. For my own wellbeing, I need to disengage with the ‘what if’ hypotheses; to not hear anything until a change is certain. And then I can work out how to deal with the actual change.

As well as finding the speculation difficult generally, I’m being made increasingly anxious by all the specific speculation about house prices and mortgage lending, as I’m currently in the middle of trying to buy somewhere to live. It’s part of my longer-term plan to get the stability that I so badly need at the moment. Assuming I can still get a mortgage, I intend to carry on with the plan – I can afford it, I need somewhere to live, and this is the first opportunity I’ve ever really had to be able to buy something appropriate for my needs. I don’t want to put that at risk because of uncertainty.

It’s still keeping me awake at night, though. I keep wondering whether I’m doing the right thing or not.

I assume anyone in my position would be having the same doubts. But it is perhaps harder for me to deal with those thoughts.

And I get to the stage where I think I’m coping OK. Then something minor happens and it’s clear that I’m not. For example, today I wanted to get out to the sea and have a walk to clear my head. I got to the car park, found the parking space I wanted… but couldn’t park in the space because as I was preparing to reverse in, the people in the next space decided to open the passenger door and mess around, telling me to go elsewhere.

I couldn’t think of another plan. I waited for a while, but they wouldn’t close their door. So I drove home again. A two hour round trip to go nowhere.
In hindsight, I should have just found another space – the car park was busy, but not full. But I literally couldn’t make that decision at that point in time.

I know I will be living in a very uncertain world for a few years. If the speculation dies down, I can find a way of pushing the uncertainty to the back of my mind; a way to pretend that it doesn’t exist. It’s not a matter of me being in denial: I know things will change. But I need to deal with the change when it happens, not try to deal with all the speculation and catastrophising that’s going on at the moment.

I don’t think the speculation is going to die down any time soon, though. There seems to be too much hurt; too many people taking the results personally. I’ve actually had to stop reading a couple of online forums because the personal attacks on posters made me feel so uncomfortable.

But if it doesn’t die down; if life can’t go on as normal until we know for certain what changes are going to happen, I am not sure how I am going to cope…

Welcome to my (sensory) world

First day back at work, and I’m already finding it challenging.

It’s not the work itself. But I’d forgotten how difficult it is for me to be in an open-plan office. Even though everything is set up for me so it is as quiet and non-stimulating as possible, and I’m able to get away when I need to, it’s still not the ideal environment for me to be in. (The earplugs improve things, though! So that’s all good.)

I’m only just realising how much more difficult this kind of thing is for me compared with people who don’t have the same sensory issues. I’ve even come home this evening and prepared a whole PowerPoint presentation on the topic (but I can’t work out how to put it into this blog!).

But I have uploaded some clips which may give an idea about how difficult some of the sensory inputs can be to process.

Let’s start with something I didn’t realise was different for me: what I look at.

Here’s what a walk through a car park might look like for someone who is neurotypical:

And now the same walk from my perspective:

I look around far more – and therefore have far more information that I need to process – than someone without my condition.

The sense I find more noticeably different, however, is that of sound. And this is where we come full circle: asking me to concentrate on what someone is saying in an open-plan office is like asking someone without the same sensitivity to concentrate on the poem being read in the following video clip:

It’s possible, particularly if you’re familiar with the text. But it takes more concentration than you’d expect. And the video is only about a minute long; I can be in an environment with a similar – or worse – impact on me for 10 or 11 hours a day.

Still, there were no meltdowns today. No need to retreat more than I’d planned. So I’m counting it as a successful day.

I hope tomorrow goes as well.

A very geeky post about earplugs

Warning: earplug photos at the end

I don’t know what it says about my life at the moment that finally getting the earplugs I ordered about 2 months ago is the highlight of my day.

The timing’s actually very good – I’m supposed to be going back to work on Monday, so hopefully they’ll help in just dulling the noise of my open-plan office.

And they’re very cool. Well, I think they are anyway! They’re moulded to fit my weirdly-shaped ears and have interchangeable filters to block out variable amounts of noise. They’re also a rather nice shade of teal and the interchangeable filters look a bit like a snorkel. Even without the filters they seem to block out quite a bit of noise.

More importantly, I’ve been trying them out in front of the television and they actually seem to work. Particularly with the higher noise reduction – I can play the cello with them in, still hear what I am playing and ignore the television. I haven’t yet tried playing the trumpet with them: that may have to wait until tomorrow (as I have only just remembered I have a trumpet, and I don’t think my neighbours would be too impressed if I started playing it, unmuted, at 8.30 in the evening).

Anyway, I thought I’d post some pictures.

Firstly, here’s a gratuitous picture of a sunset, taken a few weeks ago in Haywards Heath. Those of you with a nervous disposition should probably look away after this…

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Right, so here are the earplug pictures (the penny is just to show size):

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Left earplug without filter fitted
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Filter / very small snorkel 😉
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Left earplug complete with filter

I’ll probably post something on Monday about how I find them in a more challenging environment…

Supermarket challenge

I was interested to read a few weeks ago that one supermarket has introduced a ‘quiet hour’ for customers with autism. The idea is that music, escalators and other technology will be turned off to reduce stimulation.

I was thinking about this today as I was in the supermarket. For me, supermarket shopping is almost like being in a race: will the sensory inputs win or can I get through my shopping list without being completely overwhelmed.

Today the sensory inputs won. Mainly because the supermarket put the hummus in a completely illogical place and I was walking around the refrigerated aisles for literally 30 minutes getting increasingly agitated when I couldn’t find it (this particular supermarket has two separate areas for refrigerated items, which doesn’t help). At least I drive, so I have a quiet place I can use to desensitise.

So I think initiatives like this are a great idea – but, as always, one size doesn’t necessarily fit all.

I’m not sure how much this particular initiative would help me, even if I lived nearby.

Dimmed lighting would be helpful, but the colourful packaging on shelves stacked high still provide too much visual input.

Escalators don’t bother me – and actually, with my mobility issues, may mean I couldn’t get to where I needed to go.

Most of the auditory issues I face come from other customers, rather than music. And I’m not sure what the supermarkets can really do about that. Unless they’re going to oil all the trolley wheels, ban screaming children and not allow people to talk at volume into their mobile phones. Oh, and not have the coffee shop open.

But it’s a step in the right direction.

I think, for me, I’ll continue to try and pick times when it’s likely to be less busy. It doesn’t always work, but it’s the best workaround I can think of at the moment.

Unleashing my inner librarian

I still have problems understanding that most people don’t think in the same way as me. Small things bring this home to me sometimes. Things I don’t mention because they are so obvious to me; so much a part of how I think that I can’t understand how anyone could think differently.

One of these things is categorising and compartmentalising things as I go along.

My head is full of individual files, categorised by my own personal equivalent of the Dewey Decimal system and organised by correlation to categories that make perfect sense to me (but probably wouldn’t to anyone else!). I pick at thoughts, turning them over and over in my head until I can find where they fit, or what a genuinely new classification should be. This can take a while, but I can’t be content until I’ve placed the thought / experience where it belongs.

This is possibly part of why I always enjoyed helping out with the school library when I was younger: there is something immensely satisfying in knowing that there is a system and everything is exactly where it is supposed to be.

I’m also really good at compartmentalising things. I sometimes wonder if this is to do with having to wear so many different masks before my diagnosis; I became very used to adopting different personas for different situations. That’s (mainly) gone now, but the ability to compartmentalise remains. So, for instance, I can have a blazing row with someone over something and then five minutes later be able to engage with them on a different subject as though the argument never happened. (My father is exactly the same, funnily enough – and I suspect he shares my condition.)

This sometimes leads to problems with interpersonal relationships, though. I can’t understand why some people sulk; why they let the wounds fester and are slow to forgive. That mindset is totally alien to me. It scares me as it seems to require an emotional response that is not within my power to give, and any response that I do give only tends to make things worse. But then, people who have that type of reaction probably don’t understand how I can be – completely and genuinely – OK with someone who moments before I’ve been in a shouting match with. They can’t understand that the argument may not be personal; that even if it was personal the topic has now changed to something where we aren’t in disagreement; that ‘normal service’ has now been resumed.

This difference in thinking styles does not seem to be commonly addressed in information about autism. I don’t know why. Perhaps people with autism tend to gravitate to environments that support our natural thinking states; where we can find common ground with others that are either autistic or have complementary ways of thinking. Perhaps I am an outlier with what I’ve chosen to do and in the amount and types of interaction that my choices have meant.

I’m not hiding my inner librarian any more. Instead, I want to be open about how I think and about what this means. Because the more I can explain, the easier it will hopefully be for people to accept that this is the way I am, even if they can’t understand.

I hope that people can accept me, anyway. After all, I accept them – even though I don’t understand how they think. And I firmly believe that there is no right or wrong way in how people think about things – as long as they do…

100 posts and counting

I didn’t think when I started this blog that it would get to 100 posts.

Although I haven’t had a blog before, I’ve started numerous offline diaries and have always given up after about 3 entries.

So I thought it might be a good time to reflect on some things.

I started this blog when I was struggling to accept my diagnosis. I genuinely thought, at the time, that someone was going to turn around to me and say there’s been a mistake. I didn’t know – and still don’t – whether that would be a good or bad thing. As time has gone on, and particularly since I’ve met more people who share this condition, it’s clear that that isn’t going to happen. And I’ve just about accepted that.

I still struggle to accept the implications of the diagnosis. I still struggle with the changes that a single word has led to. And I don’t quite know how I will cope with the changes that are still to come.

I hope that things will get easier at some point over the next 100 posts. I hope that I will feel the need to write fewer posts from a place of absolute despair and isolation.

That may prove to be a triumph of hope over expectation. We’ll see.

I wanted, though, to link to some of my favourite posts. Some deal with autism directly. Some are more around my state of mind. They may not be the best-written posts, but I think they are the ones that represent me best so far.

A Cinderella story
Loneliness
8 things I wish people knew about me
Was hoping things would be easier by now
Stereotypes
Minding my language
The earth and other minor things
Vulnerability
Swallowing my pride
Worst day this year
ASD: a (very) personal guide
Behind the mask
Some thoughts on World Autism Awareness Day
Trying to find my balance
Changing the script
Autism in different eras

And finally some facts and figures.

In 100 posts (including this one) I have written 40,177 words in total.

The shortest post is 74 words and the longest 1298 words, with a median post length of 373 words.

I could go into more detail about the number of views, most popular pages etc. But it’s not about that for me (although I am glad that there are some people out there reading my random musings! It makes me realise that I’m not completely raging into the void, despite the title of the blog.). It’s been interesting, as much as anything else, for me to look back on the last 8 months or so and see what’s changed and what hasn’t.

Going into hiding… again

(A bit of a follow on to this post)

It’s probably not going to be a good day when you have a meltdown before 8am.
At least this time I know what the cause was. My parents are coming to visit today. And I always have a meltdown before they arrive, however well-prepared I am.

It’s the going around my flat hiding everything that starts it.

And it’s not helped today that I’m still in pain with my foot, have just started new medication that’s knocked me out a bit and they’re coming to visit on a Saturday, which sends my routine out of kilter.

At least I didn’t do anything particularly destructive this time – just a matter of pacing, crying and swearing. Which isn’t nice, and still leaves me feeling drained, but it can get a whole lot worse.

Today will be difficult, though. I just don’t want them to be here, but am going to have to hide that. To put on a mask again. To try to act as though I’m not autistic.

I wish they could just accept me for who I am. But that isn’t going to happen. They’ve never really been able to accept that I am my own person and that my thoughts, ideas and values are different from their own. And that’s without throwing autism into the mix…

I keep telling myself that it is just one day. I’ve got through these days before, and today will be no different.

But they keep wanting to visit. I don’t know why. Maybe they think they should.

And – as I develop more confidence in who I am – each time it gets harder to hide. I shouldn’t have to. But whenever I’ve let my guard down, things go wrong. It seems to be less painful to me, on balance, when I hide around them than when I don’t.

Yet, for some reason, I can’t bring myself to be the person who says “this isn’t working. Let’s not see each other any more”.

Perhaps I’m just weak. Perhaps I’m still hoping for a change that I know won’t come.

Another problem with no easy solution. I think I collect them…

A failure (yet) again

It’s been a challenging morning and I’m feeling a bit knocked about (only metaphorically, thankfully).

I’m still not back at work, and I want to be. I’m just not well enough at the moment.

I still can’t walk properly, or put any actual shoes on (have been living in sandals for the past few weeks, and it really isn’t the weather for it).

And being unwell – either mentally or physically, and at the moment it’s both – makes the whole autism thing much harder to handle. I don’t have anywhere near the same capacity to cope with things. For instance, I’m writing this from a coffee shop where I usually feel comfortable. But I wasn’t able to get the table that I really like, and that’s thrown me. I have moved tables – the original table I had wasn’t one of my ‘safe’ tables, and so the plan B was to just sit somewhere that isn’t awful and move to one of the better tables when it came free. Which I did, but it’s still not ideal. And at the moment, little things like that are making the difference between feeling OK and coping OK and… not.

And the techniques that I use to dampen the sensory stuff aren’t working particularly well. I feel as though every nerve is twitching and I am constantly on edge. I’ve described the sensation in the past as ‘electric spiders’, but it hasn’t been this bad for ages.

What I would like at the moment is to be able to get into some sort of routine. To be somewhere quiet but not isolated. To get out for a long walk to clear my head.

What worries me most is that I don’t actually want to talk to anyone at the moment. And I always want to talk to people when I feel bad. It’s sometimes the only thing that makes me think I can get through this. I don’t know whether it’s just that I’ve lost confidence that anyone would want to speak to me. Or that I’ve finally given up on reaching out; finally accepted that there won’t be anyone to answer.

But mostly, I feel like a complete failure that I can’t just get over this.

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.

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…

One small click…

I’m going on holiday next week. I love travel, but always find the journey quite stressful. Airports in particular can be an issue. There is always too much noise; too many people. Someone always pushes into me in the security queue (I’m not that slow, honestly!).

And then there’s the getting on the plane. The anxiety that someone will be sitting in my seat and I’ll have to argue with them. The fear that there won’t be anywhere to put my hand luggage.

I’m also having more meltdowns at the moment, and they’re more destructive than they’ve been in a while. That absolutely can’t happen at an airport, so that causes more stress.

So I’ve managed to get over my pride and book special assistance, which should help with all the things I find most difficult about the journey. I feel guilty, though – as though I’m taking resources from people who need it more than I do. But based on the past few weeks, I just don’t want to risk something going catastrophically wrong.

At least I could do it online. Just one small click. But it feels like a big step into the unknown.

Some thoughts on ‘The A Word’

I wasn’t sure whether I was going to watch this series or not. I wondered if it would be too difficult, too raw for someone who was still coming to terms with their own diagnosis.
And in some ways it was difficult to watch. But not for the reasons I expected.

There were some things that I saw in Joe (the autistic child) that I recognised in myself. The constant wearing of headphones. Using music to shut out the world around him when everything became too hard. The almost encyclopaedic knowledge of song lyrics.

But the hardest thing was that the programme didn’t really seem to be about Joe at all. Joe, and Joe’s autism, almost seemed like a MacGuffin.

It was all about the people surrounding Joe. The impact of his diagnosis on them. Their own difficulties and failings – most of which had nothing to do with ‘the A word’ at all. (Although I did at one point wonder whether there was going to be a twist at the end revealing that all the characters were autistic!)

Joe and his views, his needs, almost seemed to be forgotten.

And that was a bit too realistic for my liking. I’m not sure that message was intentional…

I don’t think I’d watch a second series, if there is one. At least not with the same characters. I might be more interested if there was one about diagnosis as an adult – and that actually showed things from the viewpoint of the autistic character. However, I appreciate that’s possibly too much of a niche interest!

Meltdowns – the unvarnished truth

Warning: this post contains a potentially upsetting / triggering image towards the end

The last two weeks have been difficult for me in terms of meltdowns and near-meltdowns. I think it’s because there is still so much change; so much that I am having to process. It all adds up and then it doesn’t take much for the whole thing to come crashing down. It’s a bit like carefully stacking up a row of dominoes and then someone accidentally brushing against them. And then this happens…

dominos

Today was the worst meltdown I’ve had for quite a while. The trigger was, objectively, something that would seem quite minor. But the dominoes started falling and there was nothing I could do to stop them.

So here’s what today’s meltdown was like.

It started with a surge of emotion, so strong that nothing could contain it. My own mental image is something like this:

volcano

I can’t define the emotion particularly well. It’s somewhere between fear and panic. My skin starts to burn. I try to get words out but all I can do is scream. I scream until my throat is hoarse.

Then the tears start. The sensation of the tears falling down my cheeks is like someone is drawing a lighted match down my face. But I can’t stop crying.

I can’t think coherently. All I want is the pain and emotion to stop. I start hitting where it hurts, to try and take away some of the pain. I hit my head so hard and so many times that hours later it still feels tender. But still the pain won’t go away.

I slap at my arms, scream again. I still have no words and no coherent thoughts. At some point I move into the kitchen and find a knife, slashing at my arms to take the pain away.

It doesn’t work.

Eventually I drop to the floor, curled up, sobbing.

I come to my senses about half an hour later. My head hurts. My arm stings.

I pick myself up and drag myself to my safe place. I can often get here before the meltdown starts. Today it all happened too quickly.

My worst meltdowns are when I’m alone. If there are other people around, they can often step in and de-escalate the situation before I have a full-blown meltdown, even if I can’t stop myself. Or they can intervene so I don’t hurt myself so badly.

But today it was just me.

And this is the impact it had on my arm:

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The impact it had on my mental and emotional state was far worse.

Changing the script

I haven’t been handling change well at all this week.

It disrupts me; makes me feel unsafe. This is especially the case when I don’t have a ‘fallback’ script. And uncertainty is even worse.

So I thought I’d explain more about exactly what I mean when I say that I need a script. It’s not like learning lines in a play; more like writing computer code.

Every situation for me is like an individual macro, or series of linked macros. They run well, most of the time. Like any VBA code I write, they may not necessarily be written in the most efficient way but – assuming I have enough spare processing power – they shouldn’t cause things to run too slowly.

And in normal circumstances, that’s fine.

To illustrate this, here’s a very simplified flowchart of the script I use when I go into Brighton for a regular Saturday morning appointment (I did start writing this in code, but then thought that may be rather too niche).

getting to Brighton

When a change is introduced, it introduces a bug into the code. There’s a mental ‘error message’ and I need to work out how to fix the script.

Even if I’ve been in similar situations before, it can take a little bit of time to identify the bits of code I need to plug into the current macro. If I need to write new code, it takes rather longer.

When I’m debugging my mental macros, it helps to have binary choices. So, for example, last Saturday the train stopped for an unknown period at Preston Park station.

My ‘normal’ script says that I need to stay on the train until Brighton. But the points failure introduced uncertainty into the whole thing. I can’t deal with uncertainty, so I needed to rewrite this quite quickly. I did this through a series of choices:

Choice 1: stay on the train or leave the train

That one’s easy. Staying = uncertainty = unacceptable

Choice 2: bus or walk

A conditional decision here: if there is a bus due in 10 minutes or less then I will catch the bus, if not I will walk.

Choice 3: get off the bus or stay on for longer

This choice is more complex but I know this area of Brighton quite well, so have more data to make an informed choice. The decision is to get off the bus as soon as current time + projected walking time = appointment time.

However, some situations I can’t fix without assistance. There can be a number of reasons for this. I may not know what commands to use. The code has too many variables and I can’t keep them straight in my head. Or someone may react in a way I don’t anticipate and haven’t yet defined.

I’m still adding to my library of scripts. Completely new situations don’t come up that often. But the more scripts I accumulate, the longer it can take to find the right script. Maybe the next thing to work on is how to index more effectively; unfortunately – and this is where the analogy falls down – I don’t think it’s possible to upgrade my brain to one with a faster processor…

A musical interlude

This week has been too much for me.

I am empty. I have no fight left in me.

I don’t know what I feel; I can’t tell any more.

I am trying to get comfort any way I can. But I’m alone and have no words of my own. So I’ve been listening to a few songs over and over again. Songs where I find the melodies and timbre of voices strangely comforting. Songs where the lyrics say what I cannot.

Here are the ones I could find on YouTube. It’s not the complete set. But I suppose random folk music isn’t to everyone’s taste…

Trying to find my balance

At the moment, getting through the day is a bit like trying to walk along a balance beam while blindfolded. (And, even when not blindfolded, I have issues with my balance.)

Most of the time I can just about manage. Although my progress is quite wobbly. Sometimes to get to the end of the beam I have to be a bit creative; to break the normal rules; to sit and shuffle along rather than walk. But I’m better at balancing on the beam than I was and managing to stay upright for longer.

I fall off slightly less than I did. And I’m quicker to get back on the beam again after a fall. The falls hurt more, though, and do more damage. I can still end the day both figuratively and literally bruised. Luckily, the physical damage doesn’t often show, although I’ve got quite an obvious bruise on my arm from a serious meltdown last week and an emerging one on my cheek from today.

I’ve had a challenging week. In many ways, I’m dealing with my condition better than I was. I’m increasingly able, in many circumstances, to find the words to ask for what I need. I’m increasingly comfortable asking for help when I need it. And the falls are more predictable; every time I’ve fallen this week I’ve been able to identify why.

Which makes the difference between when I’m OK and when I’m not rather more noticeable than it perhaps used to be.

I still can’t shake my own conviction that I should be able to control myself better; that I should be able to stop myself from falling.

I also still can’t fully accept that this is now part of my life. I keep thinking that if only I could find the right technique, the right script, that I could be normal; could be acceptable.

That’s not the case.

I still have to script almost every interaction, unless I am completely comfortable with both the people and the situation. I still mask more than I should, but the mask is getting increasingly brittle.

And even if I could be word-perfect in every situation (I can’t), I know I’m reliant on other people to also stick to my script. Which they don’t, and they shouldn’t: they have their own ideas; their own scripts to follow. So I will continue to have to deal with situations where things change unexpectedly, or uncertain. Where people don’t react as I expect or anticipate. When my senses are unexpectedly overloaded. When my strategies fail.

I will continue to have days like today. I will continue to have the same instinctive reactions.

And at some point I might stop hating myself for being like this.

I think there’s still a long way to go.

 

Policymaking in my spare time

I had the rather odd experience this evening of drafting a written response to a call for evidence that is nothing to do with my day job. I work in policy so it’s a bit surreal to be writing something in my own capacity, simply as an interested member of the public.

The response was to the Westminster Commission for Autism’s call for evidence on access to healthcare. I have quite a lot to say about that, after a number of interesting experiences! (To be fair, most of my interactions with healthcare providers have actually been quite good. But the call for evidence wasn’t asking about the positives.)

I don’t think I will ever forget the morning I spent at the Sussex Eye Hospital, effectively in the middle of a building site. The noise. Sitting in corridors because there were no waiting rooms. Being moved constantly because everyone else had brought a companion with them and they wanted to sit together. Not able to speak by the time I got in to see the consultant. Not able to process what he was saying. The consultant not even noticing that I couldn’t…

This was post-diagnosis. I’m not sure if my autism was mentioned on the referral. If it was, it was ignored.

And don’t get me started on appointments that can only be made / changed via telephone.

But they also asked for recommendations. And for someone who does this for a living, that’s a question that is always welcome. So here are my thoughts in response to the question about recommendations you would make to Government, local authorities and the NHS to improve access to healthcare for people with autism:

  • Put a note on computer systems about diagnosis so a person with autism doesn’t have to explain their condition whenever they see a new healthcare practitioner
  • A statement about the impact of autism on the individual and any adjustment or special arrangements that the individual needs in order to access healthcare to be placed on medical record with GP
  • Make it clear in referrals that the person being referred is autistic and, where possible, what that means for the individual
  • Consideration to be given to appointment times- such as early appointments to minimise anxiety / risk of delays – and whether standard length appointments are sufficient
  • Healthcare settings to have quiet and non-stimulating areas of waiting rooms to avoid sensory issues
  • Allow appointments to be made / changed through a variety of different channels
  • Availability of someone (possibly through a volunteer service) to provide support to individuals if needed when accessing healthcare

Now I just hope they don’t adopt the ‘do nothing’ policy option. I quite like that one when I’m the policymaker. But, in this case, I don’t think it’s the one I’d suggest…

(If anyone else is interested in responding, details of the Commission can be found here. They want responses by 2 May 2016.)

A bit of retail therapy

Well, quite a lot of retail therapy actually.

Most of which I can justify as stuff that will hopefully help me manage this condition. That’s one of the unexpected positives: I get to play with fun stuff.

My two favourite finds this week have been:

1) A nail pillow, which I found in Tiger last Saturday. (The nail mat is, however, probably not going to form part of my long term strategy. It hurts.)

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2) Wristbands that I can use to indicate whether I’m OK to talk or whether I want to be left alone.

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I’m also starting to set up a sensory box (actually a pencil case) with a few different things that I can use as and when I need them.

And I finally managed to get fitted for proper earplugs. Apparently I have difficult ears. That shouldn’t really have surprised me as nothing has been easy so far… But I should get them in a couple of weeks.

I also persuaded myself to buy something completely unconnected with autism – the rather fetching purple nail varnish illustrated in the photo of the wristband. I often used to wear bright nail colours but it’s been years since I’ve taken the time (I stopped when I became ill and my hands first started to look like claws as I felt so self-conscious). It’s a small thing. But it makes me feel a bit more like myself again.

So. A better end to the week. I’ll take that as a success.

 

 

Death by 1000 cuts

I have not coped well with today.

So much uncertainty. So much fear.

I understand now why this is considered torture. There’s very little I can point to and say “if that hadn’t happened, then I would feel better now”. If I tried to explain, it would seem as though I’m getting upset over nothing. But it is a series of nothings; a series of small things that add up to something that is beyond my ability to bear.

No-one is conspiring against me. No-one is treating me particularly badly.

It’s just the unrelenting grind. Climbing uphill with nowhere to rest.

The frequency of my meltdowns is increasing. I can’t control or stop them. There is no-one to comfort or console me afterwards. I am spinning untethered into the void.

I’m scared.

I am doing what I can. But at the moment that isn’t enough. I need to feel settled. I need to feel safe. Yet I am all tangled; all wrong. And I don’t have the words to articulate why.

I am an elastic band stretched taut and still being stretched.

I am a parachutist with the parachute strings severed.

I jump at shadows; at the smallest sound.

I’m not at my breaking point yet. I know where it is. And I still have some fight; the danger is when I stop caring. But I can feel it coming. Distant still, but getting closer.

I’ve been asking for help. Pleading; begging sometimes.

But no-one hears. And no-one comes.

I don’t know what else to try.

Can’t find the right key

I’m struggling a bit this week.

I think last week I was basically running on adrenaline. Trying to convince myself that I was going to be OK. Succeeding, on the whole.

This week it feels as though nothing has changed. Now the dust has settled a bit, I’m still in the same position; still running as fast as I can just to stay in one place.

It’s hard.

And I don’t know how to explain how I’m feeling at the moment; the tension; the uncertainty, other than through the use of a musical analogy.

So let’s assume that a ‘normal’ level of contentment is C major.

That’s where I tend to be when I’m at home, or when I’m talking to someone I feel comfortable with.

Quite commonly I’ll move to a closely-linked key: to G major, F major or A minor (depending on who I am with and how I am feeling that day). These are all still OK – but a little bit away from my ‘home’ key. And although I can stay in them for quite a while, it’s a mild relief when I get back to C major.

But at the moment, I’m feeling like a G7 chord. Which needs to resolve pretty quickly to C major as otherwise it’s really tense and uncomfortable. It feels like something is constantly wrong, although I can’t articulate precisely why.

But I can’t seem to get my mental chord progression to resolve. I’m stuck out on a limb, unable to move my fingers from G7. I’m trying different things, but nothing seems to be working that well.

I find myself resorting to old tactics. To isolating myself, so at least my tension and lack of resolution doesn’t impact other people more than it needs to.

It’s working from that perspective. Sort of.

But I need the resolution.

And at the moment, that’s just not happening.

A bad end to a good day

I thought I was going to be able to write a positive post today.

One about how I was managing to still get out and about; still enjoying things whilst controlling the impact that my autism has on me.

And for most of the day, that seemed to be the case.

I’d planned the day so carefully.

I was going to drive out to a National Trust place about an hour from where I live, arriving there early so I didn’t have the stress of trying to find a parking space. Then I’d have a coffee while it was quiet and before the main house opened, into the house as it was opening – so again, avoiding a lot of the crowds – and then a walk around the grounds.

The first part of the day went according to plan.

I was slightly fazed by the grandparents allowing their toddler grandson to climb on a wooden table and stomp his feet. Meaning that I had to finish my coffee rather more quickly than I would have liked, as I simply couldn’t stand the noise any longer.

I was also a bit overwhelmed by one of the galleries in the house – dark paint, lots of paintings of people’s faces and marble sculptures at different heights. But that was OK, too – no-one was making me stay.

On the walk around the park, I mentally composed a rather different post. It was going to be about how my strategies had worked despite these challenges.

And the walk was lovely. I’m glad I went, if only for that.

But then I made a fundamental mistake.

Things had been going well. My strategies had been holding.

I’d forgotten to bring lunch.

I thought I could cope with the busy café. The queue and the noise were manageable. But then a couple of things happened. I couldn’t find anywhere to sit – everyone else seemed to be in groups and were reserving tables as soon as they became free. So I started getting anxious that I would have to sit on the floor to eat. Then someone spoke to me – and I couldn’t place where I knew her from, or what her name was. Which I always find stressful. But a volunteer helped me find somewhere to sit when the food came, so I thought it would be OK; I could just eat quickly and leave.

So I tried to calm myself down.

But I wasn’t given space to use my strategies. People kept interrupting me; asking if they could use the table as well.

They weren’t being unreasonable in asking. I know that.

But I couldn’t deal with conversations. I couldn’t process what they were saying. I panicked.

I ran. Just about having the presence of mind to gather up my belongings.

Couldn’t get out the way I came in; children obstructing the exit, laughing at me.

Ran into the village. No idea where I was or where I was going. Couldn’t see. Couldn’t speak. Couldn’t think.

Recovered eventually, as I always do. Found my way back to the car park. Sat there for a while, calming myself down so I was in a fit state to make the drive back – I won’t consciously put other people at risk.

And back home, the forensic examination starts:

What happened?

What could I have done differently?

Was I just seeking attention?

Well, at least I can say that the answer to the last question is a definite ‘no’, despite what some people have told me!

And I know what happened: I tried to do something that would have been difficult for me even on a really good day and, when it didn’t work, I wasn’t able to get the time and space I needed for my strategies to kick in. On a different day, it might have been fine. If no-one had spoken to me, it would have been fine.

So, what could I have done differently? And, more importantly, what could I do differently next time? To draw on today’s experiences so I don’t put myself in that position again.

I could have realised that a week and a half after a suicide attempt wasn’t the time to try pushing my boundaries, however much I may think I’ve recovered. I’m still more emotionally fragile than I’m prepared to admit.

I could have anticipated that a single person on a 4-person table wasn’t going to stay undisturbed for long, and come up with a simple script in response to the obvious question.

I could have bought sandwiches rather than a hot meal and eaten outside (actually, I couldn’t today – I did consider that at the time, but there wasn’t anything that worked with my food issues. But in the future there might be.)

That’s all great for next time. For now, I’m just trying not to be too hard on myself.

I’m not succeeding very well.

More everyday challenges

I haven’t written about the day-to-day challenges of living with autism for a while. The stuff that seems as though it should be so easy, but isn’t. So here are just two of the minor challenges I’ve faced over the past week.

Being challenged on a (possible) social faux-pas

OK, so I’m not sure there was any way I could have got this one right!

But the everyday challenge here is not so much whether I made the right decision, socially speaking, but how to handle being challenged on a perceived social mistake.

And I’m afraid this one concerns toilets. Sorry. I’ll try not to lower the tone too much.

Went to a concert on Saturday evening. And the venue has the most ridiculous public bathroom arrangement – two completely separate entrances to the same set of facilities. These entrances are off two completely separate corridors, which are accessed directly from the street.

Dome

So I went in one entrance, saw there was a spare cubicle near to the door I entered and, well, went to use it. As one does. Only to be challenged by a woman pointing out there was a queue. At the other door. Which I couldn’t have seen from the entrance I used – and I hadn’t actually realised that there was another entrance.

And I just froze. I had no idea how to respond. Too much information to process.

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Someone intervened. Pointed out that there were two entrances and told me to just go ahead. Another example of the kindness of strangers.

Public transport

Getting a busy train from Three Bridges to Horsham. Already stressed because of two separate platform changes and the train being a bit late.

Train arrives. There are no seats. I wonder what to do and am pushed out of the way by people who want to get their cases loaded on to the train. They take up all the safe places to stand with their cases. I can’t get to something to stand against and I can’t bear to stand, unprotected, in the train aisle.

I need to get off the train.

But the doors are closed and locked.

I look around for somewhere I can stand and cope with the journey. I’m getting more upset now. Less able to think.

One of the women with the cases speaks to me. I can’t understand or process what she’s saying.

I manage to run to the next carriage and find a corner to lean into.

I hope no-one tells the train guard. I can’t talk to anyone at the moment. I check my bag for my alert card. At least I have some way of explaining.

I have a safe place to stand and a plan.

I start to calm down.

Some thoughts on World Autism Awareness Day

I wasn’t planning on writing anything today. But, as I haven’t been able to avoid the topic of autism anywhere on Twitter or online, I thought I’d add my views on this.

Awareness of conditions and how they affect people is never a bad thing, I suppose. But those of us living with autism certainly don’t need to be made aware – it affects everything we do.

Sometimes all I want is to be able to pretend I’m ‘normal’ – whatever that is!

So the focus on the condition – and the condition is everywhere at the moment – is spectacularly unhelpful.

And most of the awareness raising seems to be about either children or young adults with the condition. Or the problems with delays to diagnosis.

But children and young adults with autism become older adults with autism. And there isn’t that much out there about us; those of us who have managed to live, undetected, amongst the rest of the world for years. Those of us who had already built a life pre-diagnosis; already found some ways to cope.

For me, getting my diagnosis was both a relief and a curse.

A relief because I no longer have to pretend that the – very real – differences I have don’t exist.

A curse because people now tend to see the condition, rather than the person. They put me into a box labelled ‘autistic’ and can’t seem to hear me screaming to get out.

An awareness day isn’t going to help with that.

And I’m one of the lucky ones in terms of the support I can get. Many adults on the spectrum don’t have that. But even with that support, it’s sometimes difficult to cope.

I can cope with being autistic.

I can cope with what that brings: the sensory difficulties, anxiety and social challenges.

I can’t cope with being put into a box; with the assumption that because I’m autistic my views don’t matter; that other people know what’s best for me.

So, as it’s World Autism Awareness Day, here’s what I’d personally like people to know about me as a person with autism:

I am a real and unique person, with my own thoughts, opinions and feelings. Autism is a part of me; it is not who I am. I have a mind of my own. Sometimes I can be a pain in the arse. Sometimes I can be surprisingly kind. I have my own quirks and difficulties, the same as you do. No person with autism is the same as another – so don’t assume that, because something is right for someone else, it will be right for me. And – most importantly – please remember that I am a human being. Just like you. No better, no worse. Different in some ways. Similar in others.

I wish more people understood the ‘person’ bit in ‘person with autism’. Maybe that’s something for next year’s awareness-raising day…

Stop the world I want to get off

Warning: another dark post

The title of this post wasn’t a very good musical. Although it did have one good song:

But I digress.

I didn’t realise when I started this process that it would start something in motion. And I need everything to stop. I need to regroup. I need to figure out what is best for me.

But I’m not being given the chance to do that.

My exit plan didn’t work yesterday. And I can’t figure out how to make it work with my sensory issues.

So now I need to work out what to do next. I don’t have a plan B. I didn’t think I’d need one.

All the advice says to talk to a friend.

It doesn’t say what to do if you don’t have one.

I don’t want to be alone tonight. But – even if I could use the phone (which I can’t, other than in a few very limited circumstances) – there is no-one who would answer; no-one who would come.

That’s the worst part of how autism affects me. Many people with my condition may not mind that they can’t make real life social connections easily. I do. I need them. I need people. But I am branded; marked; isolated.

And the world won’t stop. And I am so tired.

Falling back into the void

Warning: this is a very dark post

It should have been a good day today. All the right elements were there.

But I’m still exhausted at the end. Still struggling.

And I’m left wondering whether this is it now; whether this is all I have to look forward to; whether ‘OK’ is going to be as good as it gets.

I can’t accept a permanent ‘OK’ as a basis for a life.

There was a point at which I could have taken a different path; one that wouldn’t have led me here; that wouldn’t have led me to this diagnosis and its implications. I wish I could go back in time and take that path. But unfortunately I can’t.

So my options seem to have shrunk to two:

  1. I need to change something, to move from ‘OK’ to ‘better than OK’ at least some of the time
  2. I need to stop taking up everyone’s time and resources and end my life

I don’t know which is the best option. I can’t think what I can change – on paper, everything should be going well (yes, I have done a pros and cons list). And when I model the changes that are possible, the outcomes seem to be worse with the changes than without.

I think I have a plan that would work if I choose option 2. And in many ways, that seems the more sensible option.

I’m not sure I’m ready to give up yet. But I worry that by sticking around, I’m just being selfish, or scared. That I’m not doing what’s best for everyone else – or for me.

I need to talk this through with someone. But I’m not sure who I can trust any more. I’m not sure there’s anyone who would actually care. People seem to have their own agendas. And I’m not capable of figuring those agendas out at the moment.

I wonder if I’m using false logic, or if logical conclusions can be wrong. But if they are, I wonder where that leaves me as logic seems to be all I have to go on at the moment. I certainly can’t trust my emotions.

I need to think this through more. But I don’t anticipate a different conclusion.

It won’t end tonight. I don’t have everything I need, for one thing.

But I don’t know how much strength I have left.

I don’t know how long I can go on like this.

Small victories: the Easter edition

I was a bit afraid that my parents coming down for Easter was going to be a complete disaster. Things have been even more strained over the last few months than they are usually. And some of the more effective strategies that I use to manage my condition on a day-to-day basis don’t sit comfortably with how they choose to view and interact with the world.

At least they decided that staying in a hotel was preferable to staying with me (there are multiple advantages to filling up my spare bedroom with musical instruments). Plus they are clearly trying to accept this new reality. They’re just not very good at it. Maybe that will change over time.

And there were a couple of small victories. Which I want to focus on today, as in the rest of my life I’m feeling utterly lost and overwhelmed. But that’s all too hard to write about at the moment.

Back to the positives, anyway:

Going out to eat

This is something that causes great difficulty for me, and I think that’s always likely to be the case now.

I have far more issues with food than most people would suspect. There are only certain foods and textures that are ‘safe’, and I can’t tolerate any cross-contamination. I have various ways of getting around this but it means that often eating out isn’t a pleasant experience for me; it tends to be a test of endurance rather than enjoyment.

And this weekend we’ve been out for two meals. One of which was in probably the noisiest restaurant in Brighton. Which, with my sensitivity to noise, was never going to be a great success. Particularly when sitting with a very slow eater.

But even in that situation, my strategies seemed to work. I didn’t have a particularly good time at either meal. But it was (just about) tolerable. So I think that counts as a small victory.

Having unsafe people in my safe space

My home is my safe space. There are very few people who I’m comfortable with visiting me here for any length of time and unfortunately my parents aren’t included on that list. But I can’t stop them coming here without cutting contact completely.

(I actively like people I’m comfortable with coming over. I’d actually like to do more of that; it’s one of the things I really miss about having moved away from one of my ‘safe people’. But no-one local seems to want to visit 😦 )

So the victory here is that I managed to tolerate people I’m not comfortable with being here pretty much constantly for 3 days. Admittedly I’m exhausted now, and had a fairly major meltdown when they left, but it didn’t happen when they were here and I didn’t end up kicking them out.

I really don’t like having to use my strategies in my own home.

But it’s good to know that, if I have to, they work.

Clipping my wings

Something that I think surprises people about me is that I absolutely love travelling. I rarely, if ever, go to the same places twice. It’s a big part of who I am.

Travelling gives me time to think; to experience different sights and different cultures; to engage with the world in a different way.

And there’s probably a part of me that likes the fact that I am different because I am a stranger, rather than because I am strange.

I have visited 31 countries across 5 continents. But there is still so much of the world to see. And I’m not ready to stop travelling yet.

But I may have to.

For the most prosaic of reasons: travel insurance.

Because I was trying to get insurance today for a trip I’ve just booked. I’m used to declaring my pre-existing conditions – I’ve had to do that since I was 23. And I was resigned to the fact that it would cost slightly more now I’ve been diagnosed with yet another (physical) condition.

That’s all fine.

What I wasn’t expecting was for the quoted premium from the insurance company I’ve been using for years to increase from £14 to £40 when I added Asperger’s Syndrome to the list. The increase was simply because I’ll be travelling on my own. If I was travelling with someone I knew, there wouldn’t have been any increase in cost.

The stupid thing is that I’m much less likely to have autism-related difficulties when I’m travelling on my own than when I’m travelling with others. Admittedly that’s because when I’m not travelling solo then I tend to be travelling with my parents, which increases my anxiety levels somewhat. But they don’t ask sensible questions like ‘will you be travelling with people who stress you out’. They just assume that autism + solo travelling = higher risk.

And I’m only going to the Isle of Man! Hate to think what the premium would be if I was going further afield.

It’s not a major problem this time. I’ve shopped around and managed to find a (much) cheaper insurance policy for this trip. But I hate that I’m going to have to factor this into any future travel plans, when I am no more of a risk than I was a year ago (probably less of a risk, when I think about where I was psychologically this time last year).

It’s just one more unexpected thing to deal with. It won’t clip my wings permanently – I won’t let it. But it makes it more difficult for me to fly.

And there are still so many blank spaces on the map left to fill…

travel

Alarmed by an alarm

I knew this would happen at some point. But it doesn’t make it any easier, or any less humiliating.

A fire alarm evacuation was probably never going to be an ideal situation for me when sound is one of the major triggers for my sensory issues. I’d hoped it was going to be OK, though, at least until I got out and could try to find somewhere as quiet and private as possible.

Nope.

Full blown sensory overload. In full view of the entire office.

This is not something I ever wanted. It is not something I find easy to accept. But it’s also not something that I have any real control over. So I’m trying to be kind to myself about the whole situation. I’m not succeeding very well…

And it all takes so much out of me.

To function at any sort of level during a sensory overload is difficult. Every instinct I have; every fibre of my being is telling me to get away. Telling me to drop to the floor and curl up in a ball, protecting myself. To resist that impulse takes almost all the strength I have. I use the rest of my strength to just put one foot in front of the other.

It doesn’t leave me any strength, or any processing ability, to:

  • speak
  • see
  • understand what people are saying
  • control my behaviour

I’ve been trying to think of an analogy to use, to explain how it feels.

Imagine you accidentally touch a very hot piece of metal. Not hot enough to burn or cause any permanent damage, but hot enough to be extremely painful or uncomfortable. Your instinct would be to move your hand away as quickly as possible.

Now imagine that you are being forced to hold the palm of your hand against that metal. Imagine how much energy; how much mental strength that would take.

Imagine how you would feel afterwards.

That’s probably how I’m feeling tonight. Plus an extra dose of feeling stupid, because I still feel as though I shouldn’t react like this; that I should be able to control my reactions to what is, after all, just a very loud bell.

Perhaps I’m not as close to accepting this condition as I thought I was.

The kindness of strangers

Yesterday was not a particularly good day. I’m getting increasingly unable to cope with changes to my routine – I suspect it’s because I’m also at the limit of what I can mentally cope with, considering everything else that’s going on in my head at the moment. So it doesn’t take much to push me over the edge.

And I’ve never been good with buses. I don’t like them. The physical sensations; the noise; the crowd of people waiting to get on – I can’t deal with all of that. So when there’s a rail replacement bus, that’s a bit of a problem. Usually I try to avoid travelling or just drive when I know that’s going to be the case. But yesterday I had an appointment in Brighton that I didn’t want to cancel and I don’t know where to find parking in Brighton, or – more to the point – where there is likely to be a space on a Saturday morning. So the bus was really the only option.

It was all OK, transport-wise at least, until it came to the time to get the bus back home. And it was late – five other buses turned up first, plus there was no information. There was also a large queue building, and I’m not good with queues when I’m on my own – I need someone that I’m comfortable around to stand with me and act as a barrier to the mass of people.

Eventually it all got too much and I had to step out of the queue and try to find someone to tell me what was going on. But unfortunately the person I found wasn’t particularly helpful and that just raised my anxiety levels even further. I was almost completely overwhelmed, barely able to speak and started stimming fairly obviously, without really realising what I was doing.

And that’s where the kindness of strangers comes in. Because – to my surprise – someone did try to help me. She got me to stay with her and told me I was safe. She made sure I got on the bus when it eventually turned up. She didn’t have to do that, and I am grateful.

But it made me think.

If this happens again – when this happens again – can I rely on a stranger being a decent person? I can deal with being ignored, but what if someone I think is trying to help is actually dangerous? Because when I am in that state, I can’t tell whether someone is a threat to me or not.

That’s a frightening thought. Because although I honestly believe that most people are decent, I’m also aware that not everyone is as kind as the lady yesterday.

I need to think about this more. I don’t want to put myself at risk. But I don’t want to lose my independence either, or be scared to go out in case I get overwhelmed and become vulnerable.

I don’t have any answers at the moment.

Anxiety: a user guide

I’ve been really struggling with anxiety this week. I haven’t been able to settle myself down most of the week. And I haven’t felt comfortable asking for the help I’ve needed most.

This is anxiety. It’s with me quite a lot of the time, because living with autism is stressful.

anxiety

Each day I am Sisyphus – pushing my burden up a hill for all eternity. And as I push it, it gathers snow, getting more difficult to push.

Breathing and visualisation exercises help to melt the snow; to make my task manageable again.

And most of the time I can get to the top of the mountain. I can push anxiety back down the slopes at the end of the day and watch it fall.

Sometimes I can’t. Sometimes my task is too much.

People can help me lighten my load. They can help me push my burden or help remove some of the snow, so I can continue up the mountain on my own.

But if there is too much snow, if my burden becomes too heavy, it can knock me down the mountain. I know when this is coming because there is a physical sensation that builds up within me. It’s difficult to describe exactly, but it’s a bit like really bad pins and needles across my shoulders and in my chest. It’s similar to the electric spiders I get when I’m in sensory overload but much worse – absolutely unbearable.

And if it knocks me down, and pins me to the ground, I need someone to dig me out and offer tea and sympathy. Someone to talk random rubbish with once I’m over the worst but until I feel ready to head back up the mountain.

If there is no-one then I will struggle – unsuccessfully and to the point of exhaustion – to free myself. When the physical sensations become too much, I will try ever more extreme solutions to make them go away. Eventually all I can do is sleep and hope the snow melts overnight.

Then the next day it all starts again.

If the snow hasn’t melted overnight, that makes the next day even harder. Because my burden is heavier before I even start. It makes it even more likely that I will fall.

I’ve fallen every day for the last two months.

And I am absolutely exhausted now.

Behind the mask

When you’re living with undiagnosed autism, you learn to put on a mask most of the time. It’s a survival tactic; literally, sometimes. The consequences of the mask slipping are too much to bear. You are ostracised; humiliated; shamed.

So I learnt the ‘right’ words to say; the ‘right’ noises to make. I learnt to agree to things and with things, even when that wasn’t in my best interests. I observed and mirrored behaviours of other people and turned them into (almost) my own. Unfortunately, I didn’t always choose the right people to observe and mirror, but that’s another story.

And in doing this, I lost sight of who the person behind the mask actually is. Who I actually am.

It’s been just over a year since the mask finally cracked, and almost a year since it broke entirely. Almost a year since the world that I knew, that I was comfortable in, came crashing down around me.

And if that sounds dramatic, well, that’s because it was.

It was probably the most horrific time of my life. I didn’t know what was happening to me. I couldn’t think; couldn’t breathe; couldn’t stop crying. It didn’t feel as though it was ever going to be possible to resume a normal life.

Then I got my diagnosis. And it quickly became clear that what I thought of as my normal life had gone for good.

I’ve had to work out who I actually am, now I can’t simply hide behind the mask that protected me from the world for 36 years. I’ve had to try different strategies – not to hide, not to pretend any more, but to cope in a world where I increasingly don’t belong and don’t fit in. I’ve had to – very quickly – not only accept but develop an in-depth understanding of a condition that a year ago I knew next to nothing about and that some days I would give anything not to have. I’ve had to learn how to be my own advocate, and how to accept help.

I’ve also had to fight against being put in a box labelled ‘autistic’. I’m still fighting, sometimes, to retain my autonomy as an individual. It remains hard to explain to people that I have this condition and that’s why my behaviour may sometimes seem strange. And it can be absolutely heartbreaking to hear the change in their voices when they find out – the well-meaning condescension; the sudden switch to talking to me as though I am a small child – or, even worse, talking about me and assuming I have nothing of value to contribute. Nothing could have prepared me for that.

I still don’t know who the person behind the mask is, really. I don’t think I’m a good person, or a strong person, or particularly clever or funny. I try to be kind, but suspect I don’t usually manage. I don’t think people like me much. I can’t really blame them.

Now, what I need is some stability. Somewhere to plant my feet. Some way to get through the next year quietly and without further damage; somewhere I can heal in peace. Some space where I can figure out what I do next, rather than just having to fight and react to what life throws at me.

I don’t know whether I’m going to get that. I do know that, even if I don’t, my only option is to keep on going, however difficult I find things at times.

I’m so tired now. I need to rest, mentally and emotionally. I need sympathy and kindness, too, and I’m not sure I can provide that myself.

But I have some sort of resilience, at least. Somehow I’ve got through the last year, when sometimes I didn’t think I would. When I couldn’t see a way forward. When all I wanted was to sleep and not wake up again as it was all too hard, too painful to deal with. At some point I hope it will get easier. And I’m still stubborn enough not to just give in.

ASD: a (very) personal guide

Autism is a spectrum condition and affects everyone on the spectrum in different ways. This post is about where I am on the spectrum. Most of this I’ve posted about before – and will continue to do so – but I thought it would be useful to put it all in one place somewhere, as well as trying to be factual rather than emotional about the whole thing (just for once).

The three main areas of difficulty for people on the autism spectrum

Everyone on the autism spectrum has problems to some extent with social communication, social interaction and social imagination (they’re sometimes called the triad of impairments, although I personally find that term too negative). Here’s how they affect me:

Social communication

I can’t read facial expressions. I can see, for instance, that someone is smiling but I can’t interpret what that means – are they happy, encouraging, sympathetic, forcing a smile, aggressive… I simply can’t tell. I also don’t read body language beyond very basic gestures, or if someone has very obvious ‘tells’ (but I have to know the person quite well before I can pick that up). I’m also oversensitive to tone of voice.

Unlike many people on the spectrum, I don’t have particular issues with small talk. And I don’t tend to talk about my obsessions too much (I don’t think I do, anyway!). However, because I don’t read non-verbal communication I can struggle to know when someone wants to talk and when they don’t.

I can be literal in what I say and understand, particularly when I’m anxious. I don’t always understand new metaphors or jokes before they’re explained to me (once they’re explained, it’s normally fine). But I’m good with sarcasm and like to use metaphors and other non-literal language where possible.

I think in pictures rather than words and can get frustrated when I can’t think of the right word, particularly when I’m trying to express how I’m feeling.

Social interaction

I like people and being around people. In fact, I would prefer to be around people than on my own (as long as I’m comfortable with the people in question).

I have difficulties in moving relationships / social communication on beyond the level of small talk. I can’t work out when it’s appropriate to move on to more personal topics. To get around this, I tend to mirror what other people do, which makes me very reliant on others to lead the relationship.

I understand social rules relatively well. I could almost write an entire book based on my observation of people and how they should behave in given circumstances. The problem is that people behave inconsistently and unpredictably, and don’t always abide by the unwritten rules themselves. This makes me anxious. But in most circumstances, I’m able to stick to ‘normal’ social rules. However, when I’m in a high state of anxiety or in sensory overload all bets are off. It’s not that I don’t know what the rules are – I just can’t always stick to them.

Social imagination

This isn’t about whether someone can be imaginative or creative. Actually, I’m quite good at both of these. It’s more about being able to predict what’s going to happen and cope with change.

I use observation and logic to predict how people will react in certain circumstances. This either works really well or really badly – unfortunately there’s no way of telling which it’s going to be in any given circumstance!

I’m almost unable to cope with uncertainty. I can usually cope with change, as long as I have time to process the change and understand the implications, but uncertainty is a whole different ball game.

I am aware that other people have different thoughts, feeling and actions to me, but I can’t understand what that is like – I can only understand this in relation to my own thoughts, feelings and actions. This doesn’t mean that I’m not able to empathise, but I may be empathising based on how I would react to a situation – or people may need to tell me what they are feeling. But I’m a good listener most of the time and think I can normally give constructive advice in a reasonably sensitive way.

I’m also not good in unfamiliar situations – I need to know what the rules are and what ‘script’ I need to use before I can cope well.

When I’m in emotional or sensory overload, I can lose any sense of danger.

I can be flexible about routines, but I don’t like things changing at the last minute. If things need to change, I need to know as soon as possible and an alternative put in place (e.g. telling me that a meeting won’t happen tomorrow but will happen on Thursday instead).

Other related issues

There are other issues than the three outlined above that are common for people on the autism spectrum. Some of the ones that affect me are:

Sensory issues

I can be quite badly affected by sensory issues – sound and light are the biggest problems, but I have differences with most senses (I’ve taken the description of the senses from the National Autistic Society website):

Sight

  • I sometimes find bright lights difficult to bear. I prefer natural light or lights to be dimmed where possible.
  • I find it difficult to concentrate if there are a lot of pictures or graphics in a room
Sound
  • I find it difficult to distinguish between background and foreground noise
  • I can’t process what people are saying when more than one person speaks at once
  • Loud sounds / harsh tones of voice can cause physical pain
  • I find percussive sounds very difficult to cope with

Touch

  • I like being ‘weighed down’ by heavy objects
  • I need to have a physical connection with something in order to feel safe when I am anxious (e.g. I like to sit in a corner / against a wall)
  • I find most physical contact with people calming / comforting – although I don’t like light touch
Taste
  • I am oversensitive to certain textures – particularly creamy textures
  • I don’t like very strong flavoured animal products
  • If I don’t like something I am physically unable to eat it

Smell

  • Not a particular issue most of the time, but I am sensitive to the smell of cigarette smoke and strong perfume / body spray

Balance (vestibular)

  • Not a particular issue on a day-to-day basis
  • Mainly manifests itself in a love of rocking chairs and rollercoasters

Body awareness (proprioception)

  • I walk into things a lot and am generally clumsy

 

Anxiety

I find it difficult / impossible to control my behaviour when I become too anxious. This can, unless dealt with at an early enough stage, lead to meltdowns or shutdowns. These are not pleasant for me or anyone around me at the time and so best avoided where possible,

I have specific triggers for anxiety most of the time – but the thing that ostensibly sets it off may well not be the actual issue, so it is helpful if someone can assist me to work through what is actually the root cause.

Face recognition

I’m extremely bad at recognising people. I can’t recognise faces – instead, I memorise characteristics (particularly hairstyles and height) or, for people I see regularly, I have mental images of them unrelated to what they actually look like. I’m also not good at identifying people in real life if I’ve only seen them in a photograph.

This can mean that I don’t acknowledge people if I see them in unfamiliar surroundings. If I don’t acknowledge people, it normally means that I haven’t recognised them. So it’s helpful if people can speak to me first and let me know who they are if I seem to be confused.

Unexpected shutdown

I should have known it was all going too well.

I think I’ve been underestimating quite how much this whole process is currently taking out of me. I’m still managing to be assertive – just about. My strategies are still holding. I’m still really tearful, but I know the reasons behind that and at least I’m managing to hide it from people most of the time (I think, anyway).

But then tonight I got home and it all fell apart.

I’m starting to notice a pattern of when I explode (meltdown) and when I implode (shutdown), though.

An explosion normally happens when there is something external causing stress. When I need to get away and can’t. When I need to communicate something but can’t find the words. When people are putting pressure on me and I don’t know how to respond.

An implosion can happen after an explosion, but that’s rare (worse, and lasts longer, but rare).

Implosions normally happen after periods of prolonged internal stress. When I’ve been trying to deal with things too much on my own. When I’ve been thinking too much. When there have been low-level sensory issues that have just built up until I can’t take any more and I just shut down.

Explosions and implosions feel different, too. With an explosion, it’s as though there’s a ball of fire bubbling inside me and it has to find its way out somehow or I will burn. With an implosion, it’s more of a sense of absolute numbness. I can’t move, can’t speak, can’t think. I feel cold. I may stare into space, or close my eyes and appear as though I’m sleeping (although I’m not).

Explosions are emotional, dramatic – but they tend to be over relatively quickly. I burn myself out. The emotional and physical energy they take means that explosions can’t last indefinitely. And sometimes, in some ways, they can be cathartic.

Implosions are the opposite. I disappear inside myself and there may be no sign of visible emotion (or if there is, it’s gentle – tears simply running down my face rather than the violent sobbing that seems to be a hallmark of my explosions). They also last longer – the longest implosion I’ve had lasted a fortnight, off and on. And they are never cathartic. I’m always left with a deeper sense of sadness and pain afterwards, a feeling that I am completely worthless; that I have lost something that I can’t get back.

Today it was, at least, relatively minor.

I’m just hoping there isn’t another one tomorrow.

Finding my voice

The more I read about, hear about and meet other people on the autistic spectrum, the more I realise that I am never going to be fully part of that community.

Autism is a key part of who I am. Because of it, I have a fundamentally different way of thinking from most people. My brain makes different connections. This, plus my experiences of finding ways to navigate through the non-autistic world without knowing quite why I was different, has played a major part in shaping who I am as a person. But it doesn’t define me.

I have no desire to connect at a personal level with other people simply because we share a condition, although I’m happy to share strategies. I feel no real relief in finding ‘others like me’ (perhaps because I haven’t managed to find anyone whose condition manifests itself in quite the same way – I’m sure they must be out there; I’m not egotistical enough to believe I am unique). I do not want my condition to be used as an excuse, with no expectation that I can learn and grow. On the other hand, I don’t want to put on an act all the time in order to conform with the social norms of the neurotypical world where that really isn’t the right thing for me.

This appears to be a fundamentally different outlook to most of the people who ‘go public’ about their autism.

And it’s these people who get the attention – who have started to ‘define’ what being autistic is.

Their definition is not mine.

They do not speak for me.

So I’ve had to learn to speak for myself; to find my own voice.

It’s a hard balance to strike. One of the most difficult things about being diagnosed was almost instantly feeling that I had lost my autonomy and my right to privacy. People suddenly started telling me what to do and how to act. Assuming that either I have no social skills (actually, I’ve developed an excellent understanding of social engagement, even though this isn’t instinctive to me – and, in fact, sometimes I pick up more about the nuances of social situations than people without my condition) and that where there is conflict I am automatically to blame (again, not true). In order to defend myself, I’ve had to share things that – under normal conditions – I would not choose to disclose.

And in finding my voice, I’ve also needed to draw on mental reserves that I didn’t know existed. I’ve become more comfortable in my own skin; better attuned to my own needs and able to be assertive about what works for me and what doesn’t.

Although it feels like an ongoing battle at times. Not so much when people get to know me as an individual. But the assumptions that people make from what they’ve heard, or seen, or read in the news. The assumption that one person’s experience must be true – or at least reflective – of all people with high functioning autism. This is at least understandable (albeit unhelpful) when the person making the assumption is on the autism spectrum themselves. Something we all tend to share is a problem with putting ourselves in other people’s shoes; assuming what is true for us must also be true for others.

It’s still a false assumption.

I can’t speak for other autistic people any more than they can speak for me.

I only know how I feel; what I need in order to function. I can’t understand why other people need different things but I know, intellectually, that they do.

And some of the needs – many of the needs – I wouldn’t have if I wasn’t autistic. And that’s been difficult for me to accept. But some of my needs aren’t really to do with autism at all. They’re simply needs I have as a person; as Julie. Specific to me as an individual, in the same way as everyone else – whether autistic or not – has their own needs that should be considered.

Yet still the assumptions continue. Still people try and talk for me.

And if I have learnt one thing over the last year, it’s this: I don’t need or want someone else to talk for me. I don’t need or want someone to try and tell me, or others, what I need and how – as a person with autism – should feel and act. (Helpful suggestions are always welcome, but I am best placed to know what works for me.)  I am perfectly capable of speaking for myself; in fact, I am my own best advocate.

I have found my voice. I’m no longer afraid to use it.

Time will tell whether that’s a good or bad thing. For now – world, watch out!