Dear diary…

“Have just had my toughest experience ever: Mum sitting on me, squeezing my blackheads, with Rhian looking on!”

“Sometimes I wish time wouldn’t drag so, especially after the Easter hols…” 

Is this normal writing for a 13 year old?

My journals and I go back a very long way. Even as a kid, I loved the feeling of having a fresh new notebook, which I could decorate as frivolously as I wanted, before complaining to it about my life. And let’s face it, when you’re a teenager – and an autistic one trying not to be eaten alive by non-autistic ones, at that – there is a lot to complain about.

Actually, my first diary was more of a travel log, three days before I turned 11, just before adolescence became an issue. We were en route to New Zealand, and I was not letting a moment of our upcoming adventure go to waste. Amid jetlag from hell, day trips of a lifetime, and hours of travel by land, sea, and air, I was determined to write down everything we did. I don’t know why I wrote as if I was addressing the rest of my class at school (why the heck would they care how many bedrooms our third motel had?), but that aside, I’m glad I did it.

Since then, my journals have evolved considerably, and have seen me through nearly a decade of teenage angst, followed by my attempts at adulthood. Journaling is my main way of keeping myself writing every few days, and a testament to what a nerd I am is how I feel like I have a different relationship with each one, depending on a number of factors. Like how often I wrote. Or what stage of life I was at. Or how much written self-reflection I did. It makes me feel pretentious, putting it like that, but it’s true.

Through keeping it up, give or take a few slips, I’ve definitely benefitted a lot from journaling. For a start, it helps me remember. I love laughing at my old diaries! It also helps me regulate my thoughts and emotions, making them less overwhelming when I can see them on paper. I’ve written down hard learned life lessons, I’ve made important decisions through brainstorming, I’ve poured out my heart about many a difficult situation, and instantly felt calmer.

Most recently, I’ve come to realise that writing a diary has helped me be more honest with myself, because I can get my thoughts and feeling out without being heard. Or maybe practise getting them out until I’m ready for them to be heard. Sometimes I don’t feel like it, other times I get started and don’t stop for ages. Either way, it feels like a constructive habit, and if it keeps me writing and learning, long may it continue!

My diaries, minus my current one, two pocket notebooks, and a wad of cat shaped post it notes. Starting with my neon travel log, going clockwise, and finishing in the middle.

 

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Being included

My teenage years were quite a lonely time for me. I’m sure I’m not alone in this. I soon got used to sitting in the SEN* room during breaktimes because it was easier than being alone in a crowd of friendship groups. One or two people made the effort to talk to me, and I appreciated it, but mostly I had to put up with other people talking about social events I wasn’t invited to.

If you’re not reading this while listening to some sad violin music, then you should be.

This is one of many struggles for young people on the autistic spectrum. Despite the “unemotional” stereotype, many of us are weighed down by the need for intimacy but difficulty in connecting. Since secondary school, things have improved significantly for me, give or take a few bumps along the way, but when non-verbal language isn’t your forte, sometimes it’s as if people forget you exist.

But while the stereotype that we don’t care about people is usually untrue, it is true that people with Asperger’s can find social events overwhelming. I was reflecting on this recently; I love feeling like I belong, and that people want to spend time with me. Sometimes, however, I get invited to social events where I don’t really know anyone properly, the activity is something I find hard, or I’m already feeling drained. Then if I say no, I inwardly scold myself for being ungrateful when social isolation used to be a real problem for me. If I get left out, I feel lonely. If people try to include me, I shy away in favour of being alone. Right?

The fact is, I always appreciate any attempts to help me feel included, even if I’m not front-and-centre at every social event. A bit like how a person in a wheelchair may want to be as involved as the next person, but might be reluctant to agree to go on a hike. Besides, I’ve been to a fair few events outside of my comfort zone, and actually ended up enjoying them – a few years ago, I wouldn’t be seen dead in a tent, for example! I just like to know that I’ll have at least one close friend I can stick with who understands autism, and opportunities for quiet time.

So if you’re not sure how someone on the spectrum feels about being invited to something, it doesn’t hurt to ask. They may say no, but if they’ve repeatedly felt left out in the past, they may still want to know that they were thought of.

 

*Special Educational Needs

 

To Hester: a lover of hugs and history

Over the past few years, I have been very lucky. I have found better friends than I ever thought I would, and, more recently, have fallen on my feet at the church I now go to. Now, I could probably get through several blog posts by giving a shout out to everyone I’ve met since my uni years, but for now, I’m giving the spotlight to my friend Hester and her family.

I’ll start with a few key points. Firstly, I met Hess and her family through various Navigators* events and activities. I distinctly remember meeting Hester the first time I went to the Navs weekend away in Blackpool, but given that I spent the whole weekend hiding behind the only person I knew, I fully understand if she doesn’t remember this. While I was at uni, her parents took me under their wings, inviting me over, giving me lifts to places, and showing me endless kindness. And Hester herself, despite any emotional upheaval of her own, is one of my go-to friends and text recipients when life has taken a plunge. Panic attack on a trip abroad? My sister getting dangerously ill? She always has a listening ear and words of comfort. And a hug like no one else.

I’m pleased to say, I’m not the only person who appreciates this. Cue a brief introduction to James: fellow student Nav back in the day, medic-in-training, and a generally great guy. When Hess started coming to weekly Navs Bible study evenings, they bonded over a love of history, castles, and other brainy topics. I had my suspicions about how this would end up when I was waiting in town for Hester and she arrived under James’ arm. Last Saturday, my suspicions came true: they got married!

Given that history is her main forte, I was rather pleased with my suggestion that she should wear a suit of armour on the day, and a little disconcerted when she turned up in a wedding dress instead. I stand by my opinion that this is a highly original and creative idea of mine, but actually, it would have made disco dancing awkward, come to think of it.

In all seriousness, I’m honoured to have been so involved. I was invited to her hen party, and felt like a kid again. This may have been from playing games like pass the parcel and Blind Man’s Buff. It may have been from the sheer amount of cake I consumed. Or it may have been me shadowing her mum the whole time, relapsing into my childhood habit of staying close to the grown-ups when I could be mingling with the other children…

Finally, last weekend, I got to play my violin in the church band! Having got back from holiday two days previously, and arranged to stay with different people the night before and after, I felt a bit like I was on tour. I also felt like my playing gave off the (correct) impression that I’d only been around for one rehearsal, and that I didn’t know at least two of the songs. But whatever my playing sounded like, I loved every minute of the day. In conclusion, I am proud to be friends with Hester and James, and have high hopes for their life ahead. To the bride and groom: a big, Hess-style bear hug from me!

At the hen party

Castle cake!

 

 

*A Christian mission organisation which included a student group in Leicester that I was involved in.

Summer goals: expectation versus reality

  1. Expectation: Have a massive clearout, paying particular attention to all the extra tat I acquired during my uni years (no, seriously, it will happen this year). Reality: Keep telling myself that every year.
  2. Expectation: Meet up with *insert friend*. Reality: Have lengthy text conversation with them about the days when one of us is free, but the other isn’t.
  3. Expectation: Get through reading list. Reality: Add more to said list than I cross off.
  4. Expectation: Take up singing lessons again to overcome fear of singing on my own. Reality: Wait until I’m alone in the house. Listen to Memory or The Sound of Music on my iPod. Mumble along too quietly to hear myself properly.
  5. Expectation: Improve at Chinese. Reality: Remind myself again of the difference between the words for “horse” and “mother”. Tell myself that at least I am far from meeting strangers’ assumptions about my mother tongue.
  6. Expectation: Get back into art. Reality: colour in a single object in one of my ten or so adult colouring books. Feel suitably accomplished.
  7. Expectation: Try to practise my violin more often. Reality: Practise once. Make notes on how to improve next time. Feel suitably accomplished. Forget about notes. Repeat process every month or two.
  8. Expectation: Work on my writing. Reality: make minor adjustments to the book plans I made last year. Convince myself that my life’s ambition of becoming an author is just around the corner. Feel suitably accomplished.

I think my heart sank a little bit when I scrutinised my previous journals for summer to-do lists, only to realise that they were nearly the same from year to year. But hey, this summer has already given me more than my share of fun and adventure, namely:

  • Visiting Jennie, and taking a train that had to stop and go back the other way. Getting off in the middle of nowhere and being told that replacement taxis would be arriving shortly. Having to be rescued by Jennie and Jan when the replacement taxi drivers had no memory of being booked.
  • Missing the train home and waiting an hour for the next one.
  • Taking my semi-Asian skin for granted, and accidentally giving it sunburn.
  • Finding out I have astigmatism as well as short sight.
  • Nearly being defeated by the Sainsbury’s self checkout, with the intervention of Sainsbury’s staff who were evidently too good to let me pay for the same item twice.

All riveting stuff. And now, after a draining few weeks, I find myself more in need of a holiday that I have felt in a long time. So until next time, happy summer everyone! Think you can cross off a summer list better than me?

A sudden improvement, and a blogging update

Last post, I was a little bit at the end of my tether. My work was teetering on the rocks, and I was feeling like a bit of a let-down. So I tried to remember my usual coping mechanisms for stress, and to make myself feel more productive, I wrote a slightly cliched blog post about them. Oh and I also prayed. A lot.

In the fortnight since then, my faith in myself and the power of prayer has been restored. Tentatively. Last week, the end of my probation was fast approaching, and was mainly hinging on my speed and accuracy during a certain task. Miraculously, with a target meeting technique I’d thought of but never tried, I did it. Long story short, my boss was pleased with how quickly I’d improved, and has extended my probation period by three months. Woo!

Right now, I’m hoping that things will keep looking up, and that this isn’t just a one off. I can’t help wishing that autistic miscommunication wasn’t an issue, and that I could have passed the first time just like anyone else. But my parents think that people on the autistic spectrum should be entitled to a longer trial, and to be honest, I’m just grateful to have got as far as I have.

I mean, this past fortnight has gone better than I dared hope, and now the pressure is less intense, I can feel the difference physically as well as emotionally. This improvement, hasn’t come without its cost, however, and over the past month or so, I have sometimes had to resort to going in even earlier – meaning getting the bus – at 7.07am, then getting home nearly 12 hours later and revising anything I still haven’t conquered. On the plus side, I have taught myself how to do Excel formulas! VLOOKUP, anyone? On the minus side, I am exhausted.

Which brings me onto a quick word about blogging. When I started my Facebook page (https://www.facebook.com/unwrittengrace/?ref=br_rs), I pledged to write a blog post every week, give or take the occasional break. I started doing it every Sunday. Then recently, I switched to Saturday. Then every other Saturday. Now it’s getting tricky. I’m commuting and working dawn till dusk every weekday and I’m juggling choir, the gym, church and its worship band in between. And now, all my Saturdays are completely booked up until August.

I’m not going to give up my blog unless I give up breathing, but right now, finding a slot for it is about as easy as finding a bus on a bank holiday. If I can stick to the two week regime, I will. Otherwise, I may blog on a free weekday evening. I may blog on a Saturday or a Sunday. I may revert back to my old habit of blogging on some random day every month or so. I’m unlikely to keep it this way in the long term, but for now, so be it.

 

Managing stress

As I have been getting fully immersed into my new job, it has not been without its stresses. On top of new skills to learn and remember, and targets to meet, there is also the added complication of autism and communication. And now the end of my probation is looming. Joy.

But if there’s one thing I’ve learned about facing your struggles under pressure, it’s that you can either be overly humble and self-deprecating, or you can look for ways to improve and press on with your head held high. Chances are, there are people around you who want you to come out ok. And take it from me: letting your mistakes overwhelm you won’t solve anything.

Which is why, when under stress, it helps if I break down whatever I am dealing with into manageable chunks. Like essays at uni. I’d look at the topic I need to discuss, break it down into the main points, divide the word count between them, and voila, my essay had a skeleton. Figuratively speaking. Now I’m applying the same principle to work: look at my email of targets, organise all the notes I’ve made since day one, and highlight the things I haven’t mastered, so I can revise them. Somehow, these things seem less scary when you can see what you’re facing and how to face it.

Besides, in doing that, I feel like I’m setting reasonable goals for myself. It’s just a question of paying attention to your capacity, and, when setting goals, starting small. Often I make a list and highlight the priorities. Sometimes I just try one thing at a time. Either way, it feels both proactive and like I’m taking some of the pressure off. My worst habit, when facing any kind of workload, is to aim to achieve as much as possible, and between not having superpowers and being too stressed to do anything, I’m left feeling like a waste of space.

For now, though, my main coping mechanism is determination. Not from ambition, or a naturally motivated personality; if I relied on sheer character, I would still be in bed. The fact is, these past few weeks have been hard, and I’m scared. Scared of failing, scared of being a disappointment, scared I will lose the desire to prove myself. So while I run on fear-fuelled determination, excuse the decline in the quality and quantity of my writing. And remember: when things get challenging, you might not have control over the events around you, but you do have the power to keep trying.

 

Communication confusion

If someone were to ask me to briefly summarise Asperger’s Syndrome – not that they often do – I would put it like this:

– Difficulty reading faces and body language
– Difficulty interpreting things people say, especially instructions
– Poor physical skills
– Above average IQ
– Detailed long term memory
– Good at learning – and correctly using – spoken language

But in a specific situation where I have misunderstood something and fallen short of expectations, I can’t explain what I’m confused about, or what went wrong. Other people will ask me why I struggled with something that they probably see as blindingly obvious, and so often I’m left feeling stupid because I just can’t explain.

Often it’s the same with smaller, more mundane things. Why do you not join in with the group conversation? Why are you so easily startled? Why do you still need help finding your way there? In response, it would be so easy for me to reply: How do you find so many things to say to all those people? Why aren’t you startled when someone behind you pats you on the shoulder? How can you memorise a route you’ve only taken once while following other people? But these aren’t answers, because – apart from “I’m autistic” – I don’t have any.

In these situations, people asking about Asperger’s is fair enough. The hard part is answering those questions. How do you explain the way you are? It’s like trying to explain what your own accent sounds like! And when people expect you to communicate why you’ve misunderstood someone, the irony is that you have a communication disorder, and can’t explain any better than they can. Because part of being autistic is struggling to see how you come across compared with others.

One of the things I find hardest is unspoken expectations. Despite the autism stereotype, empathy has never been a struggle, and I have even learned to use it to pinpoint people’s emotional needs. But when I’m in a situation where there’s pressure to perform well – practically or socially – and pick up things that haven’t been explained, I’m completely lost without clear guidance on how to manage the situation.

And that’s not to say that AS renders you incapable of communication. We just process things differently, and who’s to say “differently” means “worse” anyway? We take in information in a concrete, logical manner, accompanied with a lot of careful thought, and in a world where most people instinctively know what’s expected when given ambiguous information, we are in a minority. So while we power through that world, and keep honing our non-native neurotypical* language skills, please bear with us!

 

 

*Non-autistic