Autistic frustration

One of the many assumptions I’ve had people make about me is that I must be prone to anger outbursts. I don’t remember anyone saying it to my face, but I do remember Mum telling me about people who have thought that. Needless to say, this isn’t the case – Mum has always said if I was any less aggressive I’d go into a coma – but I realise it’s true for many people with Asperger’s and other forms of autism.

Outbursts are often listed as a symptom of autism, which, at first glance, makes sense. Plenty of children and adults experience this, whether due to frustration, sensory overload, stress, and many other things. But then I thought about some of the more basic signs and symptoms of autism in comparison, and I came to the conclusion that anger outbursts aren’t a direct symptom of autism. They’re an expression of built up frustration.

It sounds like the line between the two is very blurry. Put it like this: symptoms of autism are directly caused by differences in the brain. For example: overall high intelligence, but trouble reading faces and body language. Misinterpreting things people say. Different reactions to touch, and other sensory information. Fixation on topics of interest. I’ve reflected, rambled, and ranted about them often enough.

As I write this, I’m thinking about how it drives me mad when people see autism as a bad thing…while feeling fed up with it and wishing it wasn’t an issue. But in a way, that proves my point: autism doesn’t cause frustration. Having autism in a world full of – and made for – people who don’t does.

Autistic frustration is a range of issues in its own right. It comes from spending half your life having to explain yourself, and the other half needing people to explain themselves. It comes from having to work twice as hard just to keep up in social and academic settings made for neurotypical people. Having to grit your teeth when people talk down to you, or make assumptions about you, because you know they mean well, and you don’t want to hurt their feelings. Wanting to connect with your peers but lacking the know how. Then, just to top it all, not having the social skills to communicate all this.

Which, thinking about it, is partly why I blog: while my face-to-face people skills have improved, I still communicate more naturally through writing. It may feel like a chore at times, but it’s still what I do. Besides, it’s important to help people understand. I don’t expect miracles from other people, myself, or my writing. Accepting that sometimes things are different for me is what helps me be less self conscious. And if you can overcome self-consciousness, even if only a little way, you will find it easier to see beyond the negatives.

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Food, glorious food

My love for food first became apparent the day I was born. Having started things off while my mum was having dinner the night before, I made my debut at lunchtime, a fact that she – and my stepdad, upon learning about it – will not let me forget. Thus my reputation for being a big eater began.

Despite being an unemployed single parent for a while, my mum did a good job of getting healthy food down our throats, mainly in the form of lentils, wholegrains, and at least one fruit or vegetable per meal. My school, on the other hand, left a lot to be desired. Being on benefits meant I was entitled to free school lunches, comprising stale, white sandwiches, a flapjack, a vividly purple or orange drink, and fruit so shrivelled, I decided I would rather save it for Mum as a “present”. The sandwiches were usually dry cheese; I looked forward to the rare occasions they had chocolate spread, not just because they were sweet, but because they were moist!

I don’t know how long this lasted, but apparently when it stopped, the frequency with which I caught colds and ear infections dropped significantly.

Being half British/half Taiwanese definitely manifests itself in my sense of taste. I’ve inherited my biological father’s love of spicy foods; I add garlic to every savoury dish, and will happily eat any chilis that come with takeaway curries or pizza. I love strong tasting, vegetable based recipes, and have never grown to love roasts, pies, crumbles, and other plain, stodgy British things. Yet unlike many (fully) Chinese/Taiwanese people, I love sweet things. Cake, chocolate, and posh ice cream are a sure-fire way to my heart.

As a teenager, I once made a New Year’s Resolution to learn how to cook. You could argue that it started with my first cooking lesson at school, attempting to make scone-based pizza. You could say the lesson was doomed when I tried cracking an egg by tapping it with a spoon. Or when I melted a plastic spoon when making the sauce. It’s better to focus on the positives, though, and once I belatedly removed the pizza from the oven I hadn’t set high enough, it tasted pretty good.

With the help of the various recipe books I’ve accumulated over the years, I think I’ve come a long way since then. I often make dinner, and love making things for special occasions – I’ve been decorating the Christmas cake since childhood, and have more recently taken to making roast tomato and garlic soup for our Christmas day starter. I’ve never fancied working in the culinary industry though. I’m notoriously bad at sharing the kitchen when cooking!

Meanwhile, one of my next culinary endeavours over the coming fortnight is to make fudge for not one, but three good causes: my job’s Halloween bake sale, a visiting gift for my stepbrother and sister in law, and to line my parents’ stomachs. I’ve made many things before, but fudge isn’t one of them. So this should be fun! If no kitchen utensils will be harmed in the process.

 

Last year’s Christmas cake

 

Cupcakes

 

My Mothers’ Day lasagne

Boundaries – a fine line

From childhood until university, I used to think that the best way to win and maintain friendships was to let the other person have their own way all the time. I mean, that’s what everyone says about friends; it’s important to put the other person first. As a teenager – with Asperger’s, at that – I was never good at interpreting social rules. Though really, how far wrong can you go with this one?

It started harmlessly enough. If other children had forgotten/broken a pencil, they soon knew they could ask me for one. If we were queueing for anything exciting, I would willingly let anyone who asked go in front of me. And if I had any particularly special treats in my lunch…well, you get the idea.

I think my parents realised there was a problem when I began losing some of my stationery to people who needed it more. But who was I to complain? I was trying to be a good friend. I didn’t always like it, but I wanted to make people happy, and thanks to autism, that was the only way I knew how. My first rule of thumb was to put other people first; my second, to avoid offending anyone. And saying “no” to a reasonable request was, in my mind, the epitome of offense. Especially when people took offense if I so much as thought about it. A problem which I could never get to go away.

It wasn’t until I started trying to apply boundaries that I learned that not having them makes it harder to recognise and respect other people’s boundaries. At first glance this makes no sense – the reason many people struggle to set them is because they desperately want to please. I’ve had to learn to not be either offended or overcome with guilt when people disagree with me, or criticise me, and instead, simply work out how to change for the better. This doesn’t mean blindly deferring to the other person; sometimes it takes a bit of objective analysis of a situation to see what you could do differently.

Unfortunately, it’s impossible to go through life without offending anyone. Until I left uni, I used to think it was as simple as either keeping the peace at all costs, or showing no respect for other people’s feelings whatsoever, but it’s not that black and white. I couldn’t let go of the mindset that being a good friend meant keeping the peace at all costs, until I realised that setting boundaries isn’t unreasonable. For me, it means:

  • Not being afraid to politely but firmly let someone know if you don’t like the way they treat you
  • Being consistent in the standards you set for how you treat other people and expect to be treated
  • Being able to disagree with someone, while still showing them respect
  • Reminding the other person that their way of seeing things isn’t the only way – while remembering this principle yourself

So, to end on a saying I heard at church once, if you never say no, what is your yes worth?

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.

 

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?