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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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.

 

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.

 

Ni hao! Where are you from?

The other week, my mother showed me a video on Facebook: What (Not) To Say To An Asian Person. It featured a couple of East Asian women explaining how to avoid making a race-themed social faux pas. Naturally, the comments section was full of words like “special snowflake” and “stop-whining-about-issues-we-have-never-experienced-but-are-judging-you-for-anyway*, ” and “how DO you talk to them?”

Which, to be fair, is an interesting question. The short answer is: if you talk like one respectable human being to another without making assumptions about the other person, then you’re probably getting it right. But I thought I’d break it down further.

For a start, upon seeing someone who may be in a racial minority, I like to assume that they speak English and don’t want to be singled out. Apparently, though, it’s perfectly acceptable to say a random greeting to them in a language that all people who look like them must speak – especially if you have no other reason to talk to them. Or to shout it through the window of your moving car. Ni hao! Konichiwa! Or be downright racist and shout “Great Wall of China!” at them to impress your mates. Right?

Wrong. It’s not simply saying hello. Do you have the same urge to shout a greeting to a completely white stranger? I never know why people do it, but if they want to be funny, clever, or cool, then they’ve got work to do.

And sometimes it is meant to be friendly. But having heard “ni hao” used as a slur – and even combined with catcalling – I just associate it with being made fun of. Besides, how do you know what language someone speaks? A white person, for example, could come from any continent in the world! Don’t get me wrong, if you’re fluent in their language, and they struggle with yours, then great. Otherwise, a simple “hello” or “hi” will suffice.

Interestingly, when my mum lived in Taiwan, she had a lot of passing strangers say “hello” or “good day”. If I ever went back to Taiwan and experienced this, I would be too amused by the irony of being in a reverse situation to usual to be offended.

As for asking where I’m from? Loughborough, England, UK. No, where am I really from? Born in Taiwan with a Taiwanese father, but raised British since age 4. What about my mum? British. Do I talk to, or visit my father? No. My ethnicity is no secret, but honestly, sometimes it’s like being questioned by the Spanish Inquisition! I like to think I just look like a dark haired British person, but the number of times I’ve heard these questions has disproven this. I don’t mind talking about the subject – it’ll come up naturally if you hang around with me long enough anyway – but I can’t help feeling a little self conscious when questioned on the first meeting.

I realise I’m being a bit sensitive. I think having a learning difference has made me fed up of being scrutinised for my differences, and I am working on that.

So there you go. Discussions like this so often lead to people thinking minority groups expect special treatment. If I need special treatment, I’ll swallow my pride and let you know, but apart from that, it’s the opposite. I just want people to get to know me for me, and learn naturally how to treat me based on that.

 

 

*Well maybe not those exact words…

The best you can give

When I play my violin at church, there are days when I pick it up and the music just comes naturally. I can sight read, play by ear, read guitar music, no problem. My debut at a new church worship band at the Maundy Thursday evening service, however, was one of many days in which I misread the music, kept hitting the wrong notes, and couldn’t harmonise to save my life. I was tired and anxious, and although I got a fair few compliments, I still felt unsatisfied with my performance.

At church, as with many areas of life, I’m often in awe of people who bring everyone together effortlessly, or give a flawless talk, or are more musically gifted, or…you get the idea. I have watched several friends take a lead role in a service, or other event, and afterwards, reassured them that they did it so well, and that no-one would have noticed they were struggling. They might struggle with anxiety, they might speak English as a second language, they might think they don’t have the right personality or skills, or their circumstances might have made it hard. The audience, however, are unlikely to be judging them, because whatever they are doing is important.

I tell them this while wishing I was as gifted as them. Often the way, isn’t it, when you forget to retain your own advice. And remembering all that is easier said than done, because we cannot guarantee that we will not get a negative reaction. I’ve made all too many autistic social slip ups that have – at best – resulted in odd looks, if not hostility. But when we have a job to do, and we want to do it properly, we don’t have to let our weaknesses stop us.

We are all the same in that we all have weaknesses. A mix of character flaws, things we’re not good at, or even just our current mindset. Living with Asperger’s, for all its fine qualities, is a daily reminder of that. Literally, at times. You misinterpret people, you melt down, you have poor physical skills. Yet just because we take longer to learn some skills, it doesn’t mean we can’t learn, or that we should shy away from challenging situations. Sometimes we are acutely aware of our struggles, sometimes other people can see them more objectively. Either way, the very essence of doing something for God and the church – and the people in your life – is giving them the best version of you that you can give.

The importance of pets

Throughout the stress, confusion, and complexity that is life, sometimes we have to take a step back and enjoy the simpler things. It could be returning home to a friendly face waiting hopefully for your return. It could be having someone to cuddle when you’re down. Or it could be having someone so desperate to be with you that they force your bedroom door open with brute strength so they can walk all over your sleeping form.

If you’re thinking of a beloved pet, then I’m with you all the way. If not, then what sort of people have you been raised with?

I don’t know about you, but for me, our cats are a solid part of the family. Having recently lost our beloved, cuddly, dopey old Tango, I think this feeling is particularly high at the moment. My budgies, my sister’s hamster, and our grandparents’ dog were a big part of my childhood. Many of my friends and family have animals that they love. So I’m going to try to do justice to the importance of pets.

For a start, I don’t know where I would be without Bouncer, my unofficial Guide Cat for the Autistic. At nearly 14 years of age, he hasn’t retired from calling me until I follow him, leading me into a specific room, then calling again if I don’t follow. I’ve got to hand it to him, without his conscientiousness, I would never be able to find the way to my own room. Then there’s Suri, our resident feline policewoman. When it’s time to feed the cats, the others dare not get too close to our feet lest she repeatedly punch them in the face until they retreat. She has her uses even when off duty; once she settles on your lap, you have a very valid excuse to put off being productive until you can get up again.

Then there’s companionship. True, you can’t share reflections on the human condition, or entertaining life anecdotes. At least, not if you want a two-way conversation. But there are many things about pet company that you can’t beat. Physical affection, for one. If you stroke an animal, or pick it up and hold it close, it can be comforting to both parties. Do that to a person, and it’s just not the same somehow…

More importantly, animals don’t hold you to the same standard as people do. I’ve never worried that animals find my Asperger’s off-putting, judge my Biblical understanding, or disagree with any of my moral principles. Heck, they don’t even mind if you’re in a state of undress. Again, most people are funny about that… But pets have an uncanny ability to forgo social expectations and just be, and if you find that contagious, even if just for a few moments, it can only be a good thing.

 

 

 

Tango and Bouncer, the mirror twins

George

Thomas eating broccoli

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Suri guards the Christmas tree