Little things I have needed to learn as an Aspie

That no matter how much I genuinely like a present someone has given me, if I don’t look at them, smile, and act enthusiastic, they will think I hate it. My mum had to teach me this as a kid.

That if someone (usually one of my parents) is trying to get me to say goodbye to someone not directly in my line of sight, simply shouting “bye” will not cut it.

When someone is talking at length to me, listening means more than just taking in what they are saying. It means looking at them on and off, sounding interested, encouraging them to say more, and saying a few things yourself where appropriate. Comes naturally enough now, but completely bypassed me at primary school.

To remember to make eye contact, to some extent (more on that here).

To be able to say, when I am feeling confused or overwhelmed, “I’m autistic, I find hard, could you just explain…” etc.

That actually you have to stand up for yourself, say no, and set firm boundaries, even if it means someone else can’t completely have their own way. At school, I hated the thought of upsetting people by saying no, when they so desperately needed my stationery, or even treats from my lunch.

That there are some people who are fine with this, as long as it works both ways.

That the worst case scenario in a new social situation is that I’ll find it kind of boring and be happy to get back to the privacy of my room.

That the best friendships aren’t forced.

The difference between when friends need advice, reassurance, or a listening ear. Advice: they don’t know how to deal with a situation and are asking your opinion. Reassurance: they’re saying “I feel so stupid, guilty, embarrassed, etc.” or “I’m not weird/stupid/in the wrong, am I?”. Listening ear: they’re not asking anything of you; they simply want to talk something through or explain something to you.

That feeling sad about someone else’s struggles is a double edged sword – you can either be overburdened by feelings of helplessness, or keep the focus on them and pay attention to what they need.

How to recognise when my batteries seriously need recharging. As a child playing at someone’s house, I’d frequently go and spend time with any grown-ups available. Though I didn’t realise this, I was feeling mentally exhausted and was giving my brain a rest. Now, if I’m socialising and enjoying it, sometimes I don’t realise how much I need alone time until I get it.

 

 

Advertisements

Kind or patronising? Just ask

One of the things that I had no idea how to deal with at school was when people spoke to me as if I was a toddler. I would be muddling through a lesson with as much difficulty ease as the next kid. Who, if they weren’t ignoring me, would be trying to do stuff for me, explaining the simplest things, and telling the others “it’s not her fault she’s slow.” Or weak. I even had one person ask me – completely innocently – if I had brain damage. Seriously.

And it wasn’t just kids. I remember a teacher talking about our latest homework assignment, and mentioning how I’d been allowed to skip certain parts because they were too hard. Or classroom assistants who would follow me like a shadow in front of other kids, when all I needed was to ask a few extra questions.

What I found hard was knowing what to say. For the most part, I’d internalise the inner conflict between not wanting to offend and hating feeling patronised. Very occasionally I’d speak up, but the other person would act like I’d just karate chopped them! So much for not offending.

It’s hard to know where to draw the line here. If you have a disability or illness – whether physical or mental – you will probably have extra needs that require accommodation. And you don’t want to be ungrateful to someone who wants to help. Don’t wait until you feel like exploding. Just explain to them the nature of your needs – and be sure to add what you don’t need.

And if you are someone who wants to help, you might want to look at these pointers.

Don’t be afraid to ask your autistic/partially sighted/depressed (etc.) friend what sort of help they need. Do be discreet, especially if they are with other people – you don’t know how open they are about their needs, and they will appreciate you trying to learn without embarrassing them. One of my new discipleship course leaders took me aside recently to ask me about my Asperger’s and how it may show itself on the course. I gave a brief explanation, told her about my blog, and later brought in this letter. Both parties were happy.

Don’t make assumptions about their abilities. Any writing about their condition only describes exactly that – the condition. Not an individual who has it. Just give them the help they ask for. No more, no less. I find I’m more comfortable asking for help if I know it won’t make the other person act like I’m stuck in a burning building. Trying to help always comes from the best of intentions, but when repeatedly done unnecessarily, tells them “I don’t think you are capable.”

Note the difference between sympathy and pity. Pity is when people say “I feel so sorry for *insert name* because of that thing he/she has.” Sympathy is paying attention to what someone is actually struggling with, and offering moral support because you care. As for words like “cute”? Babies are cute. Pets are cute. Mature adult humans? Forget it!

And finally…remember that not every aspect, or even hardship, of a person’s life is linked to their condition. Special needs or not, anyone appreciates friendship from someone who takes them as they find them.

The importance of being empathetic

When trying to summarise Asperger’s Syndrome to people, I tell them I lack three basic things. 1) Empathy. 2) Emotions. 3)…sarcasm. You get it? Come on, I was sarcastically saying I lack sarcasm…oh never mind, thought it was funny.

A few years ago, I found an article about a groundbreaking new theory: that AS people do not lack empathy but instead are overwhelmed by it. I mean, I could have told them that, but I’m just glad that somebody did.

True, some people with more severe autism may genuinely struggle to empathise. And you could argue that AS people who seem to show it are just demonstrating learned behaviour without any feeling behind it at all. Which would be dictating how a person on the spectrum is feeling, without actually knowing. And they say autistic people lack empathy!

For me, the theory in the aforementioned article is very much true. I have been able to pick up on others’ emotions very acutely since before I can remember. When someone I care about is crying, I genuinely struggle not to cry with them. Also, I hate conflict. Even when it doesn’t involve me, I can see where both parties are wrong, feel the heated emotion, and am powerless to do anything.

What I find harder is knowing how to react to people’s emotions. As a teenager, I would have been completely at a loss for what to do when someone was upset, then hated myself for not helping. Now, I’ve honed my natural empathy so that I know what a person needs from me, as well as how they feel. It gets easier once I’m in tune with how they think – having a similar personality, or knowing them a long time, helps.

A while ago, my stepsister-in-law asked me (not unreasonably): what are my thoughts on AS people typically being Thinkers, and how does being a Feeler* with Asperger’s work? I can answer now. Speaking logically when it’s best not to isn’t the same as being unemotional. It’s just that an AS person may not realise they’re being inappropriate. It doesn’t mean they won’t be upset if they offend someone. Trust me; my whole life, especially at secondary school, would have been a whole lot easier if this didn’t bother me. Or maybe I would have been even less popular? I don’t know.

Sharing my struggles – and having friends open up to me – has taught me a lot about the importance of empathy. It’s not just sympathetic words and and forced optimism. It’s feeling someone’s emotional burden and working out whether they’re seeking advice, practical help, cheering up or – most likely – someone who listens and understands.

 

 

*Basic Myers-Briggs terminology, you can look it up anywhere.

Fresher’s week for the autistic student

When I was new at De Montfort, I had an idea to write an article for the Demon newspaper about Asperger’s and starting university. When I was in my second year, I actually wrote said article for the Demon website. Come third year, and it has just occurred to me to adapt it for my blog. As follows.

As a new student, you may have been given all sorts of university related advice. Make the most of it, have fun, work hard, play hard…sound familiar? But being on the autistic spectrum can make a new and busy environment feel more bewildering than exciting. So if you’re unsure what to make of it all, here are just a few things to bear in mind.

Don’t rush into joining social groups.

Joining societies is an easy way to make time for what you enjoy doing the most, as well as an opportunity to get to know people. Remember, though, that the university lifestyle is a busy one, so you may want to get accustomed to your routine first. Societies are always worth a try, but make sure you know you have time before you make any definite decisions.

Be open and matter-of-fact about your condition.

That doesn’t mean it should be the first thing you tell people, but when the opportunity arises it will help them understand any difficulties you have. If you are talking with someone about your uni experience so far, explain that you are autistic and struggle with change or being around lots of people. Similarly if anyone is confusing you, explain that you are autistic and ask them to repeat what they just said. They will understand you better, and you never know if they are having similar experiences.

Look for opportunities

May sound simple, but as an Aspie, retaining information that hasn’t been told to me directly is something I’ve always found hard. Listening out for events that your lecturers might mention or noticing posters or Facebook announcements is a good start. However, if you’re like me, it might be easier if you think about what sort of opportunities you are interested in (social events, work experience, voluntary work, etc.) and research them.

Don’t take on more than you can manage

You may feel like there is a lot of pressure to join societies and be as sociable as possible. Do go a little way out of your comfort zone if it means finding activities you enjoy, but don’t push yourself so hard that you are too exhausted to enjoy yourself – or, more importantly, study. Most students’ goals for uni are to learn as best as they can and have fun, so don’t be too busy to manage either!

Chat to people

It might feel difficult, but if you look around you during a lecture, these are the people you will be working with for the next three or four years. Don’t worry if you take a while to make friends – this is surprisingly common. When you sit next to someone, introduce yourself. Ask them where they’re from, what they think of any work that’s been set, how they’re finding uni, and be prepared for them to ask you the same. Remember to listen as well, when it’s their turn to talk, and try to show an interest in what they are saying!

Hope that was helpful. Now go on and make the most of it!

Dear early-teenage self

20150307_143604

Dear early-teenage self,

I thought I’d write this for several reasons. One: I was getting all nostalgic while reading your diaries, even if it was mainly you moaning about your life. Two: it might make good blogging material. You’ll never be great with computers, but you will start a blog. Which apparently turned two years old yesterday! Three: Kirstie from Pentatonix did something similar on YouTube that was quite inspiring. This, by the way, is proof we do find a favourite band. Eventually. Four: it’s nearly our birthday.

I recently figured out something crucial: you spend most of your time longing for emotional intimacy that you don’t have, because of the invisible social barrier called Asperger’s. As far as your diaries are concerned, you may be sensitive, emotional and a bit whiny, but now I think I understand why.

I’ll be honest, you’ve still got many hurdles ahead, but plenty of good stuff too. Remember when we moved to Loughborough aged 8, and we hoped with all our heart we would find at least one close friend? Just be patient and over the years, you’ll meet some great people. Including Hannah. She might seem eccentric, but she’s going to be your uni housemate and your closest friend. And she will introduce us to Pentatonix – Evolution of Music. Her best friend, meanwhile, will pal up with yours. Ironic, eh?

Rest assured, you’ll become more self-aware, outgoing and assertive, and (marginally) more socially skilled. We still hate conflict, but hey, some things never change. Look on the bright side, you have a great family, no matter how weird and annoying (you think) they are. The cats are still alive and well, and we even acquire a few more along the way. And don’t take Grannie and Grandad for granted either. Grannie might be short-fused sometimes, but when you lose her – which you will – you’ll cry every day for at least a week.

It is ok to have Asperger’s, you know. It might be a while until you realise this, but when you do, embrace the acceptance you receive. There will always be trials and tribulations, but you can deal with them. We do still get anxiety stomach aches, though. And we start getting migraines occasionally. Sorry about that.

Over the years, we do learn more about God and Christianity. In fact, we form our closest friendships at Christian related activities. Just keep an open mind and an open heart.

I should probably be signing off now, as I’m behind on a certain uni assignment. That’s another thing: we get into De Montfort University! I would tell you about all the writing we get published, but at this stage in your life, you probably won’t believe me.

In the meantime, just keep honing your self awareness, and don’t let your social struggles get you down. And keep your musical skills fresh – you might ditch the steel pans, but you will go many places with your violin and voice.

All the best,

Your nearly-22 year old self.

20150307_143226

Asperger’s and friendships: the ins and outs

Over these past few months, one particular issue that has been heavy on my mind is friendship. Can Asperger people manage it? Why does it look so easy for neurotypical (non-autistic) people? Above all, how does it work?

Previously I spent years watching other people at school or college, wondering how people had such close-knit friendship groups, while I just didn’t feel close to anyone. Even now, I will spend the best part of a social situation staying with someone I know, or on my own like a hermit. Sound familiar?

To complicate things further, true friendship is more than just making small talk. It may start off that way if you see someone a lot, but it requires more than simply being with them regularly. Keep finding things to talk about with them. If you are in a society, you probably have an interest in common, so ask them about it. How long have they been playing that instrument or that sport? Is this just a hobby or an ambition? Give your opinions too, but don’t forget to take in in turns to talk. Just remember: make them feel interesting and assess how many things you have in common.

This, by the way, is how I made friends with Katy. On her first orchestra rehearsal, she was given the honour of sitting next to the shy person at the back who barely knew anyone (me). Tired as I was of awkward silences with other members, I actually talked to her. Several times. Seems like all it took was a similar sense of humour, a few mutual complaints about the music and our shared (we discovered), insane violin teacher, and we never looked back.

Anyway. Maintaining existing friendships is a whole different kettle of fish. I think it is important for neurotypicals to understand how much mental effort it can take for autistic people to achieve this. You might get from the sharing-interests stage to the sharing-feelings stage, but for those who struggle to read people, it takes a lot of careful thought to work out how to initiate, and respond to, openness. There is also a balance – particularly when you live together – between not spending so much time together you get sick of each other, but not neglecting bonding time either.

Then there is empathy. It is a widely accepted myth that Asperger people lack empathy. I have gone through my whole life having to deal with the exact opposite. I feel other people’s emotions so acutely they can make me cry. The problem is, I don’t always know how to deal with them. Sometimes you just have to keep calm and ask: “what would be helpful to you right now?” Make it clear that they don’t have to talk to you, but if they want to, you will listen. Often listening can go further than any advice or cheering up.

So in summary: the better an AS person is at being a friend and “fitting in”, the more effort they may have put into learning how. And, neurotypical friends, if they do something wrong – just ask yourself: is this a crucial mistake that needs correcting? If so, be gentle and clear. If not, live and let live. AS people: if you have at least one friend who completely accepts you, autism and all, be grateful for them. Put that mental effort into your friendship. Tell them they are a good friend. Above all, be there when they need you, and show them the same acceptance they show you. Ignore stereotypes: you can manage friendships.

Want to see the original article? Just click here: http://www.demon-media.co.uk/?p=7772

Students can’t be choosers

Brief recap: in January, I mentioned that the accommodation my housemate and I found was clean, secure and functional. Frequent visits to said accommodation, followed by the long-awaited moving day, have challenged my original opinion, leading me to just accept how we will be living for the next academic year. But, despite all the horror stories I’ve heard, not least regarding living with your best friend, things are getting off to a pretty good start, with partially amended plumbing, teddy bear fights and a balanced diet of apples, baked potatoes and church refreshments. More about the flat in a bit, but until then, my much-loved best friend and housemate…

Hannah and I first met at a Christian youth group, aged 14 and 15 respectively, when she spotted me being the recluse that I was and gave me a hug because I looked “depressed”. On seeing each other in the school corridors after that, my reaction to her gradually went from “who is this strange person?” to “Somebody actually notices me!” Realising that we were both “special” was one of the things we bonded over – I have Asperger’s, she is severely dyslexic. Our mutual school/Christian activities were another, and before long we ended up in the same tent at Soul Survivor, annual teenage Christian camp extraordinaire. Since then, Hannah has never had any faith in my sense of direction. So looking for the facilities in the middle of the first night was a bad idea. How did I know I was going to need a search party? Despite that, she has put up with me with unending patience, hugs, and renditions of “Amazing Grace” to this day, supporting me through my grandmother’s death and my exam disaster. And I couldn’t appreciate her more.

Back to the flat. More recent visits to it revealed that all was not quite as it should be. One thing that bothers me is that we are not allowed to use blu-tack. Which I think would be a small price to pay for fatty deposits all over the kitchen, a broken entrance light and dysfunctional bathroom plumbing. The issue that made the biggest impression on me, as a notorious hygiene freak, was the fridge. Many of you whom I have spoken to recently may have picked up on this by now. Hannah and I came over last Tuesday for some last minute cleaning and tidying. I had just started anti-bacterialising the stale smelling fridge when I inadvertently opened a well concealed compartment full of stinking, decaying food. Curry sauce, garlic, mayonnaise, chocolate and goodness knows what else.

After staring in shocked silence, I called Hannah over and we attempted to remove the worst of it, with me having a heart attack when some of it fell on my hand. Hannah suddenly announced she was going to be sick; not wanting to ruin the recently cleaned floor, I unceremoniously bundled her out of the room. Though I myself was fighting the gagging reflex for the rest of the day, we managed not to throw up and, perhaps more surprisingly in my case, didn’t develop a phobia of fridges.

Moving out has been a blur of stress, excitement and exhaustion. On Saturday morning, I was a bundle of nerves and emotions, not helped by certain cats desperately trying to follow as I left the house. Arriving at the flat somehow calmed me down no end, and our parents soon left us to it with a cheery farewell. We tried out Leicester City Vineyard Church yesterday, and found ourselves up to our ears in food, old friends and more new people in a day than I normally speak to in a month. A bit demanding of social energy, but a sure sign we had landed on our feet. Our second day ended with us snuggling up in bed with Hannah’s laptop in front of us, watching a film, chatting and having a laugh just as we always do. I sincerely hope that we always will. Two days down, eight months to go!