I recently finished reading The Last Night: Antiwork, Atheism and Adventure by Federico Campagna. The interesting title and fact it’s published by Zero Books attracted me to it. It is rather short and does tend to digress away from the particular issue of work in the second half, but there are a few key points and nice passages that I think are worth highlighting.

In this post I’ve tried to summarise and organise the key points and lessons from the book that resonated with me.

WHY DO WE WORK? WHAT IS THE PURPOSE OF WORK?

Obviously, we work to earn money to survive because this is what the system demands of us.

But why do we work so hard? And often harder than we’re expected to? Because we believe we have to in order to succeed? Because this is what everybody else appears to be doing?

WE DON’T NEED WORK – IT IS BOTH HARMFUL AND UNNECESSARY

Harmful: Making products and services is no longer the main purpose or outcome of work. There is a disjuncture between work and economic production. We have overproduction, characterised by excess supply, too little demand and too much emphasis on economic growth. We also have an environmental crisis because of this overproduction and rising consumption.

Unnecessary: We have the technology available to make most human labour redundant.

These two factors should point us towards a dramatic downsizing of human investment in work. And yet…

WE’VE NEVER BEEN MORE OBSESSED WITH WORK. WHY IS THIS?

It’s not only because our SURVIVAL depends on it. Yes, it’s true we live in a world where, for the majority of people, wage labour is the only means to access the market of resources.

But there’s also a SOCIAL aspect: work is “the main platform for the exchange of social recognition”. It is also strongly bound up in ideas surrounding happiness. Most important of all is its impact on the SELF: a person assesses their worth and productivity through their work.

If work is bound up (both in reality and in our imaginations) with survival, happiness, social recognition and self-esteem it makes sense that our world is a work-obsessed one in which:

“Every moment of the day that escapes the universe of work is a wasted moment, a time of despair and loneliness. Without work, outside of work, we are nothing, and so much so that even consumption has had to be turned into a work-related activity”.

So work has a strong grip on our lives for all of these (mainly abstract) reasons. But we still haven’t explained why this is.

We as humans have created NORMATIVE ABSTRACTIONS to believe in, which include Religion, Progress, Career and the State, among many others.

The author argues that these normative abstractions open up a line of DEBT on its believers’ lives from which all necessary obedience and sacrifice are extracted.

Applied to the normative abstraction of Work or Career:

The salary we receive for wage labour can be thought of only in terms of “interests” on the debt. We are used to believing that a salary is the full repayment of the life-time that we lend to those we work for. But our salary can only possibly repay the interests on our lending of life-time. If we were to be repaid in full, a credit of life-time would need to be repaid with an equivalent amount of life-time. This isn’t what happens, so the debt in never repaid to us in full.

Why do we put up with this?

In order to provide the allusion of repaying the debt, the normative abstraction adopts the system of the PROMISE which relies on stocks of HOPE to produce obedience and self-sacrifice. For workers under capitalism, the promise is success in our career. But the repayment is postponed indefinitely. Stocks of hope can never be retrieved in full. If you tried to claim back your stocks of hope the system of the promise crumbles (i.e. working in a career would not lead to imagined success) and all your years of work cease to count for anything, even in the virtual currency of hope.  

Here, the author makes links with religion, belief in the afterlife and our desire for immortality. He argues that the limits of the flesh are not recognised, we are “tricked” into believing we will receive our reward/repayment as soon as we reach the next horizon.

The author makes an autobiographical diversion: faced with a potentially life-threatening medical emergency he lies on a hospital bed and feels nothing but anger. Anger for the hours spent at school, for the time spent commuting, for the summer days spent in the office, for the late shifts at work, for the cocktail parties and the enforced fun. Anger for all he didn’t do. Anger at having wasted so much life trying to believe in the higher purpose of his work, at having blindly poured so much energy into his studies, career and good behaviour. All without reaping him any benefits (besides increased stocks of hope, which he ceased to believe in)

So what does the author propose as a potential SOLUTION?

RADICAL ATHEISM as a tool to exit the system of the unfulfilled promise. The goal is autonomy and the creation of conditions for an individual to take control over his/her life and to enjoy life fully and within its limits.

The concept of LIMITS is key here. We need a ready understanding of the limits of lives and of our enjoyment of them. If we reject an abstract belief in immortality and embrace death as the reality, then we are less likely to waste our time investing in false promises.

“In the face of customary overtime of most workers, religion sees the expansion of the limits of their mortality, stretching towards the abstract shores of success. Radical atheism only sees the inhibition of enjoyment within a life that demands too much of itself”.

Instead of hoping, that is investing belief in the promise of moving one step further towards the immortality of abstractions, we should focus on the PRESENT. We should view the present, and life as a whole, as a limited container full of opportunities for enjoyment which are confined only by the limits of one’s biological nature, appetite and reason.

The author advocates SQUANDERING and disrespectful opportunism as solutions. He seems to accept the fact we have to work at jobs we dislike. (I’m not sure why he doesn’t advocate pursuing the avenue of finding paid work we love to do – perhaps because it is so rare?). He says at work we shouldn’t openly rebel, as this would mean being fired resulting in the squandering of precious material resources (that the “impoverished middle classes” can’t afford to do*). What we should be squandering is belief in normative abstractions. We should blend in, put in the right appearances, but then squander behind the scenes. Pillage, break rules, take naps, and never get found out. This section of the book reminded me of Corinne Maier’s book about laziness at work (which I wrote a post on here). The idea seems to be: accept work as necessary for survival, taking what you need from it (a salary), without investing yourself too heavily (actually investing yourself as little as possible).

*“Most of us can be classified as part of the impoverished middle class. We are not banned from the job market, but our jobs are mind-numbing exercises of patience and degradation. Wage labour or state welfare gives us enough money to survive, but never to break free from the perennial quest for survival”

The book also makes other observations, talking about Adventure and Politics, but I’ll stop here for now as I found these a little less relevant to my main concern with Work.

I’m not sure I agree with everything the author says, especially in terms of squandering as the solution. But the core idea about self-sacrifice in the name of abstract beliefs that ultimately leave us unfulfilled is a powerful one.

A couple of thoughts / criticisms:

• What if you enjoy your work? This book is obviously only for those that dislike their work (which admittedly is probably most people)
• What if you don’t buy into normative abstractions of Career and Success, but instead work only for money and material possessions, things that work does grant us, i.e. what if you accept the trade-off between life-time and salary?

Also, here is a critical review of the book – http://review31.co.uk/article/view/197/a-hyperbolic-fudge

Finally, Federico Campagna also wrote a short piece for the Guardian a couple of years back based on similar themes. Here’s my favourite part:

In an age struggling between crises of economic overproduction, environmental catastrophe, falling salaries and increasing robotisation, there cannot be any other explanation for the current culture of “hard work” than that of a burgeoning religious cult… Yet work is hardly devoid of ideological content. As we do it and understand it today, work has become in itself the very essence of ideology: the act of willingly submitting the short time allowed to us by our mortality, to an all-encompassing, faceless abstraction… What really matters, and really defines us as worthy people – unlike those benefit scroungers – is that we keep working hard, regardless of whether our work goes towards the production of land mines, the deforestation of the Amazon forest or the supply of frog-shaped slippers to gadget shops. Abstaining from work, or being forcefully cast out of it, puts one in the dangerous position of a stateless person during a war, or of an atheist in a theocracy.

A new idea he introduces, which is not in the book, concerns the links between obsessive work culture and the party hard culture:

While in the past the devastation caused by working class alcoholism used to be regarded as an ugly side-effect of industrialisation, today’s party culture is an integral part of the cult of work. Now that human work has become devoid of any true economic function, as the unemployment rate largely demonstrates, its essence boils down to the relinquishment of any whim of taking control over our own lives or of pursuing any personal existential goals, in favour of a mystical union with the abstract flow of global capital. The degradation of drunkenness, or of a ketamine blackout, perfectly mirrors the essence of dehumanising office jobs. In both cases, the point is to stop being ourselves, to go beyond our limits to the point of becoming unrecognisable even to ourselves. Performed in overcrowded spaces, as mediated by standard technologies, and aimed at complete yet subtle conformism, fun and work have finally created an boundless common land.

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Christmas baubles I ©martinak15/Flickr

The holidays are a hectic period for many people. But the higher than usual levels of social and sensory stimulation can make them especially challenging for highly sensitive introverts. Though it can sometimes be challenging, ultimately Christmas is here to be enjoyed – to unwind, relax, and have fun with loved ones. Most of these tips are pretty commonsensical, and I’m sure many sensitive people use them naturally anyway, perhaps without even realising. Still, I hope some of them will help some of you not only to better cope, but also to thrive through these few weeks.

Take Breaks

A big part of keeping yourself healthy and happy at this time of year (like any other) is simply not to let your energy reserves drain away – often easier said than done! The exact amount of sensory input or socialising that someone is able to take is obviously highly personal. It’s important to get into the habit of recognising signs of tiredness and irritability in yourself, so you can take the necessary steps to recharge or slow your energy drain before things get progressively worse!

Taking even short breaks of 5 to 15 minutes spent alone in a quiet place is often enough to provide a sufficient energy boost to allow you to carry on and ensure you keep having fun. After taking a break you’ll feel refreshed, be thinking more clearly, have more energy for being around people, and people will enjoy being around you more as well.

What sort of breaks could you take?

Of course, it depends where you are and who you’re with. If you’re entertaining in your own home, there are all sorts of possible reasons for excusing yourself to another room – to cook, to clear up, to check on or fetch something, and so on. However, you don’t actually need to have anything specific to do. You could just make up an excuse and then go take a 20-minute power nap. The best strategy though is probably to do some combination of the two, so that you’re not “lying” about doing something you’re not. Excuse yourself to do something – even if it isn’t essential – and then spend longer doing it and rest a bit before and after.

When you’re out or at other people’s homes, it’s often much harder to step away. You could spend a little longer than necessary on a bathroom break, provided there aren’t people waiting. You could volunteer to pop out to the shops to get anything that’s needed. If all else fails, seek out quieter spots such as a terrace, garden or kitchen that is a little removed from the main gathering.

If you’re really sensitive and truly struggle to keep your energy levels up and the overwhelm at bay, it may be worth letting (the right) people know. It’s not really a big deal, and if something so small as taking a 10-minute break is going to make a big difference to you, it’s worth doing.

As a side note, there’s also really no need to make up excuses for why you’re taking a break if you don’t want to. Why pretend that you’re doing anything other than napping or spacing out staring at a wall?  This is how some people are built and the more others can understand and accept this the better for everyone.

Find “Alone Together” Activities

Seeking out “alone together” activities to do with others is a great way to pack in plenty of family and friend time whilst minimising the energy-draining effects associated with being around people. When you’re engaged in some sort of activity with other people there’s less need to always keep the conversation flowing, and communication is generally more natural and laid-back. Watching a movie, taking a hike, making crafts, putting up decorations, and reading or writing in the same room are all good examples of being social in a much more relaxed and indirect way.

Preparation and Order

There are people who do not lead their lives with much routine or structure, either because they struggle to or because they prefer not to. Embracing spontaneity is important. Being too rigid can easily annoy others, as well as cause you unnecessary stress as plans inevitably go array. Having said this, preparation is an important tool that many highly sensitive introverts people rely on.

I’d suggest mentally preparing yourself in the run up to Christmas so you can get your head around what to expect. This is clearly much easier if you’re the one hosting and controlling proceedings. Even if you won’t be able to exercise much control, try to plan out in your head what each day will look like. Before you go to bed or just before you get up in the morning is a good time to do this exercise in anticipation. It also helps you build appreciation and excitement for what’s to come!

If you know you have several days’ worth of social engagements or a particularly long family lunch, anticipate it well in advance. Highly sensitive people generally dislike anything too unexpected or sudden, so this mental preparation can really help minimise any stress. I’d also recommend establishing an end point to all the socialising and look forward to the point when you’ll be able to claim some alone time to relax or work on your personal projects.

Another important area where preparation and prior planning comes in use is Christmas shopping. Don’t do the bulk of your shopping for presents or even food at busy times (especially Black Friday or in the week leading up to the 25^th). Get it done in late November if possible, and this should go a long way towards reducing stress in the lead up to Christmas.

Alternatively, have a go at making your own gifts. Don’t worry if your artistic abilities aren’t quite up to scratch – it’s the process and the thought that counts. Homemade gifts work out cheaper, are fun to make, and are far more personal. Another alternative is to opt out of gift-giving shenanigans altogether. Try to get your family and friends on board as well so you can all save money and you’re not left receiving gifts without giving any. It’s a massive understatement to say that the world could do with a little less consumption, materialism and waste, especially when it comes to unnecessary tat, and this time of excess is a great place to start. As cheesy at it sounds, give to those around you in other ways, with your time, help, love and creativity.

Identify Stressors

If you’re aware that certain things stress you out, try to do your best to avoid them. Whether they be particular noises, traffic, crowds, TV adverts, uncertainty, certain people or specific habits in people, bright lights, weird smells, or lots of movement and commotion around you, simply being aware of what is bothering you is half the battle. If you can’t pinpoint exactly what is contributing to your stress levels, spend some time thinking about it or even researching some of the common sensitives. When you feel stressed, pause to take stock of what is happening around you or what has just happened. A loud noise? Someone speaking with a harsh tone of voice? A sudden change of plans?

When it comes to keeping stress and tiredness at bay, do your best to remove yourself from the source if you can do so without too much hassle. Unfortunately, though, a lot of things that bother sensitive people are just normal unavoidable parts of everyday life. Talking to understanding people around you will certainly help though. You can also adopt certain strategies – earplugs, headphones, especially warm comfy clothing, sunglasses, hats – that help minimise sensory input, especially when you’re out and about.

A big part of dealing with stress is simply expecting and accepting a certain degree of it at such a hectic time of year. Even if there’s not much you can do about the noise and other sensory stimulation around you, at least you can understand why you feel the way you do and perhaps explain it to those around you as well.

Avoid Multitasking

Multitasking is a sure-fire way of draining your energy quicker than need be. You’re less likely to accomplish your tasks well, making more mistakes alone the way, taking more time, and also feeling more stressed as you do them. To be sure, in some situations multitasking is unavoidable, such as when you need to look after kids and accomplish some task at the same time. But as a general rule try to focus your attention on one task or goal at a time.

A big source of potential multitasking-related stress for me is cooking and being in the kitchen in general. I love to cook, especially at such a festive time of year. But cooking does involve a fair amount of concentration, balancing multiple activities, and constant attention-switching, especially with complicated or unfamiliar recipes. I usually cope just fine with this, though it can get quite tiring after an hour or two of intense baking. What I do struggle to deal with is any noise or movement around me from other people when I’m trying to cook. Sometimes even having music playing in the background is too much. I basically lose focus, lose the flow of the recipe and start doing things randomly without really meaning to.

If you’re like me in the kitchen, or there’s another area of life where introducing more stimulation significantly increases the difficulty of the task, do your best to find some quiet alone time for this activity. In terms of cooking, what I find really useful is to make stuff well ahead of time, usually from late November onwards. A surprising amount of food can be frozen and this also leaves you with more time to relax in the run up to Christmas. Of course, all of this applies only if your kitchen is a busy place during the holidays. If it isn’t, it could be the perfect place to retreat.

Relax, Christmas Shouldn’t be a Chore

This final point risks contradicting some of what I’ve just said. But I think that quite a lot of things in life are all about finding the right balance which sometimes involves doing contradictory things.

Whilst doing your best to plan ahead, be productive, control your environment and eliminate stressors, remember that Christmas is also about relaxation, spontaneity and fun – whatever these things mean to you.

Whilst it’s important to try to manage things to increase your comfort level, also try to embrace a certain degree of flexibility, spontaneity and humour. We can’t fully control our environments, and we certainly can’t control other people. Acceptance is especially important at a time of year with so much going on. It’s all about trying to achieve a balance between dong your best to make things pleasant for yourself and those around you (sometimes a balancing act in itself) and just learning to let go, leave things to the fate and accept what comes your way. You don’t want to accept things that make you uncomfortable or miserable, even if they appear impossible to change. But a big part of happiness is also about living in the moment and just letting things happen.

This time of year is a great opportunity to forget about normal routines and problems, and to just let loose a little. This doesn’t have to be in the standard way of “letting loose”, through drinking, partying, overeating, or whatever. Don’t feel guilty about skipping a drinks party if you’re not in the mood. It’s stating the obvious, but Christmas is your holiday as well, so make plenty of time to relax and do the things you enjoy at least half of the time. Try not to let yourself be dictated by society’s conventions. There should be no need to throw a party, put up bucket loads of decorations or buy expensive gifts, if none of this truly makes you happy. Otherwise, what are we all doing it for?

I think the best thing to do at Christmas is to relax mentally and to do the things that help you get to this place, preferably things that are good for you! Here are some ideas… Eat well, but eat healthily and in moderation (these things aren’t mutually exclusive!) Get out into nature, for exercise, fresh air and plenty of sunlight. Snuggle up with your loved ones, have long conversations and play games, rather than slumping in front of the TV all evening. Take a bubble bath, go hiking, journal, read, create, photograph, bake, meditate, travel. Whatever it is you love to do, I think we should all be taking the opportunity to do it at this time of year.

It may seem like a big must to prepare an elaborate Christmas lunch, to make sure everyone is entertained, to get the right presents, and generally create a perfect experience. But perspective is key. This time next year, and even more so in five years’ time, you’ll barely remember what happened. Ultimately, life is far too short, so do your best to relax and enjoy yourself as long as you can!

How about you? Of course, all of this advice is from my own perspective. Everyone has different thoughts and experiences, so I’d love to hear about any challenges you face this time of year, and your tips for dealing with them. Just leave a comment below!

The post A Highly Sensitive Introvert’s Guide to Enjoying the Holidays appeared first on Sian Atkins.

It’s the new year, and many people around the world have made resolutions encapsulating ways they’d like their lives to improve over the next few months. Setting goals and habits is all well and good, except that most resolutions do end up broken before Easter time! Making a new year’s resolution is also a classic exercise in raising your expectations about what you will achieve in the future. In this post I discuss what this may mean for our happiness.

The idea that being positive is a positive is pretty well accepted. With some very notable exceptions (such as the news), we’re fed messages that paint the world as a happy, upbeat, joyful place where everyone is having fun, with the implicit assumption that we should be as well. Social media is crammed full of other people’s highlights featuring celebrations, adventures and achievements. Carefully crafted scenes in advertisements and magazines are explicitly designed to plant desires and often unrealistic expectations in us. We’re expected to appear cheerful and upbeat in many situations, especially in public or when selling ourselves. Above all, most self-help books and gurus drill home the importance of positive thinking.

But what if all this positivity sets us up for failure as far as happiness is concerned?

It’s thought that: Happiness = Reality – Expectations       

So to increase happiness you can pretty much do one of two things:

1. You can set about trying to improve reality.

• This is the approach that most of us follow and are taught to follow from a young age. The problem is that science tells us we’re prone to being caught in a hedonic treadmill effect (LINK). As our circumstances improve (through effort or luck) our expectations shift upwards as well to meet and then exceed our new position in life. Reality can never keep up with our expectations. We’re pretty much programmed to always want more. That is unless we make a conscious effort to stop seeking more, as in the below strategy.

2. You can lower your expectations, or at least stop inflating them. There are several reasons why this may be a good strategy:

• It’s much easier to lower your expectations than to change your circumstances. Your expectations are (or should be!) 100% under your control, and this process doesn’t require any money or much time and effort.
• Your level of expectation is not as vulnerable to change as your circumstances. Anchoring your mood and outlook to what is going on in your life means you’re much more likely to fluctuate up and down as reality inevitably changes. Whereas your mood will likely stabilise if you focus on controlling your expectations.
• You’re less likely to feel disappointed when things don’t work out, as you expected this could well be the case.
• You’ll be pleasantly surprised when things turn out well and generally be much more appreciative of everything good in life
• You’re less likely to build up stocks of hope in misplaced areas. Having high expectations can lead you to work really hard and make sacrifices for something you’re trying to achieve. This is all good if you really want what you’re trying to get. But harbouring excessive amounts of hope can sometimes cloud thinking and perspective about the importance of what you’re trying to achieve. High expectations, especially if they emanate from external sources, can lead us to get caught up in the moment of achievement, without paying attention to the process, value or personal meaning in what we’re doing.

If you’re feeling convinced that lowering your expectations could help you be happier, and want to give it a try, how should you go about it? I’m certainly no expert, but I’d suggest some of the following:

• Expect failures, mistakes and steep learning curves as a matter of course.
• Remember that we’re all imperfect. People will do stupid things and let you down. But it’s not really their fault. They’re probably not doing it on purpose. We all do things that don’t make sense or end up hurting people. But most of us don’t mean to (even if we did mean to, we can’t necessarily be blamed, our circumstances probably drove us to it!). We’re all flawed, it’s just part of being human. We’ve (hopefully) got millions of years of learning, improving and evolving to do yet.
• Have goals and dream, but don’t be overly stringent about how you envision achieving them. Also let your goals change as you progress through life. In my admittedly limited experience, it’s probably best to avoid pinning all your hopes on one or two things or to stick religiously to a set path. We’re all changing all of the time, even if we don’t think we are, and our circumstances constantly fluctuate. Try to be open-minded about where life can take you.
• And finally, it helps to bear in mind that the world is a complex, crowded and irrational place where things constantly go wrong, for everyone, even if it seems some people are blessed with all the luck in the world. Try not to feel vindicated when bad stuff happens. It’s rarely personal or deserved, rather just sheer chance.

So, overall, I’d recommend: Expecting problems along the way. Expecting other people to be imperfect. Being open-minded about what and how we achieve. Avoiding feeling vindicated when things go wrong.

To summarise, you might assume that ↓ expectations would = ↑ grumpiness. But check out these two simple diagrams:

Star: Better than expected; Circle: Neither good nor bad; Lightning bolt: Worse than expected

We’re happier in more circumstances under the scenario of lowered expectations!

Of course there are dangers and downsides to harbouring low expectations. We all need some hope and goals to strive for. And there’s always a danger of sinking too far into outright pessimism. Perhaps better than lowering your expectations, is to work towards having no expectations at all? Simply let life play out before forming expectations about what should be.

Let me know your thoughts on this in the comments!

Interested in learning more? Here are two inspiring videos on the issue:

Jenna marbles, my favourite Youtuber, on why low expectations are good

The School of Life on Pessimism

The post Could lowering your expectations make you happier? appeared first on Sian Atkins.

I’m starting a new series of blog posts which will consist of me reviewing some of the best books I’ve recently read. I got into reading non-fiction on a pretty regular basis a couple of years ago and I’m now in the habit of reading at least once a day, usually for an hour or so. Still, I’m a relatively slow reader, so I don’t get through that many books in a year! I like to pick quality books that I’m sure I’ll like, savour them and try to take a few notes so that I’m more likely to actually remember, implement and benefit from what they contain. 

For each book review, I’ve decided to note the top ten ideas that resonate with me. I’m sure that different people would pick up on different ideas, but I want to try my best to be as objective as possible, in terms of highlighting the information that is most prominent, repeated, controversial, actionable, thought-provoking and even potentially life-changing.

I’ve read dozens of great books over the last couple of years (you can check out my reading log on Pinterest) so there will be a bit of a back log to deal with before I get to the books I’m currently reading. I’ll only be reviewing my favourites, otherwise there are just too many!

I hope you enjoy the book review series. Hopefully each review should help you decide whether the book in question is worth reading for yourself. Or if you’re short on time, having the key ideas highlighted can be a good alternative to reading the actual thing.

These are the sorts of books I’m hoping to read at some point in the future. As you can see, it’s mainly stuff on personal development, self-employment, psychology, alternative lifestyles, anti-work, and so on. Take a look, and be sure to let me know of any similar books you’d recommend.

As I add a book review, I’ll link to the post below, so you can find them all in one place.

• Everything I know, Paul Jarvis
• Show Your Work!, by Austin Kleon
• Antiwork, Atheism, Adventure by Federico Campagna

The post Book review series appeared first on Sian Atkins.

So I’m breaking the main rule that I set myself for doing book reviews on the every first one. I said in the introductory post that I’d note just the top 10 ideas in the book. But this book – Everything I Know, by Paul Jarvis – contained too many cool ideas, so I got carried away and typed them all up. I’ll try to really condense the points in future so the reviews aren’t so long and it’s easier to hone in and retain the best bits!

Here it is:

This short book by Paul Jarvis centres around those who do or are looking to do work that is creative and aligned with their own values. It’s particularly relevant to those on the self-employment journey, whether you’re trying to make a full-time living with a new business or as a freelancer, or you’re launching projects, testing ideas, and sharing your creative work on a public platform. Major themes include: The importance of being yourself, staying true to your values, and carving out your own path. Taking action in spite of fear and uncertainty. The dangers of perfectionism, excessive promotion, and trying to emulate others. And plenty more…

Here are the top takeaways

• Be yourself. This is difficult to do because it requires vulnerability which in turn requires a lot of courage. The ultimate aim should be to narrow the gap between your true self and your projection of who you are (your personal brand).
• Have role models by all means, but treat them as starting points. You don’t have to emulate anyone, in fact it’s probably best not to. We often want to emulate other’s success, but not the fact that they probably achieved their success through being themselves.
• It’s not all about you. Passion for your work is not enough. You need to find the intersection where people will take notice, find value and pay for what you produce or provide (which can be hard to do). Your audience is obviously key if you want to make money out of your work. Make them the centre of the story, not yourself or your product/services. Inspire them to be better, focus on what they want and use their language.
• Be wary of advice (including this advice!). You need to try things for yourself. What works or doesn’t work for one person could have the opposite effect for someone else. Listen to yourself and try to follow your own path even as you’re (inevitably) unsure about where it might lead.
• Be unique. Do this by being yourself, even (and perhaps especially) if this means being weird. Be as honest as possible. Stand out, don’t blend in. People will appreciate this, as we like people who seem human (i.e. less than perfect) because this is how we all are. And be yourself from the start; don’t wait until you’ve achieved some recognition to let your true self emerge.
• Define and be guided by your internal values and motivations, which may need to be constantly revaluated as you progress. This will give your work meaning. When you’re trying to pick a path being value-driven makes it infinitely easier to see what work will make you fulfilled. It’s critical to care about what you do. And a great thing happens when you focus on work you love – more of it starts to appear. We tend to get more of the things we get.
• Doing the actual work trumps promotion. Dressing something up won’t work unless there’s already some value there. Ideally you want to be too busy doing the actual work to promote yourself. [Note – this doesn’t really apply to newbies who need to do a lot of marketing and client hunting when starting out. Paul already had a bunch of clients when he started his web design business so he could focus most of his time on delivering great work straight away].
• The great benefit of being self-employed is that you can work when you want. You can take time off from work – a couple of months here, a few afternoons there, even an entire year. The key to doing this is to live more frugally. Define an amount of money that you’d be happy earning and don’t bother working beyond this to earn any more.
• Keep in mind the power of stepping away and stopping work as a guaranteed way to gain a fresh perspective. After returning from a break answers suddenly seem obvious. Sometimes not working, or working less, can be the best thing for your work.
• Know when to say “no”. Time and energy are limited resources. Though as a beginner, when you can’t afford to be so picky, it does make sense to say yes more often.
• It can be detrimental to focus on the future, on goals and on outcomes. All we really need to do is focus on doing work in the present. Future focus can lead to excess worry, wasted time (e.g. through producing detailed business plans) and a sense of entitlement.
• You can’t predict what will happen. The only way to know if an idea will work is to try it and see.
• Act in the face of fear. We can’t avoid being judged (what many fears revolve around). So we may as well get on and put things out there anyway. Fear never really goes away, but we can get a lot better at pushing past it. Just do things regardless of feeling fearful. Then fear loses its power (for a while at least!)
• Don’t try to please everyone, not even those who you know like you. Focus on what you want to say, not the public reception.
• The secret to success is not glamorous. Do the work you do as often as possible, even when you don’t feel like it. Bursts of creativity and productivity can strike when we least expect them.
• Break down creative or daunting work into small tasks. And then only think about tying all the parts together near the end.
• Try to ignore your inner critic and stifle self-censorship whilst your creating. Save them for the editing phase.
• Don’t repeat something that isn’t working. It seems obvious, but you need to change something to get a different result.
• Human intentions are pretty evident. People can generally see through other people quite easily. If you have genuinely good intentions, it’ll show. A sales pitch always sounds sales-y. Focus on helping people, not getting money.
• Perfectionism can stop you finishing things. It’s pretty much impossible to make something perfect anyway. Better to launch a less than perfect product than get sucked into endless cycles of refining. Focus on big ideas over small details, especially in the early phases when you’re launching and testing.
• Take a stand. Draw a line in the sand to make your values (why you do what you do) clear to people. This may well alienate some or most people, but it makes it easier for those people who will resonate with your work to find you. Once you find your people, focus on connecting individually (especially at first), be as honest as possible and focus on your shared values.
• Expect failure. It’s almost a requirement for success. Persistence is so important in order to be able to navigate the setbacks and wrong turns.
• Persisting and finishing stuff: After the initial passion wears off things start to seem more laborious. You may abandon the project (though usually not through some grand gesture; simply through working on it less and less until you forget about it L). When this happens think back to your initial intentions to help refocus and motivate yourself.
• The process can be difficult. It typically involves many horrible drafts, bad ideas and mistakes along the way. Creating a final product involves a lot of curation, editing and iteration that is hidden from public view (which is why comparing yourself to others is not good – you’re not comparing like with like). Try not to focus on the end goal, as this can lead to frustration with the work you have to do to get there. Create as badly as you need to get things created. It sometimes helps to intentionally create bad drafts just to remove the fear of perfection and get started!

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Travel is often painted as an extrovert’s dream, yet many introverts feel strongly drawn to exploring the world beyond their doorstep. There are also many ways in which travel lends itself especially well to an introverted mindset. But this isn’t to say that travel doesn’t throw up a fair number of challenges for many introverts.

Below, I’ve compiled a few top tips for introverted travellers, especially for those travelling on a shoestring. The constraints of a tight budget can pose additional difficulties for introverted travellers, because money generally buys you comfort and all-important privacy, especially when it comes to accommodation. Other factors to keep in mind for planning an introvert-friendly trip include picking the right destination, taking the opportunity to recharge whilst on the move, as well as adopting a slower approach to travel.

Choose your destination wisely

Despite the diversity and beauty of our planet’s landscapes, the splendours of its history, cultures and architecture, along with the mouth-watering cuisines and intriguing wildlife, it’s often exclaimed that it’s the people that constitute the best part of travel. But like introverted globetrotter Sophia Dembling, I’ll confess that people are not the reason I travel and interacting with them does not usually form my favourite parts of a travelling experience.

Of course, it’s impossible to avoid encountering people pretty much everywhere you go, and encounters with strangers and new friends do often lead to some of the most interesting and memorable (though sometimes also challenging and draining) parts of the travel experience. However, if you are keen to try to minimise the emphasis on other people in your adventures, you might want to apply some of the following tips.

Most obviously, and especially if you’re a nature lover, plan a trip to a sparsely populated or remote area where you can immerse yourself in days of uninterrupted peace and solitude. Although our planet is becoming progressively more crowded and urbanised with each passing year, there are still vast tracts of people-free wilderness that are perfect for reconnecting with nature and leaving behind all the excess stimulation and drama of the human world.

How about trekking through the wilds of Torres del Paine in Chile, or embarking on a cycling expedition across sparsely populated Mongolia? It will take some extra planning and care to organise a trip to a remote location, especially if you’re going solo and unsupported, but it can be well worth going the extra mile for the guaranteed solitude.

At the other end of the spectrum, although it may seem a little counter-intuitive, opt for an especially touristy destination or a big metropolis. It’s much easier to blend in, remain anonymous and stay attachment-free in people-filled places. Being alone in a big foreign city, where no one knows your name or anything about you, offers a great sense of unrestricted freedom. For those craving some “invisibility”, Tokyo is a great place to start. You can blend effortlessly into the crowd and lose yourself – and others! – in the maze of streets and attractions. Plus, the Japanese are pretty respectful when it comes to privacy and personal space.

Another point to bear in mind centres around developing versus developed countries. To put it bluntly, if you’re white (and especially if you also happen to be female, young-ish looking and alone) in a relatively un-touristy part of Africa, Asia or Latin America you’re likely to stick out like a sore thumb and attract a fair bit of attention as a result.

In places like North America, Europe and Australia, on the other hand, it’s easy to pass as a local, especially if you make the effort to blend in by paying particular attention to things like dress, customs and body language. Day to day life is also more efficient, predictable and orderly in the richer countries, meaning both locals and visitors have an easier time keeping to themselves.

It’s also well-known that some cultures are more reserved than others. America is a famously extroverted nation, where enthusiastic greetings and cheery small talk are all the norm. More introvert-friendly nations where quiet, reserve and privacy are more highly valued include places like Finland, Japan and Laos.

Accommodation

If money isn’t a major concern, accommodation needn’t be a big issue as you can simply afford a private room in most place. But if you’re travelling on a tight budget this isn’t an option for most nights, unless you’re in a cheap country. Hostels are the answer for most travellers on a shoestring, especially in cities. But these aren’t always a good fit for introverts. After a long, tiring day of exploring, most introverts will be in need of some alone time and a quiet place to recoup from all the sensory and social stimulation.

So what are some good options for introverted travellers on a budget?

First, I would say don’t discard hostels altogether. There are a wide variety, and whilst some promote a partying culture, this certainly isn’t the case for all of them. Do your research, read reviews and ask questions online to learn more about a hostel you’re considering. From my own experience, large hostels or dorms lend themselves well to anonymity. So if meeting people and socialising is not on your agenda, it may be easier to keep to yourself and pass through relatively unnoticed in bigger places.

Camping is one alternative to hostelling for those on a budget. You’re guaranteed your own private space, and at a much cheaper rate than most other options. Granted, sleeping under canvas isn’t the most convenient form of accommodation for certain types of travel, especially city sight-seeing. You’re unlikely to be centrally located. It also means carrying a lot more gear around with you. But if you have your own vehicle, camping could be a cost-effective, enjoyable option which offers just enough privacy to keep your energy levels up. Perhaps better still, for maximum freedom, combine your vehicle and home in one and hit the road in an RV.

If you’re staying put in one location for a while investigate longer-term options that could well work out cheaper. Consider house-sitting or renting a small one-bed apartment for a few months. When planning a recent trip to North America I knew I’d be desperately craving some privacy upon arriving in Toronto following a hectic sequence of planes and airports. When I was researching accommodation I initially struggled to find a private room within my budget. But then I happened upon a university summer residence programme offering single rooms at a very reasonable price for anywhere between one and 110 nights. I’m sure many universities around the world run similar schemes. It can be well worth thinking beyond the standard options when it comes to finding accommodation that suits your needs.

Recharge whilst on the move

I’ll admit that this one isn’t always possible. In the developing world, especially, transportation is often crowded, hectic and noisy, and as a foreigner you’re likely to attract a fair amount of attention. In Madagascar, I spent a fair amount of time riding around in the national form of public transport known as taxi-brousses. Strangers half sat on each other’s laps, blaring Malagasy pop music, jaw-rattling roads, overheating engines, armed soldiers, motion sickness and squawking chickens, certainly don’t produce a calming experience. The good news – or not, depending on your perspective – is that this sort of experience is becoming more of an exception as things progress, even within poorer countries.

Still, the wealthiest countries are where transportation is at its most predictable, orderly and comfortable. Moreover, it’s generally the norm for people to keep to themselves. In many countries, such as the UK or Japan, talking to strangers on public transport isn’t really the done thing. In these circumstances, one of the best places and ways to recharge is actually whilst on the move.

Many people find looking out of a window and watching the changing landscape to be very soothing and conducive to thinking. When movement is fluid and rhythmical, it’s easy to sink into a relaxed slumber and state of dreaminess, whilst at the same time being able to think remarkably clearly and creatively. This is especially the case on trains, where the scenery changes often enough to keep our brain engaged, but it’s not so fast or haphazard that we feel overwhelmed or impatient.

Slow down: do less to get more

This is probably good advice for anyone in today’s hectic world. But a slower approach to travel is especially valuable for introverts who tend to enjoy observing, admiring physical beauty, proceeding at a leisurely pace, as well as having the time to explore their environment and form connections on a deeper level.

If you’re sightseeing or exploring a new city try picking just a few things and focus on doing them really well. Prioritise what you want to do most. Channel your energy into one or two things rather than spreading yourself too thin. And think quality and depth over quantity and only scratching the surface.

Do less, but also do things at a slower pace. Spread activities out over more hours, days or weeks to reduce overstimulation. Travel should not be a race or competition to go everywhere, do everything and meet everyone. Fulfilment from travel doesn’t really come from visiting as many countries as possible and checking off as many sights as you can whilst you’re there, especially if this means you can barely process or remember what you’ve done once you get home. Our most memorable travel experiences generally result from developing some kind of emotional or intellectual connection with what’s in front of us, which means investing time and energy. Introverts have smaller reserves of energy when it comes to dealing with the outside world, so investing time in a “less is more” approach might be the way to go.

Also, try just doing nothing on your travels. Some of the best moments can come from being still and pausing to take everything in. Become hyper aware of your surroundings; people watch; lie on a grassy patch in a park; wander the streets with no particular purpose. Engage all your senses in savouring the novel sights, aromas, sounds and tastes. Above all this means focusing on the present moment – making a special effort to do one thing at a time, without multitasking or worrying about what comes next.

This concludes my list of top tips for introverted travellers. If you value quiet and solitude, I hope it inspires you to get out and discover the world, but on your own terms. There’s certainly no need to leave all the exploring and adventure to the extroverts!

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To travel alone or with others is perhaps the one variable that can make the biggest difference to your trip. You can be in the same place, under the same circumstances, doing the same things, but have two totally different experiences depending on whether you’re alone, with a partner, friend, new travelling companion or part of a group.  

The first thing to consider when pondering this question is to think about why you want to travel. To have fun? To challenge yourself? To immerse yourself in the local culture and meet new people? Of course, these things aren’t mutually exclusive; they can easily be incorporated together into any one travel experience. But it’s important to bear in mind that one or the other will likely be easier to achieve alone or with others.

The other factor to take into account is your own personality and travelling style – which will most likely be linked to the reason you want to travel anyway. Do you prefer to be surrounded by people you know well, taking pleasure in shared experiences? Or do you love being open to new encounters with a wide variety of people? Do you function best with plenty of alone time? Or do you quickly get antsy when you find yourself without company for too long?

If you’re undecided about whether to fly solo or take someone along for the ride, here’s a list of the benefits and drawbacks associated with each.

Pros of solo travel

(& cons of travelling with others)

​FREEDOM

Complete control and freedom over everything you do

VERSUS

Needing to take into account other people’s wants, feelings, ideas and expectations which takes up time and energy, results in compromises and could occasionally lead to conflict.

CHALLENGE

It’s more challenging to travel alone so there’s a greater sense of achievement associated with it, especially if you go out of your way to push yourself. Solo travel is more likely to result in personal growth, increased self-understanding, as well as cultivate self-reliance and an independent mindset. 

VERSUS 

Potential over-reliance on others, and perhaps not such a great sense of accomplishment.

IMMERSION

Greater immersion in both the physical and cultural environment. Solo travellers are much more likely to be approached by others, as they are perceived as less threatening and sometimes more vulnerable and in need of assistance. This makes it easier to befriend and integrate with people, especially locals.

VERSUS

It’s all too easy to form and get stuck in a bubble with the people you’re with, which acts as a type of barrier between you and the outside world. This effect is worsened the larger the group. 

ALONE TIME

You get to enjoy peace and quiet, your own company and have plenty of time for being inside your own head – especially important if you’re an introvert. If you’re the kind of person who is uncomfortable being alone, solo travel can be a great way to practice and get better at it. 

VERSUS

It’s harder – and in some circumstances, virtually impossible – to be alone when you want to.

Pros of travelling with others travel

(& cons of travelling solo)

RESPONSIBILITY

Shared responsibility takes the pressure off. You have someone to lean on if you need to make difficult decisions. You can also complement each other’s skills, and be stronger than you would on your own as a result.

VERSUS

You have sole responsibility for everything, which can be stressful. You’ve only got yourself to blame if things go wrong. ​

FUN

Being with others is usually more fun than being alone. This is the case even for many introverts, assuming the company’s good and as long as it’s well-balanced with sufficient alone time. You can benefit from the shared experiences and memories. Having others around can help you better process and appreciate your experiences or look at things from a different perspective.

VERSUS

More vulnerable to loneliness and boredom.

SECURITY

Greater security – both psychologically and in real terms.

VERSUS

More vulnerable and more likely to feel scared

ENCOURAGEMENT

Planning a trip with others – especially if it’s an ambitious one – provides the momentum and encouragement you need to get started and keep going. Others can be a great source of practical and emotional support if you run into trouble.

VERSUS

You need to be 100% self-motivated. There’s no one to pick you up if your belief or motivation start to flag.

COST

Travelling with others usually works out cheaper, as you split the costs of accommodation and other shared items such as gear and food.

VERSUS

You shoulder all the expenses yourself.

INTERACTION & INSULATION

We generally feel more confident about approaching others when we’re with someone we know well or if we’re already part of a group. On the other hand, if you’re not in the mood, you can let the other person or people you’re with do most of the talking (especially useful if you’re an introvert travelling with an extrovert!).

VERSUS

It can be tiring and intimidating (not to mention repetitive) having to be the one constantly interacting with all the new people you encounter. 

So, what are you after?  Freedom, challenge, responsibility, immersion and time to yourself? Or fun, greater security, shared responsibility and a confidence-boost? Hopefully you should now have a good idea about whether to travel alone or with others. Let me know your thoughts in the comments. 

To finish, here’s a quote I came across from someone on doing a bike adventure solo versus with others. It nicely encapsulates the benefits and drawbacks of each:

“Cycling with four other people has been so different to riding alone. Not better, not worse, just different. With a group of people there is no security risk and no problems with leaving your bike whilst you shop or eat or go to the toilet. You have practical support with breakages and repair, enormous moral support in the face of 200 staring people. There’s relief from monotony as you talk away the long, dull cycling hours, company in the evenings, fun, laughter and evening beers. But cycling en masse deprives you of the days of silence, the intensity of experience, the unavoidable (and ultimately unmissable) interactions with locals and the fears and tears and frustrations of being alone – the character building. In conclusion: if you want to have fun then travel in a group. If you’re not after that, stick by yourself.”

More resources:

Of course, there’s also a huge difference between travelling as a pair or a three and being part of a larger group. I’d recommend checking out this entertaining article from 20-something travel on why travelling as part of a larger group is often so difficult.

For more on this topic, I’d suggest heading over to Alistair Humphrey’s site for a great selection of comprehensive advice from seasoned travellers.

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Here are my top 10 takeaways from reading Show Your Work! by Austin Kleon

Don’t be afraid to create your own work

In terms of media, art and content, most of us are consumers before producers. But the gap between reading / collecting / curating / watching on the one hand and creating/writing on the other is not as vast as we often assume. They feed into each other to a quite a large degree. Having stocks of inspiration and “stealing” the work of others is a great base from which to get started on your own creations.

Learn through doing

You develop your voice, ideas and style through exercising them; through the process of doing. So don’t wait around doing nothing if you think you lack these things. It’s through starting and gradually getting better that you acquire them.

Share

Don’t be a hoarder. Instead be generous in sharing your ideas, work, thoughts and discoveries. Share your sources of inspiration (books, articles, websites, movies, art, quotes, people you admire, etc), especially if you are a beginner and developing your tastes. A great way to do this is through teaching people what you know, which will generate additional interest in your work. Sharing isn’t only necessary to get yourself known, it’s an essential part of actually doing the work well. Getting feedback from and interacting with fans or peers in your niche is invaluable in terms of learning and developing.

but don’t overshare

Equally, it’s important not to spam people. There are some parts of life that should be private (goes without saying), but also things that just aren’t worth sharing. There’s enough content (of varying degrees of usefulness) out there already, so don’t contribute to the noise if you have nothing worth saying. Submit your idea to the “so what” test. Why should someone care about what you’re sharing?

Be interested in others

Don’t just focus on self-promotion. It’s important to be genuinely interested in other people and their work. Creative work is a two-way street. Your audience isn’t passive, think of them as collaborators. If you want fans, you need to be one yourself. If you want to get, you have to give. To be noticed, you have to notice.

In terms of your audience, focus on quality before quantity.

Of course, it’s nice to have a large following. But it’s more important that these people are actually interested in you, and that you too find them interesting. Otherwise what’s the point? Search out your people. Make sure you look in the right places. Draw a line in the sand (make a stand) to help them find you. This article entitled 1000 true fans discusses the value of having a modestly-sized yet highly enthusiastic audience.

You will get criticised…

But get into the habit of only reacting to and taking on board valuable criticism that comes from people you respect. The more you create and share your work, the more criticism you’ll receive. It’s inevitable. But luckily, the more you share, the easier it becomes to simply brush away unhelpful negative feedback and move on relatively unscathed.

Take a break

Stepping away from our work, whether for relatively short periods in the day or for months at a time through a sabbatical, is really valuable. Some of our best ideas are busy brewing during this down time. Plus, it’s fun!

Starting/Finishing

It’s very important not to quit prematurely. Those who succeed are often just the ones who stick around the longest and don’t give up. On the other hand, we do need to know when to move on from a project (whether or not it has been successful). The best way to do this is to think of the work process as a chain reaction. This is sure to happen naturally if you’ve been learning a lot as you work. This way, you’ll never be stuck asking yourself “what’s next?”. What you’ve just finished working on should spark new ideas that lead directly into something new. We don’t really abandon old work, we’re always building on it.

Don’t get obsessed with what might happen in the future

There’s a limit to the value of planning ahead. Ultimately, there’s only so much we can control.  The only thing we can absolutely control is our ability to do our work in the present moment. So try to just focus on doing this, without worrying to much about where it might lead.

+ A couple of great quotes that were included in the book:

• “Someone who isn’t embarrassed of who they were last year probably isn’t learning enough” – Alain de Boton
• “It’s all about paying attention. Attention is vitality. It connects you with others” – Susan Sontag

And here are all of the rest of the notes I took whilst reading it – if you can decipher them! 

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Here are the best ideas I extracted when reading Pico Iyer’s TED book on the art of stillness. You can learn more about the art of stillness here. I’d also recommend watching the associated TED talk. 

Stillness has never been so necessary

The World Health Organisation predicts stress will by the major health epidemic of this century. Machines are coming to seem part of our nervous systems. Emails, bosses, parents, everyone and anyone can find us whenever and wherever we are. Interruptions destroy our peace of mind. The more we can contact others, and they us, the more it seems we lose touch with ourselves.

Until recently, it’s been access to information that’s been most highly prized. Now it’s freedom from information, or at least the ability to sift through it and extract only what’s important, that’s most valuable. On a daily basis we’re confronted with too much information, without having enough time to process it.

Everything we do, learn, and work towards is designed to get us somewhere; to propel us forward towards some goal we should have in mind. It’s drummed into us that the point of life is to get somewhere in the world, not to go nowhere.

What is stillness all about? And how can it help us?

Stillness means coming closer to our own body and senses.

It’s about gaining time – something which is finite and irreplaceable.

It involves gaining a sense of clarity and perspective as you step outside the immediacy of your own life with all its noise, complexity and movement.

Stepping away, often makes you feel closer to others – both to your nearest and dearest and to the world more generally.

It may help you to stop taking your thoughts, ambitions, and own self so seriously. It can feel like an opening up of the world; a new and powerful awareness of all the things that are bigger than your own being.

It can lead to unexpected insights. It’s often through the very process of not trying to think that we get our best thoughts. Thoughts which we don’t consciously seek out are often more fresh and imaginative. You don’t tend to sit still in order to actively try to solve problems. Rather you sit with the problems and they somehow solve themselves.

Stillness can help you find happiness and understanding. We often make the mistake of searching for happiness outside of ourselves, when most of our problems, – and therefore the solutions – lie within. Here’s a nice parable: A man loses his keys in his living room, but goes outside to the street to look for them because there’s more light there. There’s also a case for arguing that we can best change our life merely by changing our perspective. It’s not necessarily our experiences that form us, but the way we respond to them. “There is nothing either good or bad, but thinking makes it so” – Shakespeare. 

Research on meditation has identified some of the following benefits: reduced blood pressure, slower and longer breathing, reduced anxiety, reduced fear response, reduced reactivity to unpleasant or unimportant aspects of life and greater ability to focus on small everyday pleasures. There are plenty more – just Google it!

How to be still

Here are some tips from the book on adding stillness into your daily routine, or for inserting more substantial periods of stillness as a break from your normal life.

Observe a secular Sabbath in which you disconnect from all technology. Try doing this on a Sunday or even over an entire weekend.

Make a habit to step away from work and emails. Don’t feel guilty about doing this. The quality of your work will often be better as a result.

For your next vacation, don’t plan a trip abroad. Instead, consider the benefits of staying at home or seeking out a quiet retreat somewhere. The places that move us most deeply are often those that are in some way most familiar to us. Here’s some more inspiration from one of The School of Life’s videos on the benefits of staying home. 

If you do decide to jet off to foreign lands, try to sit still and do nothing for your entire flight or journey. Don’t plug into the entertainment device, refrain from picking up a book, don’t even nap. Just sit, think and look out the window. This will result in you arriving at your destination feeling remarkably clear-headed, refreshed and harbouring a real sense of newness and possibility.

Try doing nothing in the hour before you go to bed, especially if you are usually one to plug into technology at this time. Sit still, meditate and perhaps listen to some calming music. You’ll feel really different.

When being still, you don’t always have to try so hard to do nothing. It may sound contradictory, but trying too hard to sit still can be counterproductive in terms of making you feel calm and present. The aim should be to exist in a state where you aren’t constantly telling yourself to do something, which includes telling yourself you should be doing nothing! So allow yourself to do a few “gentle” activities that crop into your mind such as jotting down stray thoughts and ideas.

What is stillness ultimately for?

For many advocates of stillness, the main purpose behind this practice is to harness the benefits for busyness. The message is essentially: Be still so we can get better at being busy. This may amount to using new techniques to meet the same old unelevated ends.  

But Pico Iyer argues (and I agree with him) that its’s better to value stillness in its own right. He astutely points out that the very point of being still is to help us see through the very idea that we should always be pushing forward. Despite all the benefits outlined above, it’s important to realise that the payoff from stillness might be quite intangible and long-term.

Balance is best

The author is certainly not against movement and external stimulation, in fact this is central to his life and he certainly seems to revel in them, particularly as he’s a travel writer by profession. These things form the core of most people’s lives, even if this is more out of necessity than choice for some of us.

He advocates a balance, in the form of stillness as an escape from the busyness of normal life. He believes we should harness the rewards of stillness and bring them back into the commotion of the world. It’s not very valuable to keep them confined to a monastery or retreat. In other words, he seems to be saying “don’t stay still for too long”.

Ideally, we should aim to circulate between the two states. Stillness helps us process and convert our experiences into meaningful insights. Activity refreshes and reengages the mind, and at the very least reminds us of the pleasures of stillness.

Inspiring quotes from the book

• Clouds and blue sky. This is a Buddhist explanation of the nature of the mind. Clouds = thoughts, especially negative or unnecessary ones. Blue sky = peace of mind. There may be clouds, but that doesn’t mean the blue sky isn’t always there. All you need is the patience to sit still until the blue sky inevitably shows up.
• “Making a living and making a life sometimes point in opposite directions”
• “Half the confusion in the world comes from not knowing how little we need” – Richard Byd
• “Don’t just do something. Sit there”.
• Stillness is a cathedral in time rather than in place.
• Movement is most valuable when set within a frame of stillness.

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Welcome to the Autstanding blog, the place where understanding autism and autism understanding come together!

After first coming across the concept of autism just a couple of years ago and then receiving a diagnosis in July 2016, I’ve become pretty obsessed with trying to understand everything I possibly can about autism, both in terms of how it relates to me specifically, as well as in a much more general sense.

Society has learnt a lot about autism over the past few decades, but there is still so, so much we still don’t know. This includes some rather basic questions such as: How can we best help autistic people? What causes autism? What actually is autism? And even (very controversially perhaps) questions around whether autism actually exists (as a biomedical category outside of a socio-cultural construct) at all!

Personally, I feel driven to understand autism largely out of pure curiosity – learning how and why certain brains work differently and the implications this can have fascinates me. But, of course, there are often strong political impetuses behind efforts to increase basic understanding, and these can differ wildly (i.e. pro “cure” advocates vs. neurodiversity advocates). Unfortunately, in many contexts, current attitudes and realities surrounding autism are often quite negative. But, hopefully, working towards increasing understanding – if harnessed in the right way for the right ends – can go a long way towards bolstering the levels of awareness, acceptance and appreciation autistic people experience in society.

In short, this blog seeks to merge two aims: 1) Curiosity-driven discussions about autism rooted in a) scientific theories and research and b) the lived experiences of actually autistic people, and 2) More political aspirations geared towards changing attitudes surrounding autism for the better, with the hope that this will greatly help improve the lives of autistic people everywhere. (Not at all overambitious then!)

What’s with the name?

“Autstanding” is a merging of autism + understanding. These two terms can be combined in both directions:

– Understanding autism – addressing basic, yet still largely unanswered (perhaps unanswerable) questions, such as: What is autism? Why is it here? How does it manifest in different ways among different people in different environments and at different times? What does it mean – for the person, for those around them, for society? What can we do to help? And so on…

– Autism understanding – understanding that autistic people a) exist(!), b) should have the same rights as everyone else, c) should be valued for their difference, all in a bid to improve the lives and status of autistic people in society, for the ultimate benefit of all.

Efforts are being made to bolster autism awareness and acceptance (and there’s even a burgeoning autism appreciation movement), but how do we achieve these admiral goals? I’d argue that the number one way is through improving understanding. You don’t necessarily have to understand to be aware of, accepting or even appreciative towards autistic people, but it certainly helps. Though it may seem deceptively simple, understanding is quite a powerful concept. If you do it properly, with real commitment to finding out what things are like from another person’s perspective, I’d argue it’s almost impossible not to lead to positive things.

You probably haven’t failed to notice that Autstanding looks and sounds a lot like the word “outstanding”. This is coincidental, but a happy one I feel, because of some of the following potential implied meanings…

Most obviously, it might suggest that autistic people should be thought of as outstanding in the sense of being above and beyond non-autistic people in a positive sense. This makes me feel slightly uncomfortable (autistic pride gone too far), but still, it’s so far removed from most people’s conception of autism, perhaps it’s useful to be slightly disrupting in this way. Another (and I think more useful) perspective is to take a more literal meaning of “outstanding” in terms of “standing out”, which autistic people often do, whether they intend to or not. Many autistic people can’t help but stand out, and this shouldn’t be seen as a bad thing, in an ideal world it would be encouraged. We’d certainly benefit from more autistic people standing up/out to get their voices heard. Additionally, “outstanding” can be thought of in terms of an unresolved issue still requiring a lot of work, which certainly applies to autism at this current point in time. Finally, as “aut” comes from the Greek meaning “self”, Autstanding could be read as “self-understanding”, which is surely a valuable thing for autistic people to achieve (and all people in general of course).

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It’s exactly one year to this day since I received my autism diagnosis (and about two and a half years since I first properly came across the concept of autism/Asperger’s Syndrome). In honour of this milestone, I’m kicking things off on this blog with a discussion on autism discovery and diagnosis, covering both my own experience as well as hopefully providing useful information and perhaps some encouragement for others in a similar position – whether you’re contemplating or trying to get a diagnosis, currently undergoing the process, or have recently been diagnosed and you’re in the midst of processing it all.

Of course, I can only write about my own experience and perspective on that experience. Every person will have their own story of discovery/diagnosis and their own unique reactions, so not all of this will apply to everyone, everywhere. I’m hoping there might be something useful here to others. If not, it’s at least quite a cathartic process simply for me to write all this down!

Please feel free to leave comments – I’d love to hear about your own experiences and perspectives.

All the posts in this series can be accessed below:

• Discovering autism
• Discovering my autistic self
• The diagnostic pathway
• Preparing for a possible diagnosis
• The diagnostic appointment
• Post diagnosis: the immediate aftermath
• Processing the diagnosis with time (where I am 1 year on)

The post Autism discovery & diagnosis series appeared first on Sian Atkins.

In this post (and the next) I discuss the pre-diagnosis circumstances leading me to:

a) first come across the concept of autism/Asperger’s Syndrome (in any meaningful detail, and beyond the stereotypical representations which aren’t necessarily that helpful)

b) come to the realisation that I was very likely autistic.

In discussing these two aspects, I’ve tried to merge my own personal experiences with more general information that will hopefully be more widely applicable to people out there in a similar situation. This first post focuses on how I initially discovered autism and then gradually broadened by understanding up until the point where I could see a lot of the traits in myself. 

My personal experience

So, first things first, how did I initially encounter the concept of autism? Well, I knew that a thing called autism existed. I’d also been perhaps oddly quite fascinated the few times that I had encountered autism, such as when I watched the BBC documentary “Living with Autism”. Learning a little about autism and seeing the autistic people in the programme, I felt like something about it all spoke to me in some way. I felt I was perhaps a little similar to some of the people featured, but it never for a moment occurred to me that I might actually be autistic. This was largely because virtually everything I’d been exposed to (which admittedly was not much) was based around the more classical stereotypical autism – the image that most people have in their minds when they think of autism. 

That was until I discovered Asperger’s Syndrome. Again, I’d heard the word before and I think I realised it was sort of related to autism, but I knew so little of substance. Even when I did begin to learn a little more, I never seriously thought that it might apply to me. I very much had an image of a male in my mind, perhaps someone very nerdy who loved maths and was some sort of computer genius… I first properly encountered the concept of Asperger’s over on Penelope Trunk’s blog. She’s an American entrepreneur who writes about a wide variety of topics and most of her posts have nothing to do with autism, except for the fact she happens to be on the spectrum herself. I read the few posts she had written about Asperger’s. I read them for fun really and found that I really enjoyed her very open, honest approach and blunt writing style. But it never occurred to me to reflect on why I was so interested! Eventually, I happened upon a couple of her posts that spurred me for the first time towards considering autism as a possibility in myself. One contained a link to the AQ which I took (and subsequently retook a few too many times!). I was quite surprised and a little scared to see how highly I scored – far above the cut off point for a potential diagnosis. The second post was about spotting the signs of autism in women and it was this which led me to start looking into female autism specifically and start broadening my whole conception of what autism can look like.

Over the next few months, I delved further into learning about autism, developing a better understanding of how it manifests in adults, especially females. I did a fair amount of research at this time, learning the basics such as the official diagnostic criteria, the early “warning” signs of autism and taking various online tests. But in the midst of all this, what actually stood out for me most were all the small, slightly unusual things about myself that I’d never been able to explain (or that I’d even thought warranted an explanation). Things like loving to wrap myself tightly in blankets, walking on tip toes, difficulties with handwriting, occasionally reversing “I” and “you” in my head, having messy hair, not being at all feminine, having a complete disregard for fiction (despite loving to read), and on and on. I found these small discoveries to be especially meaningful, even though they might seem kind of far off the really core diagnostic criteria. I think my reasoning went something along the lines of “these things are so small and specific and sort of odd, what are the chances I’d find people writing about them on the internet if they didn’t mean something?”. It all seemed very coincidental for so many small, seemingly disparate things to be connected under one umbrella concept. So finding out these quirks I had (and sometimes hadn’t even been consciously aware of having) were potential signs of autism was actually what convinced me the most!

Three resources really stick out to me as being light bulb moments during this time, greatly encouraging me to seek a diagnosis and giving me confidence that I was heading in the right direction. First, I found watching YouTube videos of autistic adults, especially other women, to be hugely valuable. Not only did they provide useful information, a sense of validation and emotional support, but actually seeing these people in front of my eyes (albeit on a screen) gave me my first exposure of what autistic adults can actually be like. I saw parts of myself in many of them and was left with the inescapable conclusion that if these people were autistic, that meant I could be as well. Second, is the first book that I read on autism – Rudy Simone’s Aspergirls. It’s a great read and full of illuminating information, but it was the table of traits at the back that really blew me away. Apart from a very small handful of points, it was like she was describing me. The whole thing felt very uncanny and it gave me a lot of confidence about being right. The third resource that I kept going back to was the Musings of an Aspie blog by Cynthia Kim which contains a tonne of great insight and advice, especially for females on the spectrum.

General advice when it comes to discovering autism …

How do people typically learn about autism? If an autistic person is not identified in childhood, then as an adult they might learn about the concept in some of the following ways:

– A direct, personal connection with autism, whether that be through having an autistic relative (quite often a child who’s been recently diagnosed) or perhaps even through working in the autism field.

– Learning about autism in the media, whether it be online news articles, blog posts, documentaries, films, campaigns.

Discovering autism can occur by pure chance and come completely out of the blue. Or, perhaps more likely, the person has spent some time trying to figure out why it is they feel how they do. Researching various possibilities they eventually happen upon autism as a potential explanation. Of course, the people around them – partners, family, friends, medical professionals – might bring it up to the person as a possibility as well.

Personally, I think an autistic person at least knowing they are autistic, even if this doesn’t lead onto a formal diagnosis, is a very valuable thing in most cases. This is one of the main reasons why increasing autism awareness in society is important – so that unidentified people stand a better chance of discovering their true selves. The more information there is about autism out there, the better. Luckily with the internet, it’s never been easier to learn about autism – to stumble upon it by accident or to develop your understanding once it’s actually on your radar. But a big obstacle can sometimes still remain. An unidentified autistic person may feel what they’re learning about autism doesn’t really hold much relevance to them. Even people who know about autism, and sometimes even those immersed in the world of autism (e.g. Sarah Hendrikx comes to mind) may not immediately realise that they themselves are on the spectrum. So the quality of information is really key as well, especially for adults and for females where the signs may be quite subtle and well-hidden (even from the person themselves).

In the next post, closely tied to this one, I’ll be discussing the personal circumstances that led me to consider autism as a serious possibility in myself, as well as providing some more general advice that might be helpful to others currently going through a similar process of discovery.

The post Discovering autism appeared first on Sian Atkins.

This is a follow-up from my previous post, “Discovering Autism”. It continues the discussion around how I gradually came to the realisation I might be autistic. Then it provides some more general information that might help others who are on a similar pathway. 

My experience

I’ve talked about how I first discovered and learnt more about autism as a concept in general. But why did I think that I might be autistic in the first place? If there’s one big thing that triggered the whole process for me it’s my sensitivity to noises. This is what I initially went to the GP about and it’s definitely what gave me the impetus to start talking about autism-related issues to professionals. Moving to a noisier environment than I was used to, I became increasingly sensitive to the certain types of noises I was being exposed to (namely traffic), leading me to become stressed and even more sensitive in a vicious downward spiral. After doing some research online, I came across the concept of sensory sensitivities and sensory processing disorder. I learnt how common sound sensitivity is in autism, including some of the very sounds I find particularly bothersome. I also became more aware of other sensory issues besides auditory ones – sensitivities that I clearly have but had never really thought of as a thing. They just seemed normal to me and I’d assumed most people perceived things in a broadly similar way. After that, it didn’t take me long to come to the realisation that sensory issues are actually a core part of autism. Beforehand, I’d only really thought of autism as posing social communication difficulties. So when these two apparently disparate strands came together, I was quite amazed and convinced I must be onto something.

In terms of why autism spoke to me in the first place (before ever learning about the sensory side of things): I’d certainly experienced difficulties around social aspects, although I’d never quite known exactly what the issues were or how to explain them to myself, let alone others. In short, it was seemingly very easy for others (and myself) to chalk up my behaviour and experiences to introversion and shyness. Whilst both of these ring true, there clearly was and is so much more going on – things that learning about autism brought to light in a very exciting, slightly scary and extremely validating way. It explained my difficulties making friends and holding down jobs, my passionate interests and hyper-focusing tendencies, my dislike of change, love of routine and strong need for plenty of downtime. 

You might be wondering how I felt at this point. That’s quite a hard question to answer… It deals with emotions which, like lots of autistic people, I find hard to untangle and identify for myself, let alone start to articulate to other people (although writing things down is a definite help). I will do a dedicated post later on in this series about making sense of emotions post-diagnosis. As for how I felt after discovering I was probably autistic, but before getting a diagnosis or even starting down the official pathway… I felt mainly very excited and grateful at having found a potential explanation. Very intrigued to learn more about autism. Validated and comforted to realise there were lots of other out there like me. At the same time I had quite a lot of apprehension, uncertainty and doubt about the whole thing and where it might lead.

If you’re interested, you can learn more about the backstory leading up to my own autism discovery/diagnosis over on the About page.

General advice

If you’ve recently (or not so recently) come across the concept of autism, think it might apply to you and are in the process of learning more about your (potentially) autistic self, here are a few guidelines that may help with navigating all the information out there.

Above all, I’d say don’t just look at the diagnostic criteria. It’s written to cover the entire autism spectrum and focuses on the most stereotypical behaviour. It’s arguably biased towards children and males. (Plus the language used will make you feel there’s something seriously wrong with you!). It’s really important to complement “official” knowledge with articles, blog posts and videos, especially content created by autistic people themselves, content that provides plenty of anecdotal evidence and insight that will likely give you a better feel for what it actually means to be autistic.

Steps to discovering an autistic self:

– Bearing the above point in mind, do have a look at the DSM/ICD criteria. Just don’t stop there. You might also want to consider researching some of the screening and diagnostic tools out there. There are quite a few, though not all of them will be relevant. A popular one is the Autism Quotient (AQ), especially in the UK where it’s used quite widely as a screening tool in the NHS.

– Read and research as much as you can. There are books, blogs and research studies galore on autism. A good mix of academic/professional information and personal accounts is best. You can check out my Links page (currently under development) for a comprehensive list of places where you might want to start.

– Adults should bear in mind that a lot of the information out there is written with autistic children in mind. Autism, of course, is not solely a childhood issue. It can, does (and must) change and present itself differently as autistic people develop. Try to think back to your childhood to see whether you might meet the criteria for the early signs of autism, but bear in mind that various traits can appear, disappear and evolve throughout a lifetime.

– Women should bear in mind that the diagnostic tools along with a lot of received wisdom on autism is based on a profile that was mainly developed with males in mind. If you were to remain narrowly focused on a list of stereotypical male traits, you might well miss your own female autism.

– Once you feel you’ve got a good understanding of what autism is and the many diverse ways it can present itself, try to gather your thoughts and focus in on yourself. I’d suggest using your knowledge to make a list of all the major reasons you think you might be on the spectrum. Perhaps share this with someone you trust so they can feedback and hopefully help you figure out if you’re heading in the right direction. It’s particularly helpful if you can talk to your parents or someone who knew you as a young child. Many professionals require (or at least prefer) to have first-hand early developmental evidence as part of the assessment process.

– If at any point you have nagging questions or concerns, or you just feel like exchanging experiences, seeking out autistic adults is a great idea. The online autism community is a large, active and well-connected one, and there are plenty of people out there willing to offer support and advice for those considering or undergoing diagnosis.

I did all of the above quite obsessively for about 4 months or so in the lead up to my diagnostic assessment. I accumulated quite a substantial amount of notes detailing autistic traits in all their diversity, along with my own interpretations and experiences of these where they applied. I ended up showing a lot of this information to the professional who diagnosed me and he seemed to find it pretty helpful. But I’m skipping ahead! It took me about a year to go from first seeing my GP to having my autistic identity confirmed, a story that’s the subject of the next post.

The post Discovering an Autistic Self appeared first on Sian Atkins.

There are many different paths to arriving at a professional autism diagnosis. Some people are already convinced of their autistic identity, and seeking a diagnosis is simply to validate and confirm what they pretty much already know about themselves. Others may go into the process much more uncertain, on the fence and perhaps confused by the potential overlap with other conditions. They may have done little research (and chosen to do this because they feel too much investigating could potentially bias their own perspective) and be very much relying on hearing a professional’s interpretation. For others still, a diagnosis is sprung on them and all of the associated processing has to take place in the period after. For me, it was a mix of the first and second scenarios. It was very much a case of growing realisation and commitment whilst going through the process itself. This wasn’t because of what I learnt from the professionals along the way (they didn’t say much I didn’t already know really), but because the reality of the situation spurred me to do increasing amounts of research, develop my self-understanding and to take the possibility increasingly seriously, until I reached a point within a few weeks of my diagnostic appointment where I was almost entirely certain and just needed that external confirmation to remove all doubt and make it official.

In this post (along with the next couple), I discuss my experiences along the autism diagnostic pathway. As with most things concerning autism, experiences are highly specific to the individual, in this case influenced by my age, personality (which affected how I went about it and responded) and where I live (diagnostic provisions are still quite variable, especially for adults). The diagnostic pathway varies considerably from person to person, place to place, so this is by no means a representative picture. It reflects the experience of a 20-something female living in a large city in the UK where there happens to be a specialist autism diagnostic service for adults. I count myself as having been very lucky with my experience, but unfortunately it’s all too common for people to face significant hurdles to getting a diagnosis, including lack of understanding and misdiagnoses (especially for females), expense, long waiting lists, miscommunications and general uncertainty or a complete lack of provisioning. Despite the potential difficulties, if you feel an autism diagnosis fits you and would be of benefit in your life, it’s you’re right to seek a diagnosis and it’s well worth trying (and keep on trying) for where it will hopefully lead, even if it takes years. I’d love to hear about other people’s thoughts and experiences around diagnosis in the comments below so we can gather a range of perspectives.

The diagnostic pathway

Stage 1: See your GP

My first step was to talk to my GP about autism… except for the fact I didn’t actually mention autism to her at all, yet still managed to get referred to where I needed to go. I was apprehensive about mentioning the A-word. It would have been the first time uttering my suspicions to any living being whatsoever (besides my cat). I was prepared to do it, but decided to start off in a more indirect way. I think I was interested in seeing whether the GP might think of and mention autism spontaneously in response to a couple of the things I was saying. I mainly talked about my significant and worsening noise sensitivities and a few physical health complaints all of which she seemed to take quite seriously. She asked me how I was feeling in myself, I said “fine”, but she didn’t  waste time in referring me to the community mental health team (although I didn’t know this is where I’d been referred to at the time). It might seem a bit odd or annoying that autism is dealt with in a mental health setting. Even though lots of autistic people do have co-morbid mental health conditions, autism is not a mental health problem, but this is just how things are done, and where autism best fits in the way health services are currently structured. In hindsight, I think she mainly picked up on (and exaggerated) some changes in diet and weight that I’d experienced as this was mainly what the CMHT quizzed me about when I saw them.

My experience is perhaps a little different to most, in terms of being quite indirect, but I still managed to end up where I needed and wanted to be. There’d been no need to mention autism to progress to the next step, and being nervous about doing so meant I didn’t bring it up at this initial stage. However, I think it may have been good to mention it to the GP: it might have made things a little clearer and faster in the second stage (although it still ended up going remarkably smoothly for me). It’s also the case that indirect styles can suit autistic people who are feeling overwhelmed and perhaps going about it in this way made the whole thing less scary and was what actually enabled me to get through the initial stages of the process.

Quite a few undiagnosed autistic people (perhaps even the majority) are already involved in mental health services, and their first step would obviously be to mention autism to their psychiatrist/psychologist/therapist. Given my own experience, I can’t add much about the potential responses of non-specialist professionals. From what I’ve heard it seems to be quite variable, depending on each professional’s level of autism knowledge as well as their personality and how much time they actually have for listening to and seriously considering the concerns of the people they’re trying to help. Some may have an understanding of autism that extends to the adult and female-type presentations, including an awareness that superficial external appearances may not reflect internal experiences, others may be less well informed in this way. I’d recommend taking a page or two of clear, well-organised notes on why you think you might be autistic. It may also help to do a bit of research online – the advice on adult diagnosis from the National Autistic Society is a good place to start. Professionals – especially those you’ll encounter at the primary stage, who probably don’t know a huge amount about autism – should never dismiss your concerns and be willing to refer you onto specialists who know more. Just make sure you come prepared. Bring someone with you if you think it might help your case or communicate your concerns. And don’t give up if you hit road blocks.

Stage 2: Mental health services

After a 3 month wait, I met with a couple of community support workers to discuss the concerns I’d raised to the GP – none of which I’d specifically related to autism in any explicit way. I adopted the same approach as with the GP: I decided to wait and see (rather naively perhaps) what questions they might ask, their reactions, whether they might bring up autism of their own accord. At this stage, I was still very uncertain and overwhelmed by the whole thing. I couldn’t quite believe in myself that I might be autistic. It felt somehow quite absurd, even though it made a lot of sense whenever I thought about it logically which was why I was doing this. I also worried about being heavily questioned, laughed at or dismissed in some way. I didn’t want to be wrong about myself, or to have this potential explanation taken away from me. Also, I knew that mentioning autism to another human being (even a stranger) would suddenly make the whole thing so much more real, something existing in the real world and not just a possibility floating around in my head that I could pretend didn’t exist for a while if I wanted. So on the one hand, I feared that the possible explanation of autism might be taken away from me. On the other hand, I was worried about my potential autistic identity becoming and feeling very real through talking about it to people in real life. I wanted it to be real, at the same time I didn’t want it to be real. I think really I wanted it to be real, but was just scared.

Mainly I still had a LOT of doubt about my suspicions. This was mainly because my knowledge of autism was still not huge, far better than the average person, but nothing compared to where it is now and still could be in the future. This doubt would have been greatly alleviated if someone had mentioned autism to me organically, rather than having to bring it up myself. But this was a rather unrealistic thing to hope for and despite mentioning a few autism-related issues (sensory sensitivities, social issues), it didn’t happen. And so towards the very end of the appointment I brought up the possibility of autism up directly. There wasn’t time to discuss much in detail. The support workers asked a couple of follow-up questions (like whether I find it hard to connect with people, what it would mean to get a diagnosis), then time was up and they left it there and said they’d discuss it with the doctor. For whatever reason, at the time, I didn’t think it would amount to much. I think I also found it very hard to read their reaction – whether they were surprised, curious, convinced or whatever – to me they just seemed quite blank! So I was not much the wiser…

Stage 3: Specialist autism assessment service

I sort of forgot about the whole thing for a few weeks, until I got a letter in the post form the CMHT asking me to fill in the AQ-50. I completed the screening test, scoring about 38 and promptly sent it back to them. Then I received another letter saying I’d been referred to another CMHT, but I was unsure about why this was or to whom I’d been referred. It took another couple of months before I then heard from the new place I’d been referred to and I was completely shocked and scared, yet very excited, happy and grateful to realise it was a dedicated autism assessment service for adults. I’d had no idea up until that point that such I thing existed (and it hadn’t until only 3 years earlier). The letter invited me to attend a pre-diagnostic appointment in a months’ time.

I didn’t do a great deal of preparation for this appointment, at least not by my standards. I think I was still very much in a speculative stage, not entirely invested for some reason, and perhaps not fully considering what a diagnosis might mean for me. The specialist I saw started by asking me why I was seeking a diagnosis. (I don’t really get why professionals are in the habit of asking this – isn’t it self-evident that it’s because the person thinks they are autistic and if they think this it makes sense they’d want professional confirmation to know for sure?) I just said I’ve noticed quite a lot of autistic traits in myself and we launched into a discussion on these. I’d prepared a couple of pages listing my main autistic traits, which she seemed to find interesting. It helped to have the notes to hand as the specialist read through them then and there and asked me some clarifying questions about each point which gave the discussion structure. A big concern I had at this stage was that they preferred parents or other close relatives to be involved in order to help with the developmental history taking, but I was adamant that I preferred not to tell anybody at this time (I’ll explain more about this in the next post).

Again, I had difficulty reading the specialist for signs of whether she thought I might be on the spectrum or not. But in hindsight, I think it was fairly obvious she thought I was. She went away at one point and came back with a whole bunch of leaflets and asked if I wanted to be referred to a couple of autism advice/support services… a pretty clear indication really! Still, for some reason I didn’t pick up on this at the time or even in the weeks after. Perhaps I was still clouded my so much doubt and fear of having the explanation taken away that I wouldn’t let myself believe it until a professional explicitly said to me, “yes, you are autistic”.  And so I spent the next 4 months being pretty anxious about the possibility of not receiving a diagnosis.

It was only after this pre-diagnostic appointment that things really started heating up for me. Whereas before, I’d been a bit hesitant, more or less going with the flow and adopting a “just see what happens” attitude, after seeing the specialist, I became a lot more invested in the process, and to quite an intense degree. I felt I really, really qualified for and wanted a diagnosis. I started doing a tonne of research which led me to make the shift from being around 50% certain, to 80% then about 95% in the weeks leading up to the diagnostic appointment. Next up, I’ll be discussing what I did and how I was feeling leading up to my diagnostic appointment, before doing a post dedicated to the actual assessment experience itself. 

The post Seeking a professional autism diagnosis appeared first on Sian Atkins.

In this post I’ll be discussing the period leading up to my diagnostic appointment – how I prepared in practical terms, some thoughts about how I was feeling, along with a few tips about the process more generally. Some of this might resonate with other people’s experiences or hopefully provide some insight into what it can be like for those considering diagnosis. Of course, this is just my experience – things can and will be different for others depending on a whole host of factors. I’ll try to keep it (relatively!) brief as a lot of what I’ve said in the previous posts in this series applies to this phase of the diagnostic process as well.

Emotions!

The months and weeks leading up to an autism diagnostic assessment can obviously be a very anxiety-provoking time. And not only because it presents a potentially life-changing outcome that would be a big deal for anyone… Most of us undergoing the process are indeed on the spectrum or at least have some autistic-like traits making us more prone to anxiety in the first place. Some of the reasons for this anxiety might include: uncertainty over what to expect during the process, the unknowable nature of the outcome, the often mixed, complex and confused emotions, social anxiety around talking to people especially about such sensitive issues, as well as practical concerns around where you need to go, when, for how long, or completing forms and procedures as part of the assessment process.

As I previously mentioned, my dominant emotion by far was one of fear at potentially not receiving a diagnosis. Whether this be through the psychiatrist revealing that actually I can’t be autistic for x reason. Or through actually being autistic but not having the truth revealed – either through failing myself to convey enough information of the right sort or through the diagnostician being uninformed or prejudiced in some way. Above all, I was very uncertain about the sort of person I might encounter. Not because I had any particular reason to be apprehensive – my experience of the process up to now had been quite positive. I’d just heard second-hand about quite a few horror stories by this point and I think my mind was automatically preparing itself for the worst case scenario… just in case.

I also had some legitimate doubts feeding my fear that I wasn’t in fact autistic. There were several areas of the autism profile which I felt didn’t affect me a huge amount, or at the very least I was uncertain whether or not they did and lacked supporting evidence to be able to say one way or the other. Here are a few examples of where this applied for me:

– Theory of mind and reading people: I felt (and still feel to an extent) I didn’t have too much of a problem with interpreting non-verbal communication (obviously a core autistic trait). But I’ve since learnt from hearing about others’ experiences that this may be a case of not knowing what you don’t know, i.e. not having the “normal” experience to hand to be able to compare with your own and thereby understand what it is you might be missing. (This is something I’m very keen to discuss in more depth in a future post.)

– Then there was executive dysfunction which I truly felt was not a significant issue for me, especially compared to the difficulties many autistics can have in this area. It definitely wasn’t a noticeable issue for me growing up, but it has become more apparent in the past few years and months especially. I’ve also learnt a lot more about EDF in the year since my diagnosis and I’m realising how it can manifest in me, even if it is usually quite subtle and lessened through compensatory strategies.

– I even had doubts about special interests! I wasn’t particularly obsessed with any topic growing up. But I think this was because I was very focused on academics and probably adopted a couple of school/university subjects as special interests (which would make this behaviour seem less noticeable or odd to myself and others). I have had strong interests in more recent years, but still not to the extent I’d consider diagnostic. Ironically, around the time of my assessment I was fast developing a very intense interest in autism. But this was in its early stages at the time (only with hindsight can I see how it’s developed into an obsession), so I didn’t think to mention it to the diagnostician.

So I had doubts about whether I met certain core criteria. But what I’ve increasingly realised since, is that that not every autistic person has every trait, especially not strongly, not even the major ones. Despite these doubts, I knew that so many autistic traits did fit. And the explanation of autism overall somehow just felt so right. If this is also the case for you, don’t worry if there are a few characteristics here and there that you don’t identify with much or even at all. There could be all sorts of reasons for this: not every person has every trait, your difficulties could be very subtle, you could be camouflaging, well-adapted or well-supported, or you could simply lack self-awareness!

Despite the worry, I also had a lot of positive emotions around this time. This included excitement at having found a potential explanation. I was reading and watching a lot about autism and feeling a strong sense of validation and connection in relation to what I was hearing and the sort of people I was seeing. Looking back, I also seemed to be in a bit of a haze during this time, perhaps not fully aware of the implications of where this could be leading. I think I was very focused on the short-term and either couldn’t or wouldn’t let myself see much beyond the assessment in order to prepare myself for the eventual outcome. It’s understandable really as I just didn’t know what was going to happen and couldn’t seem to hold both potential scenarios (diagnosis / no diagnosis) and their implications in my head at the same time.

The people around you 

Another great way to help strengthen your case and calm your nerves is to talk with those close to you. It’s likely parents will be involved in the assessment itself, so it’s probably a good to discuss your thoughts and emotions together beforehand. However, this is not how I went about things at all…

One notable thing I did was to keep my autism knowledge and suspicions all to myself – from the time I first encountered the concept, right up to receiving a diagnosis. I didn’t tell anyone, not even my immediate family, what I thought I knew or what I was doing until the day after I received a diagnosis. So I spent around 18 months keeping everything to myself. This is perhaps a little unusual and I wouldn’t necessarily recommend it to others (especially if they feel they’d benefit from some sort of external support or validation), but for me it felt very right. I don’t regret going about it this way and I’d do it the same way again.

So what were my reasons for this? Being a very introverted and introspective person, I tend to need plenty of time to process things in my own head, and this is often a lot easier without any outside interference. I was worried that bringing others in at this point would overwhelm me and somehow make it harder to think and feel things in a clear, natural and unbiased way (perhaps this in itself has something to do with being autistic!). I needed time to get used to the idea and to figure out how I felt about it. It felt like a very natural thing to do, I felt very happy during this time, so I just went with it. I knew that I absolutely would be telling my family if I did receive a diagnosis – and I was excited (though very apprehensive) to do so. So I didn’t think there was anything too wrong with me taking a bit of time to live with the idea in my own head for a while.

On the slightly more negative and fearful side of things, I also had a lot of doubt about my suspicions, especially in the early days, and I felt I wanted to be sure before telling anyone. I think I feared embarrassment if I turned out to be wrong about myself, and perhaps even being accused of searching for problems where there weren’t any or of exaggerating my difficulties. I didn’t really have any history of discussing these sorts of issues with my parents or even of us acknowledging there were any issues (perhaps because they are both pretty similar to me) so it all seemed like venturing into very new territory.

Practical preparation

Undoubtedly the best way to quell any fears in the lead up to a diagnostic assessment is to do a lot of research to develop both your understanding of autism in general and how it manifests in yourself particularly. Of course, not everyone will want to go this route, perhaps for fear that it might lead to overinterpreting behaviour or creating self-fulfilling prophecies. But if your suspicions are strong and you feel a diagnosis would really help, it’s worth fully investigating for yourself and doing the work to give yourself the best chance of getting the right outcome. Basically, it’s worth trying to make the diagnosis yourself beforehand. After all, nobody can ever know you as well as you and, especially if you do the research, you stand a very good chance of being right about yourself. A lot of adults are virtually self-diagnosed by the time they seek professional confirmation. Hopefully the diagnostician will be good, asking the right questions, listening carefully to your responses and knowing what to look for, but you never know, so it pays to come well-prepared and ready to make your case. 

If you’ve followed the steps to discovering your (potential) autistic self, the next stage is to convey the information to the person assessing you. Obviously most of this takes place verbally, although I’d definitely recommend bringing a few notes if you think this will help remind you of key things to say. I took this to extremes in my own case, coming armed to my appointment with a hefty stack of notes. I’d initially written the notes for my own benefit and my eyes only. But a couple of weeks before my assessment I began worrying about how I was going to convey this information to the psychiatrist. I knew I’d be very nervous and overwhelmed because of the potentially life-changing nature of the occasion combined with the simple fact of being in an unfamiliar setting with a stranger talking about such personal issues. I had doubts I’d be able to do justice to everything I wanted to convey, so I thought I may as well bring along some written information to make things a little easier. You might feel the same, especially if your assessment service doesn’t provide any opportunity to provide written information as part of the process (e.g. through completely an open-ended questionnaire).

In case you’re wondering what my notes looked like, here’s a description. The document contained two parts – the first listing my autistic traits, the second outlining a developmental history describing some of my experiences at various life stages. I came up with some headings for major autistic traits and then explained how I thought they applied to me, along with providing some specific examples where I could. These included areas such as sensory sensitivities, relationships, communication, behavioural, cognitive and physical/motor issues, along with a note on the extent to which these affect my life. To be fair, I also mentioned areas where I felt I didn’t fit the conventional description of autism, or where I was unsure – I wanted the right outcome after all! For the developmental part, I was able to write about my teenage and young adult years no problem, but I had a lot more blanks when it came to my younger self. I did manage to ask my Mum a few questions about this without mentioning autism and this discussion proved to be quite fruitful, though I do think it raised her suspicions a bit! As the document ended up being so lengthy, I then wrote a greatly condensed one-page summary which still managed to capture the essence of what I wanted to say, but which would be much faster to read should the diagnostician not have the time or inclination to go through everything else.

In sum, diagnosis can be a very uncertain and anxiety-provoking time, as well as extremely exciting, thought it all depends on the individual, their personality, past experiences and particular circumstances. Try to prepare yourself emotionally beforehand and throughout the process. Doing plenty of research about autism, expanding your self-knowledge along the way, preparing notes for your appointment and seeking support from those around you can all help immensely. Informing yourself about diagnostic procedures in general and trying to obtain information on the details of the specific pathway(s) open to you will also help combat the uncertainty. Reading about others’ experiences, diverse though they are, can help with this. The actual diagnostic assessment will be the subject of the next post in this series.

The post Preparing for a diagnostic assessment appeared first on Sian Atkins.

The day of my autism diagnostic assessment was to be one of the most important days of my life, and I knew it. I knew that it could potentially change things forever and I had a million thoughts and feelings swirling around by mind and body. But, rather ironically, there was so much going on inside me that it actually made it hard to really think or feel much of anything. On the day, especially, I was in quite a daze, not really feeling properly in touch with myself and sort of on auto-pilot mode so that I could get through. It’s a little hard for me to convey the experience and do it justice, especially since it’s now been 13 months since that day and the associated memories and feelings are (finally) becoming a lot less raw and intense. Then again, perhaps the greater sense of perspective and detachment that time brings will help me write with more clarity. I’ll go through the day chronologically, doing my best to convey what I can remember. Before we start, a word of warning: this post is awfully long!

I arrived slightly early for the appointment, so walked around the streets outside the building for a few minutes before going in. I wasn’t quite sure where I was going (not a good situation to be in at such a time!) so consulted the signposts just inside the entrance before making my way up to where I thought seemed the most likely place. I started to get a little worried when there wasn’t any obvious entrance way or person I could ask. But then, by pure chance, I saw the person I was supposed to be meeting with (recognising him from a photo I’d seen) entering the escalator to go down to the ground floor, so I followed suit. It was then that it became clear I should have reported to the main desk in the lobby on arrival. I couldn’t believe how I’d overlooked the obvious. Anyway, I eventually ended up in the right place, only a couple of minutes late.

The structure of the appointment

I met with a professor of psychiatry at the local university. He does research work in autism, along with other neuro-developmental conditions, and he’d set up a dedicated adult assessment clinic in the city where I live a few years ago. He was clearly well qualified and experienced and I felt glad to have ended up where I did. The first few moments were all a bit of a blur as he led me to the assessment room. I waited there for a few minutes whilst he went to fetch some notes and I used the time to make myself comfortable and get used to the room a bit.

As we began I was slightly surprised that all he had in front of him were a few pieces of blank paper. Having spent a fair amount of time researching the diagnostic procedure, I was expecting DSM/ICD criteria, checklists, schedules, perhaps even the DISCO to be laid out on his desk. This was a little disconcerting, especially as I’d read about how extensive and intensive some diagnostic experiences can be. But after all, this was a free public health service provision not a fancy private evaluation that might involve thousands of pounds and hours of neuro-cognitive testing. Some time after, I also read that reliance on diagnostic tools can actually be a sign of inexperience. I thought about this and realised it made perfect sense: the more experienced the professional the more they’ve internalised the diagnostic criteria and all the relevant questions, so they don’t need the external prompts. Having talked with hundreds, perhaps thousands, of autistic people, experienced professionals build up an internal schema of what to look for. Perhaps they can even rely on their intuition or the feelings they get from the interaction which, whilst not exactly scientific, I’m sure is probably quite a good guide.

He asked me a couple of basic questions to start off with. Based on reading my copious notes he joked that I probably know more about autism than him (at least I assume it was a joke!). He asked why I was seeking a diagnosis. I replied along the lines of “I can’t just go about my life without knowing one way or the other for sure” which he said is completely understandable. Then he explained the format of the assessment, what would happen and roughly how long it would take.

He’d read some of the notes I’d emailed over and said this had given him “a pretty good idea, so it shouldn’t take too long”. Whilst not explicit, this made it quite clear what outcome he was alluding to, and I felt some degree of relief and hope. But I still didn’t take it fully onboard, I couldn’t be sure and needed to wait to hear it said directly, in no uncertain terms. I found out some time later that the specialist nurse from the pre-diagnostic appointment had told him “she has Asperger’s!” beforehand. My AQ and EQ scores were also strong indicators, so he already had a lot of overwhelming evidence. But still, it was important to go over things face-to-face.

What we talked about

First, he took a developmental history, which is self-explanatory but important and it took up most of the session. He acknowledged the fact I hadn’t wanted to involve my parents at this stage which he said was fine. I did have information about the major early milestones and he highlighted the fact I never crawled, whilst everything else was in line with typical development. My main autistic trait growing up since starting nursery was general quietness and shyness with almost everyone outside my immediate family. I did have a few sensory sensitivities, but not to the extent that they were hugely noticeable and I certainly wasn’t aware of them at the time. One interesting trait is that I’ve always had issues with handwriting which I’d never understood until I found out about autism and how it can cause fine motor difficulties. I was told off a few times at school for holding pens incorrectly and still today I struggle to write more than a couple of pages without quite a lot of pain and messiness.

The professional noted that I’d been “extremely well behaved” in most situations, especially school. He also asked about imaginative play. Whilst I didn’t have evidence that I didn’t engage in it, I described my favourite childhood activities (usually quite physical and playing with real objects in a concrete way like with nature, art, sport and building things) and how I find things like acting and make believe hard today. We went through a bit about school, how I felt about it (“quite neutral”) and the academic side. Then he asked about my time at university – the group work, presentations, how I found living in London and the challenges I’d had during a few trips abroad (especially one group fieldtrip where it was virtually impossible to be alone for more than 2 minutes the entire 2 weeks!). We also touched on a few instances of social misunderstandings I’d had, though the most prominent trait was that I preferred to keep to myself a lot.

(I’ll likely do a post about autistic traits in childhood at some point in the future for more details on all this.)

Next up, we moved on to discuss my current autistic traits. Inferring from my notes, he asked if I tend to keep myself to myself. He asked how I’d feel about going to a social event where I didn’t know anyone. Surely this would unnerve most people though? Even if I knew the people I’d still be anxious. He also asked how I feel about small talk.

In relation to repetitive and rigid behaviours, he said my routine appears to be quite fixed and it seems to have become more so with age. He asked how I felt about changes growing up and now. My memory is hazy, though I definitely remember feeling unsettled by big events like moving house and schools, though all this was probably internalised. He asked if anything else makes me anxious besides social situations. I said “big changes” – normal for most people of course, but probably to a greater intensity for me as with a lot of others on the spectrum. I can find smaller changes a bit irritating depending on the situation, but I tend to be quite pragmatic and dealing with them isn’t a major issue for me.

He brought up the common autistic trait of making literal interpretations and asked if I thought this applied to me. I had noted down some examples where I’d recently taken some metaphors literally which were quite telling, but unfortunately forgot to mention them at the time. He tested me with two of his own proverbs, asking if I knew what they meant. The first I did as I’d heard it before, the second confused me greatly, though this was largely because I hadn’t clearly processed the actual words he’d said. In the subsequent written report he noted I had “some slight difficulty with over-literal interpretation of proverbs”. In relation to jokes and sarcasm I explained how I can be a bit slow on the uptake, but the main issue is not one of understanding but of externalising the appropriate response (not knowing what to say, along with the expected non-verbal side of acknowledging, smiling or laughing even if you don’t really find something funny, or even if I do).

We didn’t directly address special interests, though he picked up that I liked to read a lot (exclusively non-fiction) and that I’d really enjoyed certain TV programmes growing up, like Friends (which I watched religiously every afternoon after school). He asked whether there are some things I can talk more about than others. I said yes, obviously, like anyone, but I’m not the sort of person to go off on long monologues (though I do seem to be doing that a bit more nowadays since acquiring my autism special interest!).

He asked what I think my parents think about how I’m doing (adding that this might sound like a bit of an odd question). I was able to answer this well. But having autistic tendencies themselves, they’re perhaps less concerned or notice certain things less compared to what more neurotypical people might think or say. This is a point which he brought up, asking if my parents “are a bit like me as well”.

Towards the end, he asked if there’s anything he’d missed or that I want to add. We hadn’t discussed sensory issues at all up to this point, so I brought it up, emphasising how it’s a big issue for me. He said I was quite right to bring it up (so I’m sure it just slipped his mind, and he is actually aware how core sensory issues are for a lot of autistic people). We touched on noise hypersensitivities, deep pressure seeking, clothing preferences and habits, touch sensitivities, bright lights and issues with food textures.

I also mentioned executive dysfunction which was a bit of a grey area for me in terms of understanding whether or how I’m affected. I listed a few areas like multitasking, working memory and transitions. He didn’t seem majorly convinced for some reason, saying “I believe you when you say you can’t multitask, but leave the rest to cognitive testing” (slightly confusing as there were no cognitive tests to come…)

Finally, he asked if I’d ever seen a psychiatrist before, along with what I presume were a couple of screening questions for schizophrenia and OCD. He asked if I’d ever experienced any depression. In the follow-up he seemed to think it was quite notable that I hadn’t, saying this might mean I must be quite resilient. He added I should perhaps keep an eye out for anxiety and depression in future as they are more common on the spectrum, but then (perhaps seeing my expression) hastily added “but there’s no reason to think they will…!”

What we didn’t talk about

An overwhelming feeling I got from the appointment was one of regret and slight frustration at there being so much I didn’t talk about (although I was greatly consoled by all the written information I’d been able to provide). It was very hard for me to gather my thoughts in the moment, let alone express them at any great length. So I mainly gave quite short responses to all his questions and in the subsequent written report he noted I displayed “little spontaneity of speech” which was spot on. Thoughts and words just weren’t flowing that well, as they often don’t for me in many social situations or under stressful circumstances.

There were a couple of questions in particular where I wasn’t able to give much response, partly because they’re quite complex and hard to answer, but also because I had so much to say about them it was hard to even know where to start. One question particular, “do I find it easy to tell what people are thinking or feeling?”, was quite tricky. I think I said something like “I get vibes from people…”. He asked whether I usually turn out to be right about these. All I could think to say was “I don’t know…”, to which he said something like “don’t worry, that’s fine”. With quite wide, vague and complex questions such as this, and where it can be hard to have self-awareness, I think a bit more probing, prompting and attempts at discussion would have helped.

I was a little surprised that things like non-verbal communication (especially my own) and stimming weren’t mentioned. But then I realised that these are most likely outwardly visible to him (especially in such an intense situation as this one), so there was simply no need to ask, he could just see right in front of him. There was certainly some stimming going on, my eyes were probably wandering about a fair amount and I felt kind of frozen. Also, at one point when I was rubbing the back of my neck and shifting around in my seat to get more comfortable he asked if I was okay. And at the end of the questioning he said “torture over!”, so… yeah.

A few thoughts on the interaction

As I already mentioned, it was hard for me to talk spontaneously or at length. Obviously I was very overwhelmed, but I also felt there was a lack of space for me to be able to think and elaborate. A lack of silences, with too many questions being fired at me and not enough probing or simply waiting. It’s common for me to feel this way though, and perhaps he wanted to simulate as typical an interaction as possible to assess how I usually am. There were also a handful of times where I either didn’t hear a particular word or phrase that he was saying (it just sounded like gibberish to me) or I heard it but only processed the meaning a few seconds later, when it was too late to respond – slightly unfortunate!

One interesting thing about the appointment is that there was a fair amount of small talk on the part of the diagnostician, along with smiles, occasional laughter, a few jokes and some instances of saying things that weren’t entirely true or serious. I felt a little unsettled or confused by some of this, especially the slight tangents where he’d mention something about his own life. I’d expected to be very much focused on the task at hand given the limited time and its potentially life-changing impact for me. I found it quite distracting when I was trying to focus on all the information I wanted to convey! It was also slightly awkward as I found it hard to respond to instances of him doing these things, either verbally or non-verbally. I understood what he was saying, but I didn’t have a response at hand in most cases or didn’t see the point in going down the route of following up on comments he made about his own life.

It was only a few days later that I realised what he might have been doing: that the small talk and talking about himself was potentially some sort of test to gauge how I would react. It could well be a standard part of his assessment process to see if and how people engage (unless I’m over-interpreting everything and he’s naturally like this as most non-autistic people are). I definitely passed (as in “is autistic”) with flying colours!

The outcome and my reaction

After the professional was finished asking questions and without beating around the bush he said to me, “I agree with you, I think you’re right”. It took me a second or two to realise he’d just told me the outcome of the assessment. Then my stomach dropped, or my heart soared, or my head exploded – I’m not quite sure what exactly, but it all happened internally without much external reaction. I think there was a massive wave of relief, but mainly I felt pretty numb and shocked. This was the moment I’d been waiting for, now I knew for sure, this was it: I was autistic! It’s difficult to remember how I felt in the minutes after receiving the news. Was I happy? Did I feel like bursting into tears? Was I exhausted, dizzy, disoriented? Or actually feeling quite calm and serene? Perhaps some combination of all the above; it’s honestly hard for me to recall these moments. I was trying hard to focus on the rest of the interaction and the information I was being given. It was all so much to process.

The professional went on to say that I “didn’t have childhood autism*, which is good”. He didn’t explicitly say what diagnosis he was giving me and I wished I’d asked as I had to wait a few weeks before seeing “has been diagnosed with Asperger’s Syndrome” in writing when a letter came through the post. He added that “it’s quite clear in you” whilst in some others it can be harder to spot the autism, particularly if there is overshadowing by things like depression. (*By “childhood” autism he meant classic autism involving language delay, as opposed to Asperger’s. Slightly misleading of course as aspies or autistics without language delay are still autistic in childhood, whilst “childhood” autism as in classic autism can and does persist into adulthood.)

The follow-up: what he said

It was all a bit of a haze as I sat there and tried to focus on what he was saying for the next 20 minutes. It’s hard to recall all the specifics now. Even at the time and in the immediate aftermath a lot of it simply washed over me. I was still stuck on having heard the outcome. I needed time to digest it, my brain was saturated, it didn’t want any more information. I do greatly appreciate all the information of course. It’s the right thing to do. You wouldn’t want to hear “yes, you’re autistic, ok thanks for coming, bye now”. It was just a lot of things to assimilate all at once.

Some of the things I do remember him saying, include the following… He said “you don’t have a disease”. This was somewhat shocking! “Do people in this day and age think of autism as a disease?”, I thought, because I certainly didn’t. He also said “you’re still the same person” (perhaps because I looked a bit shocked/overwhelmed). He touched on the causes, saying there are many pathways, but genetics plays a big part. From some of the things I said during the interview it sounds like it may be something to do with my parents in my case. He mentioned how autism is characterised by differences in the social brain, but that different people have greater or lesser difficulties in various areas. He also touched on male/female prevalence, the fact he’d recently bought Rudy Simone’s Aspergirls book, and how he agreed with me about some of the questions in the AQ being slightly biased. He talked a bit about what can happen next in terms of post-diagnostic support, mentioned an autism charity in town that runs social groups, made a request for me to participate in a research study at the university, and explained how the diagnosis might help me in future with things like employment.

The follow-up: what I said

Not a lot, barely anything actually! And this is the one thing I’d change about the experience, because it developed into a feeling of regret and missed opportunity in the following days and weeks. In particular, I felt I could have really done with some more verbal feedback explaining the rationale for the diagnosis. Even though I understood why I was being diagnosed (and would have questioned any other conclusion!), I think it would have been nice just to hear things verbalised and made more explicit to help it sink in. He could have summarised what I’d told him and what he’d understood and, even better, offered more analysis and insight from an outsider’s perspective – what he sees as more or less important, what affected his decision most, and so on. Basically I wanted to hear an explanation of how I couldn’t not be autistic!

I did ask him a couple of questions: What percentage of people in his clinic end up with a diagnosis, and also whether they see many females. Each time he asked me “why do I ask?”, in a very nice way, but perhaps the questions did strike him as a bit irrelevant. It definitely wasn’t the information I needed most at that time. Why did I ask these questions given all the much more potentially useful points I could have raised? Well, I hadn’t thought to prepare any questions (my brain hadn’t allowed me to think beyond hearing the diagnostic outcome because it was so hyper focused on that moment). And yet I knew I had an inordinate amount of questions and need for information inside me. I just couldn’t process or think clearly, so my brain just came out with what it did!

The immediate aftermath

The diagnostician said “it was nice to meet you” and I thanked him as he showed me out the building. As I stepped outside it was like stepping into a new world, cheesy as this sounds. I felt very bizarre, like I was a different person in some way. I couldn’t look at all the people around me (too overloaded), I felt too many eyes on me and became self-conscious about how these strangers were perceiving me. Could they tell I was different in some way? I was thinking about myself differently and assuming others might be as well. Of course, I appeared and acted just the same as always, but inside I felt weirdly free, validated, relieved and happy that I finally had answers.

The town centre was too much, too noisy, too busy. I was in a complete daze and went to wander around the park a bit before making my way home. I determinedly avoided seeing anyone and went straight up to my room isolating myself for as long as possible. I had an unstoppable urge to write things down (which marked the start of an enduring habit ever since), thought a lot about how I would tell my parents the next day and then went to bed shattered and overcome by too many confused and un-/semi-processed thoughts and feelings.

To summarise this rather long post: Minus a bit of regret and frustration on my part at finding it hard to talk at length, it had been a pretty positive experience. The build-up period and anticipation had been going on for so long, I felt a bit sad it was all over. I was slightly disappointed the appointment hadn’t been a bit longer and more in-depth, involving more feedback from the professional about my traits and the rationale for the diagnosis. But all in all, it went well, I felt lucky to have avoided any difficulties along the way and most important I got the outcome I was looking for. After so many months of waiting, it was over. And whilst it would take me many more months to process what had happened (segments of the appointment were going round and round in my head until about 6 months later), it was now time to move onto the next stage in my autism journey – post-diagnosis!

The post Autism diagnostic assessment appeared first on Sian Atkins.

I could write an entire book about the impact of receiving an autism diagnosis, detailing both my personal experience alongside more general reflections on the process. But I’m really going to try to condense things down (or I’ll be here forever) and try to accept that a blog post – even a whole book – could never really do the experience justice. (Update/warning: This didn’t work out and this is one of the longest posts yet.)

In this post I discuss:

– My initial emotional reaction following diagnosis

– Some thoughts that were at the forefront of my mind – about autism, myself, the label, other people

– The follow-up post-diagnostic support I received

Then, the last two posts in this series will provide:

– An overview of the varied emotions that can occur post-diagnosis, with some thoughts to help with processing or reframing them

– Thoughts on how things have progressed for me 18 months on, with a focus on some of the more concrete, practical changes that can result from an autism diagnosis

The days and weeks following my diagnosis (and disclosure to my immediate family) naturally brought about a number of intense shifts. These were mainly internal shifts – in terms of how I was feeling, what I was thinking – but also more concrete changes in terms of what I did day-to-day (though on reflection I was remarkably quick at returning to my usual routine) and my interactions with those around me. Looking back, it was a pretty confusing time, full of contradictory thoughts and emotions. After I got over the initial shock and recovery phase and gradually became more used to my newfound identity, I found the positive emotions came to the forefront and on the whole I felt pretty validated, liberated, even excited.

The immediate emotional impact

The first few hours following my diagnostic appointment were spent alone recovering from the intensity of it all. I felt very physically drained, almost ill, like I was recuperating from an episode of flu. I became extremely sensitive to noise and lights. My entire body was achy and tense and my skin had a horrible crawling, almost burning sensation a lot of the time. My head was filled to capacity incessantly replaying events, thoughts and snippets of conversation. Initially, I could barely look people in the eye or talk to them much and was overly blunt or sensitive when I did. I lost some capacity and interest in doing a lot of daily activities or thinking about anything other than my diagnosis. In short, I seemed to have suddenly become a lot more autistic and was continually noticing everything about myself that seemed autistic.

Emotionally, I certainly felt very relieved. Other than this my feelings were quite numbed and muted at this early stage. Then I told my parents everything, which triggered a definite shift in how I was feeling – from the bubbling excitement that characterised the pre-diagnosis period, to a state of more confused and negative feelings. In hindsight, I think disclosing was a lot more emotionally intense than the internal process I went through with discovering autism, and even with receiving a diagnosis. The process up to this point had been life-changing of course, but it had somehow felt quite easy. This was probably because I felt so positive about the discovery/identity internally and I only had myself to deal with.

Not that my family’s reaction was troubling in anyway. It’s just that disclosing for the first time and to the most important people in my life made the whole thing seem suddenly so much more real. Reality hit and it unleashed a whole barrage of emotions. It was now outside of myself, affecting other people, beyond my control. I was externalising everything I’d found out about autism and myself (or at least trying to), dealing with varying reactions/non-reactions, and this seemed to be influencing how I thought about autism and about myself in the process.

Interactions are powerful things. Witnessing and trying to make sense of other people’s perspectives and reactions – even merely being in the presence of people I’ve disclosed to – had a major effect in informing how I felt. Moreover, there seemed to be quite a significant difference between how I feel about autism/being autistic (mostly very positive) and how others and wider society perceive it (often negatively). Even though I tried hard to maintain awareness of this, to avoid internalising certain views or ways of thinking, I found this discord unsettling. I could see how people could all too easily use the autism label to make assumptions about me that were beyond my control and perhaps in direct conflict with what I actually think and feel and how I experience being autistic.

With something like autism, where there is still a lot of stigma and so many misconceptions, it can become quite toxic to read, hear and feel some of the things being said and written. This affected me, and still does of course, but I’ve increasingly learned the importance of filtering what comes in from the outside. Of course, give people the benefit of the doubt. Listen to and respect what they have to say. But then rationalise, critique and re-frame the things that feel wrong or bad and seek out the positive. This seems to become a lot easier the more knowledge a person gains about autism. Seek out people writing from a neurodiversity or social model of disability perspective or self-advocates standing up for autistic rights. The online autistic community in general is usually a pretty good place to go to feel better about things. I think it also helps that I’m naturally quite a critical and questioning person who does enjoy critically analysing things, especially at the macro societal level. If I can find a logical argument or explanation to counter something that feels troubling, then I feel better. I’d often crave alone time and need to write a lot to make sense of things so I’d feel more emotionally settled again. This usually worked a treat. As if the mere act of writing the words and intellectualsing – thinking about what I was I was feeling – made the feelings magically dissipate to a more comfortable neutral level.

A final point about other people before moving on: I sometimes found it slightly tricky to tell what people were thinking and feeling in relation to my diagnosis. Perhaps it’s just paranoia, but I’d get a nagging sensation there was some disconnect between what people were saying and what they really thought. So, overall, it seems there are some autistic traits – emotional sensitivity, theory of mind difficulties, alexithymia – that can directly influence the post-diagnosis stage, perhaps making it a little tricky to navigate in some ways. This is unsurprising of course – autism informs pretty much every aspect of an autistic person’s existence, especially during times of change, anxiety and strong emotions.

***

As the days turned to weeks I experienced a massive mix of thoughts and feelings that were pretty hard to unpick, identify or explain to myself or others. Also, things did not progress in a linear way and I never knew what stage in the process I was at I supposed to be at. I would go back and forth between feeling certain things, often for no identifiable reason, or experience very delayed reactions. I only became properly upset once, and this was completely out of the blue a whole week after my diagnostic assessment. It was very hard to understand what precisely was upsetting me. Regret about the past? Fear about the future? Sadness about certain difficulties? Something about the diagnostic process? Something about people’s reactions? Or just general overwhelm? It could have been any or all of these things. In any case, it would probably have been better to simply try to accept the way I felt, to sit with it for a while, rather than to obsess over analysing too much. Sometimes I even think it was the confusion about what I was feeling – not being able to name, fully inhabit or adequately express the feelings – that was more upsetting than the actual emotions themselves. Knowing what I do now, about alexithymia especially, I should have expected to feel confused and a bit uncomfortable. My emotions somehow very intense, yet strangely muted at the same time.

In hindsight, I experienced a bit of an emotional dip post-diagnosis/disclosure. This is pretty common of course, especially (I imagine) for those who receive a diagnosis out of the blue. I remember feeling slightly bad about the fact I was feeling a bit down. I didn’t want to view autism as a negative thing, I knew this wasn’t how I felt, and I didn’t want to convey this to others. But I don’t think my negative emotions were really about being autistic per se. They were more to do with worry about other people’s perceptions (which has thankfully faded with time) as well as some sadness and fear about past and future difficulties related to living in a largely non-autism aware/friendly society.

Following this dip, people tend to experience an upward trajectory as positive emotions and a greater sense of stability come to the forefront the more time goes on. This was definitely the case for me and I remember drawing a diagram of the emotional rollercoaster I felt I’d experienced at the time: up, then down, then back up again (this time higher than where I’d started). It’s a huge over-simplification of course – the process is not so rigid or linear. For example, there were times only a few days after my diagnosis when I felt remarkably normal as if nothing had changed and I questioned why I wasn’t acting more affected by what had happened. Had I properly processed everything? Wasn’t I learning or changing as a result? And now, more than a year later, I can have sudden bouts of feeling very intense about the whole thing. The emotions are still very raw, bubbling away under the surface and can be quite easily triggered. I’ve noticed this is often linked to times when I venture outside my comfort zone and my difficulties suddenly become apparent via the effects of the sensory, emotional and cognitive overwhelm that usually comes from being around people I’m not used to or in unfamiliar environments – especially if the event itself is autism-related. In fact, even reading an article or watching a documentary about autism, if it’s particularly powerful or relevant to my own situation, will make me emotional and completely consume my mind for a few hours.

***

Here are a few thoughts that were on my mind around this time.

I imagine they are all pretty common, so might provide some indication of what to expect in this early post-diagnostic stage.

• Doubt. I still had an inkling of doubt in the first few days after my assessment. I was honestly still not 100% certain. I hadn’t undergone the hours of questioning and tests that I knew were involved in some diagnostic processes. A small part of me feared I’d overinterpreted my behaviour and provided too much evidence, so that the professional virtually had no choice but to diagnose me! I tried to rationalise and focus on the fact the diagnostician was clearly very experienced and seemed pretty convinced. The doubt faded with time. It faded as I started to discuss things more with my Mum, especially my childhood and her impressions of me. It faded as we realised with increasing certainty that she was also on the spectrum, as well as her own mother. It faded the more I learned about autism, the more I reflected on my past, interpreting things through an autism lens and through becoming a bit more self-aware. In fact, nowadays, I find it more and more amazing that it wasn’t picked up earlier or that I didn’t immediately identify when I first came across the concept.

• Increased sensitivity (or “why am I becoming more autistic?”) This was and still is a big one for me, and I could go into a lot of depth analysing all the potential reasons for it. It does seem to be quite a common pattern though, especially amongst the late-diagnosed. My sensitivity (especially to noises) has been on the increase for a while – a big factor that led me to seek a diagnosis in the first place – but this intensified to a whole new level post-diagnosis. Then there was a heap of other things as well, from increased executive functioning difficulties and super intense focusing on interests, to more rigorous stimming and reduced tolerance for being around people. There are probably a few reasons for all this.
  • First, heightened awareness and knowledge of autistic traits may mean I focus on them more. I’m so much more aware of how and why I am bothered by things. This is good, but may also make me more sensitive and intolerant as well, both emotionally and physiologically.
  • Second, I gained deeper knowledge about sensory processing issues and the problems it causes me leading me to use more ear protection, which I love. BUT, blocking out noises has most likely contributed to making me more intolerant due to reduced exposure and a sensitisation process and I now feel totally reliant on using ear protection in quite a few situations (I’ll be talking a lot more about this in future posts). The stress of this seems to have had knock-on consequences for my other senses too, especially visual and touch.
  • Third, I think I felt more free to be myself (whether in terms of airing varying grievances or indulging in things like special interests or stimming more), at least at home and around my family.
  • And fourth, receiving a diagnosis has initiated a big period of change in my life, if mainly only in terms of internal emotional and psychological change. Even if I wasn’t always aware of the impact, it took (and still takes) a lot of emotional and cognitive resources to process which I’m sure must be affecting my senses, executive functioning, social motivation and general tolerance.

• Autism as a new special interest. I’d obviously been very interested in autism pre-diagnosis. But now that I knew for certain, I no longer felt the need to hold myself back. I had so many questions and a need to understand. In fact, I felt quite uncomfortable, even fearful, that I didn’t know everything there was to know. So I ordered multiple stacks of books, dived into reading and researching online, and haven’t looked back since. This has been invaluable in terms of helping me develop more self-awareness and find new coping strategies, as well as understanding others (both the NT majority and other autistic people) and in becoming more sensitive to difference and disability in society in general. It’s provided me with a strong sense of focus and purpose and connected me with a whole new community of people. Plus it’s a lot of fun!

• Increased self-awareness and seeing myself in a new light. I was initially quite self-conscious about my new identity as an autistic person, including around my close family (though this faded pretty fast). Since being diagnosed I find myself having more moments of seeing myself from other people’s perspectives. I had a pretty good level of self-awareness beforehand, but learning about autism gave me even more and, most crucially, the explanation behind the behaviour I was noticing in myself. This applies to social situations, especially. If anything, being diagnosed has made me even more self-conscious and hyper-vigilant due to heightened awareness of everything I do or don’t do and why. But at the same time having this framework for understanding has also made me care less (though I’m still working on this) and be more accepting of what I find hard, which is helping a lot.

• Disclosing and the people around me. This was obviously huge, especially as it had deep personal implications for some of the people in my family as well. I will do a separate post on disclosure when this series is complete. For now, I’ll just say that telling my immediate family really did alter my experience, adding new perspectives and emotions and complicating the picture quite a bit. But the more time has gone on, the more we’ve talked and the more understanding we’ve developed, it’s undeniably been a very positive thing for everyone concerned.

Post diagnostic support

I saw the specialist nurse for the second time a couple of months after my diagnosis. Around this time I still felt some regret at how I’d been too overwhelmed or unprepared to ask questions or seek enough feedback at my diagnostic appointment, so I prepared really thoroughly for this appointment and came armed with a few areas to query (it was still hard for me express myself at length though ☹). She did her best to answer some of my questions, but clearly it would have been better to have asked the professional who diagnosed me. It also reinforced for me the notion that I’m the person who knows myself best. Professional outsiders who only ever spend a couple of hours with you can only provide so much insight. Here are some of the things I asked about (some of which seem quite naïve or pointless in hindsight!):

– I felt a little unsettled by the lack of verbal or written feedback I’d received. I mentioned this and learned that the diagnostician had indeed written a report to my GP which I hadn’t seen (and which I later asked my GP about and was able to read )

– I wanted to know more about the rationale for the diagnosis, so I could get an outsider’s perspective on my autistic traits which might help inform my own self-understanding.

– I was pretty concerned around this time about where exactly I fell on the spectrum. I kept wondering “exactly how autistic am I?” How do I compare with all the other people on the spectrum she’s met? At this early stage I also felt a bit weirdly but understandably self-conscious about “appearing autistic”. It can be hard to have complete self-awareness about this, so I was quite interested to know her thoughts being a trained eye. She quite rightly made the point that you can’t necessarily tell from appearances or outward “functioning” how autism affects a person internally. I now realise this is a pretty impossible question to answer anyway really

– I wanted to question her about the fact I feel I don’t identify much with some common traits (like the ability to read people) and if it was normal to have quite big areas you don’t feel noticeably affected by. She said it absolutely is and kept reiterating how very different all the autistic people she’s met are from one another. You certainly don’t need to have every autistic trait to be autistic. Apparently she’s met some autistic people who are even “better” in certain stereotypical areas (such as eye contact) than some NTs, especially women – some of whom camouflage so well you’d never think “autism” in a million years

– I wanted to ask her if she’d heard similar things from others about some of my experiences, like constant conscious processing of social situations. We talked a bit about a few different aspects of autism and how things like social anxiety, intellectualising, self-awareness and intelligence could be linked.

– I told her about my concerns with sensory sensitivities getting more intense. She said stress would be quite a common reason for this, whilst a simple lack of awareness could explain their seeming absence when I was younger.

I realise now I couldn’t necessarily expect her to give me all this information. At this stage I was at my height in terms of wanting to know things and meet and learn things from others. Yet I felt I was lacking information and answers. At this point I still hadn’t done enough research to develop a fuller understanding of a lot of aspects of autism, or even met any other autistic people. Now, thankfully, I feel a lot more informed (or I at least understand enough to realise that some questions can’t really be answered anyway).

The specialist nurse also asked me a bit about the impact of receiving a diagnosis. I tried to explain some of my emotions, but this was very hard to do at length. She talked a bit about the positives commonly associated with autism and how she envied some of them. I talked about disclosing and finding out my parents also have high levels of autistic traits. She was very pleased that I’d finally told them! I told her how obsessed I’d become with autism and she asked if I had any recommendations for her book list. I fed back about the service, saying I was very grateful for it, but that it could be improved through providing written feedback (which surely should be standard practice?). And finally she referred me to a couple of autism services and also suggested I see an audiologist about my noise hypersensitivity. All in all, it was quite interesting, even if it didn’t fulfill my overly high expectations.

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