When your heart says pottery teacher but your head says database manager

I have two fairly ‘conflicting’ conditions – autism and bipolar disorder. Apparently they are rarely found together, and I’m pretty sure I’ve even heard some say you can never have both. (Nb. for info, you can and I do.)

Whilst being two very distinct disorders, with different roots and causes, they do interact. When I’m manic, there’d be argument for saying I’m not autistic – or at least some of the outward ‘symptoms’ melt away. My autism and bipolar wax and wane in salience at different times in my life, and it can result in a highly tumultuous relationship with my sense of self.

I think it may be slightly controversial within certain parts of the autistic community to say I consider my ASD a disability, but at times I do. Both autism and bipolar bring disabling aspects along with the beneficial ones. And by beneficial, I mean more the things that I accept as making up part of who I am. As an autistic individual I am honest, kind and loyal. As someone with bipolar I am creative, with a wild imagination and big ideas about the world. Together they make up part of what makes me unique – I don’t follow society’s unspoken rules (because I don’t care for them, and because I don’t actually understand them), I think ‘outside the box’, and I don’t act in any way other than that which comes naturally to me.

The problem for me comes when they do collide, and the fight in my head can become noisy and challenging. At the moment, I’m struggling to decide what I want in life. Spring has sprung, the sun is starting to creep through the clouds and my summer-induced hypomania is slowly coming into bloom. All I can think about is big ideas of refinding myself as an artist, reinventing my whole career plan, blowing all my money on art supplies and turning my house into a studio. But with these big creative plans tends to come a tricky conflict between what I want to do and what my autism allows me to do, as well as where my strengths lie as a result of it.

As part of my job, and my degree, I’ve completed a lot of career-based self-assessment tests. A selection of variations on the kind you probably took at school that told you that you should be a farmer or fence erector (- those are supposedly genuine examples people have told me by the way. Mine came out as librarian). These types of self-assessment tools are designed to help you identify and align your interests and your strengths in the workplace. For me, these always result in a very obvious mismatch – what I love, and I’m energised by, is not what I’m good at, nor what comes easily. My interests say teaching, helping and coaching, and a love for all things people-focused and creative. My skills say numbers, logic, data and tech – and to absolutely avoid all things involving human contact. Whilst some may disagree, for me I identify this to an extent as the fight between my bipolar self and my autistic self. The spontaneous, art-loving carefree (perhaps too much) manic self, being anchored to reality by the social anxiety ridden, logic-driven autistic self. My mind changes day-to-day – some days my dream would be to run an art gallery, complete with lively events and exhibition openings, others it would be to manage detailed archives, where the only contact I have is with things and not people.

I’ve been feeling more and more lately that I don’t know how to accommodate for this misalignment. For example, there are very few careers which are creative, artistic, methodical and logical but not data heavy, focused on helping others but without too much actual social contact, and completely structured and secure without being dull … There’s very little I imagine could fulfil the needs of both my floaty head-in-the-clouds self and my feet-placed-firmly-on-the-ground self, especially as which one is in control rarely stays the same for any length of time.

The title of this post is a clumsy attempt to sum up how I feel. My heart yearns for people and creativity and playfulness, when my head seems stuck in a need for isolation, facts and routine. The very things that energise me make me anxious, and the things I’m comfortable doing bore me, or leave me feeling unfulfilled. I’m grateful that the two sides work in tandem, particularly as I’m sure my autism keeps me far more grounded than I might be without it (although medication also has a part to play in that of course). However there are occasional times like this that I wish they would just get on a little bit better, if just to keep their home in my brain a little more peaceful and harmonious.

PS. There can certainly be a very fine line between personality trait and symptom, and you’re welcome to argue that all of this is just a result of a muddled up personality. All I can say is that I’m the first person I’ve come across in my career studies who has such a misaligned sense of interests vs abilities – but if you feel the same please get in touch and tell me how you manage!

On ‘functioning’

I’ve been aware of a lot of talk recently amongst the #actuallyautistic community on twitter over the use of ‘functioning’ labels, and it got me thinking about my own experiences.

I didn’t find out I was autistic until I was 22. Before then, I was fully aware that I was somehow different, and appeared to find things difficult that others could manage easily – but I mostly put this down to a combination of mental illness and, in my eyes, just being generally useless and not as good as others. As a result, I put a lot of effort into copying the behaviour of those around me in attempt to fit in, and hide my differences. Over time, like many autistic adults, I learned to be fairly good at it.

When I ‘reveal’ to people I’m autistic, I’m told time and time again that they “would never have guessed.” A response that has stuck with me more than any other is when I told someone at work, and her reply was “you can’t have it very bad” – why? because I wasn’t like her son’s friend at school who hits other children.

It’s a very peculiar experience, being told I must be ‘not very autistic’ or that someone would ‘never have known’. There’s a strange sense as if you are meant to take that as a compliment, a thinly veiled ‘well done, you hide it well!’ Because that’s what I’ve realised, functioning labels don’t mean how well one functions in day-to-day life, how one copes or manages with the difficulties life hands them. Functioning is a synonym for ‘ability to pretend you’re neurotypical’.

And of course, we are meant to aspire to be ‘high functioning’. ‘Low functioning’ children, i.e. those who’s autism is obvious to those around them, are trained to hide it better. Those who are ‘high functioning’ tend to be those, like myself, who have forced themselves to fit into societies expectations – people who are meant to take ‘I would never have guessed’ as a compliment.

It’s a difficult position to be in – to be considered ‘high functioning’ but to be standing here saying ‘but I’m not…’ It can appear to others that you want to be considered more autistic than you are, more challenged, as if there’s some pleasure that comes from saying ‘poor me, look how little I cope.’ I faced this same opposition when I told a psychiatrist I wasn’t ready for a re-diagnosis of cyclothymia, I wanted to hold on to my diagnosis of bipolar. People respond as though you should be happy to have the ‘lesser’ diagnosis, because it means you’re suffering less, surely?

The flaw is, no it doesn’t. Having my bipolar reclassified as ‘not as severe’ disregarded and invalidated my real, lived experiences. And what having a ‘high functioning’ label does to me, is forces me to live up to it, whether I’m coping or not. Because people see me as high functioning, and they see me cope, they determine I must always be capable. This makes it harder to explain when things are difficult, or to be taken seriously when you say you cannot do something. Because someone has seen me be able to do something, they think I must always be able to do it, and also that it must not be difficult for me. Because I mask, mimic, and walk out of the room rather than letting you see me get close to a meltdown, I appear to be functioning successfully. But as shocking as it may seem, my end goal is not to be able to pass as neurotypical – like many autistics, I’ve worked on this skill my whole life, as a survival mechanism, but it’s not easy and it’s very often not enjoyable.

I also imagine the same can happen in reverse for those labelled ‘low functioning’ – those individuals may never be given the chance to be ‘high functioning’ in any areas of their lives because they have a big label saying they’re incapable. This brings me back to the ‘low functioning’ child, hitting other children in the classroom. Did you know that I used to hit other children when I got frustrated? I remember getting in trouble for it even in secondary school, at an age where most children are long past hitting. But now, I don’t hit my work colleagues when I’m feeling irritable, do I? I’ve learned that, obviously, that’s not okay to do. I’ve certainly not stopped feeling the internal discomfort that triggered that action as a child, I still get pent up, I still get overwhelmed by my surroundings, but it manifests in different ways. It’s bizarre to compare levels of functioning, levels of ‘autistic-ness’, between a child and an adult. Anyone, autistic or not, changes and develops over their lifetime. Your ‘low functioning’ autistic child will change, and I don’t mean from ABA or training or therapy, but just as a natural development of life. So long as you pay attention to them, help them face the challenges they want to face and comfort them at the times they choose to hold back, you’ll be okay. You don’t need to label their level of functioning, you don’t get to decide what they are capable of – you should just be there to support them at whatever level of ‘functioning’ they inhabit in that moment.

So this is where functioning labels ultimately fail. They pigeon hole, in both directions, and they create a benchmark against which your behaviour is then always referenced.

I am an autistic adult. I have a full time job, I drive a car, I live away from my parents – this is the side of me that my colleagues, friends and acquaintances see. But what only my family and my partner see is that I still sometimes end up screaming and crying on the floor, or banging my head against a wall. I regularly need to excuse myself from the office at work because the noise is too much, I struggle to drive home at night because I can’t cope with the bright lights, and next month I’m having to have two teeth removed because the sensory hell of cleaning my teeth has sadly caught up with me. So when you tell me you’d ‘never have guessed’ I don’t take that as a compliment. When you refer to the adjustments I need in the workplace as just ‘a different working style’ like everyone has, I read it as disregarding the difficulties I experience.

My voice shouldn’t be disregarded because I’ve been successfully trained to appear neurotypical, and reaching this point should not be seen as the end goal for autistics. There needs to be a meeting in the middle, a bit more give from the NT side, to allow for a society more welcoming to all forms of neurodivergence – no matter what someone’s level of ‘functioning’ is in your eyes.

Learning to drive as an adult with SEN: part 2

I split this into two posts because as usual I have far too much to say. To read how I began my driving journey read Learning to drive as an adult with SEN: part 1. 

So, 5 years after I first got behind the wheel of a car, I had my first lesson with my 3rd instructor in July 2015.

Having driving lessons with an instructor that specialised in helping people with needs like mine made a huge difference, so much so it’s hard to put into words (but I’ll still try!) When I was looking for information on learning to drive with the conditions I have I found it hard to find relevant and useful information and advice. For that reason, I’m going to attempt to lay out my own experiences in a way that might prove useful for someone looking for the same information I was after.

Based on experience, here’s my advice on learning to drive with ASD (and ADHD, and dyspraxia, and anxiety…)

1. If you can, find a specialist teacher
Obviously this is the number one piece of advice I can give, based on how much it helped me. Finding an instructor who understands the different ways in which people learn, and can adapt their teaching style as necessary, is a real help. Driving instructors without this experience tend to teach everyone the same way, because that’s simply the way they’ve learned to do it, and that way might just not work for you. Because I myself wasn’t aware of the adaptations to teaching I needed, this made me feel hopeless. If other people found this easy, why did I find it so hard? If you can find an instructor who will identify your needs as a learner, you can tailor your lessons so they work for you.

As I mentioned in my previous post, I found my instructor through a coincidental google search and a bit of relocation up the country, but for a more efficient search process try this website: www.disabilitydrivinginstructors.com

2. Realise the power of positive reinforcement
When I left university I felt like I had barely learned anything in my driving lessons, considering how long I’d been having them, I still felt like I had no idea how to drive. When I moved and had my first lesson with the specialist instructor, I suddenly realised I knew far more than I had first thought. The key difference, was that the new instructor was telling me when I got things right. I have since learnt that it is a genuine teaching technique used by driving instructors to only comment when the learner makes mistakes i.e. learning by a process of fault correction. There is a really clear reason why this doesn’t work for learners with ASD: in life we are used to constantly being told our behaviour is ‘incorrect’ in some way, so we struggle to know when what we’re doing actually is correct. I’m very used to needing reassurance that I’ve done something right, and feeling anxious and unsure when there’s no way to get that reassurance. When I started learning with a specialist instructor it was immediately noticeable that he would tell me what I got right, as well as what I got wrong, and actually say ‘well done’ after things I did well. This made me feel much more confident in my abilities, as it was no longer up to me to judge whether I was doing okay, someone was actually telling me I was. It also really helped me to come away from lessons feeling accomplished, as I had positive memories from the lesson rather than just remembering all the times I was corrected. Fault correction may work as a method for some, but I’d say that for most people with ASD it probably will do more harm than good.

3. Work to a fixed schedule
With both my first two instructors, arranging lessons involved a complicated process of texting when I was free and finding out what options they had available, and trying to fit something in at different times every week. The difference with the instructor I passed with is that I had fixed lessons – same time, same day, every week. If you are able to have an arrangement like this I really recommend it. Firstly, obviously as someone with ASD routine is really important to me, and knowing exactly when my lessons would be every week helped remove some anxiety from the process. It also removed some of the social interaction element, I didn’t have to text or call to arrange lessons because it was already done in advance, which was much less stressful. Finally, it made it harder for me to quit – with my first two instructors it was much easier to just not arrange a lesson, but when I had fixed lessons I had to actively cancel them if I couldn’t make it. That helped encourage me to stick with it.

4. Don’t compare yourself to others
Like most forms of testing we go through in our lives, the driving test is geared towards neurotypicals (as is driving itself!) Statistically, most people around you probably don’t think like you, don’t process information like you, and don’t learn new skills the same way you do. Equally, not everyone is honest – it’s more than likely that at least one of the people who told you that learning to drive was easy, or that they passed first time, is not telling the truth! This is part of the reason I want to be completely honest about my experiences, because I don’t want to add to the myth that it’s unusual to not pass first time, or that learning to drive is always easy. Some people take to driving like a duck to water, some people take years to learn, and both are equally as valid as each other.

5. There’s nothing wrong with learning on an automatic
I passed my test on an automatic. There, I said it. The truth is out.

When I was at school, I remember a girl being made fun of for learning on an automatic. The joke was ultimately that she couldn’t manage ‘proper’ driving so had to take the ‘easy route’. Sadly, at the time, I was drawn into this and took it on as fact.

I had lessons in a manual car up until about 3 months before I passed. When I told my parents I wanted to switch to learning on an automatic, their first instinct was to say something along the lines of ‘but you’re fine with gears?!’ People generally see learning in an automatic car as a backup, an ‘easier option’, and for people who can’t get their heads round changing gear. I’ll tell you now that it is none of those things, and people’s misinformed beliefs are what stopped me from seeing it as an option for so long.

What learning in an automatic car does is free up your brain to concentrate more on what matters. Because of the way my brain works, I easily get muddled up and overwhelmed when I have a lot of processes to consider at once. Removing an element from driving (i.e. changing gear) made me feel far more focussed, and decluttered my my mind enough to allow me to concentrate on being safe above anything else – the absolute most important part of driving.

Once I own a car, it’s very unlikely I’ll need to drive any one other than my own. The car looks the same from the outside as any other car, and the only difference is a small ‘yes’ on my practical test pass certificate. Think of automatic cars like vinyl records vs mp3: in the future, driving an automatic will most likely be the norm. Some people will still drive manuals because they like the feel of it, they enjoy the driving experience, etc, but automatics will represent the general level of technical advancement that cars are at. Does that make sense?

Ultimately, if you think learning on an automatic will help you to learn and to pass your test (which it absolutely did for me) please don’t shy away from it because of pressure from those around you. It’s not the right option for everyone, but it might be the right option for you. And if you’re still unsure, remember there’s nothing to stop you learning and passing on a manual in later life, should you wish to.

6. Don’t give up
Finally, a very simple piece of advice but an important one. I failed two driving tests before I passed one. It took me long enough to pass my practical test that I had to retake my theory as my first one ran out. Despite this, I stuck with it. Each time I failed a test my first gut instinct was to want to give up, which would then turn into ‘maybe I should just take a break’, which over time would turn into a phoenix-like OTT determination to keep going. Out of my misery and tears I made big decisions, one being to rebook my theory and the other being to change to the automatic. Determination and refusing to give up is what got me to where I am today, and if I hadn’t passed yesterday I assure you I’d have come home and booked a new test straight away. If you let yourself get defeated, it makes it much harder to pick up the journey again where you left off when you do choose to do so. To keep going despite set backs is better in the long run, I assure you, even when you don’t believe you’ll ever see the end of the journey.

Overall it’s been an emotional journey that I never imagined I’d see an end to. It still doesn’t quite feel real, and if I woke up and found yesterday had been a dream I wouldn’t be all that surprised! I think if I’d been able to identify my particular needs as a leaner earlier on, it would have been much less of a rocky road, but at least as a result of both good and bad experiences throughout the process I now feel in a position to pass on some of what I’ve learned to others who might need it.

I split this into two posts because as usual I have far too much to say. To read how I began my driving journey read Learning to drive as an adult with SEN: part 1

Learning to drive as an adult with SEN: part 1

I have split this into two posts because as usual I have far too much to say. To read how I eventually managed to get to where I am today read Learning to drive as an adult with SEN: part 2

Yesterday was a huge day for me. As you can see from the cheesy photo above, I passed my driving test – completing a journey I technically started on 6 years ago.

My driving backstory:

I first started driving lessons when I was about 17/18. I think I had about 4. All my friends were learning to drive, some of them had already passed, and it felt like I should be doing what everyone else was doing. I arranged to start lessons with an instructor my friend had used, and I ended up hating every minute of it. It was new and scary and difficult, and every week I had to be trapped in a car with a stranger for an hour while trying to learn how to do it. That was the hardest part for me, enforced socialisation in a confined space. This particular instructor was was very chatty and overwhelming, and after a few lessons I simply stopped texting to arrange one for the next week. That was my coping strategy a lot when I was younger: just ignore the things you don’t want to do and they will go away.

I didn’t start trying to learn again until about 4 years later while I was at university. I had just gotten out of a relationship with someone who could drive, and suddenly realised how hard everything was without someone being there to give me lifts when I needed them. At the time I was also halfway through a course of CBT that was based at a hospital on the other side of town, and had to take a complicated combination of buses to get there every week. As a result, I became sick of relying on public transport, and this spurred me on to return to driving lessons.

I found two instructors in the local area, and arranged to have a taster lesson with each of them. I ended up choosing the more relaxed of the two, because I thought I’d be more comfortable with her, but in hindsight I probably should have chosen the one appeared to be taking it more seriously. The first one arranged a 9am lesson, took my provisional licence details on the day, and spent the entire first lesson getting me to pull up at the side of the road then move off again. An important skill to learn, but a stressful experience. The other instructor seemed more laid back, and didn’t even ask to see my license at any point (perhaps should have been a red flag?) – I chose her because I left the lesson feeling less stressed out. I had weekly(ish) driving lessons with her up until the month I left university, and although I did learn the basics of driving, I never built up enough confidence to get anywhere near booking my test.

I received my aspergers, ADHD and dyspraxia diagnoses during the period that I was having lessons while at university. As it was the one that came first, I briefly mentioned the dyspraxia to my instructor. Like many people, she’d only vaguely heard of it, and didn’t really know what it meant. At this point, I didn’t know much about it either, or how it might affect learning to drive, so it wasn’t mentioned again. I’d also mentioned to her in the past about my anxiety, and how it made driving lessons difficult for me, but the conversation was awkward and uncomfortable and she didn’t handle the issue very tactfully. Because of this, when I was given the aspergers and ADHD diagnoses, I decided not to mention them.

As time went on, I felt like I was really struggling. People around me talked about how easy they found learning to drive, and I seemed to be finding it so much harder than others. Week by week I didn’t feel like I was improving, and the driving still seemed so complicated for me. I started to question whether my differences (my neurodiversities?) might be affecting my driving more than I thought.

I had a quick google search for things like ‘learning to drive with aspergers’ and ‘adhd and driving’. I didn’t find much, mostly parents asking if their children would be able to learn to drive. As usual, information for adults with these issues was hard to find. I did come across a BBC news article: Aspiring drivers with autism taught by Leamington manThis was a slight breakthrough, I learned that there were driving instructors who specialised in helping people with differing needs learn to drive..I just needed to find one in my area.

I sent a tweet out:


A lot of my followers jumped in to try and help, it was great. One link  in particular kept coming back, that same BBC news article. Unfortunately I was based 80 miles away from Leamington, so it wasn’t much help to me. After various attempts to find someone locally didn’t work out, I quickly forgot about it all.

My luck changed quite by chance, when a few months later I graduated from university and moved house to where I’d found my first post-uni job. I had no ties with the area, I wasn’t moving back home or staying where I did my degree, I simply moved to where a job was available. Desperate not to give up on driving, I needed to find a new instructor in the area, and it suddenly occurred to me I was now only about 10 miles from Leamington. I sent a quick email to Halo Driving School and got myself my first lesson booked in for July. I was excited to feel that everything seemed to have just ‘worked out’ and it turns out it really had.

I have split this into two posts because as usual I have far too much to say. To read how I eventually managed to get to where I am today read Learning to drive as an adult with SEN: part 2

Why the NAS #JudgeyFace campaign just doesn’t work for me

If you haven’t seen it, the national autistic society currently have a campaign running on twitter using the tag 

I first became aware of the campaign last night, when someone I follow retweeted a photo with the hashtag attached. I clicked through to investigate, and was unfortunately really disappointed with what I found.

I’m usually a supporter of NAS, but this campaign just felt a bit off to me. I was upset, and I tweeted a quick reply saying as such. I didn’t want to shout at them, I really believe in what they do, but I wanted them to know that not everyone was feeling okay about this choice of campaign.

Today, I had a reply from someone who disagreed with my feelings (which is perfectly okay I might add!) I didn’t want to get into any kind of argument, I don’t think that really works well on twitter, but it did make me want to justify my feelings in writing:

1. The campaign makes light of something that really needs the opposite done to it
This is really the basis of my original reply. It wasn’t a calculated opinion, it was based on my gut instinct when I saw the campaign – I was upset. Fully, real life, feeling sad inside myself upset.

Having people look at me in a judgemental way, as though I’m acting strangely when I’m just acting in the way that is natural to me, is a very real and hurtful thing for me. It does happen, a lot – particularly when I was younger, and less aware of how to ‘act normal’. There were so many times at school that I would say or do something that would illicit a ‘judgey face’, and I’d then spend hours agonising over what exactly it was that I’d done wrong, because I just didn’t know. Having people constantly looking at you like you’re weird, different, not normal, it starts to become ingrained in your self image. It’s easy to start to believe that you are the problem, rather than those doing the judging.

For me, if you’re going to focus on this problem in a campaign, it needs to be done in a way that draws attention to how serious the issue can be for those affected. If someone hasn’t directly experienced it, it’s easy for them to shrug off this issue as not that big a deal. And I feel like that is what these #judgeyfaces reinforce. They reduce the feeling of constantly being judged by those around you down to a silly and light-hearted face and a patronising childish name (‘judgey face‘? really?) It’s potentially all very well making light of something that people already know is serious, but it doesn’t work well when people don’t necessarily already know how big the issue is.

The ‘Too Much Information‘ video worked because it gave an insight into autism to people who don’t experience it. The #judgeyface campaign gives people a completely inaccurate insight, that potentially downplays the severity of some of the negative experiences that those with ASD can experience as a result of people’s misinformed behaviour. When I looked through the #judgeyface tweets, I felt my experiences were being belittled. (This is also how I realised the next point…)

2. Seeing lots of photos of people pulling a hurtful face that is all too real for me isn’t pleasant (unsurprisingly)
After clicking through to check out the campaign, I ended up looking through the hashtag. I eventually had to stop looking, because I ended up feeling overwhelmed and anxious. Unsurprisingly, as someone who has ASD – including a difficulty reading facial expressions and the propensity to get easily overwhelmed by lots of stimulating imagery – it wasn’t pleasant to see picture after picture of people pulling these faces. Above anything, it drew attention to the issue in my own life, it made me feel more aware of how often I do see faces like that in reaction to my own behaviour. This overwhelming introspective thinking eventually left me feeling anxious, feeling as if every one of those faces were directed at me. Although they are obviously well meaning, I feel the photos in the #judgeyface tag are likely to do more to distress those affected by autism than they are to raise awareness in those who aren’t.

3 It doesn’t really explain the point…
And ultimately, that’s the issue. Apart from a few throwaway references to ‘losing your judgey face for good’, there’s little to explain the actual theory behind the campaign. There is a disconnect between the issue being tackled and the method being used to tackle it –  it’s fairly likely people won’t make the link when they see the images. I do understand that anything that gets people to click on the right link can be beneficial, it’s great to get people to a place where they will learn more about autism awareness, but even if they do click through to read more it doesn’t feel like the point is being made strongly enough to be affective.

I’d like to end this by reiterating that I do generally support the work of the National Autistic Society, and I do believe they do some great things. I think this is definitely an important issue to raise awareness of, as general societal attitudes to those with autistic spectrum disorders do tend to leave a lot to be desired. However, personally in this case I feel like they missed the mark.

Starting a new job the aspie way

This week I started a new job. I have taken on a new role within the organisation I already work, so not a huge move but enough of a change to make me anxious. On Tuesday this week I got up the same time as usual, followed the same morning routine, got a lift from the same friend I always do, but at the end of all that I had to walk into a brand new building – and with that the nice, safe routine I’d been cultivating for myself for the past 10 months was broken. Don’t get me wrong, the change was of my choosing – I had to make the decision whether to stay in my comfort zone or apply for a job that related more to my long term goals, and I went for the scarier option. I do feel like I’ve made the right choice, but managing work when your brain doesn’t function like most other people’s will always have its challenges.

Over these first few days I’ve been thinking about the things that both aided and hindered my transition into the new role. From this experience I’ve compiled 4 tips that I think are helpful for someone with ASD in the early days of starting a new job. These are coming from the perspective of an office based job, but hopefully can be applied to a variety of roles.

1. If you have the opportunity to, arrange to meet some of your colleagues before your start date. Bonus tip: make sure this happens during their normal working hours (e.g. over a lunch break).
This is a fairly obvious piece of advice but absolutely one of the most useful. The idea of stepping into a social situation with a group of strangers may seem like hell, but I promise it’s better than your first meeting with those people being your first day on the job. Your first day of work is bound to feel overwhelming in many ways, and removing the sense of uncertainty around who you will be meeting can help towards reducing that. The other benefit to meeting in advance is that you can set a time that you need to leave by (if it is during their work day they won’t be able to stay long themselves) so you can confine the meeting to a set timeframe. This gives you the chance to walk away and reset after a potentially overwhelming situation – your first day will probably be quite busy, so you may not have many opportunities to do this. Lastly, my extra tip with this is to make sure the meeting with your new colleagues is during their work day. This gives you a a convenient opportunity to get an idea of how everyone else dresses, without the pressure of having to dress for the job yourself yet. Knowing what to wear for my first day was a huge stress for me, and meeting people in advance in this way did help towards overcoming that. If you meet with them in the place of work itself, it also gives you the chance to familiarise yourself with the surroundings, further reducing some of those first day uncertainties.

2. Plan to have some pre-prepared small talk up your sleeve.
This is something I imagine all aspies are familiar with: the learned pieces of small talk. A lot of my social interaction is made up of what I see as stock phrases, things I’ve picked up from other people around me to help me navigate some of the elements of conversation I find more difficult. Starting a new job is a time when this is particularly important – you will feel overwhelmed, you will be surrounded by new sights, sounds and smells, and you will have moments where you don’t know what to say. It’s a good idea to come prepared as best you can, because unfortunately even if you hate it, most first days come with a lot of meeting new people. This week, I learned that it was good to ask people where they live (are you based locally?), how long they’ve worked in the organisation, what they did before this job, etc. For me I find I’m most comfortable making conversation relating to the situation (i.e. about work) but it’s okay to branch out into more general questions if you feel comfortable. Near the end of the week “are you doing anything nice on the weekend?” is a useful one. Also pay attention to what small talk others make with each other, and remember the questions that people ask you as you can then ask those of other people. Also, I know it can be easily done, but don’t forget to ask people things back when it’s appropriate to – “what about you?” is a useful question to remember!
I must also stress that it’s okay to reuse these. Don’t worry about asking the same question of more than one person, this is okay when you’re getting to know lots of different people. Over time as you feel more comfortable in the environment conversation should hopefully begin to feel more natural, but in the early days it’s good to feel prepared for moments when it might be a struggle.
Above all this though, the most important thing to remember is that no one will think less of you if you are quiet or shy when you first start, this is generally quite normal for someone who is new. You don’t need to talk to people at times when you really don’t feel able to, and be careful not to use up all your energy trying to ‘mask’ – try your best but don’t push yourself too hard if it might be damaging to you. Also remember that no one will remember things you said on your first day in a week’s time, or even probably the next day, so don’t get hung up on moments you feel didn’t go so well.

3. If a task comes up that you know you can do, offer to do it.
I find this helpful in a few different ways. Firstly, it obviously shows that you are enthusiastic and keen, and making the offer to help before being asked shows initiative. Less obviously, it is a good way to start to take control of your own workload early on. If you make the choice to take on specific pieces of work you feel you would enjoy or be particularly capable at, over time it can help you shape the role to best suit you. Another thing I find as an aspie, is that often I am happy to do the jobs that others might not want to. When I first started this job there was a large amount of data entry and filing that had been put off that I was able to take on. Having something that wasn’t too strenuous and could be worked on over a full day without needing to ask any questions gave me the chance to settle into my new working environment in my own time. Similarly, other ‘dull’ tasks like organising physical files can provide a break from things if they start to feel overwhelming, especially if the work can be undertaken alone in another room (tidying stationary cupboards, large photocopying jobs and organising archive rooms are good office based examples of this!)

4. Tell your employer, and if you are able to, tell your colleagues as well.
With my first ever job, the main reason I wanted to tell my employer that I have aspergers was to make sure they knew in advance if someone else in the office said anything negative to them about my demeanour. I know when I’m in a new environment with new people I can be quite quiet and awkward, and it takes me a long time to feel comfortable and show my true warmth when talking to people. I was worried that someone might make a comment that they thought I was rude, and I wanted my employer to be able to stick up for me if that happened. It turns out, as far as I’m aware at least, that this didn’t happen, but I’m still glad I told them. When I went into the meeting where I knew I was going to tell my manager I was shaking and my heart was really pounding, but when I realised it wasn’t all that scary to have to say it out loud it then felt easier to tell other colleagues. It’s obviously up to you as an individual whether you would like to tell anyone that you’re working with, but I personally found it really helped me relax more, and feel like I could be myself. Once I’d gotten past the awkwardness of actually making it known, once it was ‘out there’, I no longer felt like I had a secret I was hiding, which took a lot of the stress off me. Luckily everyone was very understanding, and although I know not everyone always will be, I think it’s important not to hide something that’s such a big part of myself.
When it comes to telling your employer, I’ve found it is good to do this early on when they are going through general information about the job. If you have a chance to have a discrete one-to-one meeting with them, let them know that you’d like them to be aware of it. They may want to know how it could affect your work, but this should only be to determine what adjustments you might need to allow you to perform at your best. It’s alright to not know what these might be straight away, you may need to have some time in the job before you learn what type of support you might need – it may be of course that you don’t need any at all. When it comes to telling colleagues, from my personal experience I recommend a more informal approach. I have always used the technique of matter-of-factly dropping it into conversation, which personally works for me. This gives me the opportunity to make the person aware of the information without directly changing the subject or drawing attention to it. For example, in my new job, I told someone about it during a conversation about another colleague’s sense of humour – I mentioned that I find it hard to understand a lot of his jokes because, being autistic, I struggle to detect sarcasm. This allowed me to tell her while still carrying on the same conversation, so once the information was out there we just moved on from it. I told another colleague the same day during a conversation about different communication styles.
Unfortunately, I have occasionally witnessed something that made me decide to tell people sooner than I may have done otherwise. On two occasions in my life when starting in new jobs I have heard someone speak in a way about ASD that I found made me uncomfortable – such as using the phrase ‘on the spectrum’ as a catch-all term to mean someone is ‘a bit weird’. Sadly, this is something that you may come across in the workplace (as you may do in other areas of life). In each instance there was no question as to the person’s intent, I knew those individuals weren’t aware they were in the wrong, and their language certainly wasn’t intentionally harmful – they just didn’t necessarily know any better. In both cases, the experience spurred me on to ‘come out’ to my colleagues, in the aim that it would make people think more about the language they were using, and re-evaluate the misconceptions they might hold. For me, it’s important for those around me to know that those with autism are not an ‘other’, they are around you, and these ill-informed commonly held stereotypes can be harmful.

Whether you are someone with ASD who is looking to find work, or an employer who doesn’t know much about autism in the work place, I’d recommend doing a google search for ‘National Autistic Society Untapped Talent’ – a PDF guide to employing people with autism. It definitely helped me articulate the ways in which my aspergers makes me a good employee, and also helped me to determine ways in which my working environment could be tailored to suit my needs –  useful in particular when ‘coming out’ to my employers as autistic. If you are unsure if your employer fully understands what it means to be autistic, providing them with a copy of the guide could potentially be helpful to you both.

I apologise for how long this post ended up being – turns out I have a lot to say on the topic! I have tried to split it up as best I can so that it is readable, and I do hope that my thoughts will be useful to someone out there. Whoever you may be, good luck with your new job x

Taking medication: the side effects

Warning, ranty personal post ahead…

I’m writing this because I can’t sleep. It’s not the middle of the night, it’s actually 6pm and I’ve been lay in bed for about 3 hours. I’m miserable and I don’t really feel like moving right now.

Because of the medication I take, sleep is quite a big deal to me. The most common side effect of my mood stabilisers is ‘drowsiness’, but this word feels like a huge understatement. When I take my medication before bed, I’m pretty much out cold within a few minutes. If I have to try and stay awake after taking them for any reason, or if I’m woken up soon after falling asleep, I become a delirious, slurring mess. I tend to get irritable if I’m woken up at night for any reason – not because I’m just being stroppy, but because I’m usually in the midst of a deep sleep that’s it’s very uncomfortable and confusing to be taken out of. I also need about 9 or 10 hours sleep for these affects to ‘wear off’, if I have to get up before this time my brain tends to not function properly – I find it hard to focus and my thoughts are slow and jumbled. I have an alarm on my phone set for 8.45pm every night, reminding me to take my meds and get to bed (pretty glamorous, right?)

Another strange side effect of this sleepiness (don’t ask me to explain it, I’ve no idea how these things work) is that even if I don’t take my meds at the time I normally do – maybe I’m out with friends, or staying up later than usual because I don’t have work the next day – I still start to crash around about the same time. Around 10pm I’ll start to get pretty sleepy, and by midnight I can barely keep my eyes open. This isn’t ideal, especially when I’m wanting to actually have fun out of the house for once, rather than settle for my usual compulsory early night.

I have regularly told people how finding the right medication for me really did save my life, and I still stand by this. I’m happy to take all the side effects for the stability they give me – no matter what, my quality of life is greatly improved from what it once was. As a result, I don’t talk much about the annoying bits, about the occasional moments I resent ‘normal’ people for the fact they can just live their life the way they want to, and be grown up adults without fixed bedtimes. I try not to focus on thinking this way, and remind myself that this is a small problem to have compared to those I experienced before, but it still does have a big impact on the way I live my life.

It can be a very frustrating moment when you’re out for a meal with your friends and they all want to go on to a bar afterwards, but all you can think about doing is sleeping. The creeping sense of panic as the tiredness starts to set in and the time ticks by and no one seems to be mentioning going home. You’re getting a lift with someone, so you’re stuck out until they decide to go home, and of course you don’t want to be the one to ruin everyone’s fun by insisting you really must go get some sleep. In the past (when I had perhaps less considerate friends than I do now) I have found myself getting a bus home by myself, slightly delirious and confused and crossing my fingers I’ll find my way to my bed safely, because those I was with really didn’t want to cut their night short. It’s embarrassing, and it makes me feel like I’m ‘no fun’. I’d love to stay out later, make the most of a night out, but I’m starting to realise that as long as I need the medication I do that’s just something I won’t be able to do. It’s easy for people around me to forget, not understand, or simply not be aware that this is something I have little control over, so telling people I’m too tired regularly results in pleas of ‘come onnnn’ and ‘just get an energy drink it’ll be fine!’ When it does come to the point that I’m the reason we end up leaving a place early, when everyone gives in and the excited energy for the night ahead is prematurely extinguished, I feel to blame for the feeling of disappointment.

When I do finally drag myself to bed and take my meds, hours after the usual time I take them, my body clock is then a mess for a while. That’s the state I’m writing in now, I got to bed at 2am last night, woke up confused at 10am, wondered round the house like a lost little child for most of the day and then decided I needed more sleep. Except I can’t nap – that’s the other problem. My body seems so reliant on the pattern and effects of my medication that I can’t sleep at any other time, and seemingly can’t sleep without them. Last time I managed to accidentally run out of my meds without getting my repeat prescription in time I didn’t sleep for two days until I had some in my possession. It can be confusing and frustrating.

When it comes to the negative side effects of my meds, it’s not always the effects themselves that bother me, it’s that other people don’t necessarily understand them, or underestimate the severity of them. I’ve had people say they liked ‘the old me’ – i.e. the unmedicated, highly self-destructive me – say that the ‘new’ me is boring, no fun. Many people think my choices to avoid drinking (meds that make you drowsy + alcohol does not a good night make) and to avoid evening events are symptomatic of me just being a terribly dull person – rather than considering that it’s just something I have to do. As reluctant as I feel about it I have no choice. If I arrange with someone to meet at 10am and they’re not there until 11am, and I get upset and frustrated that I didn’t get that extra hour in bed – that’s not me being lazy, that bit more sleep just means a lot more to me than it might to someone else. I can’t expect people to make special allowances for me, but I sometimes wish there were a way for people around me to better understand my behaviour within its context. This also goes for anyone who makes comments about how much I eat, saying I must have a ‘bottomless stomach’, laughing when I reach for another slice of cake straight after the first – the second major side effect of my meds is an increased appetite, and I hate people drawing attention to it.

I suppose what I’m trying to say, in a round about way, is that it’s not okay to assume someones situation. If someone is too tired, they are too tired, and that is for them to determine. If someone is still hungry, that is not for you to mock (‘How on earth can you still be hungry after all that?’) Luckily, those I am around these days are mostly very understanding people, and I am lucky enough to be able to tell them things like this. There’s a lot to be said for being open and honest about experiences of mental health, good and bad, both to educate and inform but also just to make having a social life that bit more comfortable for the sufferer. I have gotten to an age where I am confident in quickly cutting ties with anyone who ultimately implies I’d be better off unstable but ‘fun’. I am still searching for long term solutions to allow me to cope with the side effects of my medication, as I really would like to be able to enjoy a music gig or a full day of a festival, but ultimately I do think it’s more important that I’m enjoying life in general – even though it sometimes feels as though I’m not awake for very much of it.

Planet Dyspraxia

I’ve never researched it, I’ve never studied it, all I know is how it affects me. Most people who find out I have it know very little about it, other than the fact it sounds a bit like dyslexia, and ask me to explain to them what it is. Usually the best I can do is give them examples from my own life.

I’ve always been terrible at sports, that’s something I’ve never questioned. In all the time I spent in games lessons at school I never once managed to hit the ball in rounders. Eventually I got so sick of the anxiety and stress that came with PE lessons that I just stopped going. I never learned to swim, I never learned to ride a bike, and skipping ropes, hula hoops and rollerblades lay gathering dust in the garden shed. I didn’t think there was something wrong, I just accepted I was no good at anything. Undiagnosed disorders like this can be a real source of low self-esteem in young people – I didn’t know there was a reason I might be finding these tasks harder than others, I just thought I wasn’t good enough.

I wasn’t diagnosed until I was at university, and at that point it was somewhat by chance. I had my dissertation to write and a lot of reading to do, and I wondered if there was some help I could get. I met with a study advisor and explained how I simply thought I was ‘bad at reading’, and asked if she could give me any advice. She referred me to be tested for dyslexia, and at the end of the painfully long 1-on-1 diagnostic session I came out with a diagnosis of dyspraxia (and an assertion that I definitely didn’t have aspergers and that there was no point me being on the waiting list for that test – I’m glad I ignored this advice).

The way dyspraxia manifests, for me at least, is in a struggle to get my body to do what I tell it to. I know what movements I want to make, but I don’t seem to get them quite right, no matter how hard I try. As you can probably imagine, it’s incredibly frustrating. It’s not just sporting activities that I fail miserably at, it also manifests in difficulty tracking words when reading (I have to put a ruler under the line like a loser) and probably most embarrassingly, jumbling up and stumbling over words when I speak.

Most of the time, when I find I can’t do something, I quit. Hence the reason I can’t swim, ride a bike, or play an instrument. The problem is, you can’t quit everything, some things are pretty important. In my case this refers most pressingly to learning to drive. I first started learning before I was diagnosed, and like everything else I thought I was just rubbish. I was terribly embarrassed to tell anyone how long it was taking me, because everyone else I knew who could drive talked about how easy it was. Dyspraxia is commonly comorbid with both aspergers and ADHD, all of which are fairly big hurdles when it comes to driving. In the future I hope to write in detail about my experiences of learning to drive while facing these difficulties, as when I started learning I couldn’t find any relevant advice online.

The problem with dyspraxia is that unlike aspergers, I struggle to work out the potential positives of the diagnosis. As cliché as it is I find that one way to come to terms with living with mental health difficulties, special educational needs, learning difficulties etc. is to work out how they make up a part of you as a person, how without them you wouldn’t be you – it can help make the little differences feel more like personality traits than hindrances, with both positives and negatives to them. The problem is, I struggle with this when it comes to dyspraxia. When I dropped and broke the kettle last month I couldn’t think of any reason why anyone would want to have useless hands like mine. When I burnt my hand while putting wood on the fire I didn’t think ‘well at least I can’t hold a pen correctly!’ After a lot of frustration and beating myself up over my ridiculous gangly, uncoordinated clumsiness I have come to conclude that the only way to accept my dyspraxia is to avoid isolating it. Dyspraxia comes with ADHD comes with aspergers comes with me. They are a whole, and by applying the same ‘without them you wouldn’t be you’ logic, I can determine that yes, in a roundabout way, dyspraxia does have its positives. And even if I can’t ever quite fully convince myself of that, it’s certainly not going anywhere, and as much time as I spend desperately attempting to learn to juggle I’m not going to ‘cure’ it. So no matter what, I have to accept that dyspraxia is part of me – and maybe we just didn’t have sports on my home planet*, so of course I’m not as good at them as everyone else…

* I reckon dyspraxia is probably the name of the planet I’m from. Sounds about right at least.

Little Alien

I have lots of things ‘wrong’ with me. I was diagnosed with depression when I was very young, while still in primary school. Years later, when I was about 21, I was diagnosed with bipolar disorder. From then on they started coming in pretty quickly – when I was 22, I was diagnosed with dyspraxia, and within a year I was then also diagnosed with aspergers and ADHD (two for the price of one that time).

I’m not normally one to define by diagnoses, but this information is relevant in explaining the name of this blog (and my twitter handle..and my instagram username..) Shortly before I was diagnosed, on the recommendation of a disability advisor at university, I started reading “Asperger Syndrome and Anxiety” by Nick Dubin. I didn’t know a lot about aspergers at this stage, and was on a waiting list for the official diagnostic test, so a lot of what I was reading was totally new to me. It was as little as maybe 3 or 4 pages in that I started to become slightly amazed by what I was reading; I was overwhelmed by an indescribable sense of ‘YES, THAT’S IT, THAT’S EXACTLY WHAT IT’S LIKE.‘ I’d never felt more of a connection with someone else’s experiences as I did in that moment. It surpassed Stephen Fry’s erudite and eloquent descriptions of bipolar and depression, and even superseded the moments spent in deep conversation with my mother, sharing intimate and bizarre details of our private moments of insanity. The sentence that explained how I felt more than anything I’d ever heard or read before was very specific, and sat on the very first page of the introduction: “People with Asperger’s actually do feel like aliens on this planet.” In other words, Dubin explains, “we must fit into a world that seems totally foreign to us.”

Deciding to go for the explanation that I’m from some far and different planet is much more palatable than putting it all down to just not getting it – not getting how to be ‘normal’, like everyone else does. I might do things in a way others here on earth think is unusual, but in fact it’s perfectly ordinary where I’m from. And on my home planet there’s no such thing as sarcasm, so of course I don’t get it.

The feeling of being different to others has always been there. When I’m part of a crowd I just know that everyone can tell that I’m somehow the odd one out. I’ve learned that this feeling comes with aspergers, but for me there’s more to it than that. Growing up, my mother regularly told me that my brother and I were different to others, unique minds, not like the rest. Obviously these words came from a parent clearly proud of her children, seeing them as different to others because they are her children, they’re special – but when you’re young it’s easy for words like this to seep into your mind and start to take root, and combined with various other forms of disordered thinking they can shape your developing sense of self. At my most manic points I’ve believed the most unbelievable things, and the truth is those beliefs are never fully abandoned. If you have a memory of absolutely believing something so completely, knowing it to be true without a single doubt, it’s almost impossible to shake that belief. So ‘alien’ is part coping strategy, but also part remnants of real beliefs, all tied up in a long-developed and highly eclectic sense of self.

Of course I still feel like an outsider, but I do spend far less time these days thinking ‘why me?’ Now I’m older and wiser, I actually find myself feeling proud, and secretly a little smug, to not be like anyone else.