Friday 29 April 2016

Procrastination

Procrastination is a marvellous thing, I've been putting off writing this post about putting off my revision for ages now!
Trouble is my mind is quite easily distracted (and not just by shiny things!) and as such forcing it to concentrate outside of work hours can be difficult. Even in the middle of the night when there is no-one to call, no decent TV to watch, and the internet has got boring I can still find myself spending 10 minutes staring at a pattern on my ceiling instead of reading the article I'm supposed to be making notes on!
I've tried various techniques over the years to aid my concentration issues and some have had a measure of success - the issue now is I employ them during my working day in order to achieve everything I need to there, leaving me very little to work with once I get home in the evening. Luckily in some respects I'm very driven by pressure and fear - the closer to a deadline I get the more I can focus and churn out the workload, the trade off being (of course) that the more stressed and sleep deprived I get the more sloppy and mistake-strewn my work may become.
As seems to be the root of many of my posts (hence the title of the page!) the answer lies in balance - how to achieve a happy medium between the need for pressure to achieve high concentration levels and the need for a sharp mind to achieve accurate and worthwhile work.
I'll come back to this thought once my exams are over next Friday. Probably.

Monday 25 April 2016

Isolation vs over-stimulation

I've come to realise recently just how isolated my life had become from what it used to be; I spend the whole working day with the same people, very rarely interacting with anyone new, before coming home to an empty flat where I spend my evenings alone with my TV and laptop for company, making the occasional phone calls to the same half dozen people. My weekends are often just me and my revision / housework / recovery processes, once in a whilst interspersed with a visit to/from a family member or a trip into London to do something Autism related.
Compare this to the almost manically busy life I used to have when I was a student - days filled with lectures, union meetings, social groups and endless nights out I barely remember (but know were good fun!) That life wasn't sustainable though and I often found myself suddenly having to spend periods retreating from my plans and hiding away in an almost hibernating state to restore some balance. Sometimes just coming down from an over-stimulation was a long slog on its own, the world didn't stop being noisy and bright and demanding just because I wanted a time-out and people weren't always very understanding when I tried to explain that it wasn't an alcohol hangover I had but a sensory or social one.
The tricky thing in life is finding the mid-way point between what's needed for recovery and isolation and then putting that on an even functioning keel with social activity (bearing in mind that work/going to the supermarket/filling the car with petrol all count as a form of social activity!)
I find now as I'm older and more knowledgeable about my own limitations and predictable reactions that I can start to formulate ways to 'have my cake and eat it' - by finding activities that fulfil my need for interactions whilst still allowing me enough down time to be ready to face whatever the next day may hold.
Throughout the Sunday-Thursday period I have to tread carefully to ensure that my working day the next day is not impacted upon by any lingering effects but come Friday/Saturday I have a lot more freedom to push my boundaries and go for the full-on 'social experience' and all the consequences that follow it. Its difficult to explain at times but even the smallest of things can add to a growing mountain of stimulation leading to overload; one too many announcements on a train, the overly strong perfume of the person in front at the cashpoint queue, multiple TV's showing different games/sports in pubs, too many new faces and names to remember at once, the list can be endless.
My latest excursion into London (and straight back out to Reading) for Saturday's Saracens vs Wasps semi-final was one of the more bizarre yet successful experiences I've had recently - a match I hadn't planned to attend yet found myself in possession of tickets for courtesy of a Twitter competition. All of a sudden not only did I now have plans for a previously free weekend but I had to work out a whole host of details, including who I was giving the other ticket to! Family and friends were all unavailable as due to the short notice (I found out I had tickets on the Tuesday) they were all booked up. Luckily social media came to my rescue and I was able to have a really wonderful time at the game with someone who not only appreciated the ticket but was able to give me a crash-course introduction to being a full-on member of the Sarries family!
I know not every experience I try will have such a happy ending (and most definitely wont involve that much wine being consumed afterwards!) and some will have potentially catastrophically bad results should my coping strategies fail me at the worst times, but I do know for sure that if I don't keep trying new things and pushing myself out there in the big wide world that the isolation I will be faced with will be horrible.
I don't like being on my own too long, I am, at heart, a people person who loves watching others enjoy life. I just have to weigh the balance of my need to indulge that side of my personality with what it will cost me without retreating into a fear-dominated mind-set of not doing anything 'in case' I can't cope.


Saturday 16 April 2016

Dealing with over stimulation in public

The trouble with doing anything really big and popular (like attending a Derby Day!) is that it's virtually guaranteed to cause a whole host of autism problems at the time and/or later.


The main reason for this is that, obviously, a lot of other people are wanting to do it as well so there are massive crowds to deal with, often lots of excitable children running around, generally public transport to deal with and fairly often nowadays a big publicity/marketing machine blasting out adverts and music at high volumes.


All of this leads to a massive drain on energy levels just to keep that 'public face' mask on - the one that looks happy and calm and isn't showing the intense pain that's being experienced at the time. I understand the need for big venues (particularly sports venues) to create and stimulate 'atmosphere' but I would like some acknowledgement of the cost of this on people like me.


Today's Saracens vs Quins game at Wembley was wonderful but there were moments when I could have done without the random blasting of pop music and the overly excitable commentator. Overall though Wembley/Saracens did pretty well at hosting an enjoyable but relatively autism friendly event.


By far and away the worst event I have been to in my life however was back in November when I went to the O2 arena to see the Tennis ATP finals (Murray vs Nadal). What I endured there actually drove me to tears and ended up forcing me to leave early as I simply could not bear to remain in that environment any longer. The whole venue was blue coloured (as it was sponsored by Barclays Bank who are blue themed) which meant that wherever there was lighting it was the blue shade that makes me automatically think of emergency services sirens which leads to low-level but consistent anxiety. Most of the problems I had with the venue (very airless and 'close') could have been overcome but for the damn graphics the event insisted on using every time there was a challenged decision - a pulse beat on the screen and at full volume echoing across the court. Now, maybe its just me but I hear a beat that sounds similar to a heartbeat and my heart subconsciously tries to mimic it, leading to an increased highly-anxious heartrate and my breathing starting to go into hyperventilation. All of this led to me needing quite a bit 'down-time' to recover enough to drive my brother and me home that evening, a recovery that was set-back by the fact that I had to deal with getting the tube from the arena back to where my car was parked in Westfield!


The issue of 'what happens afterwards' came to the forefront today as well, while the getting to Wembley wasn't too bad and dealing with crowds going in was surprisingly calm the exit, naturally, wasn't. Even though I stayed to watch the Sarries boys do their lap of the pitch and then wasted another 15 minutes or so faffing around finding where my friend had left his bike, still the crowds for the tube were horrible to deal with. I wish that there could have been shuttle buses specifically running people to the nearby major train terminals (Kings Cross, Euston, Paddington etc) to allow for those of us going there to avoid the tube, leaving it just for those who were connecting to other parts of the City.


I made it home in one piece mostly - a major headache and quite a considerable need for quiet, but in a lot better shape than from other times I've been into London. Despite how good today has been though I know I've still got recovery ahead of me, tomorrow will probably come with a strong desire for sleep and quiet processing time along with other side effects such as affected appetite, clumsiness and probably achey joints.




It was worth it though - Stand Up For The Saracens!

Tuesday 12 April 2016

Beyond the comfort zone

I'm not sure where this recent increase in my need to self-challenge has come from but lately I'm feeling more and more desire to expand my horizons and continually push myself beyond my comfort zone.


I think it has a lot to do with my falling back in love with rugby, not that I ever really stopped liking it, I just got very 'meh' with competitive sport in general last year, no one sport or teams fault, just a slowly growing unpleasant feeling about attitudes and commitment.


I believe that to succeed in life and in sport you must be willing to commit everything to the pursuit of your goal. Don't half arse it and expect a medal, promotion, achievement on the other side.


Personal and professional growth takes work and effort, it takes a desire to become a better person and an acceptance of what the current failings are.


I have so much respect and love for the way the England Rugby team approached the recent Six Nations tournament, especially coming on the back of the World Cup. It would have been very easy for them to roll over and play dead or to come out all guns blazing like it was a wild west showdown. But they didn't.  They came out with passion, energy, and dedication. They had a game plan and they stuck to it. Get the job done and get it done well. You only had to look at the team's reaction after the skipper went down; concerned but pulling together for a quick team talk before going into running drills. No standing around chatting or hassling the medical staff, staying focused on the job in hand and make sure they were ready to go again as soon as the ref resumed play. (There will probably be a post at some point about my thoughts on rugby vs football referees!)


Taking a massive disappointment and channelling that experience into a determination to do better is something I hope I can keep doing; the next few weeks are full of a lot of challenges for me including 3 exams and a social event I'm terrified of so here's to positive thoughts and just getting on with getting it right!


And if I fail, well, some of the best people in the world have failed at things, they just kept going and didn't let it define them :)

Parliament and Politicking

It's strange the way humans have evolved to be creatures that create hierarchy and then fight each other for positions within it by trading words and favours instead of spilling blood as our evolutionary ancestors would. 
Spending the afternoon in Westminster taking part in Autism related meetings has been an eye opener into the differing opinions across the society we live in. Hearing academics talk from a psychological/biological point of view being at such cross purposes with my view point as a person who is autistic every day of the week has left me feeling both deflated and pumped up to fight my corner. 
I don't ever profess to speak for the community I'm a part of, nor try to say that my experiences are in any way superior to others but I do swear that the work I am trying to do is for the right reasons and has an aim to stop others from experiencing the same pain and troubles that I have been and still am going through.
I know that politics is a hideously complex thing, where people and organisations that should be working together are bickering over who gets the last penny left in the treasury, but I find it incredible that some of the basic things that could help people like me still need to be spelled out and then enshrined in law to make sure people follow the directions they're given instead of wriggling out by doing the bare minimum to tick the box!
Autistic people don't need superchampions and specific leads in education, health, employment, housing, criminal justice. What we need is for ALL people involved in those departments at all levels to have a good decent knowledge of what Autism is, how it might cause issues for people and how to help resolve those issues.
I hope that over the next few months things that are works in progress will come to fruition and I hope this will help the community I am a part of, because we are a community and we have a voice, we just need to be listened to now.

Transport and London

I have a strange relationship with public transport, probably born out of the conflicting nature of my autism and my upbringing in East London. I was first put on a tube before I could crawl and so never really experienced any anxiety related to it until I was into my twenties. The problem, l discovered was not the tube itself but the attitude of the people using it, particularly at rush hour. The times I really struggled because I am terrified of the oncoming train (I have to turn my head away as they pull in) and so find it hard to cope with the commuter crush queueing for the next tube to appear. I like staying behind the yellow lines and waiting safely until the tube has fully stopped. Do that at rush hour and you'll never get on because every man and his dog is queueing right of the edge of the platform and pushing their way on to already heaving tubes.
I still massively prefer the train to buses however; the bus I find unpredictable and highly uncomfortable. I dislike any form of transport where I have to tell the driver to stop somewhere they're supposed to or they might not! I understand for the non standard stops but when it's one only the main stops and you fly past it because no one rang the bell and the driver didn't see anyone waiting it's a bit frustrating! There have been times I've been on a delayed train and wished it could just skip Knebworth and get me home to Hitchin quicker but the beauty of the train is that it doesn't,  generally speaking it does what it says and gets you to the exact place you knew you would end up - it's not like the station moves halfway through your journey!
My favourite form of transport is a closely run race between being driven (not driving myself as that requires a lot of concentration!) and flying. I adore flying and always get ridiculously excited at take off, the rush for the acceleration is brilliant - the only thing I've ever experienced that's better is the free fall when skydiving! 
I guess you could say I love movement, velocity and acceleration will always trump standing still with your face squashed against someone's arm (or worse!) On a plane you have a guaranteed seat, you have an alloted amount of room, you have order. On the train/bus at 5ft 4in I'm lucky if I can snag hold of something to help me stayed balanced whilst standing the whole journey (I prefer sitting on the floor but when you're sardined in that's not possible!) 
The thing is, and the main reason I'm writing this piece, is the knock on effect this can have on autistic people like me. What is an irritation to a normal commuter is a massive anxiety issue to me, while others get off a packed train/tube ready for work I need time to breathe, stim and sort my head out otherwise I'm a triggered agitated mess for hours. This is the argument I have to use when justifying my choice to buy a first class ticket if I'm coming to London before 9am - at least in 1st class I've got a chance of making it in still calm and ready to work! I'm lucky that my commute to work is a 5 minute drive (or 20 minute walk in the summer) and I don't often need to come to London early in the morning but when I do its for something important that is probably, on some level, making me nervous anyway. 
I love coming to London, I still feel at heart that it's my home and I have a great affection for Zone One and TFL, I just wish I could reconcile those feeling with the spin cycle my stomach goes through every time I approach a platform . . .

Sunday 10 April 2016

Autism Training and Presentations

Having been sorting through my laptop and trying to organising my filing a bit better I thought it might be a good time to record the various topics I have spoken about in the past, along with the ones I have things prepared for, just in case anyone would like to learn more!


* "Education: Learning to Cope"
* "Autism in Pink - Personal Health domain"
* "Autism Training for Schools - sensory focus"
* "Females and the Autistic Spectrum"
* "Finding the balance between Reasonable Adjustment and Professional Development"
* "Pressure and Perfectionism - Coping with Society's Expectations"
* "Sensory Sensitivities"
* "What the Future can hold"
* "Autism and Sport - why doing something is important"
* "Social Interactions - how to start them and how to survive them"
* "Overload, Meltdown, Shutdown - what to do when things go wrong"


Most of these are aimed at people who want to learn more about Autism or who want guidance for how to improve things for Autistic people, please do get in touch if you want anymore information about anything above or want me to come talk about something different, I'm willing to talk about pretty much anything I have experience in!

Sport and Autism

Now, people may call me biased on this one but I genuinely believe that sport can be one of the most important things in the world. To the autistic mind sport can represent many things; an ordered routine, a stress management technique, a pleasurable experience and even an understandable route to socialisation.
The last one is something I hugely advocate; using sport as a way to interact with other people can be a real godsend to someone who struggles with social interactions and knowing how to approach others. Autistic people are often told we 'go on too much' about our special interests or inappropriately want to talk about an exam we've just done or a meal we've just had. But with sport its not exactly unheard of for people to talk at length about a game or match they've just watched, breaking down ever play, every ref decision, every strategic gamble. Its also less frowned upon to know lots of stats and information about the people/clubs/places involved in sport, its seen to be the mark of a 'true fan' to know lots about a clubs history.
I remember times in the past when I very deliberately used this technique to ease my way into a social interaction - a couple of hours the night before dedicated to watching a football match followed by some quality Wikipedia research and suddenly the next day I could join in with the lunch break conversation about Liverpool's chances on the away leg. The beauty of the concept was that I could choose when to employ this, even at times shying away from talking about a game I had actually watched because I wasn't comfortable with socialising on that particular day - to my colleagues the small lie that I had 'missed it as I was tired' didn't just give me the excuse for not joining in but also allowed them to see the exhaustion written all over my face and slightly adjust their behaviour around me for that day, giving me more space.
Some people find it funny when I talk about sport, I'm not exactly what you would imagine a sports enthusiast to look like, but its the world I was brought up in. My parents ran an amateur cycling team in the 80s/90s and to me normal life was spending hours at the local track, weekends out following the road races, visitors regularly popping round for leg massages or team talks. I often talk in presentations/training sessions about 'safe memories' that can be used to help bring someone round from meltdown. My main and most powerful 'safe memory' is being in a village hall surrounded by guys that have just finished a road race, knowing that everyone in that room knows me and I am completely safe. To this day the smell of strong tea, oil/grease, sweat and muscle rub will mentally take me back there - the smell of Deep Heat is known to most people I encounter to be a sensory trigger for calmness and safety.
I think there's a lot that's wrong with sport at the moment, and I'm not talking here about doping allegations and ridiculous salaries, but about the way people (particularly autistic people) struggle to access sport. I want so much at the moment to get back into regularly supporting a sports team but find the pressure to be undeniable, if you try to say you are a fan of a team people expect a certain level of commitment, you can't seem to just say 'I support Saracens' without people saying 'well, when did you last go see them play?' 'are you a season ticket holder' 'do you got to any away matches' 'are you going to the European matches' 'are you getting tickets to the final' etc etc etc.
The sad thing I would love to be able to say yes to those sorts of questions, I want to commit fully to being an active supporter of a team because I think the clubs and the players deserve that, but I know I would struggle to maintain that level of support, I'd be fine whilst things were going well (both personally and for the team) but things get a lot harder when life becomes more complicated. A bad week at work coupled with an away game that results in a loss would send me into a tailspin, the sheer amount of energy I would have to expend on coping with the loss and then the subsequent lengthy journey home would leave me running on empty and with little time to recovery enough to cope with work on the Monday (especially if its a Sunday game). And this worries me, I don't want to be seen as a glory hunter supporter, only going when things are going well for my team (for the record I was introduced to Saracens as a team when I was 12, early impressions last and I often find the team I gravitate to in any sport is the first one I encountered!)
I'm heading to Wembley next week to watch Saracens vs Harlequins, I picked this game to go to because I'm familiar with Wembley and I know that there will be a different expectation of the crowd at this sort of game to one at Allianz Park. I hope the day is good, when I went to this match 4 years ago I did struggle at various points because of little things that could have easily been avoided. I'm hoping at some point to get to a Saracens home match just to see if I can manage it, time will tell on that one!
I hope there is a way forward for sport to engage more with the autistic community and listen to what we have to say, there are so many small adjustments that could be made to make our participation in sport better and more likely to be repeated. I've actually started to write a training session relating to autism and sport talking about those adjustments and why I think its so important. I just hope one day I can use it.

Saturday 2 April 2016

WORLD AUTISM AWARENESS DAY!!!

Is today a celebration or a campaign?


I'm honestly not sure and quite frankly am not bothering to chose! I treat WAAD as both a chance to express my passion for promoting awareness of Autism and to indulge my inner ego's desire to say 'yes I am doing well and I'm damn proud of it!'


The thing is, these two elements are so deeply intertwined and most of the world doesn't even see it; my need for validation that 'yes I am a functioning, society-contributing, independent adult' comes not from a place of vanity or hubris but from a place of loneliness and fear, a place that was born from the way the world treats the word 'Autism' and the overwhelming negativeness that Autistic people are subjected to.


I hope as we move forward in the 21st century we (as a species) can continue to grow and remember that were it not for the evolution of things like opposable thumbs and language that we would not have become the race we are today. I'm not saying that the Autistic brain is the new evolution of humanity, but is it so wrong to think that maybe, its an evolutionary response to the world we've created? Is the emergence of more common sensory issues directly linked to the massive expansion of things that demand our senses take notice?


I'm not talking about the recent growth of the technology word here but a more fundamental shift that occurred generations ago - the industrial revolution opened the door to loud, in-your-face, constant noises and smells. The world suddenly got a lot louder and with it came a change in what we saw, wore, smelt, tasted. Global communities sprang up sharing new exotic tastes, new fabrics and dyes came into public fashion, the need for marketing and advertising suddenly became apparent. Maybe I'm wrong, maybe I've misunderstood history, but the way I see it is that not too long ago (in an evolutionary sense) the world was quiet, calm and less busy. Now, its considered an achievement if you can find 'peace and quiet' for more than a few minutes!


I fully support the NAS's current 'Too Much Information' campaign; I whole heartedly agree that we need less overstimulation in the world. We're never going to stop dogs barking, babies crying or even (unfortunately) traffic being traffic, but maybe we can start to think about what is truly needed and what is surplus. Speaking as someone who working in the education field one of the first things I always talking about sensory-wise is how bad schools are for over stimulating children visually! I know OFSTED (cough *bastards* cough) love to see classroom walls covered in displays and information but this can be incredibly overwhelming for the Autistic mind - I actually got triggered into sensory overload from a primary school classroom once the walls were so busy! (And that's without mentioning the smell/sounds of the class pet in the corner, the school bell ringing, the children screaming outside on break!)


Its sad to think but these days I'm not sure I could cope with living in a big busy city like London, and that to me is one of the biggest problems I 'suffer' from. I was born in London, I love the city and have always intended to return there one day, maybe even after a stint living abroad somewhere like San Francisco or Boston, but I'm genuinely not sure if I would be able to cope with the constant overstimulation that those big cities generate. Certainly not alongside the stresses and issues that come with full-time work anyway. God knows its hard enough sometimes managing just living in a town - although in my defence I live next to an industrial estate and railway tracks!


I think ultimately the world as a concept has both grown and shrunk too fast for us as a species to keep up with, we exist now in society where I can speak to someone in Australia whilst eating food that originated in Asia, typing on piece of technology from America, and watching a rugby match being played in Europe! 4 generations back and my family didn't even know what electricity was!


If I could ask one thing of the world on World Autism Awareness Day it would be 'please stop stacking the deck against us' - we exist, we walk and work among you, please stop making our lives so much harder than they need to be.