My resounding memory of 2016

My resounding memory of 2016 will be of staring at a screen in shocked disbelief.

It's been a year of staring as news rolled in of Trump's victory, the Brexit result, he murder of Jo Cox, the deaths of Prince/David Bowie/Alan Rickman/Carrie Fisher, the awful events in Brussels/Nice/Orlando and all round the world.

Luckily those horrible moments have also been countered with a different type of shocked disbelief for some wonderfully happy things like England's 3-0 whitewash of the Wallabies, Bryony Page's silver medal in trampolining and Saracens becoming Champions of Europe, as well as the genuine 'what the hell' version of shocked disbelief when Froome had to run up a hill in France and the Keirin gold medal race got reset twice!!

So, yeah, 2016, the year of staring at a screen in shocked disbelief.

End of an era

It's funny how little inconsequential things can really affect you at times.

I'm on my last trip on my current passport. When I get back I'm sending it off for renewal ahead of my NY trip in March; something I'm incredibly excited for.

And yet I'm heartbroken.

That passport has been to hell and back with me, I got it in 2006 ahead of a family holiday to Egypt, back then I was only self-diagnosed and still studying astrophysics!

That passport has gained me entry to Egypt, San Francisco, Athens, Lisbon, Malta and more. It's been through a degree change, a life validating assessment, a graduation, and numerous other important events.

When I got that passport I lived at home, my paternal grandfather was alive and well, my mum was a single divorcee and my sister was just a primary school child.

Now I'm in my own flat, my grandmother has been a widow for a number of years, my mum is happily married to my stepfather and my sister has just started her university degree to become a midwife!

It's difficult to put into words just what handing over that passport will mean to me; I know I get it back but it's very much like an end of an era. This is truly the last vestiges of childhood being lost as this new passport I will be paying for myself - the first time I have had to, and it will be the one that lasts me through my 30s.

I struggle to grasp the concept of what life may be like in 10 years time when I have to renew my passport again. Will it involve the same nostalgia and odd emotions? What stamps will this one have collected? I already know there will be a Department of Homeland Security one in there come March but where else will the next 10 years take me? Will that passport even last me the full 10 years? By that time I may have a new married surname or a new title should I have earned my PhD by then!

All I know at the moment is that you can't remain in the past and you shouldn't worry for the future excessively. What will happen will happen at its own pace and at the end of the day we may all be vaporised tomorrow by Vogons anyway!

Routine and Change

School has started back for a new academic year and the rugby season has kicked off!

I am so happy it's ridiculous.

My life can return to what stands for normal in my family. I know what I'm doing from day to day and have a regular routine again!

The thing is, for all I moan about it, I really like working in a school and having a basic timetable I can follow from day-to-day / week-to-week / term-to-term. It gives me structure in a life I deliberately try to keep very open and fluid. I've always been very fearful of having too much routine and becoming compulsive about following it. I worry that my nature is to follow automatic habits and that I would get very distressed if unable to.  For this reason I like to mix up my drive home route occasionally (although it's not very long so there's not much option for change!) and vary the days of the week I do my washing/shopping/cleaning. Even following the rugby has variety in locations, days and times so not every weekend becomes repetitive.

I like variety and change and some random chaos in life, it keeps me thinking and more importantly it stops me becoming stagnant and trapped in a mundane cycle that would send me into a spiralling depression - and yes that lesson was learnt through experience!

I feel that people are too afraid of change when it comes to Autism - sometimes it's not the #ActuallyAutistic person that is rejecting the change but the people around them who are worrying about their reaction and can't cope with the additional support we need to manage the transition process.

Change and mistakes along with tears and anxiety have made me the person I am today because I experienced them, survived them and ultimately learned from them.

Don't stifle someone because of your fear, don't 'protect' someone from the normal everyday nature of the world that throws changes and chaos around like fake snow at Christmas. The world will never stop being the way it is and while there is sense in routine and planning there must also be wisdom in recognising that some things cannot be planned for or made to be regular. It will not always be dry when you go to the doctors, the train to work/school will not always arrive at 08.34 precisely, the recipe for Fanta may not always remain the same.

We do not stay the same as human beings throughout life, we grow and change and mature and decay. Life is, by its very nature, never static and never 100% predictable. The human mind, autistic or not, needs to be able to cope with that concept and learn that there are many many things we simply cannot control and the best way to do this is to look to nature. Science teaches us that we don't know more than we know and even what we know now may not be what we know tomorrow.

So my motto for September is very much "lets get back to normal" but also a hefty dose of "embrace the chaos" - let's see what the month brings!

Relying on other people

I find it really difficult when I have to rely on other people in order for me to be able to do something; be that having to wait for authorisation to proceed with something or needing someone to provide me with something.


Its not an uncommon thing amongst autistic people that we dislike being reliant on others - relying on others generally involves interacting with others and that's not something we like being forced to do necessarily!


Thing is, the world we live in means it is very very rare to be able to get through life without having some form of reliance on others - we rely on our employers/the state to provide us with our money regularly, we rely on utility companies to maintain a consistent flow of electricity/water to us, we rely on the emergency services to be there if/when we need them.


And I'm perfectly fine with that. What I dislike is being forced into relying on others in order to achieve my aims because others wont allow me to have the control myself.


I'm not allowed to have keys to my place of work because my manager fears what would happen were I to panic/meltdown when alone (never mind the fact that I live alone and have done successfully for 4 years now . . ) This means that during the school holidays when I'm due to work so many days I am reliant on the key holders opening/closing the building at the right time for me. However, this doesn't often happen. The caretakers, as is their right, want to do all their hours in one go rather than their early morning and evening slots as they do during term time; not particularly helpful to me when I need to work my standard 8am-4pm hours.


The fact that I'm not allowed to have keys to open/lock the building means I'm subject to things not going smoothly; case in point, tomorrow I'm supposed to work my normal hours, however the first key holder wont arrive until 9am. This means to do the hours I'm supposed to (and need to in order to get all my work done) I'll need to carry on working beyond my normal finish time, luckily tomorrow another key holder is planning to stay late so I can do this. Not sure what's happening Tuesday however though as this wont be the case.


And yet, despite the fact that I have raised this as an issue before (my fourth summer with this problem I believe) and despite the fact that my colleagues all know about my Autism and my need to know in advance what's going on I'm still in a situation where things aren't clear to me and I have no way of contacting the people who do know - its the summer holidays, my manager has gone abroad and I don't have the contact details for the caretakers - not that I would have the authority to ask them to switch their working hours even if I did!


Still, at least I'm not relying on others to have done bits of work for me to be able to do mine. Oh, wait a minute . . . .

Life, time and travels

Sat on yet another train to London I've been musing the 'moving foward'ness of life and how we rarely match up to our own expectations.

I'm heading to see a friend before she goes off on the classic 'Asia/Australia tour' for several months and it strikes me as odd that my first thought on hearing her plans were "isn't she a bit old for that?" The fact is that at 26 no she's not 'too old' but yet my mind connects such travels to a 21/22 year old; maybe that's just the stereotype coming to the forefront of my mind. I suppose I see what she is doing at the 'gap yah' type experience whereas (in my mind) in your mid to late twenties people start moving into the more 'adult' trips that are more about doing something specific than endless nights of partying with cheap alcohol and people you just met in the backpackers hostel.

But then that's probably my prejudices coming through. Or maybe even my jealousy.

I would love to be able to see through some of the trips I've plotted out for my future but I know that kind of luxury is a long way off for me still, just getting to the end of the month with a tiny amount of paycheck left after all the bills have gone out is a small miracle these days!

It's a strange thing though, to be specifically going to say goodbye to someone that you don't know when you'll see again.

Normally in life we don't get much notice of when will be the 'last time' we see someone, for a while or forever. Now I fully expect her to come back absolutely fine next year at some point, but the fact remains that it's a bizarre situation and not one I've dealt with well in the past.

When my brother went to Australia for a year in 2012 it was one of the hardest emotional trials I have ever been through. This wasn't just an "adios amigo" but my little brother, the most important person in my whole life and the embodiment of "Pietro è la pietra" - he truly is my rock and always has been the one to keep me grounded with his unwavering support. So saying goodbye to him for a whole year was tough. It wasn't like when I went to university - I knew I'd see him again in a few months maximum and we ended up talking on the phone regularly (more so once he left for university and would get bored walking places!) This was the other side of the world and 10 time zones away. No more quick visits to see him or 2 hour chats discussing doping in sport or whatever topic had wound one of us up recently! We did manage to get a fair few conversations in over the 51 weeks he was away but they were scattered, often at odd times as we tried to make the time difference work in a way that didn't involve either of us loosing sleep. (There were still quite a few Saturday 8am phone calls that I could have killed him for!)

Essentially the hardest part for me was loosing the knowledge/control of the communication and interaction. I had enormous jealousy of my mum who went to visit him and my dad, stepmum and sister who visited and then travelled home with him.

I guess this scenario will be very different as ours is a friendship that exists in ocassional meet ups and is rooted in university shared experiences.

But still, I can't help wondering about the nature of being 'too old' or doing things at the 'right age'. At nearly thirty I'm struggling with the fact that I don't own my home nor do I have a husband/kids waiting in the wings. I don't even have the career I want yet.

But, as some wonderfully wise people often remind me, concentrate on what you do have/can do not what you don't.

So, I'm off to enjoy times with brilliant friends in a great city I love knowing that I'll have some great Olympic sport to watch tonight!

And if all else fails it's not long til the Rugby season kicks off again!!

To do or not to do

Making the choice to do something that I know is going to cause me pain and trouble isn't always difficult. There are times when it's incredibly simple because I know that the short term issues from my autism and sensory issues are massively outweighed by how much I would regret NOT taking up the opportunity on offer.

This was completely true on Tuesday when, despite a work day from hell, I travelled into London to meet a friend for dinner. Keeping this arrangement was more important to me than the issues I was struggling with at the time for many reasons but mostly because it was a one-off experience we had booked to do. Nandos isn't often a good place for me to go as it's generally a veritable smorgasbord of sensory overload; most places with open kitchens are!

But getting to experience the Saracens 'Nandos Takeover' fundraising event was something I'd been excited about for a while and getting to catch up face to face with a friend I hadn't seen since my birthday in February was very important to me!

When it comes to trying to live a 'normal' life as an autistic person it can be really hard to get others to understand just why I'm apprehensive about a proposed activity or plan; NT folk don't have to think about the multitude of things I do to assess whether something is going to be worth while or not. A NT person doesn't have to consider whether having the discussion in the first place will be constructive or just an exercise in frustration.

My workplace is a classic example of this difficulty and how people just keep getting it wrong with me. They seem determined to "protect" me by not letting me be involved in the more 'fun' side of things like big events - wanting to make sure I'm not stressed because I "have a lot of work to get on with" (even though during those big loud events there's not a cats chance in hell I'll be able to concentrate on my work!) And yet the things I need them to think about they seem to stubbornly cling to this idea that if they just tell me to be ok that I will be!

I'm writing this from the passenger seat of the car I'm hiding out in. The staff team have come to a Falconry Centre for the day as part of some end of year wellbeing nonsense; a day of birds of prey and sporting activities. Lovely.

No consideration was given for how I might handle this scenario; in fact when I was first told just last week of the plan (having already got fairly wound up about not knowing what was going to be happening on the last day as it was being kept a secret) my gut reaction was absolute horror.

Now don't get me wrong, I love birds of prey, watching them soar above in the skies, listening to Sir David Attenborough or someone tell me all about their habits and rituals is fascinating to me, they are truly magnificent creatures that deserve a lot of respect.

They also make sounds that are like a spike being plunged through the front of my brain.

I warned my boss about this but still she insisted that I come along and "give it a go" - a typical response from a former PE teacher.

I could hear the screechy chattering sounds building in intensity as we approached, it didn't take long for me to turn tail and run for safety. Maybe I could have coped better had I not just spent close to an hour crammed into a cafe hut thing with 50 odd colleagues most of whom are naturally loud people.

So now I'm sat in a car for 90 minutes while my half of the staff team do the bird experience. Then my group will have their turn at the sporting activities; shooting, archery and laser clay pigeon shooting. In the middle of a farm. Lovely. More stuff I can't cope with. I suppose at least my main reason for not wanting to take part in those activities is more obvious to people; the bright blue muscle tape running up my neck from my shoulders is pretty conspicuous!

At least I had some warning about what today involved so I could prepare some what; my ear plugs are near by in case I need them, I have my ipod on and playing calming music, I have recovery snacks with me if needed, my stress aids are in my bag and I didn't drive myself here so I don't have to worry about being safe to drive home later!

I'm isolated, with a building headache and feeling a bit fed up with the situation. Sums up the whole bloody academic year quite frankly! Thank crunchie that the holidays begin tomorrow and I can get on with my work in peace over the next few weeks!

My speech from the Westminster Autism Commission launch!

On Monday 4th July the Westminster Autism Commission launched its first inquiry report 'A Spectrum of Obstacles' and I was privileged to be asked to speak as an autistic self-advocate.

Below is the speech I had written to give - on the day I think a few words may have gotten changed or swapped around as is the way with public speaking! I hope to be able to get a video of the speech posted online soon :)

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Good afternoon; It’s lovely to see so many people here today to listen to what our Commission has to say – for a very long time now we as a community have felt ignored or pushed aside so to see people from outside the Autism world here wanting to affect positive change is truly heart-warming.

I stand before you today not as a representative of the Autism community, but as an individual, as someone who has struggled both pre and post diagnosis.

You may look at me and not see someone who needs help; you may only see the mask I wear, the person I want you to see. I stand here as a confident independent woman, someone who lives alone, works full-time and splits my free time between the commitments of being a Tizard Centre postgraduate, a speaker for the NAS and Research Autism and whenever possible following my beloved Saracens round the country making friends with both fellow and opposition fans wherever I go!

What you see on the surface however is not the whole story, while some of you may be able to see the stress I carry or the tiredness in my eyes, most people would dismiss it as work related or assume I had a young child at home! And while a not small amount of my stress is from work, there is a lot that is due to the way my autism affects my life.

Some of you may be able to see the strain I’m under trying to control my anxiety, you may be able to tell the level of pain I’m experiencing from my sensory sensitivities, or recognise the amount of effort I’m putting in to maintaining this ‘normal’ image.

But can you know what this will cost me later? The hard recovery process I will have to go through just to be able to function at work tomorrow?

The term ‘Autism Fatigue’ is relatively new but very apt. There are times I simply cannot explain what is wrong with me as I am so overwhelmed, so drained of energy from just keeping going that formulating thoughts into speech becomes near impossible. As a result I can come out of a doctor’s appointment that was for an earache with a prescription for antidepressants – again.

Of course, that outcome is subject to me actually making it into the consultant room in the first place – there have been a number of occasions in the past where I have simply walked out abandoning appointments or tests because the waiting room has become too much and my sensory sensitivities have been driven into overload by the potent mix of chemical cleaning smells, screaming children, airless rooms and over busy walls. When you’re not feeling well and already anxious about talking to someone do you really need to be overwhelmed with images of the many ways you could die?!

I like to think that I’m a fairly effective communicator, able to get my point across and be understood, so when I’m finding it hard to get what I need out of my GPs surgery it’s really not a surprise to me to learn of some of the horror stories that the commission heard. Some of the experiences sent in as evidence were terrifying – one woman told us of her 40 year old autistic daughter who was taken to hospital with a suspected dislocated hip only to discover that it was in fact a 2 kilogram cancerous tumour! Another parent told us of their autistic son only being diagnosed as having acute renal failure after having an NHS health check – for which he is only eligible for because he has learning difficulties.

But not everyone with Autism has learning difficulties.

A regular health check for autistic people would go a long way towards helping the current situation and catching these medical issues before they become life-threatening and more costly to the NHS as well as taking some of the pressure off of carers, parents and the autistic people themselves.
I know I would definitely appreciate an annual health check if only to put any niggling fears at ease and enable me to regularly stay in touch with my GP surgery. I do know from personal experience with my university mentor however that the onus needs to be on the professional involved – I needed my mentor to regularly contact me to see how I was doing, if it was left for me to contact her when I needed I would bury my head in the sand and not know how to deal with the problem, often leaving issues far too long to ask for help with.

And that ultimately is the crux of this issue, why this report was needed. I can’t speak for all autistic people but I can say that the majority of us struggle to ask for help when we need it and struggle even more to cope when we don’t get it.

We’re not asking for the world to change overnight, for every person in every healthcare establishment to suddenly become an expert in autism, we’re asking for the people who hold the purse strings to recognise that we , the autistic community, are a large (larger than you may think!) group of patients (and voters!) who need more support than is currently being provided.

We need to feel safe going into surgeries and hospitals; we need to know we’re not going to be belittled by receptionist who doesn’t understand our difficulties; that we’re not going to be dismissed by GPs who aren’t able to hear what we’re trying to communicate. We need to feel confident that we’re not going to get trapped on the mental health roundabout being passed pillar to post; only receiving crisis support when we have a complete breakdown.

We’re not asking for UNreasonable adjustments or a complete restructure of the NHS. To paraphrase a favourite film quote of mine "we’re just a community of people, standing in front of our representatives, asking them to help us"

Please, it’s taken so much effort from us just to get to this point, to finally be able to express what we need and ask for the help to get it. Please don’t let us down.

Thank you.

An inspiring week

Everyone has weeks that are tough, weeks that you wish would end already or never have happened, weeks that just make life seem so grey and rubbish.

This was not one of those weeks for me.

I am so lucky to have the opportunities I do in my life; to be able to stand in front of a crowd in Westminster and have them listen to what I have to say, to be able to see my family so often, to be able to share moments with people I love, and to get to meet some truly inspirational people.

Meeting Henry Fraser at his incredible art exhibition 'Hand to Mouth' was one of the most significant moments of recent times for me; he is someone that doesn't just inspire me but reminds me of the important things in life - to focus on "what you can do, not what you cant do". To have the opportunity to get to thank him in person for being a continual source of positivity has made me reaffirm my vow to not get caught up in the negative of life, but to continue to find ways to see the strengths in disappointment and to improve as a person with every knock-back or failure.

This week has been a phenomenal one for finding hope for the future thanks to the wealth of sport on TV; witnessing Andy Murray win Wimbledon again, watching Chris Froome's brilliant descent sprint to the Yellow jersey, seeing Yates and Cav in the White and Green jerseys, all these marvellous things give me such enjoyment and passion for British sport again - let's cheer Froomey on to victory in Paris in 14 days and then its time to bring on Rio!!

More than anything I hope that the sense of positivity coming out of British sport rights now will help to lift this country out of the funk its been in recently and start to unite and heal our people; the world is in a sorry state right now, but as some wonderful people have reminded me lately - even the hardest of adversities can be overcome with the right mental attitude and a willingness to accept what cannot be changed.

Taking over Westminster - one speech at a time!

When I first joined the Westminster Autism Commission last year I had no way of knowing just what a bizarre and unusual predicament the hallowed halls would find themselves in by the time we came to launch our first inquiry report!


Today was a day where many of us spoke of change and the need for more to be done, yet just a few corridors away both sides of the benches were in turmoil, leadership challenges and bids being made, deals being whispered about yet not truly brokered. Our whole country is locked in a limbo-like existence where jokes about the twitter-sphere asking 'who is actually running the country at the moment?' and 'is there anyone left who hasn't resigned from/been appointed to the shadow cabinet?'


My way of coping with this strange British type of chaos is simply to retweet the jokes I find amusing and watch Wimbledon instead. Well, when Le Tour isn't on that is.


The thing is though, the more I hear about what is going on in Westminster right now the more I worry that one day I will have to choose a devil to jump in bed with. I've found myself captivated by the notion of becoming an MP one day, but to realise this dream I'm likely going to have to pick between being Tory or Labour, the devil or the deep blue sea so to speak.


But why would I want to be a part of such nastiness? Of such intensive backstabbing and hushed voice dirty deals. I've probably left it too late anyway - I didn't go to Eton OR Oxbridge so my chances are pretty scuppered to begin with, definitely more so by not joining a 'young {insert party} society' when at university.


Still, even with all that against me I was given a microphone and a captive audience today to speak to so my dream may yet live on! Then again if things carry on the way they are going who knows what our democratic government may look like in a few years time!!

Limbo land; waiting to know

Its 11pm on Thursday 23rd June 2016, the EU Referendum polls have been closed for an hour now and counting is happening in earnest around the country. We are now officially in the limbo between voting and results being know.


My anxiety levels have never been so out of control.


I hate the fact that I don't know what will happen tomorrow morning. I hate that I don't know how this is going to affect the country I love. I hate that I can't control how terrified I am of what might happen.


These are the moments when being Autistic really really sucks.


But, from the depths of my fog of fear and trepidation is emerging a new way of coping. Gone are the days when I could rely on alcohol, cynicism or fake apathy to get me through nights like this, instead I find myself reaching previously unknown levels of zen; I have done what I could and can do no more, I must now simply accept and wait.


I'm reminded in these moments of the harrowing line of dialogue from the end of James Cameron's Titanic "had nothing to do but wait... wait to die... wait to live... wait for an absolution... that would never come"


Tonight isn't anywhere near on a par with the events of April 14th 1912 but there is a sense of worlds being shaken, of lives changing in ways that cannot be comprehended yet, of the endless wait to see what morning brings.


I hope whatever the result that my wonderful, amazing, proud country can come together and accept the majority choice. I hope that we will never again see the scenes we saw in the summer of 2011 when parts of London were torn apart by riots. I hope that we remember how lucky we are to be given a choice in our future at all.


I hate not knowing, but I would hate not having a say more.

Punctuality

There's a big issue in life with being on time for things; as a species we are more dominated by time constraints than any of our fellow earth-inhabitants (Alice's White Rabbit aside!)

I would always prefer to sit around having arrived somewhere ridiculously early than to be caught in a situation where time is slipping away from me and I run the risk of being late. This doesn't always go to plan and I have friends who will happily speak of many times I have dashed into a restaurant/bar/party a lot later than I was supposed to arrive - inevitably with words spilling out my lips trying to explain the latest round of Helen vs the world. Truthfully I am just very bad at judging how long things will take; I can massively overestimate how long a journey may take me yet think drying my hair will take just a few minutes despite years of experience telling me it takes at least 10!

The understanding of the passage of time is something that can be linked to executive functioning - something that research tells us Autistic people can struggle with. I find my problems are not so much with the planning part of the process, as a former scientist I still have the numerical brain that makes all plans into Gantt charts and plots the most efficient path to completion of tasks. The trouble arises when the time I assign to each subtask is incorrect wildly knocking my plan out of sync! Even though this happens more often than I would like I still struggle to compensate and can't quite make myself change the next stage of plans quickly enough to gain back the time lost, although this is often because I have trimmed the plans to the point of not being able to loose anything - even if I'm running late for work I can't skip brushing my teeth or putting my shoes on! The few times I have tried to hasten my leaving the house I will find on my return that I have left lights on or my lunch is still sat in the fridge.

As we are forced into tighter and tighter schedules it's not surprising that more and more of my generation are eschewing 'going out' for nights in on out own terms. I feel I spend half my life trying to meet time constraints set for me: work deadlines, train departures, match KOs, assignment hand ins, even trying to remember to return phone calls at appropriate times for other people schedules!

Maybe as a society we need to slow down a bit and realise that not everyone can always keep up with the manic pace that is being demanded. Maybe we need to realise that each and every one of us is a human being who operates on their own processing speed and allow people just a bit of breathing space sometimes. Maybe one day we'll realise that we've made this world just a bit too hard for some people and have lost our way as a progressive society.

Maybe.

Maybe next time I come into London I won't be sat around in a reception for over an hour because I'm ridiculously early for an appointment!

Taking time out to relax

Sometimes its easy to get so caught up in life and all the pressures unfolding around you that you stop taking care of yourself and listening to what your mind and body need.
I've spent the past 5 weeks living life at (for me) a fairly non-stop pace; trips to visit family, rugby games (home and away), postgraduate assignments and exams, autism research and advocacy work. All of this on top of my full-time job. No wonder I've been so damn tired recently!




So I decided this weekend I was going to take some time to myself, not the whole weekend as I'm going to the Diamond Wedding Anniversary of close family friends for some of tomorrow but for the most part this weekend has been about looking after me and getting some much needed rest.
Rest doesn't just mean sleep however, though I will admit it does play a large part for me (14 hours last night!), its about not having any social demands put on me. I watched the Saracens game on TV from my own living room rather than making the trip to Allianz Park to watch it with all the other fans who couldn't make the trip to Lyon. This was a choice I made very definitively earlier in the week when I realised just how exhausted I was getting and how close to breaking point I'd unintentionally let myself get. The fact of the matter is that as an Autistic person I have to be realistic about what I can manage and no matter how much I may want to do something I still have to consider all the ramifications and consequences before committing to a course of action. This is particularly true when I'm asked to take on/do something with little notice - I need to think through the ripple effect before giving a response; often saying 'no' is incredibly difficult for me.


I don't regret anything I've done recently and I know that certain parts of the stress I'm under are completely out of my control but I just wish that people could be a little bit more understanding of the concept of 'Autism Fatigue' and realise the implications that can have on me and my sociability - if I'm having a tough week please don't criticize me for not conforming to the social norm and saying 'good morning' to every Tom, Dick and Harry that I see first thing in the morning at work!!




I can already feel the change in my mental state just from a single day away from people and their subconscious pressures, hopefully the feel-good factor from todays win and the general relaxed approach to this weekend will be enough to see me through to half-term now!

Its a generation thing

I am so goddamn lucky to be the age I am - I grew up watching Will Carling, the Underwood boys and Jerry Guscott on my TV as a child, got to witness history in the making as a teenager watching Johnno, Wilkinson and the boys in Aus do the impossible thanks to ITV, and now as an adult venturing into actually being at the games in person I get to see the marvellous talent that is Itoje, Kruis, Farrell and co go from strength to strength.


Musically I wish I'd been born 20 years earlier, technologically I cant help feeling the next 50 years are going to be the place to live in, but sport wise I'm definitely in the exact generation I want to belong to!

Running on Empty

I can often predict when tough days are coming but even then the level to which they affect me still surprises me each time. Sat in a filling up stadium miles from home I can feel the affects starting to take hold; the vice grip headache tightening, the tiredness and poor concentration, the tightness in the neck, the need for sunglasses even though it's cloudy because it's still too bright for me.

I'll do what I always do and push through it because I want to be here doing what I'm doing and it's important to me that I don't let my Autism 'win'. But boy am I going to pay for this tomorrow

Inescapable difficult situations

A large problem I face regularly with being autistic is that people can tell when I'm not happy with something I've been asked to do. Currently I'm faced with a challenge about how to cope with the way my university has decided to do 'revision sessions' for my Masters course - I don't like doing group work and I certainly don't like to do 'talk and share'. I don't want to be here, I am not coping well with this situation and am finding it really hard just to keep myself in the room when all I want to do is bolt and hide.
I hate the way people feel the need to force others into their way of learning / revising / coping. I have my way, it works well for me, doesn't always give the best results in terms of academic achievements but it allows me to survive the process.
Coping with stressful environments is always difficult when you have anxiety issues but when it's an environment that you're trapped in, and particularly if you're in the spotlight, it's so hard to know how to cope. My standard coping method is to blend in, to survive, to stay in control. In an inescapable spotlight environment however blending in is a bit harder and thus surviving can become a real challenge. Hopefully I'll be okay with this soon, it's a classic example of me not knowing in advance what would be expected of me and so not coping with a scenario well.

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.

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.

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!

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 . . .

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.

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.

The consequences of a meltdown at work

We had a fire drill at 12.20pm today.


This was a rearranged one from last week - I had been told the original date/time and left the building 10 minutes in advance to ensure I didn't get caught in it (as I am allowed to do by our H&S officer) but when it got rearranged due to an unavoidable issue my only information was that they 'hoped to have it next Tuesday' - no confirmation, no time, and the first day back after a 4 day weekend . . . (I spent most of today thinking it was Monday, despite knowing yesterday was Easter Monday!)


So, its 12.15pm and I'm knee deep in a particularly tricky report I'm working on and quite frankly feeling fairly below par already as the weekend (being a family orientated one) was fairly tiring and I hadn't managed to get enough sleep Monday night as my brain kicked into overdrive at about midnight and didn't turn off til gone 3am!


12.20ish and the siren suddenly wails through the building.


Now, I'm actually pretty good at the first reaction part - I can compartmentalise my base reaction and squash it viciously whilst dealing with the 'getting out of the building' part but once outside all the rush of panic, sensory overload, claustrophobia (from coming down the stairs with a dozen other people) and general anxiety comes out in the form of hyperventilating and pre-meltdown behaviours emerging.


Its worth noting here that I'm incredibly lucky in working for the same organisation as my mother, and by sheer luck we were both working in the same building today so she was able to take care of me when I needed help with my recovery process.


The fact that my colleagues still don't seem to understand the implications of things like fire alarms on me is disappointing. Co-workers I encountered over the course of the afternoon seemed surprise that I was still suffering 2-3 hours after the drill, not realising that a post meltdown recovery can take hours. I actually never progressed into full meltdown as I retained a level of control during the incident but I was certainly on the very limit of my capacity for control and came very close to toppling over the edge into full blown meltdown at least twice.


It took me until nearly 8pm to feel fully 'normal' again this evening; only after eating junk food (dominos to the rescue) and taking a 2 hour nap on my sofa did I finally feel back to my baseline levels. I still don't know how I'll wake up feeling tomorrow - that will all depend on tonight's sleep quality.


The hardest part of the whole afternoon for me was trying to verbalise my pain to people - I have a multitude of different categories of headache but explaining the difference between 'dull top vice' and 'consistent mallet' to people can be interesting - especially when I'm tripping over my own tongue as exhaustion robs me of some of my fine motor control. I also lose control of some of my external 'masks' and allow my autism to show through more, become more abrupt and harsh with people and a lot more demonstrative of my displeasure - when you're in pain other people's feelings/opinions become a lot less important!


The tiredness is also a shock to a lot of people, they seem to think I can just 'shake off' a reaction and be fine 20 minutes later, they don't seem to understand that, a lot like a burn, sometimes the initial pain isn't the worst part and that the damage can still be developing over time. I'd like to see them moving at full pace when they have a brain that's occupied with self-preservation and healing.


The sad thing is that one day they will all realise what its like because a lot of what I describe my recovery process to be like is how my grandparents describe ageing - the frustration of not being able to think/move/react as quickly as before, the slipping of hand/eye coordination and motor control, the verbal mistakes, the brain 'blankness'.


Maybe one day research into Autism or brain conditions such as dementia or strokes may shed some light on how to help people like me in meltdown recovery. Until then I'll keep doing what I'm doing and try not to get myself fired in the process!

The A Word - thoughts and feelings

Its been hard watching 'The A Word' series on BBC1 as it brings out a lot of painful memories and feelings about my own journey from ignorance to diagnosis and beyond.


I love the concept of the show and think its wonderful that the BBC commissioned a show that can help bring Autism to a wider audience, however I do worry that by nature the show is 'drama' and may end up pushing a more dramatic/extreme journey on its characters just for the shock factor.


The latest episode dealt with the concept of home schooling and the specialist vs mainstream vs alternative approach argument. Its a topic I care passionately about as someone who works within the education field; my place of work is technically a mainstream school as its not an EBD/Special school but as a PRU we do have more flexibility than standard secondary schools. (Don't get me started on academies, that's a whole separate issue!)


The main argument in all this is not necessarily about which style of education is best for the autistic child but about the social inclusion nature of childhood - if you spare the young child then pain of school/classroom due to fears of bullying, exclusions, SEND problems then unfortunately I really believe you are creating larger problems down the line.


Unless you fully intend for the child to live out their entire adult life in sheltered supported accommodation and make no form of contribution to society then you owe that child the right to learn the skills they will need for adult life. If you overly protect them as children then how do they learn the required skills to cope with post-16/18 life? There were parts of school I absolutely hated but I would not exchange those hard-earned lessons for anything now - I needed to learn that not everyone could be trusted, that not every 'friend' truly was, that I was going to fail at somethings and succeed at others and that sometimes there is no rhyme, reason, consistency or logic to life, sometimes its just not fair!


Being made to cope with the mainstream classroom allowed me to cultivate a thicker skin about Joe Public and their opinions/actions, it also allowed me to develop the coping mechanisms I use regularly now about sensory overloads - particularly in the workplace and when out at social events.


I'm not saying that mainstream is right for every child or that every autistic person is capable of living the kind of life I do, but I do feel that by restricting the child's experiences of 'normal' you are creating a stunted, unprepared adult who will not be able to cope with this crazy world we all exist in. People are more understanding now of the damage emotional neglect can do at a young age - maybe we need to be considering what long-term effects can come from not allowing children to experience the nastier sides of childhood as well as the positives.


After all, life is about balance isn't it?

Rollercoaster week

What a week.

Its been Schools Autism Awareness Week for the past 5 days and I wish I could say I've seen much evidence of it but it seems to have largely passed my local area by, even my own school didn't really bother with it much except to allow me to run an afternoon/evening conference on Wednesday.

Despite the numbers of children diagnosed each year climbing and the ever increasing importance of autism awareness and reasonable adjustments being needed it still feels like a lot of school staff, employers, colleagues, general public don't really give two figs.

I worked incredibly hard to pull off our conference on Wednesday and while I'm very proud of my own achievements in that regard, I do feel somewhat let down by the attitude of my colleagues towards my event and the campaign in general - yet again autism is something that has been dismissed as 'not a priority' which disappoints me.

Its a pervading attitude that I worry is indicative of the way non-autistic people think of autism in general; its too easy for people to 'pay lip service' for a short while then go straight back to carrying on as they always had been with no regard for what we live with every minute of every day. Its not like my sensory issues come with a dial or pause button that I can utilise when it suits someone else.

They certainly wouldn't be allowed to 'get away' with 'forgetting' about the specific needs of a diabetic/nut allergy sufferer/paraplegic/blind person - in fact I'm pretty sure sometimes more effort goes into be considerate of my colleagues gluten/wheat/dairy intolerances than goes in to making sure I've got a sensory environment that wont give me an overload migraine every few hours!

Anyway, stressful week over - its time to crack open a bottle of wine, watch The Last Leg and enjoy the thought that I have nothing planned for the next 48 hours apart from watching the England team lift the Six Nations trophy!! (Lets make it a Grand Slam please boys?!)

Burning the candle at both ends

One of the things I find hardest in the world is to say 'no' to something I really want to do when I know I just don't have the time or energy for it.

This seems to be a growing problem for me this year; on one hand I'm incredibly lucky that I'm being offered some amazing opportunities and have so much going on in my personal and professional lives, but on the other hand I am starting to worry just how much damage I'm doing to my health . . .

I would love to be able to bottle up the excess energy I have on some days, the quiet ones where I don't interact with the wider world much or the long warm summer days that are just so peaceful and content. If I could find a way to store this calm motivation and be able to access it on the tough days where I just reach the end of my rope that would be fantastic!

Unfortunately life seems to conspire against me at the moment and seems to take great pleasure in ensuring my peak work stress matches up beautifully with my Master's deadlines! I'm in the first of two years studying an MA in Autism Studies, part-time, distance learning and its getting pretty tough going. Maintaining the self motivation to keep up with the reading and required work for assignments is starting to be a real challenge, particularly given that I'm in the middle of a massive piece of work for my manager at the moment which is taking a lot out of me each day!

Of course it probably doesn't help that I spent the Saturday just gone out all evening at a charity fundraising event; a wonderful night but very loud and social interaction heavy - I was paying for it the next day in both alcohol and sensory hangovers!

Hopefully this weekend I'll be able to catch up on sleep and processing time to get my head back to where it should be as I've got a very important event next week that I'm really excited about!!

Social interactions

My job is a bizarre mix of independent solo working within a very social-interaction based environment. This can be really quite draining sometimes and days by the time I make it home I'm so mentally drained its all I can do to function long enough to make/eat dinner.

I've had to develop a few strategies for coping with my work environment, one of the strongest ones in my armoury being my ability to fake interest in a topic being discussed around me.

I try not to utilise this too often as I don't like presenting a fake front to anyone really, but there are times I genuinely don't care about someone's son's girlfriend or the latest soap plot but I recognise that its not a situation I can politely escape from any time soon!

Over the years I've asked trusted family members and friends to let me know of the 'tells' I display when I'm starting to grow bored or irritated so I can try to keep them under wraps when need be - of course this doesn't always work and there have been many times I've utterly failed at keeping my internal thoughts from shining through my body language, still, I like to think the rates are improving!

The main thing I've found is that I have started to recognise when other 'normal' people are doing this around me as well, I wonder just how much of human interaction is made up of faked interest to conform to what we believe social expectations are?

All about me!

I self-diagnosed as being Autistic at the age of 15 but didn't receive my official diagnosis of Asperger's Syndrome until I was almost 22!

I work full-time in my own office within a school and live alone in a town in Hertfordshire. I initially grew up in East London before relocating to Hertfordshire aged 8 where I stayed until leaving for university in Canterbury, Kent at 18.

My university career lasted 5 years having switched my undergraduate to a BA Social Policy after having completed a year and a half of an Astrophysics degree! I'm now half way through the first year of a part-time MA in Autism Studies as a distance learner which is a lot of work but really satisfyingly challenging.