Ladies and Gentlemen welcome to the home of English Rugby . . TWICKENHAM!!!!!!!!!
A day I have been looking forward to since the Lions tour ended, the return of the Aviva Premiership season!
A day that started with glorious sunshine and terrible traffic on the M25 (no surprise really!) and should have gone down in my memory as one of the most spectacularly brilliant days in recent history given that we put 9 tries on Northampton Saints!
However the memory I will take with me is not that of burning sunshine and fruity cider, or the superb scoring abilities our boys displayed but instead the memory of intense pain and electric anxiety . . . the memory of having to work so hard to keep a sensory overload at bay.
I love my club and I appreciate the work the staff at the club do but if I ever find out who decided to get a BRASS BAND to sit in the stands amongst the fans and play that damn 'stand up' tune after ever Sarries score there will be blood shed.
My pain, shock, anxiety on the day can never be eased and those who caused it will not be easily forgiven. My day came perilously close to being ruined and it was only my own internal strength and determination that kept me in my seat and not fleeing the stadium to curl up in a rocking ball somewhere.
What rubs salt into the raw wound is that not 24 hours before I had been speaking to people at supporters services after a cock up had been made with my tickets. In order to sit with the family I was taking with me to the LDH I was forced to move our entire seating allocation to the next block across.
At no point in this conversation (despite me mentioning at least once that I am autistic) was I told that the new seats I was being given were just three rows in front of where the brass band would be sat.
I doubt many non-autistic people will be able to but try to imagine the horror I went through on realising that the shock and intense pain I had just experienced the first time they leapt up to play would in fact be repeated every time we scored . . . .
I have never before wished for a game to have no further scoring happen
Unfortunately for my ears, heart rate, blood pressure and sensory reactions in general I didn't get my wish.
No, of course this would be the game we score NINE tries!
By the end of the game my head was simultaneously pounding and ringing non-stop, my heart feeling like I had run a marathon and my nerves twitching like I'd been electrocuted. I could barely keep myself from unleashing my pain and anger on the musicians, wanting so much to scream directly in their faces, wanting to strike them repeatedly round the head until they understood just what they had done to me.
I didn't, I sat on every impulse I had, held my tongue and arms still, swallowed down my words to sit in amongst the roiling bile and spasming muscles.
Most people know a meltdown isn't pleasant, most people know that anxiety attacks aren't a walk in the park to go through but I wonder just how few truly understand how damaging it is to contain a sensory overload reaction? It will take me days to recover fully, I'm still having random stomach cramps and pulsing headaches 30 hours later, I'll still be tired and struggling to fully focus tomorrow at work, but I'll push through because I have to.
I love the LDH at Twickenham, I love my Saracens but right now I don't *like* them very much at all.
Showing posts with label Auditory. Show all posts
Showing posts with label Auditory. Show all posts
Sunday, 3 September 2017
Monday, 3 April 2017
I'm autistic, what does that mean?
My 'Autism journey' started back in 2002 when I was a stubborn, hormonal, exam-stressed, self-centred 15 year old girl - which if you exchange 15 for 30 is still a pretty accurate description of me!
My mother had attended a course that featured Ros Blackman speaking about being an autistic female and a lot of things she had said were ringing true about our home life. So, over the next few weeks she put in place some of the suggested strategies for autistic people (at the time) and then broached the subject with me after I mentioned how much better things had been recently.
It took a long time for me to process the resulting conversation. At this point in my life my only reference points for Autism were the film Rain Man and the 'classic' autism of those in long-term institutions. My fear was huge, this was 2002, pre-Twitter and definitely pre the current availability of role models and positive messages.
Luckily for me I had been brought up by teachers, maths and science to be precise, so I dealt with the issue the same way I did anything I encountered that I didn't understand - my beloved set of encyclopaedias! Of course they didn't exactly have much in the way of comforting information there but I did end up learning a lot about the way the brain works and the chemistry of the body and briefly entertained the notion of becoming a neurologist . . .
Ultimately I forged my own path with understanding what the word 'autism' meant to me, I already had a lot of coping strategies and masking methods in place so continuing them on with conscious knowledge wasn't that difficult. Well, at that point in my life it wasn't. Between that conversation at 15 and going to my GP at 17 as far as I recall it was business as usual at home, which naturally mean lots of loud and emotionally charged rows, lots of stress at school, lots of mistakes and lots of spending time on my own - not always out of choice.
My biggest mistake came on the day of my GP appointment - I decided at the last minute to go alone and barred my mum from coming with me. To this day I cant remember my reasoning or why on earth I thought that would be a good idea.My GP (a lovely man that I hold no ill-will to) did exactly what any GP would do at that point when presented with an emotional, tongue-tied 17 year old girl - he asked me about school and home and concluded that it was just normal life, growing up and hormones and exam stress.
Of course I didn't take this very well but the reaction didn't come out until I was long left the surgery and so in no position to show him that he was wrong and that there was more to my problems than just the standard worries of a teenager.I avoided going back to the doctors for quite a while after that and quickly stopped mentioning to other people what we had self-diagnosed me as. Looking back there are moments I wish I had been diagnosed or on the referral pathway already by that point, times when teachers caused me problems or social situations got very difficult.
I remember one instance that still makes me burn with anger when I think of it - my A-level chemistry teacher had informed us before the Easter break that we needed to get our coursework to her before we came back to school for the Summer Term so she could mark them and send them off in time. Not a problem, she even gave us her home address to post them to over the holidays. In the final week of term she also mentioned that as the school had an INSET day on Friday we could go in to use the school space to finish off our coursework and hand it in then if we wanted to. I didn't want to, I already had plans with my family that day as we'd known we had an INSET day off that day for weeks. So I didn't go in, instead I laboured on with the coursework over the first week of the holiday (I really hated my project by that point!) and sent it off to her home address from my dad's house in the second week. When we returned to school for the Summer Term she pulled me aside at the end of our first Chem lesson to basically have a massive go at me. She very sarcastically and (in my opinion) nastily asked me why she had had to wait until the end of the holiday to complete her marking and assessment of the classes work when every other person in the class had come in on the INSET day to hand in their work then?! She concluded by stating that she was not happy with me and that she expected better - all of this in-front of the students who had filled in for the next lesson with her! To be honest it was probably only the fact that she was heavily pregnant saved her from my explosion of rage, instead I meekly turned and exited as fast as I could with my face burning with shame and ran for cover in the girls loos. I never confronted her about her inconsistency or way of handling the situation. I'm pretty sure she knew I hated her from that moment on as I'm not exactly a subtle person when angry but it was mostly passive aggressive and fairly pointless as we only had 6 weeks left before the exams by that time. But I still have a burning anger buried in my memories because of her, I still have a strong desire to verbally rip her to shreds in front of colleagues and family, I still wish to hear her grovel an apology to me for the way she made me feel like a piece of shit on her shoe that day.
As I've got older and have understood my emotional reactions to situations more I've gotten a better handle on how to process and respond to those sort of scenarios; I even practise them in my dreams! The sub-conscious mind is a phenomenal place and can process and figure out things so much more quickly than my waking mind can. In my dreams I'm still autistic, I still experience sensory overload and processing delay but I can 'hit pause' on things (well, in dreams anyway, nightmares are a totally different topic!) My dreams allow me to consider different ways I might react to things and how best to approach situations. I have dreamt of receiving the news of family members deaths, of being caught up in a terror attack, of being assaulted, of finding myself under arrest, of being fired, of pretty much any situation where my immediate reaction is going to need to be controlled and managed. I need to dream these scenarios so if, god forbid, they ever occur the freeze-shock hopefully wont be as powerful, wont be as debilitating, wont be as damaging.
I never like planning for the worst, I don't think I'm a naturally pessimistic person, but I do believe in the pragmatism of being prepared for all eventualities. Well, maybe not all, I haven't dream-rehearsed a zombie invasion or alien attack - Hollywood covers that well enough anyway! But the principle I adhere to is that I need to be able to predict my own reactions to things - how can I possibly hope to understand other peoples actions and reasonings if I cant work out my own?
I often think of Tony Attwood's wonderful phrase about autistic boys and girls where, to paraphrase, he states that while Asperger describe his boys as 'little professors' that autistic girls are more like 'little psychologists' - in short, we *want* to learn about other human beings, we *want* to understand this world we live in. I actually slightly disagree with Attwood in that I believe autistic females are 'little anthropologists' - we study the environment to learn from it, looking abstractly at why certain interactions happen but doing it in a range of ways, some of us immerse ourselves in the culture we are trying to learn from where as others maintain an observational distance.
I've always been fascinated with other people and with learning more about people in general. As a small child my obsession was my own fingers - the movement of the bones and muscles/tendons, the different ways they could be manipulated and move, how different peoples hands look to each other. As I grew my focus shifted more to peoples differences in general, I always notice height, skin tone, hair colour and type, face set and finger length in strangers. I'm not discriminatory in what I notice, I just mentally record it as a way of identifying an individual, taking note of how their hair reminds me of my Grandma or their hands look like a pianists or their torso is longer than my legs! Leg length is another thing that fascinates me, shaving my legs always takes forever because I inevitably become distracted by thoughts of how long my legs are and how did they ever get to be that length from the tiny baby legs I was born with! (and I've not exactly got long legs at only 5ft3" tall!)
At times I wonder if I should have used this keen interest to pursue a career in medicine or physiology. But I think my fascination with the human mind will always overrule my wonderings about how tendons make bones move. I *need* to understand why people think the way they do, why we interact in the social grouping manners we do, why we have desires for communities and social structures in our lives.
Being autistic gives me an added desire to learn about these things, I will never able to know what its like to not be autistic, to truly understand just how instinctive the understandings and reactions are to those who are not autistic.
When I went off to university aged 18 I was full of ideas and passions, I wanted to understand not people but the universe as a whole. My degree was Astrophysics, I wanted to become a theoretical physicist like Stephen Hawking, Galileo Galilei, James Clerk Maxwell, Robert Oppenheimer. I wanted to change the way we understood the world we exist in and learn more about *why* we exist.
This state of mind lasted until about halfway through my second year. By that point I'd immersed myself in the student union, learning through observation and casual interaction, finding out that it was (for me) the perfect way to test the waters of social activity, taking part in structured meetings and events before dipping into the more alcohol-based aspects of the post-meeting hitting the bar. I was surrounded by likeminded people who were passionate about helping others and doing things for the right (sometimes righteous!) reasons and more than anything they were accepting of me for who I was - quirks and all!
The more time I spent in this crazy bubble world that was, as a friend put it, 'Blue Peter on speed' I started to realise that my ideas for my future and career were starting to look very dull and miserable. Suddenly the idea of spending the next 40 years of my life in a lab with the same dozen people endlessly staring at numbers and fuzzy images seemed like the worst kind of hell. I'd not enjoyed much of my second year of studies anyway, my modules 'choices' were not exactly what I had wanted to study - the module of 'Multimedia Image Processing' (or something similar I've erased the knowledge from my memory!) was the beginning of the end for me. The module started with an introductory lecture, well, it should have done, instead what it started with was the professor going over the module aims and then launching into an overview of what we already knew. Except I didn't. I hadn't spent my teenage years playing computer games and fiddling with images and computer graphics and all that sort of thing, I literally understood the word pixel in the spiel he reeled off. So from day one I was massively behind my fellow peers and completely adrift in the module with no real desire to catch up as I found the subject mind-numbingly boring and not at all related to what I wanted to learn!
Things came to an apex in my mind whilst on a once-in-a-lifetime holiday with my mum and brother in Egypt. It was a place all three of us had wanted to go for years, an ancient civilisation we were fascinated with. Sitting on the top of the cruise boat on the River Nile looking out at miles of desert and historical temples and monuments I found myself realising the truth behind my feelings; I wanted to do something worthwhile with my life, something were I could affect other people's happiness in the here and now, not some abstract concept of improving human knowledge but a tangible legacy of impact on real people.
It was in this moment I also realised that I had truly come to terms with my identity as an autistic person and that I was ready to try again with the diagnosis process and commit to seeing it through to the end no matter what.
Those 10 days in the African sun were genuinely life-changing for me, I found a piece of myself that I hadn't known was missing and I started to put together a quantifiable image of my future. Within a few days of returning to university I had started the paperwork required to switch Faculties (virtually unheard of!) changing my degree from an MSc in Astrophysics to a BA in Social Policy! It would take a lot of work still and I had to restart right at Year One as my A-levels of Maths, Further Maths, Physics and Chemistry weren't exactly applicable to a sociology subject but I knew I was on the right track.
I was lucky in the respect that my parents had always taught me that it was okay to change your mind, that there was nothing wrong with admitting you had made a mistake. By giving me that upbringing they gifted me the skills to be able to take control of a life I was unhappy with and change it into one that had the potential for future happiness.
Now all I needed was that pesky diagnosis . . . .
[To Be Continued]
My mother had attended a course that featured Ros Blackman speaking about being an autistic female and a lot of things she had said were ringing true about our home life. So, over the next few weeks she put in place some of the suggested strategies for autistic people (at the time) and then broached the subject with me after I mentioned how much better things had been recently.
It took a long time for me to process the resulting conversation. At this point in my life my only reference points for Autism were the film Rain Man and the 'classic' autism of those in long-term institutions. My fear was huge, this was 2002, pre-Twitter and definitely pre the current availability of role models and positive messages.
Luckily for me I had been brought up by teachers, maths and science to be precise, so I dealt with the issue the same way I did anything I encountered that I didn't understand - my beloved set of encyclopaedias! Of course they didn't exactly have much in the way of comforting information there but I did end up learning a lot about the way the brain works and the chemistry of the body and briefly entertained the notion of becoming a neurologist . . .
Ultimately I forged my own path with understanding what the word 'autism' meant to me, I already had a lot of coping strategies and masking methods in place so continuing them on with conscious knowledge wasn't that difficult. Well, at that point in my life it wasn't. Between that conversation at 15 and going to my GP at 17 as far as I recall it was business as usual at home, which naturally mean lots of loud and emotionally charged rows, lots of stress at school, lots of mistakes and lots of spending time on my own - not always out of choice.
My biggest mistake came on the day of my GP appointment - I decided at the last minute to go alone and barred my mum from coming with me. To this day I cant remember my reasoning or why on earth I thought that would be a good idea.My GP (a lovely man that I hold no ill-will to) did exactly what any GP would do at that point when presented with an emotional, tongue-tied 17 year old girl - he asked me about school and home and concluded that it was just normal life, growing up and hormones and exam stress.
Of course I didn't take this very well but the reaction didn't come out until I was long left the surgery and so in no position to show him that he was wrong and that there was more to my problems than just the standard worries of a teenager.I avoided going back to the doctors for quite a while after that and quickly stopped mentioning to other people what we had self-diagnosed me as. Looking back there are moments I wish I had been diagnosed or on the referral pathway already by that point, times when teachers caused me problems or social situations got very difficult.
I remember one instance that still makes me burn with anger when I think of it - my A-level chemistry teacher had informed us before the Easter break that we needed to get our coursework to her before we came back to school for the Summer Term so she could mark them and send them off in time. Not a problem, she even gave us her home address to post them to over the holidays. In the final week of term she also mentioned that as the school had an INSET day on Friday we could go in to use the school space to finish off our coursework and hand it in then if we wanted to. I didn't want to, I already had plans with my family that day as we'd known we had an INSET day off that day for weeks. So I didn't go in, instead I laboured on with the coursework over the first week of the holiday (I really hated my project by that point!) and sent it off to her home address from my dad's house in the second week. When we returned to school for the Summer Term she pulled me aside at the end of our first Chem lesson to basically have a massive go at me. She very sarcastically and (in my opinion) nastily asked me why she had had to wait until the end of the holiday to complete her marking and assessment of the classes work when every other person in the class had come in on the INSET day to hand in their work then?! She concluded by stating that she was not happy with me and that she expected better - all of this in-front of the students who had filled in for the next lesson with her! To be honest it was probably only the fact that she was heavily pregnant saved her from my explosion of rage, instead I meekly turned and exited as fast as I could with my face burning with shame and ran for cover in the girls loos. I never confronted her about her inconsistency or way of handling the situation. I'm pretty sure she knew I hated her from that moment on as I'm not exactly a subtle person when angry but it was mostly passive aggressive and fairly pointless as we only had 6 weeks left before the exams by that time. But I still have a burning anger buried in my memories because of her, I still have a strong desire to verbally rip her to shreds in front of colleagues and family, I still wish to hear her grovel an apology to me for the way she made me feel like a piece of shit on her shoe that day.
As I've got older and have understood my emotional reactions to situations more I've gotten a better handle on how to process and respond to those sort of scenarios; I even practise them in my dreams! The sub-conscious mind is a phenomenal place and can process and figure out things so much more quickly than my waking mind can. In my dreams I'm still autistic, I still experience sensory overload and processing delay but I can 'hit pause' on things (well, in dreams anyway, nightmares are a totally different topic!) My dreams allow me to consider different ways I might react to things and how best to approach situations. I have dreamt of receiving the news of family members deaths, of being caught up in a terror attack, of being assaulted, of finding myself under arrest, of being fired, of pretty much any situation where my immediate reaction is going to need to be controlled and managed. I need to dream these scenarios so if, god forbid, they ever occur the freeze-shock hopefully wont be as powerful, wont be as debilitating, wont be as damaging.
I never like planning for the worst, I don't think I'm a naturally pessimistic person, but I do believe in the pragmatism of being prepared for all eventualities. Well, maybe not all, I haven't dream-rehearsed a zombie invasion or alien attack - Hollywood covers that well enough anyway! But the principle I adhere to is that I need to be able to predict my own reactions to things - how can I possibly hope to understand other peoples actions and reasonings if I cant work out my own?
I often think of Tony Attwood's wonderful phrase about autistic boys and girls where, to paraphrase, he states that while Asperger describe his boys as 'little professors' that autistic girls are more like 'little psychologists' - in short, we *want* to learn about other human beings, we *want* to understand this world we live in. I actually slightly disagree with Attwood in that I believe autistic females are 'little anthropologists' - we study the environment to learn from it, looking abstractly at why certain interactions happen but doing it in a range of ways, some of us immerse ourselves in the culture we are trying to learn from where as others maintain an observational distance.
I've always been fascinated with other people and with learning more about people in general. As a small child my obsession was my own fingers - the movement of the bones and muscles/tendons, the different ways they could be manipulated and move, how different peoples hands look to each other. As I grew my focus shifted more to peoples differences in general, I always notice height, skin tone, hair colour and type, face set and finger length in strangers. I'm not discriminatory in what I notice, I just mentally record it as a way of identifying an individual, taking note of how their hair reminds me of my Grandma or their hands look like a pianists or their torso is longer than my legs! Leg length is another thing that fascinates me, shaving my legs always takes forever because I inevitably become distracted by thoughts of how long my legs are and how did they ever get to be that length from the tiny baby legs I was born with! (and I've not exactly got long legs at only 5ft3" tall!)
At times I wonder if I should have used this keen interest to pursue a career in medicine or physiology. But I think my fascination with the human mind will always overrule my wonderings about how tendons make bones move. I *need* to understand why people think the way they do, why we interact in the social grouping manners we do, why we have desires for communities and social structures in our lives.
Being autistic gives me an added desire to learn about these things, I will never able to know what its like to not be autistic, to truly understand just how instinctive the understandings and reactions are to those who are not autistic.
When I went off to university aged 18 I was full of ideas and passions, I wanted to understand not people but the universe as a whole. My degree was Astrophysics, I wanted to become a theoretical physicist like Stephen Hawking, Galileo Galilei, James Clerk Maxwell, Robert Oppenheimer. I wanted to change the way we understood the world we exist in and learn more about *why* we exist.
This state of mind lasted until about halfway through my second year. By that point I'd immersed myself in the student union, learning through observation and casual interaction, finding out that it was (for me) the perfect way to test the waters of social activity, taking part in structured meetings and events before dipping into the more alcohol-based aspects of the post-meeting hitting the bar. I was surrounded by likeminded people who were passionate about helping others and doing things for the right (sometimes righteous!) reasons and more than anything they were accepting of me for who I was - quirks and all!
The more time I spent in this crazy bubble world that was, as a friend put it, 'Blue Peter on speed' I started to realise that my ideas for my future and career were starting to look very dull and miserable. Suddenly the idea of spending the next 40 years of my life in a lab with the same dozen people endlessly staring at numbers and fuzzy images seemed like the worst kind of hell. I'd not enjoyed much of my second year of studies anyway, my modules 'choices' were not exactly what I had wanted to study - the module of 'Multimedia Image Processing' (or something similar I've erased the knowledge from my memory!) was the beginning of the end for me. The module started with an introductory lecture, well, it should have done, instead what it started with was the professor going over the module aims and then launching into an overview of what we already knew. Except I didn't. I hadn't spent my teenage years playing computer games and fiddling with images and computer graphics and all that sort of thing, I literally understood the word pixel in the spiel he reeled off. So from day one I was massively behind my fellow peers and completely adrift in the module with no real desire to catch up as I found the subject mind-numbingly boring and not at all related to what I wanted to learn!
Things came to an apex in my mind whilst on a once-in-a-lifetime holiday with my mum and brother in Egypt. It was a place all three of us had wanted to go for years, an ancient civilisation we were fascinated with. Sitting on the top of the cruise boat on the River Nile looking out at miles of desert and historical temples and monuments I found myself realising the truth behind my feelings; I wanted to do something worthwhile with my life, something were I could affect other people's happiness in the here and now, not some abstract concept of improving human knowledge but a tangible legacy of impact on real people.
It was in this moment I also realised that I had truly come to terms with my identity as an autistic person and that I was ready to try again with the diagnosis process and commit to seeing it through to the end no matter what.
Those 10 days in the African sun were genuinely life-changing for me, I found a piece of myself that I hadn't known was missing and I started to put together a quantifiable image of my future. Within a few days of returning to university I had started the paperwork required to switch Faculties (virtually unheard of!) changing my degree from an MSc in Astrophysics to a BA in Social Policy! It would take a lot of work still and I had to restart right at Year One as my A-levels of Maths, Further Maths, Physics and Chemistry weren't exactly applicable to a sociology subject but I knew I was on the right track.
I was lucky in the respect that my parents had always taught me that it was okay to change your mind, that there was nothing wrong with admitting you had made a mistake. By giving me that upbringing they gifted me the skills to be able to take control of a life I was unhappy with and change it into one that had the potential for future happiness.
Now all I needed was that pesky diagnosis . . . .
[To Be Continued]
Friday, 22 July 2016
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!
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!
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!
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
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 . . .
Tuesday, 29 March 2016
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!
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!
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