I've been doing a lot of work recently on how to best support fellow autistics within the world of employment and social activities and as such have been thinking a lot about the ways to mitigate factors that precede the different types of meltdown. For explanation for the past few years I've been defining my meltdowns as having three categories:
Fight Meltdown
This is the most commonly recognised "meltdown" - the classic external expression of being autisticly overwhelmed. Its also the one I experience least of the three; its very rare I find myself shouting uncontrollably or lashing out with self-injurious intent, if I do its often because the "fight" is being aimed at myself as I try desperately to avoid one of the other two meltdowns.
Freeze Meltdown
Becoming more commonly recognised now under the term "shutdown" - the reaction turns inward, lots of internal negative/panicked thoughts, a need to 'hide' expressed by trying to become as small as possible through the tightening of the body space ('hugging' oneself, knees pulled up to chest etc). May look like a catatonic response as all movement stills and eyes becomes unfocused and non-responsive. Can include a measure of self harm if the freeze response is initiated to over-ride the flight response.
Flight Meltdown
An 'evacuation' response, the immediate need to 'run away' from the trigger in question; this can be as simple as just walking away from something, but can also include abandoning shopping in the trolley or leaving the room mid conversation. This reaction is a dangerous one, particularly in children as the 'flight' can lead them directly into more hazardous situations such as traffic. The response may be fought against and 'over-ridden' by the freeze meltdown as the logical part of the brain fights to retain control of the reaction, knowing that to flee the circumstances may be dangerous or have long term negative consequences.
There are two other terms I refer to a lot when I give talks and training, these are things I am (very slowly) trying to write a book about as I don't think they are very well understood, even in the autistic community:
Social Hangover
The consequences of an intense period of socialising - often a conference or highly stressful event like a wedding or funeral. The 'symptoms' are very similar to an alcohol hangover and can take several hours to dissipate. Best dealt with in the same manner as the post-meltdown period and whenever possible planned for, its very rare a large scale event like a birthday party or day out at the zoo won't have some measure of social hangover the next day!
Autism Fatigue
The almost chronic exhaustion that arises after a period of time exposed to lots of social interactions, sensory input or extreme emotion. It can be built over time or happen very quickly, I often experience autism fatigue at the weekend after long weeks at work when I've had to deal with lots of 'peopling' or my commute has been difficult (not unusual on the GNR/Thameslink line!)
Showing posts with label Meltdown. Show all posts
Showing posts with label Meltdown. Show all posts
Thursday, 25 October 2018
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]
Sunday, 5 March 2017
Game over
This weekend has been a difficult one for me. A disappointing one because yet again I let my expectations get too high.
It's hard to explain, particularly when people have this curious view of autistic folks like me not having empathy or emotions, but I feel very deeply and can get majorly affected by others actions or inactions. I also can't stand getting caught in silly hostile 'politics' and nasty cliques.
I try so hard in my life to not let things affect me and yet time and time again I'm finding myself in these situations. The kind where I end up in tears and in meltdown mode because I don't know how to handle things.
My gut reaction to this weekend is to walk away from everything. From both SOT and the SSA, from my 30 games challenge, from the Saracens in general.
I hate myself for reacting in such a way, I know I need to take a step back and think pragmatically about everything but it's hard to do that when your memories are tied so intrinsically to your emotions.
I understand in my brain that the team don't have to come round and interact with the fans, I know that they know nothing of this stupid pettiness between the two groups and I know that I shouldn't expect more than just a game of rugby when I go to a match. But it still hurts to see the team go to the other corner of the pitch to say hi to the fans there, to see them look at the flag we were holding high and merely applaude and walk away. It shouldn't hurt, I should be more mature than this, but right now I feel like the kid who didn't get invited to the party again, the kid who can't find anyone to sit with at lunchtime, the kid who doesn't want to go to school anymore because it's so miserable.
I've worked too damn hard to get away from being that kid. I did my time as that child when I was in school and I refuse to do it again as an adult.
I need to stop setting my expectations too high, learn to want to be happy with "okay" and stop thinking that two "greats" in a row will mean anything changes. And to stop believing things people say just because they're saying something I want to hear/read. It's time to face the reality of life again after being in a bubble for a while. Show up, watch the game, go home.
I will make 30 games for this challenge. And then I will walk away with my head held high, leaving on my terms. It's about self-protection you see?
It's hard to explain, particularly when people have this curious view of autistic folks like me not having empathy or emotions, but I feel very deeply and can get majorly affected by others actions or inactions. I also can't stand getting caught in silly hostile 'politics' and nasty cliques.
I try so hard in my life to not let things affect me and yet time and time again I'm finding myself in these situations. The kind where I end up in tears and in meltdown mode because I don't know how to handle things.
My gut reaction to this weekend is to walk away from everything. From both SOT and the SSA, from my 30 games challenge, from the Saracens in general.
I hate myself for reacting in such a way, I know I need to take a step back and think pragmatically about everything but it's hard to do that when your memories are tied so intrinsically to your emotions.
I understand in my brain that the team don't have to come round and interact with the fans, I know that they know nothing of this stupid pettiness between the two groups and I know that I shouldn't expect more than just a game of rugby when I go to a match. But it still hurts to see the team go to the other corner of the pitch to say hi to the fans there, to see them look at the flag we were holding high and merely applaude and walk away. It shouldn't hurt, I should be more mature than this, but right now I feel like the kid who didn't get invited to the party again, the kid who can't find anyone to sit with at lunchtime, the kid who doesn't want to go to school anymore because it's so miserable.
I've worked too damn hard to get away from being that kid. I did my time as that child when I was in school and I refuse to do it again as an adult.
I need to stop setting my expectations too high, learn to want to be happy with "okay" and stop thinking that two "greats" in a row will mean anything changes. And to stop believing things people say just because they're saying something I want to hear/read. It's time to face the reality of life again after being in a bubble for a while. Show up, watch the game, go home.
I will make 30 games for this challenge. And then I will walk away with my head held high, leaving on my terms. It's about self-protection you see?
Monday, 25 April 2016
Isolation vs over-stimulation
I've come to realise recently just how isolated my life had become from what it used to be; I spend the whole working day with the same people, very rarely interacting with anyone new, before coming home to an empty flat where I spend my evenings alone with my TV and laptop for company, making the occasional phone calls to the same half dozen people. My weekends are often just me and my revision / housework / recovery processes, once in a whilst interspersed with a visit to/from a family member or a trip into London to do something Autism related.
Compare this to the almost manically busy life I used to have when I was a student - days filled with lectures, union meetings, social groups and endless nights out I barely remember (but know were good fun!) That life wasn't sustainable though and I often found myself suddenly having to spend periods retreating from my plans and hiding away in an almost hibernating state to restore some balance. Sometimes just coming down from an over-stimulation was a long slog on its own, the world didn't stop being noisy and bright and demanding just because I wanted a time-out and people weren't always very understanding when I tried to explain that it wasn't an alcohol hangover I had but a sensory or social one.
The tricky thing in life is finding the mid-way point between what's needed for recovery and isolation and then putting that on an even functioning keel with social activity (bearing in mind that work/going to the supermarket/filling the car with petrol all count as a form of social activity!)
I find now as I'm older and more knowledgeable about my own limitations and predictable reactions that I can start to formulate ways to 'have my cake and eat it' - by finding activities that fulfil my need for interactions whilst still allowing me enough down time to be ready to face whatever the next day may hold.
Throughout the Sunday-Thursday period I have to tread carefully to ensure that my working day the next day is not impacted upon by any lingering effects but come Friday/Saturday I have a lot more freedom to push my boundaries and go for the full-on 'social experience' and all the consequences that follow it. Its difficult to explain at times but even the smallest of things can add to a growing mountain of stimulation leading to overload; one too many announcements on a train, the overly strong perfume of the person in front at the cashpoint queue, multiple TV's showing different games/sports in pubs, too many new faces and names to remember at once, the list can be endless.
My latest excursion into London (and straight back out to Reading) for Saturday's Saracens vs Wasps semi-final was one of the more bizarre yet successful experiences I've had recently - a match I hadn't planned to attend yet found myself in possession of tickets for courtesy of a Twitter competition. All of a sudden not only did I now have plans for a previously free weekend but I had to work out a whole host of details, including who I was giving the other ticket to! Family and friends were all unavailable as due to the short notice (I found out I had tickets on the Tuesday) they were all booked up. Luckily social media came to my rescue and I was able to have a really wonderful time at the game with someone who not only appreciated the ticket but was able to give me a crash-course introduction to being a full-on member of the Sarries family!
I know not every experience I try will have such a happy ending (and most definitely wont involve that much wine being consumed afterwards!) and some will have potentially catastrophically bad results should my coping strategies fail me at the worst times, but I do know for sure that if I don't keep trying new things and pushing myself out there in the big wide world that the isolation I will be faced with will be horrible.
I don't like being on my own too long, I am, at heart, a people person who loves watching others enjoy life. I just have to weigh the balance of my need to indulge that side of my personality with what it will cost me without retreating into a fear-dominated mind-set of not doing anything 'in case' I can't cope.
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.
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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