I know it sounds ridiculous, but I’ve never really managed to get my head around the concept of pain. To be more precise, I am not sure at what point discomfort becomes pain. I assume that point varies from person to person, but I am at a loss to define what constitutes pain; is it perhaps any sensation eased by painkillers, buy that would include lesser sensations like itches. I frequently experience severe discomfort particularly in the presence of loud or discordant noise, but also, for many years, muscle aches and migraines. A migraine can prostrate me in a darkened room, but I am not sure whether it is pain, it occurs as inconvenience, I somehow expect pain to be worse. When my Son-in-law remarked to my daughter that I seemed to feel no pain when being tattooed, she reminded him that I used to get my teeth filled without anaesthetic, my new dentist is not so accommodating.
Acute pain is easier to identify both because it’s origin is usually more obvious, buy also its suddenness. It is the chronic discomfort that is harder to identify as pain, I think, because one gets used to it. When sensation is so intense it actually brings about a break in one’s ongoing interaction with the environment, then I think perhaps it may be called pain. I have some problems even with this as pleasure may do the same. I suppose, ultimately, whether an intense sensation is described as pleasure or pain, depends on whether it is welcome; perhaps it is only pain if I say it is. I know it sounds ridiculous, but I am still not sure whether I have grasped the concept of pain.
Filed under: asperger's syndrome, autism, disability | Tags: asperger's, asperger's syndrome, sensitivity, sensory overload, sensory processing
Skin crawling,
Muscles aching,
Lights glaring.
Voices blaring.
Not much fun,
Need a gun.
In my defense
I’d plead silence.
My skin feels as if a billion tiny insects are crawling over it, I desperately want to scratch, but once I start, I will find it hard to stop. I do not think there is any sensation worse than this whole body itch. Pain is not as agonizing as this, my every nerve is stretched tighter than a violin string on the point of snapping. On the point of snapping is where my temper sits just now; when I describe myself as ‘irritated’, I am not speaking metaphorically. Perhaps worst of all, I am itching inside my ears where my fingers are too fat to scratch.
This itch is unfortunately accompanied by excessive photosensitivity so that my eyes are prickling and watering. I have tskem refuge behind dark glasses, but they feel heavy and uncomfortable on my nose, and they make my eyebrows itch. The best thing about them is that they keep the world out.
At a time like this my sensitivity to noise becomes almost unbearable. It sounds as if everyone is shouting whereas , in reality, they are merely speaking, and there are altogether too many people speaking. The sound of passing traffic is deafening, fortunately it is nearly midnight so the traffic density is light. The photocopier on the other side of the room is far too loud for comfort. I wish everyone would just shut up.
My joints and muscles are suffused with a constant ache which every movement transforms into severe burning stab wound, but it’s not as bad as the itching, nothing is as bad as the itching.
It is a day since I wrote the above and I have hardly slept because of the over sensitivity. The strange thing is the way my wife beside me on the bed can hardly hear the sounds and voices irritating me. It’s hard to sleep when you’re itching all over and all the places your body touches the bed actually hurt. The good thing is, as I know from experience, this will pass.
Filed under: asperger's syndrome, autism, disability, Justice, Politics | Tags: asperger's, autism, British Sign Language, BSL, deafness, disability, Spitting The Dummy
I was watching “See Hear” on the BBC, it is an excellent program that should be broadcast all year without a break, but it isn’t, never mind. A couple of items caught my attention. The first was about the “Spit the Dummy” campaign to get British Sign Language recognised as an official British language and given equal weight with Gaelic and Welsh. BSL speakers, is that the correct term for people who communicate by gesture? Perhaps it should be because signing is every bit as valid a means of communication as speaking verbally. As I was saying BSL speakers want the same recognition and respect as the other languages of these Isles. It is ten years since Deaf activists got the government to recognise BSL, but without legislation to back up that recognition deaf people are still disadvantaged, even discriminated against in a society where spoken English is the norm to which we are expected to conform.
Why should I care, I’m not deaf? In the first place, discrimination is a matter of basic human rights. Secondly, while I am not deaf, I am acutely aware of how difficult it can be to communicate verbally, personally I think BSL signers make altogether too much eye contact, but I can appreciate how valuable it is as an alternative to spoken English, it is a language of these Isles and it’s “speakers” should have the same rights as any one else. For more information please refer to the articles at the end of this blog
I am not deaf, but I, like most people, to communicate. Gesture is natural to anyone with working hands it seems to me logical that we should all learn to sign, it is ultimately just structured gesture. My granddaughter is learning some signs in primary school, it seems sensible to teach signing alongside English, we just need to teach the teachers.
I an not deaf, I do not know what it is to be deaf. The other piece in the program that interested me was about a deaf student with a cochlear implant. At one point she talked about being able to retreat into silence. This resonated with me because as an autistic person subject to sensory processing problems and not infrequent overload I sometimes envy deaf people their silence; I would probably feel different if I had nothing but silence.
« BSL Recognition Timeline: A Work in Progress | Main
Deaf activists mark 10 years since BSL recognition with call for fresh action.
Donna Williams: How it feels to be ‘spitting the dummy’!
Ten years on: from BSL recognition to ‘Spit the Dummy’
Filed under: asperger's syndrome, autism, disability, Gardening, Travel, Writing | Tags: Alnmouth, asperger's, autism, Bangor County Down, gardens, Littlehampton, Scaleber Force, SSF
I tried to think of the five places to which I would most like to return and I realised that I couldn’t. There are many places that mean something to me but I found it impossible to select five above the rest. I thought of Amsterdam and my Grandmothers’ houses in Milton Avenue, Littlehampton and Shandon Drive, Bangor respectively; it was then I realised that it was not places to which I wanted to return so much as moments in my past. As everyone knows you cannot revisit your past, it is gone, but not forgotten.
I think, apart from my garden, the one place that I go to on a regular basis that would make my list is Cineworld in Renfield Street in Glasgow. I an not even sure it is Cineworld itself, but cinema. The cinema is my place of escape from ordinary reality. In the cinema I forget my life and get absorbed in other worlds which, however convoluted seem simpler. Life is easier to cope with when one is an observer rather than a participant. I suspect Asperger’s arises, to an extent, from a need to keep the world at a distance.
Less obvious places that come from my past include Scaleber Force, a waterfall in a small wood near Settle in Yorkshire. It’s not a big nor spectacular waterfall, but for me it symbolises peace. The sensation of lying on the springy grass, in the silence of the forest, silence in the sense of removal from the noises of civilisation, the summer sun coming through the trees and the roar of the water have left me with a sense of peace to which I can and do return. I haven’t been back to Scaleber since I left school, but Scaleber has never left me.
The Society of Saint Francis friary in Alnmouth make my list, again because of the peace I have known there. Strangely the first thing there that comes to my mind is the magnificent marble staircase. I remember, with awe, the beautiful garden tended by Brother Wilfred accompanied by his golden Labrador guide dog. That any one could create such beauty without being able to see it inspires me by his example, both of triumph over circumstances, and of service to others and to his God; in Brother Wilfred’s hands a garden was a prayer of love and a hymn of joy.
I am going to return in my mind to both my grandmothers’ houses, I think because of the warmth and love I felt. I know Mammy might not have occurred as the warmest of people, but she was solid, I felt that if she stood between me and the world, the world would break before it could reach me. My “Nanny in Sussex’s” house will always be a place of sunshine, my cousins, Chris and Lynn, taking us out for wonderful days of adventure and my cousin Barry letting me play with his electric train. Chris and Lynn gave me memories and Barry gave me his train set.
I shall finish this in my garden. My garden needs a lot of work and some days I wonder if I will ever be able to enjoy it, but then I realise I am enjoying it. Even if I never complete my garden, the process of building a vision continues to draw me and motivate me, while giving me a place where I can think without the world’s distractions.
The places to which I return? They live in my heart, they are where I find peace and refuge from the world and the insanity of life.
Filed under: asperger's syndrome, autism, disability, Gardening, Justice, Politics, social media, success, Writing | Tags: asperger's, asperger's syndrome, autism, Autism Awareness Month, commitment, Dilts' Logical Levels, discipline, est, NaPoWriMo, nlp, passion, Werner Erhard
I am sitting in the sunshine after a day spent working in my garden, now I’m sitting my grandchildren, life could be a lot worse. It is time to relax after a busy day and an even busier month.
I have talked about discipline before and I won’t repeat myself, but I think the biggest lesson of my month, and indeed this year, is that discipline makes things work for me. As well as setting myself a daily writing target this month, I completed a seminar, even taking holidays to meet my commitment. What I have learned about discipline is that when it is self imposed, arising out of passion it, rather than feeling like an imposition, becomes exciting, a goal to reach rather than a burden to carry. I don’t suppose Hillary and Tenzing would have conquered Everest if they had to, it was passion that took them to the summit.
I have learned something similar about commitment. When one promises something under duress or because of obligation, there is no real “buy in” to the accomplishment of the result. This sort of commitment in NLP terms exists at the Dilts logical level of “Behaviour”. Commitment, true commitment, exists at the higher levels of “Belief” and “Identity”, possibly even “Spirit”. Commitment arises out of “who you are in the matter”, thirty years on from the est Training and I’m finally beginning to get what Werner was talking about. Commitment occurs when what I say and who I am are one. Commitment occurs when your word and being are just “what’s so” who I am in the matter creates reality and it’s not just my reality, but as the Universe interacts with me, it is the reality of the Universe.
I began this month autistic, I end it autistic, but who I am in the matter is, that in this world autism is no more a cause for pity than celebration and that each and every one of us, whole, disabled, black, white, male, female, gay, straight, and autistic belongs and is equally valued here. April is over, have a great year!
Filed under: asperger's syndrome, autism, disability, Writing | Tags: AS, asd, asperger's, asperger's syndrome, autism, emotions, english language, information processing, language, NaPoWriMo, National Poetry Writing Month, sensory processing
Before NaPoWriMo it would never have occurred to me to try and rhyme either Pythagarean or multidimensional, it’s not easy!
I love to see the shape of sound
That resonates and shines around
My house; and, with shapes, fills my head,
From before dawn til time for bed.
Shapes reflecting all words said;
Pythagorus has never known
Some of the structures I’ve been shown.
In a concert there may be an
Abundance of new and strange forms
Far beyond Pythagorean
Imagination, which transforms
Music merely sensational,
Into something which may be found
To be multidimensional.
It’s a different perception
Of any sounds reception
That has music, so often felt,
Be something seen and even smelt.
Filed under: asperger's syndrome, autism, disability, Politics | Tags: AS, asd, asperger's, asperger's syndrome, autism, disability, emotions, neurolinguistic programming, nlp
On Tuesday the month ends. This year I have to admit Autism Awareness month, or Autism Acceptance month, has made little impact on me as my focus has been very much on National Poetry Writing Month. It has been the least stressful April for years, I have argued with no one, despite there being a Measles epidemic over here, I haven’t managed to pick a fight with an anti-vaxxer, I am feeling chilled and virtuous. I have even made a positive connection with a cure seeker, I wouldn’t have predicted that last April.
The month may be ending, autism isn’t and our respective struggles continue, even if the spotlight has been turned from us. If I would want us to take anything forward over the year, it would be respect and tolerance; how can we expect acceptance when we present the world with a model of vicious intolerance and division. One thing autistics come to learn is that other people are very different, in all honesty it sometimes manifests more as “why are normal people so weird/horrible/wrong?”, but they are definitely different.
There is an NLP presupposition that, “People do the best they can with the resources they have available” and another that “all actions have a positive intent”. If someone espouses a ridiculous point of view, it does not mean they are are bad, it merely means that the data they have is flawed or is it? Before we correct them let’s double check our own sources first; are they empirically sound, are they up to date? Autism is a subject that provokes strong emotional reactions from some people, particularly the neurotypical who are less prone to rely on reason. We need to put our emotions aside and treat their opinions logically and respectfully. There may be some beliefs from which no amount of science or reason will sway them, but this is no reason to hold them in contempt, they remain human beings. Far better to find common ground upon which we can build, than insist on wasting energy in pointless struggle. If they are unwilling to put aside differences for the sake of the greater goal then shake their dust off your sandals and pursue more fruitful activities. At the end of the day we have a goal that is too important to allow us to waste time in fruitless argument, better to focus on reaching out with the truth where we can make a difference and hopefully allow that which is unhelpful to wither from neglect.
