Monday, 5 December 2011

An Adult Living with Autism by David Rowan ... continued

  • Dyslexia
Most commonly known and understood, possibly because large numbers of the population have very mild hints of this mild end of the spectrum. Ordinarily, experienced as a difficulty with either letters or numbers, it is often accompanied with a high intellect and sensitive and restless central nervous system.
  • Aspergers Syndrome:
An A-social condition which commonly induces a high intellectual capacity along with an emotional bewilderment and untypical social and relational perception. It may help to think of archetypal figures such as ‘Spok’ from star trek, or a mad professor who knows a great deal about his topic but cannot find the glasses on his head and has odd socks on. It is now thought that Einstein, Newton and Andy Warhol were Aspergers.

There is a sensitive central nervous system which is easily overwhelmed by sensory phenomena; sounds, smells, touch, textures of clothing, the strength of light ... can all be relentlessly uncomfortable. 

Imagine that all the while a main ceiling light is switched on in your living room, someone is standing behind you, tapping your neck with a pencil – all the time ... or, imagine that the sound of aggression, whether directed at you or not, is not just heard, but is felt like a sharp physical punch ... or, imagine that the weight of clothing constantly taps at your attention.

When I walk into an unfamiliar large shop, like a supermarket or shopping arcade, I am often swamped with the movements, lights, colours, sounds and smells which seem to rush at me like a sensory wave. It can seem a bit disconcerting at times and I often react by becoming a little withdrawn. After a while, my system seems to acclimatise and a sense of balance is restored (unless the environment is very busy, noise, or bright, in which case it can become overwhelming to the point of needing to remove myself from the environment).

In spectral terms, Aspergers Syndrome may be thought of as a very very strong dyslexia: Dyslexia + + ...

and ...
  • Dyspraxia:
A motor-coordination problem. My brain is wired in such a way that my hand, and feet, sometimes move involuntarily, or land wide of an intended mark. For example:

I often peel my thumb instead of the potato I am holding ...

My guitar playing may be creative and interesting, but it is also rather clunky. I play blues and rock guitar because they require a little less precision than classical guitar and if I am recording a song I am often in a great deal of pain before the song ends – it can take an incredible amount of time to do a simple take. Likewise, it takes me a very long time to chop the veg for dinner or to write a reply to an email ...

The feet and general spatial awareness are a problem bordering on inconvenient. I sometimes trip over nothing and crash to the floor with an inelegant surprise – I got a stick to walk with in 20098, and this has helped tremendously. I often bump into doorframes, rather than go smoothly though the gap (my feet tend to follow my  eye and if I am looking at the door frame in order to judge its distance, instead of passing by it I find I walk into it – even though I do not want to). I have almost caused a dozen heart attacks in glassware and gift shops and now only visit such places feeling a very strong sense of being self-conscious. I am also slightly echo-praxic, meaning that I involuntarily copy other’s movements. If I am at a gig and someone looks up to the lighting rig, I take my eye off the band and look upwards as well – which is very irritating because I lose the moment I was enraptured in (which is why I like to be at the front, so I can become lost inside the performance and not be jolted out if it). Embarrassingly, I also find myself following  ‘the car in front’, turning wherever they turn, even if I want to go in a different direction ...
and ...

I wouldn't change being Aspergers for the world

It certainly isn't a disease; a disease may be defined as a condition with consistent symptoms caused by an infection.

Aspergers is a syndrome; a varied collection of traits from which different individuals have salient combinations. The (British) Autistic Society calls viewing the world from a mainly right-brain perspective; an Autistic Spectrum Disorder. I strongly disagree: I think it would be more accurate to call it an Autistic Spectrum Perception.

One can only describe a character trait as one of many potential expressions from a rainbow of human possibilities. If there were such a thing as a standard off-the-shelf  'normal'  human then yes, anyone outside of that norm could be considered disordered. However, because human beings are not machines, the concepts of  'normalising'  is misplaced and, therefore, while an individual may be disadvantaged in certain areas of life, to say one is disordered is, in my opinion, unacceptable.

Labels are important - they help people to understand things and relate with the world appropriately. For example,
 'Safe car’ - is a label ... 'Death trap' - is a label.

We must know the difference. ...

'Pedant' - is a label ... 'Aspergers' - is a label.

If you are able to discern the difference between these two distinctly different orientations in consciousness and correctly identify which one applies to me, then you will be able to respond to me with appropriate sensitivity - or, if not, and you respond to me as if I am an awkward pedant, I will feel bullied, alienated and misunderstood.

The label 'Aspergers' allows non-Aspergers people to step out of the lens of their judgments and view me from a different perspective. Unfortunately, our present society does not seem to have kindness and gentleness at its core - and that is possibly due to the neuro-typicals who run everything from the government to the media and entertainment industry ...

For me, being an adult with an autism  hat-trick, is like a wonderful gift. I may miss what others see, but I see what others miss; and while my right brain opens into wonderful creativity, it also has a heightened sensitivity for another's experience and people comment that my astrology readings have an insight into their inner world and psyche which is profound and deeply moving.

Memory:

Regarding my memory, I often forget things - and often important things too. For a neuro-typical, if something is over looked it signifies that the over looked thing was somehow unimportant, as if the amnesia signified a diminished sense of value. This is not the case with the autistic spectrum: I forget trivial stuff and important stuff just the same; this is one of the reasons I find finances so hard to manage - I constantly forget to remember to say things and miss deadlines and then all the dominos fall over. I can have an intention to tell someone something important and if I then get distracted by something, days can go by before I say what I was going to say. There is no malice in this, nor any intention to deceive; it is more a question or managing a chaotic mind: Asperger's Syndrome, Mercury in Pisces, however you wish to describe it, the phenomenon is the same ... it is also a very creative and inspirational place to find oneself - though not good for practicality.

Communicating: listening and speaking through the lens of literalism:

People with Asperger's are inclined towards literalism, which colours both how I express myself and how I receive what is said to me. It would seem that non-Asperger's people, sometimes referred to as, 'neuro-typicicals', communicate with inferences, hints and implications. To me, these nuances of communication are invisible. Conversely, people often respond to things I say as if I said different words and I find this very confusing. Another source of confusion for me is ambiguity and whenever I am confused I tend to adopt the approach of seeking clarity. I do this by asking questions. Sometimes, my questions are ignored because the person I am seeking clarity from is not clear themselves. Sometimes, my questions are met with hostility because the person I am seeking clarity from does not understand that I did not understand, and so presumes I am asking questions because I have some kind of nefarious or hurtful agenda ... or perhaps I am just plain awkward and pedant. I am none of these things; I am an autistic spectrum communicator. Being an autistic spectrum thinker is great for being creative but I do tend to get lost in conversation in which the references are unclear - it is as if my ability to intuit the context does not work; I find it particularly difficult to follow someone if they refer back to something which was said previously, long or short term, without describing it specifically.

For example, when I posted something on facebook about BBC Radio 4 interviewing me at Stonehenge, someone made a comment about my accent; 'how do you sound with that accent ?', she asked ...

I had no idea how to answer this question. 'How do you sound with that accent ?' - what does this question mean ?

is it a sarcastic remark ? ... is it a compliment ?

I had no idea how to interpret the question, let alone answer it. I have been listening to the sound of my voice, via my ears and jaw-bone for almost 49 years. I have been listening to my voice on recordings; songs, then relaxation tapes, then CDs, then mp3s since 1980. I have heard my voice on the radio half a dozen times since 1994. I have heard it on MAP training videos since 1995, and via the TV twice since 2001 - and on u-tube astrology videos since 2010 ...

To an Asperger's mind; a sentence made with reference to a comment you have made in the past, and can obviously remember, sounds like a random statement to me, because, I do not know what memory of what you have said previously that you are referring to ...

This is not awkwardness, nor pedantry, it is autism - my brain errs towards literalism and cannot follow cryptic messages or ambiguities; I do not have the intuition afforded to those of a 'neuro-typical' nature.

All can do is either become bemused and perplexed at not knowing what you are driving at, and not knowing if you are complimenting or ridiculing my voice
or ...

ask !

Rather than guess what you mean and risk making an erroneous presumption, I prefer to ask, and I hope I ask in a clear and polite way. I have no desire to cause any discomfort - I just want to understand ... x

There are things my aspie brain can do very easily, that neuro-typical brains find more difficult. I teach people these things and am told I am gifted; though really, I am just living through a different perceptual experience. Likewise, there are things that neuro-typicals find natural and easy that aspies find really hard, or even nigh-on impossible.

For example: to illustrate both perspectives imagine a physically disabled person picking up a coin from the floor. For an able bodied person, this action may be so un-challenging that they hardly notice the effort in doing it. For the disabled person though, it may require a herculean effort ...

Now, make the disability invisible; imagine a voice so clear and articulate that the aspie person sounds wise and very capable. Imagine, a reference to something has been dropped during a conversation which has meandered back and forth between three topics. The neuro-typical person makes a comment about one of these three topics and, rather than specifically making a reference to it (naming the topic) they refer to the topic as 'it', using an unspecified reference. Intuiting which topic the  'it'  is referring to is easy for the neuro-typical, they can mentally pick up the coin. For the Asperger's person listening, the use of the unspecified  'it'  is the precursor to a whirl of  confusion, self-doubt, frustration, humiliation and embarrassment. If the Asperger's person is at that moment feeling particularly vulnerable or shy, the confusion may be held internally and their self confidence bruised. If the Asperger's person is feeling safe with the communicator, they may ask the communicator to clarify what they said; which may confuse the communicator because the communicator may well believe they have been absolutely clear; the communicator could follow their train of thought and knew what they meant when they said the word  'it', so surely, anyone they are speaking with can also do the same ...

Things we find easy others may not. Things we find difficultt, others may find easy. Following an ambiguous, or unstated context, for me, is nigh-on impossible; though I do understand, that other people find it easy and communicate that way frequently.

When my brain becomes befuddled, it goes through a sort of 360 degree random context search and, because I do not know the context (and, for my autistic brain, regardless ...of every previous conversation, it is contextually neutral and blank) I begin to think of every possible meaning I can attribute to the sentence; and, being somewhat bright, that means I am overwhelmed with dozens of varieties of means - instantly ...

This is not personal - my brain responds this way to every ambiguous statement I hear, regardless of who the communicator is; a news presenter on TV, a close friend, a client ... my brain is always seeking clarity and finds befuddlement painful. As far as I can tell, a lot of aspergers people have a similar experience.

Figures of speech are another source of chaotic bedlam for the Aspie mind. People tend to use figures of speech that they are familiar with, and often, it seems, presume that the recipient of their communication is either already familiar with  the figure, or, is easily able to intuit its meaning and this  would be the case for a neuro-typical.

However, for an aspie brain, it is very different.

To use the example set out previous, that of my voice on the radio: if the inquiry had been phrased in the following way, without any figures of speech or assumed understanding, 'How does your voice sound to you on the radio ?', I would have understood immediately and been very happy to give the most accurate and detailed answer possible. I am not a pedant; to me, a pedant is a person who is somehow deciding to be pedantic, as if they have a choice in the matter, or are able to modify their pedantry or even stop it altogether, for diplomatic reasons, for example. I cannot pick up pedantry and put it down again; pedantry is not something I do, it is bi-product of a neural orientation.

When an aspie understands a question, they are likely to embark on a great and deep inquiry, so beware ! - your easy, light, casual question can actually end up as a PhD research study which takes more than five years to complete ... :)

I am still answering a question I was asked about astrology in 1983 :

I'd also like to mention ...

in my aspie experience, I often find that people forget that I am aspergers and expect me to respond in a neuro-typical way. Even very close friends, sometimes seem to forget, and I think this is largely down to a couple of things;

I use all I know about NLP and modern applied psychology, and astrology, to learn how to function in accord with society. A policewoman once told me I am not an aspie because I was engaging in eye-contact with her, ‘the books say ...blah blah eye-contact’, she exclaimed - 'So you cannot be Asperger's'.  She did not know I taught myself to hold eye contact after reading a book on how to be friendly when I was 16. I also used to do  ‘smiling exercises’  in a mirror, often for more than an hour a day ...

(did you hear the way I said, ‘Hello ...’, on the radio 4 thingy at Stonehenge  ? it is my  ‘learned’  hello, and you’ll see at the top of notes and hear it at the beginning of my Relaxation and hypnotherapy CDs ...  and if you watch the Big Breakfast footage on my web site or on facebook, you will notice that when Chris, the staff member, walks along the line saying, ‘big lorry, yellow lorry', with his arms outstretched, for a few steps, I follow and walk along with him. I couldn’t help it – I often, quite unconsciously follow people’s actions and direction – at a lecture last summer I first heard the term, ‘Echo-praxia’.)

So, to a large extent, I work at fitting in and this means my perceptual orientation/condition/autism becomes invisible to those around me. It is still there though, it is the lends through which I view life and express muyself, and when I respond in an appropriately aspie way I am often met with surprise, irritation, bewilderment, even anger ...

Imagine that ? – a person in a wheelchair being met with anger because it took them a while to pick up 50p from the floor – outrageous !!!

It won’t happen though, unless you are with a very unpleasant person, because a wheelchair is visible and thus, is always a part of the context of how we relate with that person. Have a go, if you can, of thinking of those in the autistic spectrum as living inside invisible neuro-chairs; it is how they filter what comes in to them .. and how they express themselves to the world around them. Questions and apparent pedantry are s not personal, just like needing to wear glasses is not a personal attack on those who do not like glasses. It is just a way of experience reality and is often invisible to the observer, and even forgotten sometimes by those who love them.

I apologise if anyone who lives with someone in the autistic spectrum finds any offence in my suggestion that they may sometimes forget their loved one has dyslexia, or aspergers etc ... It is not a comment about you – it is a description of my experience of reality, and may only be a description of the life of Dave.  If you’d like to know if anyone else has these kind of experiences, it would be interesting to ask ...
for more info, see here: 
David

Post script:
Living with a Beautiful  Mind’ - The Slings and Arrows of Outrageous Pedantry:  a possibly somewhat rude example of the difference between Aspergers logic and Neuro-typical pedantry

 One year in 2004, a household name company decided to champion a different cause – they chose the National Autistic Society. They put out the call through the company for anyone who’d like to participate who likes in the autistic spectrum, or lives with someone who lives within the autistic spectrum to be interviewed to create a booklet to encourage awareness …

I was mentioned and asked if I’d like to participate and I said, ‘of course’. They wanted to do a feature on me called, ‘living with a beautiful  mind’, which I thought was really nice. To do this, they had hired what  I can only describe as an in-house journalist, or at least, someone was delegated the task. She asked Reena if I’d be free to talk on the phone for half an hour one particular afternoon and was told,

‘yes, though  you’d better clear your diary for the afternoon’.

 ‘Oh, great. Though it will only be a short …’.  

‘Yes, I know - so you’d better clear your diary’ … the journalist’s puzzlement was itself short-lived …
The appointed moment came and the phone duly rang. We said, ‘hello’, and got chatting and she asked, ‘So, what’s it like living with an autistic spectrum disorder ?’

I heard the word ‘disorder’ and began to feel a need to either educate or encourage deeper thought.

I replied, ‘Well, I wouldn’t call it a disorder – I would say I have an Autistic Spectrum Perception’,

J – ‘oh, right, sorry. Well, I called it that because that’s what it says on the web National Autistic Society web site. Do you have a problem with the words people use ?  ...  you probably take words literally don’t you … ?

Hmmm ... I heard, and not for the first time, ‘...  you probably take words literally don’t you … ?’ and inwardly sighed ...

Because:

She asked the last part of her question with a tone that implied I am to be pitied because I take words literally and that literalism is some kind of problem. I decided deeper thought was required …

D – ahh .. ok, here’s a quote for you. Can you write this down verbatim ?

J – of course ..

D – ready …

J – full of anticipation, ‘yes’ …

D – ‘anyone who doesn’t take words literally … is a  Wanker !

J – ‘oh my goodness, what .., I , I can’t write that into the piece, I’m sorry but …

D – ‘that’s the quote, write it down, “anyone who doesn’t take words literally is a wanker” … ’

D – ‘really, they are … because wanker means, “highly attractive and intelligent individual” … doesn’t it … ? … :) '

J – ‘what ?...’

D – ‘wanker – means highly attractive and intelligent individual .. in the world of a person who doesn’t take words literally … doesn’t it ? … :) ’

J – ‘I’m not sure I follow …’

D – ‘ok; there aren’t two Oxford English Dictionaries really, are there ? It’s not as if there is the section that holds the words with relevant fixed meanings that we all refer to in a sense of shared reality, and there is the other section that holds the words with irrelevant meanings to which we randomly attribute whatever meaning we happen to feel like at the time. No, there is one English dictionary that states the agreed shared meaning of every word in the English dictionary. Either the word, ‘Wanker’ is offensive because we all agree that that is, because of it’s defined meaning in the body of literature we call a dictionary, or, the word ‘wanker’  means anything you want it to, because the only people who fix meanings to words are people who takes things literally, and they have a disorder.

Either, you take words literally, or you don’t; and if you don’t, you really are a wanker … :) ’

J – ‘ahhh … I see. Ha ha, though I still can’t print it’

D – ‘that’s a shame, because I am told I have a disorder by people who are doing exactly the same thing as me. Really, if anyone talks about someone as if being literal is a problem, just call them a wanker and they’ll soon realise their offended feelings are revealing that they are doing exactly the same thing – responding to words as if they have a shared and defined meaning’.

‘Honestly, if you wanted me to  communicate in a way that wasn’t literal I could draw a picture or dance or play some music but really, since words are both the  tools and product of a literal medium and I can only use them in a literal way …’

J – ‘you think deeply  don’t you ?’

D – ‘now, that is a trait of being Aspergers … :) ’

J – ‘and you seem to have a sense of humour, which the web site say’s you shouldn’t have’

D – ‘oh goodness, that one as well. Ok, journalist person, to me, it seems to be like this: if a comedian was playing at the comedy store in London and went out, did his act, and then shuffled off the stage to absolute silence, not even a slow clap or a boo, it would be totally unrealistic for the bad comedian to then announce, ‘what a terrible audience out there tonight. I was really very funny and not one of them laughed – not one of them has a sense of humour …’

Of course, this would be daft. It is not the audience who lacks a sense of humour, it the comedian who lacks the ability to inspire laughter within them. That’s right, isn’t it ?’

J – ‘well, yes …’


D- ‘So, I can only assume that one day some psychologist sat in front of someone with aspergers syndrome and told bad jokes so badly that he didn’t even raise a smile and like some deluded bad comedian announced, ‘the patient does not laugh – conclusion: Anyone with Aspergers Syndrome does not have a sense of humour’. This announcement is taken literally by other non-aspergers people as being a statement of truth and is even written on Aspergers websites as a guide to symptoms …’

She was on the phone for two and a half hours and I have a copy of the booklet, ‘Living with a Beautiful Mind’.

‘A human being is part of the whole, called by us 'universe,' a part limited in time and space. He experiences himself, his thoughts and feelings, as something separate from the rest -- a kind of optical delusion of consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us. Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty. Nobody is able to achieve this completely, but the striving for such achievement is in itself part of the liberation, and a foundation for inner security’.

 Albert  Einstein