Published on 12, July, 2020
This is a file that I hand out to local community groups and people whom I work with so that they are aware of the problems that I have.
My AS covers all 11 of the main categories and 30 of 46 sub-categories, of the data-set, which is used to diagnose AS. I am classed as ‘severe’ and this means that I am also learning disabled. Yes, I am highly intelligent (the army tested me at IQ167), but I am not working with the same mental set up as the rest of you.
NB: please see file ‘Advantages_of_AS.rtf’
The main differences between my world and yours are:
1.I cannot cope with noise. My ideal world is silent, and I can choose what I want to hear, e.g. choosing to go to the cinema, choosing to work in a particular environment, etc. As opposed being subject to noisy neighbours, emergency vehicle sirens, intrusive music on documentaries, bus brakes, i.e. being unable to choose and being forced to hear something, which I find overwhelming, for example a group of people talking and unable to pick out a voice.
2.I live in a literal world. When I am in a new verbal situation I need the interviewer to be aware that I take things literally, and that most humour passes me by. Another side-effect is that I cannot tell lies, not even tactful ones.
3.I do not have ‘common-sense’ that is because I cannot relate one incident to another; I use a person to communicate and translate your world into mine for me, usually my sister.
4.I do not understand the ‘obvious’ because it does not exist in a literal world because the presumption is that one has followed a line of ‘common knowledge’ to which I am not able to access.
5.I am face-blind; I was married for 11 years and Maureen had to wear distinctive clothing or introduce herself to me each time we met in public. This particular facet of AS I keep to myself, one has to be careful because I have learned the hard way that some people will take advantage.
6.I do not understand non-verbal communication.
7.I do not have an instinctive recognition of the 412 facial emotions because I am face-blind.
8.I do not see a whole argument or description; I see parts of it.
9.I cannot relate one of my life experiences to another.
10. I cannot project likely outcomes for new situations.
11. I cannot see ways of doing things in new situations; I cannot think on my feet. In a verbal situation I need to be asked short questions, rather than someone spending half an hour asking a question it is better to break it down into a series of short and simple questions. It may be necessary to explain the question to me, or even to write it down so that I can see what is needed to be said.
12. I do not understand emotions.
13. I do not understand death or your need to be emotional about it.
14. Learning new things takes me a very long time, and I need people who can break the process down into a series of logical yet simple processes, so that I arrive at the same place as everybody else, but I have gone through the whole subject logically. I learn in the same way that a computer does, if you do not tell the computer or me, then we do not ‘understand’ what it is you are saying, I think that is why I like computers.
15. I collect things everything from crocodiles, through frogs to dragons, and it is a compulsion to collect and never to throw anything away, because it might be useful – on the other hand I hold regular audits of what I have, and the excess goes down to the charity shop for others to use.
16. I list things, massive lists of items, that I may or may not need, and I like to learn trivia, which is basically learning lists of data.
17. I cannot bear to be late and prefer to be early, and shall go to extremes to ensure that I am early.
18. I am totally mono-minded, which gives me phenomenal concentration when working on a project, but excludes the rest of the world, even down to eating or sleeping. On the other hand it means that I find it very difficult to switch from one subject to another, something as simple as being asked whether or not I want a cup of tea, will throw me into a sense of panic as I try to comprehend what is being asked. When I am being interviewed by a panel, I always say that I will talk to one member of the panel, and if questions could be channeled that way.
19. When I walk I am clumsy, and using my hands for things, e.g. DIY, it is a case of measure 9 times and still cut in the wrong place, or end up with a wavy line.
20. I live in a world of singularities and compartments. An analogy would be a library, where each book represents an experience. In your library, you can relate and analyse one experience against another, and, when confronted with something new, come to some form of conclusion about what actions are needed. My library does not have a card index, or any form of index, so I cannot relate to, or analyse the various books; each of my experiences is unique, and bares no relationship to any other experience, no matter how alike they may be to you, they are separate events for me.
21. Manipulative behaviour, I am no more manipulative than any other 5 year old (part of my development ceased at around age 5).
22. I have advanced language skills, at a written level, and have a good vocabulary; at a verbal level, I forget what I am trying to say, or what the question was. Whatever I am doing I try to travel with someone who acts as my communicator, if I get stuck. I do get stuck in logic loops and I ask people never to give me an 'either/or' or 'neither/nor' question as I am unable to answer these. I have learned how to prevent this.
23.Motor Skills. I have great difficulty in getting my legs to do what I want them to do and I spend a lot of time falling straight down and landing on my knees. My legs are splayed and I am duck-footed and very clumsy. Despite 12 years in the army I never learned to march. My hands are OK for rough tasks but it is a case of measure 9 times and still cut in the wrong place. I try hard to do things, to draw a face when I cannot see faces, to do metal working with a file and to try to make a flat surface, to try to learn welding, yet my body will not let me do what my mind wants it to do. I can do basic facial expressions but find it very difficult to smile or grin and some lip movements in speech are difficult and I stammer. I try to avoid the telephone because of the speech problems, and, also, my hearing is going.
24.Sensory overloads, apart from sound, flashing images, blurred, too hot, too cold, windy, wet, being touched. I feel a wave of aggression if I watch a TV programme that portrays violence or aggressive behaviour, bus brakes, sirens on emergency vehicles, fireworks, Christmas crackers, sudden noises. Too many people or more than one person speaking at once. Tied in with this is the fact that all my senses overload at the same time, I do not just ‘hear’ a sound, I see it, feel it, taste it and smell it. I love music or the sound of water or a bird singing, the sound of paper when it is crumpled or ripped.
25.The need to be touched and the need to feel guilty about being touched anywhere on my body. This is a paradox because I cannot bear to be touched ordinarily.
26.I have a basic set of emotions: content, happy, sad, love, hate, anger, rage, fear; the nuances and other shades simply do not exist for me.
27.Everyone I meet has the same value to me and I find them to be good people, no matter how bad they may be to neurotypicals. Even people who are not nice to me are valued by me. I view people as Human Resources and they are all of value.
28.Once I have learned the basics of any subject or skill, I learn very fast, however, learning those foundations can and does take me longer than NTs.
29.I am meticulous and have an orderly mind and a liking for order.
30.I find social chit-chat difficult though I have learned a sort of business lingua franca for these occasions.
31.My face remains expressionless; I look passive. Partly this is because I do not know how to respond to people, partly because I cannot understand non-verbal communication and facial expressions, partly, it is also due to lack of motor skills.
32.Tics and other non-voluntary movements I get in my head, around my eyes, and my arms and hands go into tension – my fingers curl and twist. It is not painful but it is distressing when it happens in public, I am usually aware of when it is likely to happen and I try to keep myself as relaxed as possible – I do plenty of exercise but I cannot stop the twitches.
33.Alimentary Tract – stomach, intestines etc. I get bouts of diarrhoea and vomiting usually when under extreme stress, I cannot eat certain foods because they affect me and cause pain. Specific items which I cannot have: fat meat, sea salt, most sweets and chocolates, artificial sweeteners and colourings, mono-sodium-glutamate. In 2004 my gall bladder was removed (it had exploded several months before but I was not aware of it because of the acute and chronic pain from the arthritis and also because of my difficulty with ‘feeling’ pain – see below).
34.Pain – I have difficulty in locating where a pain really is or in feeling it, though I am in constant pain from the arthritis I cannot tell exactly where the pain is coming from. Also when I get another pain it will get mixed up with the original pain, e.g. when the gall bladder exploded I was unable to ‘feel’ it or to fix where it was.
35.Anxiety – I have this all of the time, though I do not appear to be anxious and I get reactive depression as a consequence – my body gets diarrhoea, stomach upsets, sickness, odd aches or cramps.
most of things u had, i actually, surprise to, overcome. although, i have a dsypraxia, i started to learn to read faces and learn emotion. but it's slow progress. In the my past life, i learnt it the hard way. it's possible for autistics learn emotions and interact with people but this takes time, a very long time. i'm still a literal thinker, so i have difficulty understanding advance communications skills and techniques but i get the basics of it.
hi kester, i appreciate you may not be a qualified doctor but as the qualified doctors are not succeeding so good i wonder if you could help me to understand what solutions could be provided for people like yourself...
some things may be very difficult for the government and charities to provide... but based on what realistically should be provided by charities who care for you, here and now, today, what kind of help would you most like to see on the table?
good point
I slowly became aware of differences and I just wrote them down, so I suspect that their order is indeed in a form of order, which is formed from how annoying something is.
some interesting reading there. is it in order of priority, or would that be a useful thing to think about next?
I recommend to everyone that they adopt a 'Positive Mental Attitude', it does wonders for the ego and one's confidence.
Negativity and things that try to drag me into depression or doubt are turned over on themselves and become positives because there is always something good in everything, if only one sits down and thinks it through.
If I was not disabled then it is doubtful that I would have discovered the marvelous world of writing, of being an author of 2 books (third on the way), a performance poet, a cartoonist, an artist, a garden designer, a gardener, a modeller, a Parliamentary lobbyist, a volunteer with local community groups.
A lot of good and wonderful things have come my way because I have taken my own path and now I have a great partner (who is also severely disabled) and we support each other through the ups and downs of everyday life.
Thanks for sharing that Kester, it's really interesting to read and I really hope things might improve for you with the NHS and charities, it must be very difficult.
I am multiply disabled and I am one person and I should like to be treated as a single entity rather than a multiple of labels, which are ignored or passed over by mainstream NHS and charities because I do not fit into their nice neat round pigeon holes.
My Disablement and How it Affects Me
Current Medication
Amitriptylene hydrochloride 50mg – 2 at night
Aqueous cream – as needed
Diclofenac sodium enteric coated 50mg – one 3x daily
Loperamide 2mg – as needed
Paracetamol soluble 500mg – 8 in 24 hours
Tramadol 150mg - one 2x daily
Zydol 100mg – 2x daily
Omeprazole 20mg – 1x daily
Lipitor 20mg – 1x to be taken before eating
Simvastatin 80mg – 1 at night
Atorvastatin 20mg – 1 in the morning
Multivitamins and cod liver oil capsules.
Brief Disablement History
I was born with AUTISM (Asperger's and high function autism – see file ‘My-AS’) and am acutely ego-centric and mono-minded to the exclusion of all else, e.g. getting dressed, personal hygiene, taking tablets, going to sleep, eating, drinking, etc., and will happily continue with whatever it is that I am doing until it is done. Something else will then attract my attention and I go off and do that.
My live in carer phones me up at regular intervals, when she is not here with me, and makes certain that I have done the basics of everyday life and that I have taken my tablets and eaten and had something to drink.
Likewise my sister takes care of my money and the arranging of direct debits for all the regular bills.
At age 4 was in car crash with my mother and we ended upside down in a canal and I drowned and I still remember drowning some 50 years later. We were lucky there was an ambulance behind us and they rescued us. I still get flashbacks from this (PTSD).
Christmas Day 1958 I was raped by a family friend this went on for 5 years, several times a week, likewise get flashbacks with this and full-blown PTSD. I remember that he always said that no one ‘would believe a crip kid who lived in a fantasy world’. Mum caught him in the end – don’t know what happened to him.
At age 18 volunteered for the army and served a total of 12 years, halfway through, in 1976 the pain started in my back, and was put down to low mechanical damage by the army medical people; I was a gunner on Chieftain tanks and there was no protection or support for your back in that position, especially when travelling across rough ground; likewise there is no protection for your back in an FV432 tracked ambulance when you are the commander or the medic I was both from 1978 onwards.
After the army walked round Europe, then owned and ran 3 businesses – dry stone walling, bricking, and house cleaning.
At age 33 had a massive nervous breakdown, between my second and third businesses, and was sent to Bexley Secure Hospital on Section and later semi-permanent, for 6 years. I was an in-patient, then in psychotherapy, then in the halfway house and then on license, at age 39 I was given a clean bill of health.
During my time as an inpatient I had ECT (Electro-Convulsive Therapy) which has put paid to my short-term memory, basically I live now, hence the notebooks, and need day and night care because I am not aware of dangers and of the necessity of getting changed when I **** myself (see above – Asperger’s).
A knock-on effect of the damaged back is osteo and rheumatoid arthritis in my spine, and also systemic arthritis which affects my internal organs; eczema and psoriasis which affect my scalp on occasion.
I also have ankylosing spondylosis (bones fused) and ankylosing spondylitis (bones in process of fusing), damage to nerves in my back and bi-lateral sciatica from waist to soles of feet; cervical spondylosis and spondylitis, damage to nerves in my neck and bi-lateral trigeminal neuralgia which affects my neck, head, sinuses, ears, mouth, nose, cheeks, eyes and forehead – I cannot wear dentures due to pain and damage to my mouth.
I am fused from T6 down to coccyx and C1 to C4, this means that I cannot bend and cannot do such things as cut my toenails, wipe my bottom after passing faeces, get into or out of a bath, carry shopping bags, etc. My spine, viewed from the side, looks like an upside down question mark with my tummy pushed far forward.
My main disablement is PAIN which is ACUTE and CHRONIC and which I have on a 24/7 basis, and have had for the last 34 years.
A consequence of severe pain is ANGER and the aggression helps me to get through each day; and it allows me to do my exercises and to crawl around a shared allotment doing the weeding.
Most people find me aggressive and single-minded, I am not a doormat and people who try to use me as such get short shrift.
I use the anger and aggression to do exercises and my arms and legs are very fit; my middle is not very flexible because I am fused from 6 inches above my waist to the pelvis (T6 down to coccyx) and about half of my neck (C1 to C4) is fused.
I get a lot of pain in my face from the trigeminal nerves, especially my eyes, my face burns and my teeth hurt – even the ones that I do not have anymore - due to the fused bones in my neck and a hell of a lot of pain in both sciatic nerves from waist to soles of feet.
In June 2003 I had my gall bladder removed and I have had permanent diarrhoea since then and am on a very low fat diet. I do not wear ‘nappies’ because I am not a baby and because of the problems of getting them on/off, on my own, due to the arthritis.
Latterly I am having digestion problems and my gut is producing large amounts of wind.
I cannot walk without pain and can only walk in short bursts before having to sit down or lie down. I wear a powerchair and have 1 spare manual chair for when others can push me.
October 2009 it has been confirmed that I have cerebella atrophy, which affects the cerebellum at the base of the brain and the top of the spinal cord. It is affecting my decision process and worsening the mental effects of my depression and autism.
The Eight Asperger’s Syndrome Advantages
THESE TRAITS ARE USED BY ME TO DEVELOP INVALUABLE LEADERSHIP AND ENTREPRENEURIAL SKILLS.
1. FOCUS
The ability to focus on one objective over long periods of time without becoming distracted allows me to accomplish large and challenging tasks.
2. UNIQUE GLOBAL INSIGHTS
The ability to find novel connections among multi-disciplinary facts and ideas allows me to create new, coherent, and meaningful insight that others would not have reached without me.
3. INDEPENDENT THINKING
My willingness to consider unpopular or unusual possibilities generates new options and opportunities and can pave the way for others.
4. INTERNAL MOTIVATION
Rather than being swayed by social convention, other's opinions, social pressure or fears, I can hold firm to my own purpose. My unique ideas can thrive, despite opposing viewpoints.
5. ATTENTION TO DETAIL
The ability to remember and process minute details without getting lost or overwhelmed gives me a distinct advantage when solving complex problems.
6. 3-DIMENSIONAL THINKING (and multi-dimensions)
The ability to utilize 3-dimensional visioning gives me a unique perspective when designing and creating solutions.
7. CUTTING THROUGH THE SMOKE SCREEN
The ability to recognize and speak the truth that is being "conveniently" ignored by others can be vital to the success of a project, activity or endeavour.
8. LOGICAL DECISION MAKING
The ability to make logical and rational decisions and stick to my course of action without being swayed by impulse or emotional reactions allows me to navigate successfully through difficult situations without being pulled off-course.