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if you have any questions about Asperger's syndrome. I'd also like to hear from you if you are interested in contributing a PDF version of this article, including a table of contents.

Asperger's is not actually a syndrome or a disease, but a set of personality traits. To learn more about Asperger's, see OASIS, check out your local Asperger's Meetup (highly recommended), visit your local university's library, or talk to a psychiatrist, psychologist or social worker who has experience treating people with Asperger's.

Marc Segar 1974-1997

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The Battles of the Autistic Thinker

 

A survival guide for people with Asperger syndrome

Marc Segar

April 1997 Edition

Contents

Introduction *

Getting the best from this book *

Worrying *

Looking on the bright side *

Body language *

Boundaries *

Eye contact *

Tone of voice *

Dress sense *

Distortions of the truth *

Misunderstandings other people might have about you *

Conversation *

General knowledge *

Names *

Humour and conflict *

Sexually related problems and points about going out *

Nights out *

Chat ups *

Invitation *

Personal security *

Rape crisis *

Finding the right friends *

Keeping a clean slate *

Coming clean *

Education *

Living away from home *

Using the phone *

Guests *

Jobs and interviews *

Driving *

Travelling abroad *

Bartering *

Opportunities *

A personal in depth analysis of the problem *

Further reading *

INTRODUCTION (back to top)

As far back as I can remember, I have had intricate thoughts and ideas which have made me unique.

As a young child in early primary school, I used to spend most of my time just doing my own thing and not really making much sense to people. My ever intriguing thoughts and ideas were locked up in my head and I couldn't communicate them to others.

When I was seven years of age, I got my diagnosis of autism in a form which is now known as Asperger syndrome. It was not that long afterwards that I was moved into a special school called Whitefields in Walthamstow, London where for the next eight years I received specialist help, most of which came from a joyful, high spirited woman called Jenny. Not long after starting this school my family and I became involved in a family support group called Kith and Kids in which I am now a regular volunteer and work-shopper, always keeping active and creative.

At the age of fourteen I changed over to a school called West Lea in Edmonton where I was eventually able to take my GCSE's in which I did well. My recognition as being a worthy candidate for GCSE's was predominantly won by the French teacher, Mr Cole to whom I am very grateful.

At seventeen I was able to begin at the sixth-form in Winchmore where I worked hard on my A-levels but managed to turn myself into a serious target for the other students' teasing and torment, but it was also at this time when I first began learning how to stick up for myself, also realising that there were many unwritten rules about behaviour and conduct which everyone else knew except me.

I was then accepted by the University of Manchester to do a BSc in biochemistry which I have now completed. I began university under the same life long illusion I had always had of thinking that making a new start meant no more teasing to deal with. However, my social status in the first year was appalling and I spent a whole year living in a flat with seven other blokes, myself practically in complete isolation.

In the second year I ended up living in a house in Fallowfield where there happened to be three friends and two free spaces. I ended up there completely by random. I became best mates with Nick who ended up filling the extra space. He is a rebel through and through and has since taught me many of the tricks of the trade which I have needed on the highly worldly and sometimes hostile streets and night-clubs of Manchester. Between my second and third year I booked a rather impromptu place on an expedition in East Africa where, at my own risk, I spent much of my time away from the group (which rejected me), learning all about the life-styles and customs of the local people. Never before had my poor mum been so worried. In my final year I was fortunate enough to live with people who were extremely mature and witty in a constructive way. Since graduating I have done a variety of work with children with autism both here and abroad. I now work as a children's entertainer and I sincerely feel that this has been a successful move.

I have now decided to write a book with a purpose. It is aimed at passing on my experiences of surviving as an Asperger sufferer in a world where every situation is slightly different, for the benefit of other Asperger sufferers. I wish to lay out a set of rules and guide-lines, in a style similar to that of the highway code, in a format which doesn't change therefore not causing unnecessary confusion.

My points are intended to be phrased in ways which are unambiguous therefore not causing people to get confused or apply things out of context.

I will probably have an audience which consists of both autistic people and non-autistic people.

I would like to point out that many of the points I show might be down right obvious to some people but completely alien to others and I therefore wish to stress that I do not mean to be patronising or pedantic.

I choose to write this book now and not later because I feel that the relevant mistakes and lessons of my life are still clear in my head. Some people might see this book as being a little too worldly but I myself believe that if a borderline autistic person has to go out into this rather obnoxious world independently then the last thing they need is to be sheltered. I would strongly like to equip these people with the tricks and the knowledge they need in order to defend themselves and I don't wish to enforce opinions or be hypocritical. I have also drawn upon the benefits of constructive feedback from parents of other autistic people in writing this book. I would not like to feel that any of my autistic readers will be placed under unnecessary pressure to start reading this book. To begin with, just having this book lying around in one's bedroom might be enough to catch their eye and stimulate a healthy interest.

I intend for this book to serve the sole purpose of improving the quality of people's lives and would strongly urge any of my autistic audience not to get too stressed out trying to apply this book too quickly and to remember that Rome was not built in a day.

Even I myself am still having difficulties putting all of these rules into practice, but it certainly helps to be aware of them.

GETTING THE BEST FROM THIS BOOK (back to top)

WORRYING

LOOKING ON THE BRIGHT SIDE (back to top)

BODY LANGUAGE (back to top)

Boundaries

Eye contact

Tone of voice

  • You might be one of these people who almost talks in a single tone without knowing it.
  • Ask a trustworthy person if this is true and if it is, you may have to exaggerate the intonation in your voice to emphasise what you say, but not too much. This will sound artificial at first.
  • If you are reading a story-book to a child then the more intonation, the better.
  • The intonation in our voices is extremely important in determining whether we are being enthusiastic or sarcastic about something. It is also important in telling whether we mean something seriously or just as a joke.
  • To talk in a single tone can make it sound as if you're depressed. When talking about something good or exciting, you have to make yourself sound excited too, otherwise people tend to think it sounds strange.
  • If you are a young man whose voice is breaking, then if you find it more comfortable, just let it break for good. It may sound strange at first on the inside but it will be sounding much more natural on the outside. If you are worried about what your friends might think, which should only be a short term problem anyway, it might be useful to take the opportunity of letting your voice break while you are changing schools.
  • Finally, remember not to speak too loudly and not to speak too quietly. This should depend on the distance between you and the other person and the voice should be quieter when a bit of secrecy is needed. Whisper when everyone else is whispering (or when there is someone asleep nearby).
  • At times when you may need to talk extra loudly and clearly (e.g. on stage or in a play) then you may want to project your voice. To do this, keep a nice straight relaxed posture and imagine that your voice is coming from your stomach, however strange this may seem.
  • Dress sense

  • What clothes you wear gives off a message about you.
  • If you wear bright clashing coloured clothes, perhaps intending to look confident, many people are likely to lose interest in you.
  • If you wear cowboy boots, ripped jeans, heavy metal tee-shirts and a studded leather jacket, people might either be too scared to come near you or will expect to be able to talk to you about heavy metal, music systems, life on the streets and various different night-clubs. It is a very difficult image to pull off.
  • If you dress in natural colours such as blue, grey , dark-green, black or white, which people cannot laugh at, but still looking trendy, people will judge you on how you come across rather than what you are wearing, which is likely to be what you need.
  • It is often a good idea to hear someone else's opinion about what you should wear (talk to someone who you can trust).
  • DISTORTIONS OF THE TRUTH (back to top)

  • Sarcasm is when someone says one thing but means the opposite. For example, in response to hearing someone burp, someone else might say "how polite". The easiest way of picking up on sarcasm is by listening to tone of voice. You may need to defend yourself against sarcasm at times and this will be covered in following chapters.
  • Not knowing the truth is a common reason why people might distort it.
  • A particularly nasty form of distorted truth is "scape-goating". This is setting up other people to take the blame for things which aren't their fault. What is even worse is having someone deliberately do something wrong for the sole purpose of getting you blamed for it. If this happens, you must first work out whether it is just a joke or whether it is a serious set-up. If it is serious, and if the blame successfully reaches you, you may need to somehow prove that the wrong doing was not your fault in which case you must tell the right people that you think you've been set up and stick to your word.
  • On the other hand, someone might quite innocently create a false truth for the mere purpose of fantasy play. This might apply to children pretending to be comic cartoon heroes, adults dressed up in costume pretending to be father Christmas or someone who is acting in a play.
  • If someone asks you a question and giving them the true answer might upset them or cause embarrassment or unfair trouble to other people, you may decide to tell a "white-lie" which is intended to avoid unpleasantness all round.
  • If you don't wish to lie, you might still want to withhold the truth. You might be keeping a secret for someone or you might be trying to keep yourself or others out of trouble. In this case, it may be sensible to avoid certain topics of conversation otherwise you might be forced into pretending not to know something, using awkward diversion tactics (which often involve humour) or even lying. Also, you may be expected to automatically know when something is to be kept a secret.
  • If someone tries to get a message across to you without hurting you, they might decide to drop a hint. The best example of this is when a man is chatting up a woman but she doesn't want to go out with him in which case instead of saying "I'm not interested, go away" she might slip the words "my boyfriend" into the conversation.
  • Sometimes it is possible to be mislead by figures of speech (i.e. metaphors). For example, "I'm over the moon" means I'm very happy. If figures of speech are a problem for you, they can be looked up in certain books, or you can get someone to teach some to you.
  • Sometimes someone might lie to you if they want something from you. The best example of this is a door to door salesman who wants your money. If he sells you a television which doesn't work then he would be conning you.
  • In conversation, it is not unusual for people to exaggerate. Someone who says "I had about ten pints last night" might actually mean they only had five. People who exaggerate too much can be easily misinterpreted.
  • If someone says something which sounds offensive in the literal sense e.g. "You ugly mug face" but with a laugh and a smile, then they mean it as a joke. You often need to pick up on this quite quickly.
  • Perhaps the most awkward kind of lies you encounter are teasing lies in which someone says something as a joke to see whether or not you believe them. If what they have just said is highly unlikely or people around them are trying not to laugh, they are probably teasing you. The correct response to this would be to laughingly tell them to p*ss off. If you show doubt as to whether or not they are teasing you, they may see it as a sign of vulnerability. Remember they are probably never going to admit that they are teasing you, no matter how seriously you ask.
  • People might start trying to persuade you to make a spectacle of yourself somehow. For example, they may ask you to do a dance or sing a song. Even if you can't see anything wrong with this yourself, it is important not to give in to them, no matter how persuasive they become. The correct response is the same as that for a teasing lie, only perhaps with a touch of anger. If you give in to such requests, you will probably become an all round target for other peoples teasing. If you have already done this in the past, don't worry, just don't let it continue.
  • If ever joining in games like "truth or dare" or "strip poker" you could find yourself under even greater pressure to do something. In this case, it is often all right but you might be asked to do something which is completely "out of order" in which case if people become too persuasive you might prefer just to leave the room. If they are true friends, they won't hold it against you for more than a day.
  • It must be remembered that not everyone is loyal to the truth. Also, many people select certain parts of the truth and reject others to their own advantages (e.g. in court cases).
  • If you need to find out whether or not someone is lying and you have a good reason for doing so, asking them questions might reveal faults in their logic.
  • Misunderstandings other people might have about you

  • If you have difficulties with your eye-contact or body language, some people might mistake you for being shifty or dishonest. If they think this they are probably wrong.
  • If you don't react to other peoples body language with your own, they might mistake you for being unsympathetic.
  • Many people might make the mistake of thinking that you are unintelligent. If this is because you rarely get a chance to show them signs of intelligence, there may be little you can do except to let them accidentally see you doing something you're good at, whether they like it or not, just as a one off. They might decide not to comment even though they have seen your talent.
  • If you try to come across as being cooler, wittier, tougher and more confident than other people then whenever you break an unwritten rule, people might mistake it for nastiness. In this case, it might be in your best interest to drop your pretence.
  • CONVERSATION (back to top)

  • It may be known to you that the art of conversation is carried out within a set of constraining rules.
  • When people take part in a conversation, what they say normally has to follow on from the last thing that was said. We stick to the relevant so that the conversation flows smoothly.
  • Be careful of stating the obvious. You may also wish to avoid asking questions when you can work out the answer for yourself. This way, the conversation covers more useful ground.
  • Try to avoid repeating yourself or rephrasing yourself when you have already been understood. This may be rather difficult because repetition of thought is quite fundamental to autism. However, I take the approach of always looking for new things to think about. This seems to have been quite a successful move.
  • Also, some people reply to things you say before even giving you a chance to finish your sentence. However, if they have anticipated you correctly then their is usually no need for you to finish.
  • If you say something that doesn't make sense to the people around you, they might get annoyed but will probably forgive you. After all, everyone does this sometimes. Just don't do this too often.
  • If there is something you need to say which is not relevant but is important, for example "Bob phoned for you today" or "there's something I'd like to talk to you about which is worrying me", it is best to find the suitable person when they're not having a conversation. Try to find the right moment, get your timing right. If you need to pass on a phone call and think that you might forget if you are kept waiting too long, just write it down and leave it by the phone.
  • If what you need to tell them is vitally important, for example "Bob has just had a nasty knock on the head and is lying unconscious", then you MUST interrupt their conversation.
  • To join in a conversation, you need to listen to it. Listening can be extremely difficult, especially if you have to keep your ears open 24 hours a day, but you can get better with practice. The most important thing to listen to is the plot of the conversation.
  • Be on the look out for eye contact from other people as it can often mean they would like to hear your point of view.
  • It is easier to listen if you don't make any assumptions or pre-conceived ideas about what someone is going to say.
  • Some topics of conversation are taboo subjects and if you are in doubt, they are sometimes better left alone.
  • When a conversation becomes emotional, people often say things like "cheer up", "it'll be all right", "oh that's wonderful!" or "well done!". When you try to say these things, they might sound rather corny and sentimental at first, but they serve the same purpose as remembering to buy someone a birthday card. They serve to open up the conversation and invite the other person to express how they feel.
  • General knowledge

    Names

    HUMOUR AND CONFLICT (back to top)

    SEXUALLY RELATED PROBLEMS AND POINTS ABOUT GOING OUT(back to top)

    Nights out

    Chat ups

    Invitation

    Personal security

    Rape crisis

    FINDING THE RIGHT FRIENDS (back to top)

    True friends

    Hoax friends

    Enemies

    Treat you the same way they treat all their friends.

    Make you feel welcome in the long term as well as the short term.

    If they give you compliments, they will be genuine and sincere.

    Will treat you as an equal.

    May help you to see the truth behind other peoples hoaxes when suitable.

     

     

    May treat you differently to how they treat others.

    Might make you feel welcome in the short term and then drop you in the dirt.

    Might give you many compliments which are NOT genuine.

    Might often make unfair requests of you.

    Might want you to make a spectacle of yourself.

    May threaten not to be your friend anymore or play on your guilt if it is to help them get their own way.

    May ignore you most of the time.

    Will make you feel unwelcome and will notice all your mistakes and may bring them to the attention of other people.

    May give you anything from sarcasm, put-downs and temper tantrums to the silent treatment.

    Will often treat you as a less important person than them.

    What to do:

    Repay them with the same attention they give you and listen to them.

    Accept any compliments they give you by saying a simple "thank you", and then you won't make them feel silly in any way for having complimented you.

    Try to show that you like them using the rules given under eye contact (see body language)

    What to do:

    Stand up to them and don't feel guilty about telling them to p*ss off if they have said something which is obviously unfair.

    They could be the kind of person who gets pleasure out of hurting people more vulnerable than themselves because they feel weak and inadequate inside.

    What to do:

    You might have done something to annoy them or they might just be jealous of certain skills or knowledge you have. If it is jealousy they will never admit to it.

    If you find them on their own at any time, they might switch to being quiet and shy towards you and you might be able to ask them awkward questions as to why they behave differently towards you than they do towards other people. Also, if they can give you a good enough reason, it might be a chance to apologise if you have annoyed them in some way and say that you will try not to annoy them as much in future.

    KEEPING A CLEAN SLATE(back to top)

    COMING CLEAN

    EDUCATION

    LIVING AWAY FROM HOME

    Using the phone

    Guests

    JOBS AND INTERVIEWS

    Suitable jobs

    Unsuitable jobs

    Graphic designer

    Computer programmer

    Computer technician or operator

    Research scientist

    Medical research scientist

    Architect

    (Which are respected professions which generally take place in environments with people who tend to be a perhaps just little bit more accepting of the needs of those who worry. Please note that I have specifically chosen to show quite difficult careers here and there are plenty of easier careers available.)

     

    Salesman

    Manager

    Solicitor or lawyer

    Police officer

    Doctor, dentist or health inspector

    Secondary school teacher

    Airline pilot

    (All of which can be highly stressful and competitive occupations which involve making difficult decisions and compromises under intense pressure from other people)

    Meek

    Assertive

    Aggressive

    Looks down.

    Keeps his fists clenched (a closed signal)

    Often speaks too quietly

    Steps backwards when spoken to.

    Has a weak hand shake.

    Has an upright but relaxed stance.

    Maintains eye contact when listening or speaking (for over two thirds of the time), looking at the face as a whole.

    Has a firm handshake but not too firm.

    Stands still with a stiff, rigid posture.

    Keeps his arms folded.

    Shouts and points finger.

    Bangs desk or table.

    May give eye contact almost the whole time he is speaking (looking straight into the eyes).

    Is better at talking than at listening.

    Is easily put down by others

    Is often angry with himself for allowing others to take advantage of him.

    Is shy and withdrawn in company.

    Cannot accept compliments.

    Says "oh dear!" and "sorry" too much.

    Is able to say "no" when needs must.

    Can express his true feelings.

    Is interested in other people's opinions as well as his own.

    Tries to treat everyone as equals.

     

    Likes telling other people what to do.

    Thinks his own opinion is always right.

    Likes to tell other people they're useless.

    Tends to make himself quite lonely because people feel they have to be careful around him.

    Adapted from Ursula Markham's book "how to deal with difficult people"

    DRIVING

    TRAVELLING ABROAD

    Bartering

    OPPORTUNITIES

    The first move in finding yourself a social life is often seeing an advert in your local paper and picking up the phone. The most difficult step can often be just picking up the phone.

    Clubs and societies can be a good way of meeting people but often require you to be good at a specific hobby or interest if you are to be valued by the group. However, there are also singles clubs and places which exist simply for the purpose of meeting people.

    Voluntary work is advertised in the papers and probably also in your local library.

    Also, it could be a very good move to enrol in an evening class. Counselling courses and psychology classes may give you a lot of extra insight into social interaction. Even if you don't actually pass the exam, you could easily find yourself drawing more benefit and reward from the course than any other student.

    A PERSONAL IN-DEPTH ANALYSIS OF THE PROBLEM

    I personally believe that the best key to overcoming autism is understanding it.

    Autism is caused by various biochemical processes which affect the way the brain develops.

    For some time I believed that the brains of autistic people were structured slightly differently so that there is a greater tendency for neuronal impulses to travel up and down (literal thinking) and a lesser tendency for them to move sideways (lateral thinking). This phenomenon would be spread throughout the whole brain rather than being local to certain regions. Experiments with neural nets on computer systems have shown that nets which emphasise up and down movement of information (like in autistic brains) give excellent storage of detail but show less ability to distinguish things.

    On the much larger and more complex scale of the brain, this means that non-autistic people are more aware of plot but autistic people are more aware of detail. Autistic people are better at logical problems but less intuitive. This doesn't necessarily mean that autistic people should have brilliant memories, on the contrary they can often be quite absent minded about certain things. The heightened sensory awareness and constant recall of extra details, many of which are unimportant, can be a never ending source of distraction to concentration and learning skills. It can be especially difficult to pick up information regarding the culture one lives in, especially in today's Western society which I feel is suffering from cultural overload (see general knowledge).

    I now feel that perhaps the root cause of autism is an increased bias towards the re-assessment of previous thoughts (hence the repetitions and rituals). Consequently the capacity for intuition and context awareness is reduced.

    To assess a social situation, one needs to pick up on as many clues as possible and swiftly piece them together. The final deduction is often greater than the sum of its parts.

    Also, a difficult thing for an autistic person is "finding a balance" and this may show its self at all levels of behaviour and reasoning. The ability to adapt to the "situation continuum" and conform to the surrounding world is, however, an extremely ancient survival strategy which is most reminiscent in the social sector of life.

    Many of the problems experienced by someone with Asperger syndrome can feel like nothing more than an unexplainable continuation of bad luck. The only way you can really make this feel any less frustrating is to see your problems as challenges instead of seeing them as obstacles.

    I certainly wouldn't want people to think that just one definition of autism or Asperger syndrome was sufficient but if I could explain it in just one sentence it would be as follows:

    Autistic people have to understand scientifically what non-autistic people already understand instinctively.

    FURTHER READING(back to top)

    Allan Pease, Body Language, (Sheldon press)

    David Cohen, Body Language in Relationships, (Sheldon press)

    Ursula Markham, How to deal with difficult people, (Thorsons)


     

    We are very grateful to Marc's parents for their help and support in getting his work the wider audience it deserves.

    Marc Segar's tragic death in 1997 at the age of twenty three filled those who knew him and his work with grief and dismay. We felt his death cheated us of the inspiration we had come to expect.

    Despite the brevity of his career Marc's thinking was already beginning to play an important part in the development of our understanding. We miss him.

    The Battles of the Autistic Thinker.


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