A survival guide for people with Asperger syndrome

by Marc Segar

April 1997 Edition

This survival guide is continued as a WikiBook, and you can read and contribute to it online here: Survival guide WikiBook

Content

1.
Preface
2.
Introduction
3.
Getting the best from this book
4.
Worrying
5.
Looking on the bright side
6.
Body language (Boundaries, Eye contact, Tone of voice, Dress sense)

7.

Distortions of the truth (Misunderstandings other people might have about you)
8.
Conversation (General knowledge, Names)
9.
Humour and conflict
10.
Sexually related problems and points about going out (Nights out, Chat ups, Invitation, Personal security, Rape crisis)
11.
Finding the right friends
12.
Keeping a clean slate
13.
Coming clean
14.
Education
15.
Living away from home (Using the phone, Guests)
16.
Jobs and interviews
17.
Driving
18.
Travelling abroad (Bartering)
19.
Opportunities
20.
A personal in depth analysis of the problem
21.
Further reading

Preface top

Strange Game sculpture
"Strange Game" sculpture by Marc Segar

To find out more about Marc Segar see The Battles of the Autistic Thinker

INTRODUCTION

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

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

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

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

Allan Pease, Body Language, (Sheldon press)

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

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

 

 

Related articles:

Another coyp of the survival guide: Coping: A survival guide for people with Asperger Syndrome

Marc Segar: The Battles of the Autistic Thinker

Dinah Murray: Normal and Otherwise

Continued survival guide WikiBook: Survival guide WikiBook

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