A SURVIVAL GUIDE FOR PEOPLE
LIVING WITH ASPERGER'S SYNDROME

by Marc Segar

Marc Segar was an adult living with Asperger's syndrome but passed away in 1997 in a traffic accident. He left a wonderful legacy - this guide which contains practical tips for other people living with Aspergers syndrome. This series contains information on:

• A personal in-depth analysis of the problem
• 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)

• Humor and conflict

• Sexually related problems and points about going out (nights out, chat ups, invitation)

• Finding the right friends

• Keeping a clean slate

• Coming clean

• Education

• Living away from home (using the phone, guests)

• Jobs and interviews

• Driving

• Traveling abroad (bartering)

• Opportunities

• Further reading.

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 realizing that there were many unwritten rules about behavior 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 patronizing 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

Not everyone will understand everything in this book straight away but if something doesn't make sense at first then it might make more sense if you skip it and come back to it later.

This is a book designed to make you aware of the many unwritten rules which most people instinctively know and take for granted.

When people disobey these unwritten rules, sometimes they get away with it, but usually they who break informal rules are made to suffer informal punishments. These punishments may include being laughed at, being treated as a less important person or being isolated.

The most difficult thing about being autistic (or having Asperger syndrome) is that so many people expect you to know these rules and live by them, as they do, even though no-one has told you what these rules are. There is no doubt that this is extremely unfair, but unfortunately most people don't see it this way because they don't understand the problem.

If you, yourself, are having trouble accepting that you are autistic(or have Asperger syndrome), you could be making things even more difficult for yourself. Accepting such a thing will not only help you to get the most out of this book but may also allow you to forgive yourself for things you might be doing wrong and take away some of the pain which can only be holding you back.

Usually, there is an unwritten rule against talking about unwritten rules in public, but it is normally all right to talk about them with parents, teachers, counselors or friends when they are on their own.

With many of these rules, you are likely to want them explained to you. Unfortunately, not all of them can be explained without moving away from what is important to the aims of this book. Also, many people are able follow the rules in this book perfectly but are not even consciously aware of them.

If you are so busy questioning these rules that you cannot put them into practice, you might not be getting the best from this book. However, there is no harm in spending some of your time questioning them.

Some unwritten rules, I have been unable to include, either because they are too vague and depend too much on the situation, or because I may not yet have discovered them myself.

When you have read this book, you might think that these are the rules to a rather silly game, but the game is life and the rules cannot be changed.

The problem with the game of life is that every situation is slightly different. Some things might be suitable in some situations but not in others. This book cannot tell you how to respond in every situation but can only set you guide-lines.

Autistic people tend to remember detail, non-autistic people tend to remember plot. Plot closely accompanies the detective work which enables most people to learn the unwritten rules of society which are covered in this book.

You may know some or many of the rules shown in this book already. None the less, they must still be included for people who might not yet know them.

Sometimes, certain people might give you advice and criticisms which you find slightly patronizing, pedantic or unimportant. This might often cause you to want to rebel, but you could in fact be rebelling against the very things which are to be most helpful to you.

Remember that this book has been written partly on the basis of my own personal experience and that what is right for me doesn't always have to be what's right for someone else.

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