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
• A personal in-depth analysis of the problem
• 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
• Living away from home (using the phone, guests)
• Jobs and interviews
• Traveling abroad (bartering)
• Further reading.
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
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
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
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
This is a book designed to make you aware of the
many unwritten rules which most people instinctively know and take
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
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
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.
to proceed to the next chapter.
Click here to go to the
home page to view the full range of autism fact sheets at www.autism-help.org
This autism fact sheet is licensed under the GNU