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On
the other Side of the Mirror
(1)
About Sybille -and the empathies of the Du Norm Menschen (“You-Norm
People”)
Fantasies of autistic people. 01 Jan (p.1)
My name is Sybille. and I am autistic (Aperger).
I would like to show you a part of my world.
For this, I also need someone who can help me, to mediate between the
worlds. I somehow always need something, which is between me and you.
Generally, in the everyday, I use a contact stick. In this case I also
use Mr Lorenzen. He is a psychologist in the AutismAmb (ambulant service).
I find him suitable for this.
A part of my world are fantasies. It starts most often with me just
sitting there, I move back and forth (stereotypies), and I lose myself.
And already my journey is under way. I find myself on earth, the earth
is unique in our solar system, a blue watery planet which is filled
with life – on which life is possible. I see the sun at the sky
– and in my thoughts I travel onward. From the bright light of
the day, I dive into darkness of night, and I meet the Moon.
Mark Twain (American writer) has said somewhere….
Everyone is a moon
With a dark side
Which she doesn’t show to anyone.These words come to my mind,
while I meet the Moon. But already I am moving on, further long, I am
with Mercury. Mercury is a very extreme planet, he is closest to the
Sun and yet his nights are among the coldest in our solar system. I
move on to Venus – Mars , and past Jupiter on to Saturn –
Uranus – Neptune, and then I also leave Pluto behind me, the planet
furthest away from the Sun.
Then,
suddenly, I see something – far, far beind the Milky Ways. It
looks like a plane made of glass, it is translucent, somehow. I approach
this planet, and I dive into its atmosphere. It is like magic, really
easy.
And
I am there already. I find myself on a planet which is far, far away
from Earth. I notice that I breathe, yes, that I am alive. This is a
planet on which life is possible. I look around myself. The first thing
I notice is that many buildings are made of glass. It is a somewhat
foreign, and yet so familiar architecture. Also, I don’t see so
many colors and colorful spots as on Earth. It’s all in a kind
of blue and glass combination. I look to the skies, in order to find
the sun. But there is no sun. I don't understand why how it can be so
bright on this planet, without a sun. The sky also has no disturbing,
always moving and changing clouds that could frighten me. I suddenly
begin to notice a soft sensation of coziness. What I see so far, I like
a lot. My eyes focus again on the streets.
The streets are clearly structured, and somehow appear orderly. The
street signs are kept in alphabetical order. There, now I see the first
human beings? Or human species? No, they really are humans, just like
the “You”(Norm) and “I” (autist). I automatically
walk towards these human beings. When I am only a few steps away from
the human beings, I can suddenly, yes, I know at once: these human beings
are not like “You” (norm) and “I” (autist).
These people are like “I”.
Whoops, in this moment, when I become aware of this, I feel the arrogance
in myself, to judge, and to be happy, that “You” are so
different, and not “I” (autist).
It is strange, how quickly one finds oneself standing on the other side
of the mirror. For a moment I enjoy the feeling, however. Then suddenly,
there is a different feeling in me, somehow sad - empty, yes, almost
shameful. I begin to think, ask myself whether on this planet there
are also “You” people.
If yes, how would they live in the world in which autistic people are
the norm?
……. Ring , ring ….. . My ears! Something is wrong
with my ears. A loud, shrill sound.
- then comes the emptiness. - an amost infinite emptiness
later.
I am back on earth
(2)
Wetterwechsel/Changes in Nature p. 4-5
Changes in nature, the different seasons, also cause me problems. For
example, it is summer. I have just gotten used to the color-light intensity
in my environment. Trees, meadows, everything, yes, even the houses,
streets, the people appear differently, as if I were in a foreign city.
I have just gotten used to it, so that I can orient myself more or less.
Then begins the change to autumn. The colors seem to almost change over
night. The same city – street, the same place, it now effects
me differently. The clouds in the sky, they disturb me the most, and
make me insecure.
They appear to me like constantly changing shapes, in color and form,
and also in their proximity to the earth. Sometimes it appears to me,
therefore, as if they were really close, very large, heavy, dark, and
with a peculiar, light corona of light behind them. (e.g. look at clouds
in paintings, for example in Nolde; this is a good perception).
I have the feeling that they could fall to earth at any second, and
could cause a lot of chaos. Then, when there are strong winds in the
fall, and hundreds of leaves are blown around in the air, then my feeling
of chaos is complete. Sometimes the leaves touch me, and even thogh
there are clothes between my skin and the leaves, I feel something that
is like the burning of a cigarette tip touching my skin.
Then it can happen that I react a little hysterically. Seemingly without
cause I react with silent screaming (as a child I used to scream very
loudly), with vigorous arm movements, with restless walking back and
forth, and with auto agression.
Today, as an adult, I don’t react quite so strongly any more.
Perhaps this is due to the fact that I have experienced the changing
of the seasons for so many years, that I have learnt to cope with it
better. But it is disquieting, nevertheless, for me. This changing game
of nature.
Earlier, when I was a child, my reactions were much more uncontrolled
and strong; in such situations, I would knock my head against the wall,
for example, so hard that it could happen that I gave myself a concussion
without noticing it.
The change to the winter I don’t experience quite as bad. During
the winter, I have difficulties recognizing the times of the day. For
example, when is morning, afternoon, or evening. An even greater problem
for me in the winter is to recognize, understand the temperature. My
inner thermostat somehow registers things too late. That is why I am
sick a lot in the winter time. I really only notice that I am cold when
my skin is blue, and when I tremble with my whole body. When that happens
I cannot hold my contact stick properly. It falls down often. I just
can't feel it in my hands anymore.
Since I have a few problems with my body perceptions anyway, I don’t
quite feel the cold in this state of coldness. It can happen, for example,
that I get a feeling of being hot, and I take my coat off inspite of
the cold. Often I also have difficulties breathing in those situations
(asthma attacks), so that I have real problems, until I am back home
again. Then I also often get a fever, and sometimes the ashtma attacks
won't stop, so that Patricia sends me to the hospital. Then Patricia
dresses me, and I walk to the hospital nearby, which is only three or
five minutes away. It is almost across from my apartment. The doctors
there already know me, since that happens quite often. I am then given
infusions, - oxygen, penicilin, or antibiotica. If I am lucky, th4en
it isn’t pneumonia, and I am healthy again quickly. After 2 weeks
in the hospital, they let me go home again. I think that the perceptual
disorder causes the autism.
I also think that the perceptual disorder is not the same with each
autistic person. There probably are autitsic persons, who notice their
particulat perceptual disorders in other areas, and who experience them
in different intensities. It would be good if also other persons who
are affected by autism were to write of their feelings and experiences
of their perceptual disorders, or express themselves in some form. Some
of them of course, they have lost speech, and if in addition they cannot
not write, then I would perhaps encourage them to draw their perceptions.
These would surely be very interesting drawings. I don't see the autistic
person as crazy, or debilitated or handicapped. I see the autistic person
as a crystal. At first sight, the person looks like glass - empty –
cold - hard – closed off (deficient, without phantasy and emotion).
But when I hold the crystal in the direction of the sun (i.e. if I hold
it in the right direction), then it happens that this person lights
up in the most beautiful rainbow colors. Only then do you recognize
the fullness and the beauty of the crystal.
It is like this with some artists. For example, I believe that many
artists also have perceptual disorders, and because of this percpetual
disorder they paint really astonishing paintings, and they show the
people, and often especially the “You”- Norm-People, a special
world, for which the latter pay a lot of money, so that they can hang
that world on their walls. A world, which they like, and which they
themslves cannot see. And suddenly, now it is no longer called crazy,
of debilitated or handicapped or grotesque. Suddenly it is called “art.”
(3)
Inside the Picture p. 5
Sometimes,
when I see a beautiful picture, then fantasy enters my mind. I walk
into the picture, so that I become part of the picture. For example,
a picture on which a large meadow is painted, behind the meadow you
see a small brick house, nothing else is visible in the picture. I walk
barefoot across the grass, and suddenly I begin to feel the blades of
grass under my feet. A soft wind arises, just a tiny breath of wind,
the blades gently sway back and forth. In this moment I notice the smell
of fresh grass and a feeling of happiness inside me. Then I have the
need to just lie down on the grass, and to enjoy this moment.
Yet then I see a few daisies. I am afraid that I might harm them or
somehow destroy them if I now lie down on the grass.
Therefore I walk on, very softly and carefully, and I watch out that
I don’t step on anything that I could hurt. It feels as if the
grass and the daisies notice this, as they tickle me under my soles,
and it seems as if they giggle, in a soft and friendly manner. Then
I suddenly notice that I also begin to giggle. It is funny, somehow.
Then I see the small house in front of me. I wonder whether someone
lives inside it. I turn around, and look at the meadows with the daisies.
And suddenly I am no longer interested in the little house. I prefer
to go back to the meadow, where everythink appears to be so simple and
peaceful. On the meadow I hear again the giggling of the grass and of
the daisies. I return as carefully as I walked earlier, and we giggle
together, the meadow, the daisies, and I. I find myself standing in
front of the painting and giggling. I look around, with an uncertain
feeling, everything appears so chaotic to me in this world. I hear how
someone says” “look at that woman, she doesn’t have
it together, stands there giggling in front of the painting.”
“Yes, a crazy person, let us move on.” Such situations happen
often to me.
Then I am confused and nervous.
Often I don't remember anymore, in such situations, why I am in this
place or in a shop. I think to myself, what are you doing here? Go on,
go on, quickly move away! It is possible that I appear to be confused
or crazy, to others in such situations. But that only is the case because
they cannot see what I see. It is quite obvious to me, that what I see
is not real. That is my fantasy.
(4) Movements pp. 12-16
What
are stereotypies?
Stereotypies are motions of individual body parts that reapeat themselves
continuously. Many people, even doctors, believe these are senseless
motions.
These motions happen with me, for example, in the back and forth swaying
of my upper body. I think I do this almost constantly.
Another stereotypy is, for example, the playing with hands and fingers
in front of the eyes, turning my fingers in front of the eyes. Or to
knock on glass marbles. This kind of knocking I do with a lot objects.
I could now mention many other stereotypies which mght occur with autistic
persons, for example, smacking one’s lips (I don't do that myself)
or fiddling, piddling. Frederic always used to piddle around as a child.
He prefered to do this on the sofa, with his clothes, or the wallpaper,
so that there were holes in them sometomes. I believe there are various
behaviors of this kind. Not all autistic persons have the same stereotypies.How
do physicians or external observers see stereotypies?
In my experience, opinions and peceptions about stereotypies differ.
Physicians often sdee them as senseless behaviors, which perhaps can
be gotten rid of through medication. One doctor thought that in my case,
the swaying back and forth looked grotesque, and that was the reason
why I would not get a job with the You-Norm-People”. If I’d
get a job at all, it would have to be work where there is no interaction
with the public.
I didn’t exactly understand what he actually meant by that. He
then gave me some medication, it was some kind of medication against
Parkinson Disease. That was supposed to get rid of my stereotypy. Well,
I then took the medication (pills) a few days. But the back and forth
swaying did not go away, I just fell down and fainted a few times. Julia,
a friend of kine, then suggested that I should not take these pills
anymore. She also explained to me what the doctor meant by “grotesque”
and “work without interaction with the public.”
Julia said,” You know that story of Quasimodo, the bell ringer
of Notre Dame. He was also a handicapped person whom they had to hide
in the bell tower, so that the “You-Norm-People” did not
have to look at him. Because he appeared so “grotesque.”
Oh - oh, I get it. I understand what Julia told me. But I didn'’t
like it. My problem was that I don’t see myself or perceive myself
in this way. That I somehow appear to be different, or look different
– yes, I knew that, but I had no idea that I have such an effect
on the “You-Norm-People.” From that time on, I did not go
back to that doctor.
How does the person concerned (i.e. how do I perceive stereotypies for
myself?) perceive the back and forth swaying of the body? I know that
I have several stereotypies. But in everyday life, during my normal
days, I am not really aware of them. It just happens. But when I talk
about it with Mr Lorenzen, for example, then I become aware of the stereotypy,
I become conscious of it….. The meaning of sterreotypies
I think I make these motions almost all the time. For external observers
it must appear as if I am nervous, or they might think that I have music
in my head.
But this is not the case. I don't have music in my head, and I am not
necessarily nervous. It, it just happens that my body sways back and
forth. I cannot influence it.
If I didn't do it, then I become nervous, or even aggressive. The movements
do not come from my being nervous. They are simply a part of me. But
they can change in intensity.
(5)
p. 46 Eating and Clothes
For 40 years I have had problems with it (eating with cutlery); and
especially when I was a child it often led to hysterical attacks, and
screaming. There was a lot of stress and frustration connected to it,
for me, and also for my environment. Hmm, it just takes someone who
is intelligent, and not judgemental. Simply someone who ponders why
this is so. Hmm, I believe that one cannot get rid of autism, but with
the right kind of support (e.g. therapist) it is possible to reduce
the autistic person’s small daily problems, which can weigh heavily
on the person concerned or on their family, to make them easier.
There are many of these small problems, which often cause misunderstandings
with the “You-Norm-People,” and lead to rejection. For example,
also regarding clothes. Dr Kronenberger once gave some of her clothes
as a gift, so that I could wear them. Those were really nice clothes,
and expensive too. But I could not wear these clothes.
I don't really know why this is so. But some materials I simply cannot
wear. I would constantly pull on the clothes or scratch myself. I also
like clothes only in very particular colors – beige – light
blue – pastel colors. The clothes that Dr Kronenberger gave me
were always brown, dark red, black. I also don't like right and rigid
clothes. I prefer soft – large materials.
Those are just so much more enjoyable, the way they feel on my skin.
This is again a problem which I remember from my childhood, which often
caused restlessness, nervousness and hysterical attacks, right through
to auto aggression
.(6)
Ligthting out into the world . pp; 32-33
I simply don't feel comfortable in the world of the “You-Norm-People.”
My world is simpler, clearer, and more beautiful. Hmm, I am thinking,
I wonder if I would want to be a “You-Norm-Person” if I
could? No, I don't want to be a “You-Norm-Person.” I also
(ha, as Mr Lorenzen once said to me) don't want to “go out into
the world.”
Since there in that world, there are the “You-Norm-People”.
It is not that I don't like them. Rather, I simply don’t understand
them. They are so exhausting. I prefer to be alone. In my small, autistic
world.
(7) Talking Playing Cards pp. 7-8
It is easier to have a conversation with just one person. If the person
is familiar, then it works quite well. It is important that either the
person or the environment is well known to me. During the conversation
I don't like to have direct eye contact with the person. I don't like
to look at the person directly, since eye to eye contact causes somehow
that I cannot talk. If it happens occasionally, that I look directly
into someone’s eyes, and if that person also looks at me directly,
then it feels as I could look right into the bottom of that person’s
soul. It is somehow as if I would look right through a door which is
actually closed.
I think there are doors that should simply remain closed.
It is simply to close to me. I don't like it.
When there are cards between the person and myself (Tarot cards, or
normal card game), then I hardly notice my handicap. Then I can talk
quite easily also with people I don't know. This kind of conversation
is called playing cards. I sometimes look at the person (rather, look
through them) when playing cards, and I continue to talk as if in a
trance. Next, I look down on the cards, and I answer the question that
this person might have. The people like that, they think that I can
tell the future, and divine their fortune. And it is often true what
I tell the people as my answer. Often things happen in the future, as
I had told the clients they would happen. Why this is true quite often,
I really don’t know. But the clients believe it. Of course I am
not a fortune teller, and I am not a witch, as some people have said.
It is simply a capability which I discovered for myself as a child,
that I can speak through playing cards.
Something
needs to be between and the other person.
_____
Was
ist Interaktions-Kunst? Ein Manifest.
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