support document

In the last decade many persons with Autism or Asperger Syndrome have written about their lives or about their feelings or personal experiences. Their books and other documents gave an important contribution to the knowledge of these disabilities. They highlighted the way persons with Autism progress in learning and their difficulties in coping with everyday problems.
We selected some of these documents hoping they will contribute to understand Autism and persons with Autism.

Donna Williams is a high functioning person with Asperger Syndrome, born in 1960, author of Nobody Nowhere, Somebody Somewhere and Like Colour to the Blind.  His major concern is to make people understand children and adolescents with autism.

“I am diagnosed as having Autism. If you asked me what that word means, I would tell you that, for me, it is about having trouble with connections. I would tell you that having trouble with CONNECTIONS also causes me to have trouble with TOLERANCE and trouble with CONTROL. The word “autism” doesn’t tell anyone this, any more so than the labels of some of its “cousins”.
People with difficulties like mine are not meant to be capable of being so intentionally self-expressive, so insightful, so aware and certainly throughout large chunks of my life, I too appeared to be none of this things. This is because my writing, unlike speaking, is (both fortunately and unfortunately) a largely automatic skill so I don’t have to be aware of what I am unknowingly aware of. If it is in there, it just comes out. The same thing happens for me with music and art and it has been through these things that I have discovered who I am inside and all the knowing and awareness I didn’t know I had. Some people call these automatic, almost unconscious, skills “savant skills. I call them useful.”

Temple Grandin is a high functioning person with Autism. She has a PhD in the field of veterinary medicine, professor in the Colorado University. She is always eager to fight for the rights of people with autism. In her article “Sound and Visual Sensitivity” (Link nº35) she describes her sensitivity to certain sounds:

“My hearing is like having a sound amplifier set on maximum loudness. My ears are like a microphone that picks up and amplifies sound. I have two choices: 1) turn my ears on and get deluged with sound or 2) shut my ears off. Mother told me that sometimes I acted like I was deaf. Hearing tests indicated that my hearing was normal. I can’t modulate incoming auditory stimulation. I discovered that I could shut out painful sounds by engaging in rhythmic stereotypical autistic behaviour. Sometimes “I tune out”. For example, I will be listening to a favourite song on the car radio and then later realize that I tuned out and missed half of the song. In college, I had to constantly take notes to prevent tuning out.
I am unable to talk on the telephone in a noisy office or in the airport. Other people can use the telephones in a noisy airport, but I cannot. If I try to screen out the background noise, I also screen out the voice on the telephone. Autistic people with more severe auditory processing problems are unable to hear a conversation in a relatively quiet hotel lobby.”

Gilles Trehin is a French young man with Asperger syndrome. He draws skilfully and invented a city named Urville. Urville is an imaginary town with squares, all kind of streets, churches and everything that exists in a city. He writes (Autism-Europe Congress Lisboa 2003):

“To see in images, having the need of concrete. We have a way of understanding and analysing, in an explicit and concrete way, better then through a conceptual and implicit theory. This allows us to be innovative in the scientific and artistic field.
In which concerns myself, History fascinates me and I’ve been using geographic maps and pictures to try to understand events or social-economics organizations linked to the periods in study. This often permits me to make links with contemporary facts. It is more difficult to me to interpret a text even if I fall in love with it.
On the other hand, my capacity to see in the space made me represent, since I was a lithe child, New York skyscrapers and later to build Urville, my imaginary town.”

Marc Segar was a person with Asperger Syndrome. He was born at 1974 and died at 1997. He devoted his life to help persons with Autism. From his book “The Battles of the Autistic Thinker”(1997):

“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.”
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“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.”

Gunilla Garland is a very competent young woman with Asperger Syndrome. She took a course on psychology. Some excerpts from her article “Now is the time! Autism and Psychoanalysis” in Guide of Good Practice (Autism-Europe, 1998):
“As society has come better at recognizing and diagnosing autism and Asperger’s syndrome more and more young people and adults have providing autobiographical accounts of their disability. Books and articles have been printed and lectures have been given. We have described what is like to be misunderstood, what is like to live with a nervous system that does not function normally. What it is like to be different.
To all of us it is clear thjat the causes of autism are biological. However like the rest of the population, people with autism come from different families. Some of us have had good parents and a good social environment; others have not been so fortunate. This may have affected our personalities in different ways, but it has nothing to do with our disability.
A person with autism, like a person with, for example, Down’s syndrome, can be born in any family. Consequently, it is both pointless and offensive to treat the symptoms associated with this disability with therapies that involve looking at the family situation, or to interpret the symptoms as anything other than an indication of a disorder of the nervous system/brain which is genetic or acquired early in life. Many of us who are high functioning have been analysed under the psychodinamic/psychoanalytical model – often by very well meaning therapists – but most of us have not been helped at all, many have felt degraded, and some have been harmed.”