President of the families association La Main à l’Oreille
Vice-president of the RAAPH (Meeting in order to Approach the Humanist and Pluralist Autism)
In La main à l’oreille, we welcome all those, autistic, parents, and friends, who consider that a place to be autistic should be made in the City, without referring to a social or behavioral norm. We want to promote an approach that takes into account their subjectivity and embrace their inventions. What do we have in common? Having found autism, being it, or living with it, having it or saying with it, or being told with…
In La main à l’oreile, we are committed to invention. The invention cannot be decreed. It is not programmed. It arrives unexpectedly; it only asks that we recognize it, to welcome it. We do not wait until tomorrow. We live today. Our blog testifies, it is built, day by day, from those little things, nuggets that constitute life, but also of questions, of challenges and enigmas to which we confronts our encounter with Autism.
Our methods, if we had to describe them-are disconcertingly banal ; made up of pieces of string, pebbles of the road, of those nursery rhymes that seem so puerile to adults, and which are the most beautiful treasure offered to parents to hoist to the height of their children, and learn to know how to do with it.
In the game “Rock-Scissors-Ribbon”, the rock beats the scissors (blunting them), the scissors beat the ribbon (by cutting it), and the ribbon beats the rock (surrounding it). There is a variant with a well, at the bottom of which fall the scissors and the rock, but which is found surrounded, wrapped by the ribbon. This child’s play will serve me today to try to situate how a parent receives indications from his children, and how together we invent, how we realize our own weaving. It is a form of treatment of what happened to us in the first months of Louis’s life.
When Louis had to be rushed to the E.R for a colic, he was found to have discolored stools, which was a sign of severe hepatic dysfunction. At the first ultrasounds, it was so tiny that it looked like a shrimp on the huge examination tray. He began to scream and struggle frantically in a terrible state of terror, making the examination almost impossible, to the point that it had to be restarted.
For the x-ray, they tied him up, tied by large strips of cloth on a board, which was then turned like a brooch. His screams seemed to be able to blow up the bulbs in the ceiling.
Then one day, in the midst of an examination, he stopped suddenly, net, and expressed nothing more, as if he were no longer there. From that moment, the examinations were easier. For the colonoscopy, performed without anesthesia, they refused me to enter with him. When they brought him back, he was absolutely calm and serene. He had discovered no doubt about it, a way to disconnect.
The mystery of the installation of autism is thick. Donna Williams testifies about this. While for her entourage, the cause is undoubtedly the mistreatment of her mother, Donna searches for an origin. She finds this origin in the jouissance: I remember my first dream, at least the first one my memory has recorded. I was moving in the white, to the center of an empty space. Only white, with at least flakes of luminous colors that surrounded me everywhere. I was passing through them, they were crossing me. They were the style of things that made me laugh. This dream comes before all the others. Before the dreams of excrement, the dreams of people or monsters, and certainly before I could have remarked the difference between the three. I must have been less than three years old. However, that dream testifies to the nature of my universe at that time. The same dream remained unperturbed since I was awake. I stared at the light that came from the window in my bed, and rubbed my eyes frantically. They are here! They arrive, those feathers of vivid colors that cross the white space. 
So described, the autism would be the invention – in the sense of find – of a cut establishing a veil, triggering the possibility of activating a jouissance that would not be alienated.
After leaving the hospital, I was persuaded to have saved Louis through music; so much, he seemed to have appreciated the nursery rhymes and songs that I played repeatedly. Rapidly gaining weight, he became as handsome as his twin brother. He was happy as a lark. All this would soon be forgotten.
What a distress a few months later, when he did not react when he was called by his name. His intense jubilation at the touch of the smallest cloth remained the only manifestation of the world of jouissance in which he was sunk.
At 20 months, he suddenly gave his first vocal concert in the middle of a waiting room, revealing an impressive repertoire. The spectacle was surprising: he sang without words, with aplomb, fairness and rhythm, a hand pressed to his ear like the muezzin, to the point that the ambient murmur seemed to fade. An intense poetry release from this scene. That day, I felt proud and revitalized. He was a musician! What more could I ask for?
I wondered extensively about the paradox of Louis’s immediate adherence to music, preferably complex and erudite like baroque music, while the word seemed to him to be an invincible or at least threatening wall.
It was by representing visually the musical line in space that I could began to find an answer. The pentagram that holds the notes is the literal transcription. When we open a Bach score, we can draw a continuous line for each of the interlacing voices.
If Louis lived in the musical film “Smoking / no Smoking”, no doubt he could naturally join the conversation. When I sing my words, he is much more receptive, and even retakes with pleasure the melodic line. In the morning, he sometimes humming the “do-do-sol-mi-do” I used to announce that “The-ba-by’s-bottleishere”.
When Louis leaves the car, he looks carefully around him, takes visual references, and evaluates distances. He would not need to plant pebbles, because he wove invisible threads that connect him to those references, so that he could find his way back to the car.
This is how I discovered that Louis’s writing is inscribed in space, which he go over happily running in all directions, describing different paths: slightly curved transverse lines, closed or light curves around a point, broken lines and sudden changes under the Influence of a new inspiration, raised arms, hands extended towards the sky, touching an imaginary tambourine. Detail song. Litturaterre. True proto-writing, which some describe as hyperactivity. The mixed of delicacy and awkwardness that emanates from his person makes him deeply endearing.
One day, watching him distractedly turn in this way, I saw superimposed the trajectories by the effect of a retinal permanence. Then, it was possible to read what he wrote.
For the Dogon, the thread is a word and weaving a sacred activity that builds the word. Sometimes in my dreams I have heard Louis speak. I turned my head, and out of his mouth came threads.
It is with emotion that I received the following text by Aurore, Eliott’s mother, for the blog of La main à l’oreille. It is entitled “The Invention of a Father”.
“Eliott has a very particular stereotypy; he spins his right arm from his back like a big mill, his rigid and straight arm like an” i “. And he turns and turns until the member is unhooked. He did it mechanically, without expression on his face. Except for a frozen grin, his teeth clenched.
His dad had a brilliant idea; he ordered a GRS cane, those gymnastic sticks with a long multicolored ribbon.
Eliott immediately invested it, made us circles, spirals, and long multicolored trails behind him in the sky. The difference is that his face lit up with pleasure, in a big smile enhanced by his sparkling eyes. Every time he needed it, he took his ribbon.
Then the game evolved, he solicited us to take the other end of the ribbon.
He led the dance, he had the cane and we had to hold the end of the ribbon. He took us to the end of the garden, running, and took pleasure in turning to see if we were still “hooked” to him. He laughed, leaving behind his beautiful rainbow twirling. His stereotypy has disappeared, although this was not the goal. He now prefers to prolong the bond with us by running with his ribbon and with us holding the end.
This is the ribbon, from which we hold the end, we run with our children and prolong the bond, and we weave the invention.
 Donna Williams – If you touch me, I no longer exist
Translated by Lorena Hojman Davis