Experiences through autism
by Antonella Tofano
Amici della Fondazione Martin Egge Onlus
In this text I will relate my encounter with Dr. Chiara Mangiarotti, the road that began with my son Marco’s painting workshop and the positive experiences brought on by the good formative advice I have received.
My son is now twenty five years old and we received the diagnose of autism when he was only three years old. It has never been easy to educate him because he has a strong and frequently contrarian character which, added to an imposing physique (he is now 1.95 m tall and weighs around 100 kg) and a propensity to aggressive behavior, frequently led us to impede his participation in school activities or to limit school intervention for fear of physical aggressions. Despite possessing a modest cognitive level which has allowed him to learn to read and write, Marco does not verbalize -he expresses himself through word-phrases, for example- but in general he has a good level of personal autonomy. Ever since he was small, he showed an inclination towards drawing and the passing years have developed his talent and his expressive style, which we encouraged by enrolling him in an artistic secondary school.
Problems have therefore always abounded, but through the structuring of time and space, with the help of communication through pictograms and images, also used to explain and instruct rules of behavior, we made Marco into a person who could attend school and then, the Day Center.
At the end of 2015, a period of profound crisis began. Concomitant to his older brother’s departure on an Erasmus program and to my mother’s illness, which forced me to spend many hours away from home to look after her, Marco started to close himself to us progressively and to reject everything and everyone. He did not leave the house anymore, removed the calender with the organization of his days from the wall, responded to no rules, did not wash and when his anxiety surpassed a certain threshold, he would destroy the house with his fists. We thought he had fallen into some sort of depression and did not know what to do. Our habitual references could not help either, as Marcus was very definite in his rejection of them.
Nevertheless, it sometimes happens that in the midst of a life crisis, when you feel you have reached the limit of what is humanly endurable, an unexpected help arrives. And so it happened. A former drawing teacher of the artistic high school where Marco attended, knowing of his talent, contacted us to propose that he participate in a painting exhibit and we accepted. This is how I met the Martin Egge Onlus Foundation and Dr. Chiara Mangiarotti, promoters of the initiative that took place in Venice, 70 kilometers from our home. I knew the Foundation used a different approach to the one we had adopted until then, but following the motto “one cannot obtain anything new by always doing the same”, I decided to try listening to what this pleasant doctor had to tell me.
Firstly I was advised to help Marco calm himself by never asking things directly but through triangulation with another person to transmit the message; to follow his indications and preferences, taking the stance of an attentive but discreet guide, to not be impositive. I applied these indications the same night and began a dialogue with my husband to invite Marco to shower. I told my husband with certain emphasis: Diego, did you shower today? I feel a smell in this room …” His answer was: “Of course I did and I also put on some deodorant! It must be you …” We kept up this dialogue between us, making mutual observations on the existence of universal rules for everybody that included washing up. Marco, who knew very well he had not done so, after a few minutes got up to go and take a shower! We were very happy and surprised by this first result, but even more so by the fact that after months of being adamant and rejecting us, especially me, we were able to interact with him.
After this first episode there were others and this modality became habitual to us, also involving his brother and other figures of reference. Once, we were at home with our district psychologist, to whom I had offered a coffee and he began to attack me verbally in answer to the simple question: “Do you want to eat something?” She said to me: “No, in fact it would be better to calmly say “I don’t want to eat, thank you”; everybody does so, it’s a social rule”. She said so, even tough she was convinced that these subjects were outside Marco’s possibilities for comprehension, as they involved emotional and social aspects which she did not believe he could understand. Nevertheless, she later retracted and apologized to me.
Another lovely experience was the painting workshop organized by the Foundation in the study of a Venetian painter. Also through the modality of triangulation between Nicola Aloisi, the operator of the Foundation, and the artist, Marco was encouraged to make use of his talent by painting subjects different than those he usually painted. That is to say, other than the faces with intense expressions and strong colors that he usually destroyed with much violence after having created them. Beyond the artistic aspect of these oeuvres, showed at the exhibition, it was obvious that to Marco they represented something very important but conflictive as well. There was a recurrent character dressed in violet and red, with a very special, very elaborate hairdo. The variations on this character were always very intense: sometimes attractive and pleasant but frequently severe, with big, menacing eyes. At other times he would draw skulls and skeletons with stiff hair, like punks. One day he decided to tear them all apart: he took out the drawings from the folders he kept them in and threw them into the recycling bin. He also erased every digital copy and never asked to see them again.
During the workshop other themes were suggested to distract him from these perturbing images but they were to be freely chosen by him. His choice fell upon the landscape of his favorite place, a small wood that clears over a hill that dominates the underlying scenery. Marco spent (and still spends …) hours in that place, admiring the landscape and surely benefitting from all the tranquility and beauty. The daily appointment with the copse was inevitable, so much so that it hindered the assistance to the workshop, since the time for his walks and that of the appointment in Venice overlapped. So we again decided to follow his priorities and resume the laboratory in September, in the Day Center he currently attends.
Despite these achievements, the problem in communicating with him returned occasionally, with high peaks of frustration. Dr. Mangiarotti then told me about the book and movie Life, Animated, that tell the story of a father who speaks to his autistic son using the voice of cartoon characters, the same ones Marco liked. I wasn’t very convinced at first but one day, as Marco was about to launch into one of the behavioral crisis that would generally end with his punching the wall or a door, breaking them, I took two toy figures I had prepared and improvised a dialogue between them: “Hey you! Do you have to make a hole in the wall?” Answer: “No, no, not I! And if I had to make a hole, I would call a professional builder!” Marco was so surprised that he managed to overcome that moment of crisis and relax. So as to not dismiss this as a random event, I repeated this modality in various situations, always successfully. Indeed, one day he seemed to be imitating the Beast -from Walt Disney’s “Beauty and the Beast”- because he was yelling loudly and it was evident he would soon vent his rage on something or somebody. So I improvised an imitation of Bella, impotent and scared, and asked him to stop shouting and calm down. Not without an effort, Marco ceased shouting, quieted down and came to me to hug and appease me.
Having seen the effectiveness of this interactive mode, I decided to involve my husband and my son. One day when we were all sitting at the table, I began to tell them of this American boy who liked Walt Disney cartoons and of his father, who had recently started to talk to him using the characters’ voices. Marco -who at the time always watched a particular Bugs Bunny episode, produced by Warner Bros- intervened in the conversation saying: “No Walt Disney! Warner Bros Yes!”, confirming once again that speaking to him indirectly allows him to understand better and express himself with greater ease.
The Warner Bros cartoon Marco always watched was an episode called “The bullfighter”, in which Bugs Bunny astutely defeats a powerful black bull. A particular scene caught his attention: that in which the bullfighter, terrorized by the bull’s aggressiveness, abandons the cape in his hand and runs away, pursued by the bull. At a certain moment of this scene, while the bullfighter is still escaping, Bugs Bunny emerges from the ground of the arena, having made a mistake whilst digging a tunnel, erring his way. So the bull also attacks the rabbit, provoking him into reacting with ingenuity, leading to the victory of the weak over the strong. These scenes were the object of conversations between Dr. Mangiarotti and myself, to try to understand the value Marco ascribed them. It was evident that they impressed him very much, given that he felt the need to draw the bullfighter, tear the drawing apart and start over many times and in doing so, become anxious. I remember she advised me to “ground” the bullfighter who pursued the bunny by tossing Marco’s drawings into a closed box, so he would understand that the persecutor was locked away and could not hurt him. And to also praise the smart behavior of the bunny, who fared better by using his intelligence. Sometimes, although Marco had already thrown away his drawing, I tried scolding the bullfighter but Marco would get angry, he did not want me to do it. So I prepared a special box in the recycling area and as soon as I saw Marco preparing to throw the drawing into the trash, silently showed him the box. After he threw it there, I put a lid on it and pointing to the ground, said: “You stay there!” This worked so well that he spontaneously started tossing the drawings there and after some time I stopped seeing them.
To conclude, I feel that since I have adopted a less directive approach to my son -more centered on responding to his need be guided without being made to feel impotent, presenting myself as wanting- he responds better and his aggressive behavior has decreased considerably in frequency and intensity. I also feel closer to him, in a more profound way than in the past. When I speak to him I expect an answer that is sometimes forthcoming, sometimes not, but no matter, I feel he is there.
Translation: Soledad Székely Schlaepfer
