Understanding Autism: "It’s Caesar ... It’s All Good!" - A mutual aid report - (Interview)

Understanding Autism: "It’s Caesar ... It’s All Good!"

- A mutual aid report -

Maria Teresa De Donato

Doctor in Holistic Health, Naturopath, Life Strategist, Author

Interviews

Giovanni Tommasini

Author, Writer, Social-Educational Animator

AUTISM: a word that on the one hand alarms, it is scary, arouses strong concerns especially to those who have to deal with and care for a family member who is affected by it and, on the other hand, that creates discomfort, a great discomfort in an already deeply sick society.  The level of alienation and dehumanization that our modern society has achieved is characterized by an immersion of the individual in an increasingly virtual reality, based on the ephemeral, on the evanescent and which seems to leave neither space nor ability, or – sad to be said and too often - the desire to relate to issues, problems and individuals that might represent the 'diversity' and that can, therefore, not only be difficult to understand and manage, but that they might also risk affecting emotionally and psychologically at a such deep level as to bring out not only our strengths, but above all our weaknesses.  Avoiding confrontation with one's own fears and uncertainties, with one's own feelings, with one's ability to love, to show empathy and human solidarity seems to have become 'trendy', a fashion.

It is, therefore, with great pleasure and honor that today I host on this blog my friend and colleague Giovanni Tommasini, Author, Writer and Social-Educational Animator. His profound humanity, his great ability to love in a broader sense and to feel empathy not only allowed him to overcome any fears, but also gave him the courage to approach and embrace a reality greater than himself, rather complex and also difficult to understand.  His life underwent a decisive turning point when, about 30 years ago, he met Caesar, a child from Genoa suffering from a severe form of autism, whose situation seemed particularly difficult or even "impossible" to manage.

But let’s Giovanni explain to us in his own words his extraordinary experience, this relationship – as he himself called it – "of mutual help" that has profoundly changed not only Caesar's life, but even more his own.

MTDD: Hi, Giovanni, and thank you for participating in this interview on my blog.

GT: Thanks to you, dearest Maria Teresa, with great pleasure I will answer your questions about the most important experience of my life ...

MTDD: Giovanni, given the variety of themes we can tackle together, I doubt that this will be our first and last interview.  Today, however, we want to focus on the experience you and Caesar have lived together.

Let's start from the beginning: It's 1990 ... Giovanni, a young student enrolled in the Faculty of Political Science at the University of Genoa and looking for ‘a little job', ends up in a family counselling room ...

What happens and how do you get yourself ready for the difficult task that awaits you?

GT: The "mission" presentation interview was a fundamental imprint for me.  They asked me to accept the impossibility of a task which no one had ever managed to make sense of.  Being able to enter an unknown and inaccessible world.  The autistic dimension in which Caesar, a beautiful 10-year-old child, was a prisoner.  The educator, while talking to me about Caesar, was holding a broken doll that she lovingly sewed, trying to repair a tear that had divided it into two parts.

That image ran through me every moment I spent with Caesar.  All that I was going to do with Caesar was represented there.  The real essence of building a helping relationship.  The two parts separated by the tear were nothing but the two of us.  The distance that initially would have separated us, made clear the path to take towards each other, to meet, the void to be filled with new meanings, emotions, words.  The needle and thread magically evoked what I should have created, reducing my presence to such extent as to create the most precious prerogatives of a needle.  Being able to enter the meshes of the fabric, in the plot, without causing damage, pain, but rather with a repairing intent.  The eye of the needle represented that crack, that door ajar from which both would pass to create a path to walk together, the relationship represented by the thread that went from his world, from his look on life, to mine, to my eyes, to create a new vision, ours, of reality.  A more livable mix than our plots.

MTDD: Can you tell us about your first meeting with Caesar?

GT: I found myself sitting at the foot of his bed, in front of me his shoulders, in one hand the conductor's wand, the other pointing to the members of his imaginary orchestra to instruct them how to follow his direction, the silence broken by the fillets that Caesar with strength and intensity, pure passion, sent to the white wall in front of him, as if he wanted to draw the musicality of silence.

MTDD: How did the situation start to evolve at some point?  What were the first signs you received from Caesar through which you understood that he had put you "among the good objects" – to use your own language, or better yet, that of the psychiatrist who followed the case.

GT: There have been many moments, at times minimal, almost imperceptible, that have created the premises for which Caesar began to "trust" me/
to “surrender” to me.  It was a move dictated by the indications received from the first meeting in the family counselling center that followed me in the first years of home care.  "Stay with Caesar, remain in his room with him for as long as you can sustain his way of being in reality, when you can't do it anymore, leave the room and surrender.  Accept and go back inside again when you feel you are ready to start over."  Two distinct moments that allowed me to live the experience fully with Caesar and reflect on the experience.

The moment of "feeling" and that of "understanding".  Let yourself be invaded by the experience and out of it (from Caesar's bedroom) find the words to express the images – full of every emotional, symbolic, relational, emotional, sentimental aspect – which are left in Us.

To do this there are three perspectives, activities, to put into play:

- an important path of personal introspection. Psychotherapy.

- a work of reporting of the meetings with Caesar in supervision first with family counselors and mental health center educator and psychiatrist (in this case Dr. Roberto Soriani who wrote me the beautiful "letter of preface);

- continuous training, with updated courses, seminars, workshops, on topics addressed during the construction of the aid relationship. Acculturation, "university" approach, as I like to call it.

MTDD: I was very impressed by the reasoning that you said you made at that time, when you received the assignment to assist Caesar.  Before immersing yourself in this experience, you claim to have meditated on the fact that "every intervention [of yours] would have ruined the wealth, humanity and human importance of this story".

Would you, please, explain how you came to that conclusion?

GT: When I was asked to write and return my story with Caesar, for the first time in my life, I had to design the work of writing the text to make a publication.  The stories that formed the first book were written without the thought of making a book or kindle, but then, during the presentations, all those who knew me and knew about my work as an educator asked me to write about Caesar.

I noticed that there was a point in common with this new "writer" adventure and the then new "mission" proposed.  The impossible task proposed.  They told me "No one, until now, has ever managed to get in touch, to connect with Caesar.  It is important that you are willing to accept the probable failure of what we ask you to do.  Building a relationship with Caesar, being with him in reality.  Help him live it better.  For the moment, and for the first three months, just observe what happens when you are in the room with him, sharing his space and time.  Stay still, do nothing, it is not necessary, at the beginning, to do any intervention, only to experience.  Your every initiative could only ruin possible moments of openness on his part.  You must learn to pause, that is "know how to be", forget about yourself during those three hours with him."  This initial situation was the same as the one I was facing in the new "mission " as a writer.  I thought that any "intervention" on the text that was already in me would ruin the possibility of restoring the depth, uniqueness and richness of the experience lived for 15 years with Cesare.

I chose two ways to follow and try to be able to respond to this "impossible mission".

To call to mind all those authors, literary, cinematographic, singer-songwriters, my real "elective friendships", who had managed to find the right tone to tell life stories without becoming protagonists, leaving the represented history as the only reference.

John Fante, Pier Paolo Pasolini, Charles Bukowski, Italo Calvino, films such as Wenders' Paris Texas, Gianni Amelio's House Keys, The Sea inside Amenabar, The 400 shots of François Trouffaut, The search for happiness by Muccino, songwriters such as Piero Ciampi, Paolo Conte, Claudio Lolli, poets, Sandro Penna, Camillo Sbarbaro, Kenzaburo Oe.

On the other hand, to find the "words to say", to follow what I put in place to build the relationship with Caesar, also for the construction of the text to represent it.

So my writing was a long work of introspection, research, with the moment of the actual writing, being only the penultimate step of a long journey.

The last step is represented by the "rewriting" of the text, a work of subtraction of all my "narcissistic" presence from the text, to leave the reader free to write, reading also his text that he himself must find .

A relational vision of the writer-reader relationship, highlighting all that is not to be done in the helping relationship, even in writing.

All that can allow the other to be removed from a state of subjection.

Do not interpret.

Do not judge.

Don't give explanations.

Do not console.

Not advise.

In other words, the protagonist is the other, not the author.

MTDD: How has the relationship between Caesar and you developed over the years?  Can you give us some examples?

GT: I give you two fragments from the text that tells about the construction of the relationship of mutual help.

One afternoon he suddenly withdrew.  He went to the bathroom and stayed there.

I actually implemented a different strategy: I ordered him to leave.  I was in front of him.

Sitting on the toilet, he flung himself at me, pulled my sweater, tried to bite me, scratched my face several times.  He started screaming furiously.

The adult voice.  I thought, "It's him."

He is the real Caesar, who came out for a while, but I had the chance to hear him.

I left the bathroom, went to his room to catch my breath.

I went back to him, took cotton and hydrogen peroxide: "Now you are going to take care of me, and to disinfect me".

He cried and touched my wound with great care. Cotton and tears.

It was not a real help report.

Much more.

A mental struggle: he and I looking for ways to stay in the world without fear.

We tried to get out of ourselves.

It was a game of chance.

Looking at reality with our eyes, I with his, he with mine, in the spasmodic attempt to perceive it more and more reassuring.

A continuous striving towards something else.

.............

"Take it," he said to me one day.

I found myself holding the wand.  In front of me the white wall.

I looked at him.  I gave him back my wand: "I could never do it, Caesar, never like you do.  Only you know so well who needs your encouragement, who has to be scolded, you are the director here."

I hugged him.

I perceived his fragility: the skin, a fragile boundary, that did not defend him, did not limit him, did not define him precisely.

I was alone in the embrace.

Distant, immobile, very tense.  But he was there with me.  His hands closed, he squeezed me hard, as hard as possible, then he suddenly let me go.

I'll never forget it.  He made me feel like he was in the world: all or nothing.

He entered me to never leave me again.

He arranged himself together with my parts, the most fragile and precious ones.

MTDD: "It’s Caesar ... It’s All Good!"  It moved me deeply.  It is the metaphor, the synthesis of an entire life, of a way of communicating, of opening up to the world ... perhaps for the first time: a true miracle.

Tell us about that experience: What did it represent for Caesar and for you ...?

GT: Caesar was for me the encounter with the unknown world of introspection.  The possibility of coming in touch with oneself, trying to build a relationship with him, I began, inevitably, to enter into a dialogue with my innermost parts, within myself.  Caesar was a beautiful child who expressed all his human emotions in a kaleidoscopic mosaic that led to a terrain of disorientation.

My commitment, the work done together with the supervisor, my psychotherapist, to put in order and in dialogue the various parts of the inner world of Caesar, has produced in me a human growth otherwise impossible.

MTDD: How did you experience the paradox between the efforts you made to help Caesar open up to the world ... and the world that, on the contrary, has been turning in on itself and hiding in a virtual dimension that nothing or almost nothing has to do with reality and in which the profound isolation of the individual seems to reign supreme?

GT: In the years when Cesare and I were able to walk the corridor that led to the door of his house, to go out into the street and turn our gaze towards reality, we didn't realize that our effort was against the current.  Surely, we have not met many people willing to accept our invitation to live in the "triple AAA relationship" as I call it. (ITALIAN: Accoglienza, Attenzione, Ascolto) Reception, Attention and Listening. Emotions scare and Caesar, like all the intellectually and relationally disabled people I have been following for 30 years, expresses only his emotional side that connects with those who get in touch with him.

Culturally, and also commercially, the message is to turn off the emotions.  While they are the only entrance to the true and honest knowledge of ourselves. So, the difficulties were many socially, there were two autisms to relate, that of Caesar and that of the world around us.  I was in the middle trying to act as a bridge.

Thinking back now to that experience and to the digital drift of our days, all the meaning of the story told in It’s Caesar ... It’s All Good! Ends up taking on a profoundly different meaning.  It would be necessary, given the perennial connection that is eliminating the Other from every "human" relationship, to teach, make known the path that allowed me to get in touch with myself and with Caesar, to return to a life in which the only social platform is the one in which those of us who we were born in the second part of the 900 grew up and lived: that is, reality.

MTDD: Which are, according to your personal experience, some "cultural" aspects that we, as a society, must overcome when we encounter a big and equally complicated problem like Autism? Can you give us some examples?

GT: The real problem with the difficulty of understanding autism is completely cultural.  If we start from the statement that "people do not listen, but they just wait for their turn to talk" we can easily understand what the fundamental error is.  There is no possibility of understanding who we are dealing with (and therefore ourselves) if we always start from our navel and do not look up at the Other, if we fail to understand that our equality lies in mutual diversity, the only possibility of enrichment consists in accepting the "We" dimension.  We live in a society that is increasingly planning a world made of individual and personal global markets.  A relational vision of contrast, hatred is nourished, focusing on the sterile dynamics of guilt, of reaction at the expense of reflection. Every human action has been emptied of every relational, emotional, affective, creation of a common thought, a new look at the reality created together, mixing the respective humanity, in a common contamination of their own experiences.

MTDD: Triple A: (ITALIAN: Attenzione – Accettazione – Ascolto) Attention - Acceptance - Listening

Could you, please, explain to our readers what you mean exactly and how you ended up with this sort of "Operating System"?

GT: I "invented" this formula that I called "the triple AAA report" to highlight three key moments to be able to propose and form relationships based on the authentic and honest sharing of the respective humanity, each expressing its own uniqueness.  This would allow an enrichment outside the dynamics of judgment, guilt, manipulation of the other.  In a horizontal, transparent,  respectful, adult dimension.

Three legs of a relational table, which in the absence of one of them would collapse to the ground.

(Accettazione) Reception: creating an openness in oneself to be serenely invaded by the other, with the courage and confidence to open the door to a stranger.

(Attenzione) Attention: tuning in, forgetting yourself for a while, about the emotional waves of the other.  As if we were looking for a radio station never to be found.

(Ascolto) Listening: committing oneself, accepting the effort of learning a new language, the culturally significant world of our interlocutor.

It is evident that if all of us would put ourselves in the perspective of the triple AAA relationship, human relations would have an exponential growth with results from the point of view of the pleasure of being in the "We" unimaginable.

Of course, my proposal is to bring the teaching of relationship science and relational dynamics into schools.  In particular, the perspective proposed by the masters of transactional analysis.

MTDD: On one occasion you stated that "In a person with autism all the senses work badly" and that "The key to everything is reciprocity"

Could you, please, elaborate this thought of yours?

GT: As far as the relational approach is concerned, I think I have already answered that question.  As for what I have personally been experiencing for 30 years while assisting people with autism, whose pathological condition has been diagnosed on the autistic spectrum, I can say, to answer those who ask me to explain this during my seminars on the subject 'autism’, that we can imagine as if all five senses worked badly, randomly, and above all without being equalized.

All this does not allow the creation of a reassuring memory about the reality and the relationships that these people live (to give a euphemistic idea) as a real siege.

Very meaningful, and dear to me, Piero Ciampi's phrase "absence is a siege", and the latest affirmation of the beautiful film "The lady next door" by François Truffaut "neither with nor without you".

MTDD: It’s Caesar ... It’s All Good! A relationship of mutual help is the work you published in kindle format following the experience you had with this boy.

How can its content help, in a practical way, families that find themselves dealing with this difficult mental condition personally and how can it educate the community, beginning with all those who might read it?

GT: As I have just explained, I have been assisting autistic children in the family for 30 years. Parents are the only ones who can tell us the reality of their children, because, as I love to tell, of the "instruction booklet" they have been building with great effort and suffering in relation to the pathological condition around which the whole family system is rebalanced.  Like a real living organism, every member of the same family will act according to the need for assistance and help of the child (70% of autistic people are male).  For this reason, it is fundamental for every therapeutic path to start with an alliance with all those who orbit, members of the family and not, on the territory of the person in need of help and assistance.

My intervention highlights all this, with an approach that I have called "good morning / goodbye", to the extent that both the beginning and the end of my family assistance is fundamental to the moment of reciprocal restitution of reality with parents.

The community should be informed about the reality of families with a child with disabilities, it could be a way to pause and reflect on their existence and rethink our priorities from a human and relational point of view.

MTDD: Do you think that the perception of time in families where a member is affected by a disability like Autism changes?  And if so, in what way?

GT: I have expressed in various contexts the concept of "time" perceived and lived in families in which a member needs continuous assistance from every point of view, emotional, psychological, relational, economic, and, at times, of "containment" in psychomotor crisis courses, which can express dangerous violent attitudes.

Time goes by fast, in the years in which the difficulties in developing a child who cannot walk through the developmental stages of developmental ages up to the possibility of self-determination and emancipation from the family must be brought to awareness.  Parents grow old, children continue to be dependent on the care of everyone who lives with them.  Time begins to flow backwards and the realities of families become more and more difficult and dramatic, with the painful thought of “what will happen after us", of what will become of one's children after the death of their parents.

The state, social policies, welfare, is deaf and absent in relation to these realities, while, in my opinion, the very story told in It’s  Caesar ... It’s All Good!  could be the basis for a bill that focuses on home assistance precisely from the diagnosis of disability onwards, as the state of a disabled person being assisted would cost much less in the age of development, paving the way for them to a more autonomous and conscious future. It would be enough to give the possibility to all university students in subjects and professions in which the helping relationship is a central element to be able to have a home care with a positive feedback on the curriculum of the studies.

This would have children, graduates, with an important life experience from the point of view of adult maturity and families of disabled people with fundamental assistance for daily needs and prospects in the future.

But the argument is that these aspects deserve a special study, which we may do on other occasions.

MTDD: How and to what extent did this experience with Caesar influence your life and what did it teach you?  How did it change you?

GT: In the subtitle there is an indication of the essence of the help profession.  "A relationship of mutual help" intends to underline that there is no change if we do not change together, if we do not create a new vision of reality, the fruit of the respective differences that, coming into contact, create a new way of living and feeling life.  By trying to feel the "musicality of silence" that Caesar directed, to enter his world, and by forgetting mine, I had the chance to understand and learn what is most important in life.  Hearing and understanding.  Living with confidence the reality that "besieges" us and understanding what remains in us to find the "words to say it".  Reading makes Free, Write [makes] Happy.  Reading what we live, Writing what we would like to live, to grow and become authors of our own destiny.

MTDD: Thank you, Giovanni, for this interview and for sharing this enlightening and exciting experience with us.  Should there be readers of my blog who wished to contact you or order your eBook, how could they do so?

GT: On my blog, readers will be able to find articles which relate to the themes and reflections proposed in my first six books. https://giovannitommasiniedizioni.blogspot.com

On my YouTube channel, they can find all information regarding my work as an educator and writer. https://www.youtube.com/channel/UCmmiakeF4z3FwdxBxIe8ROg

The synopsis of my first five Ebooks can be found at

https://giovannitommasiniedizioni.blogspot.com/2018/07/relazione-daiuto-quotidiana-resilienza.html