At nine, Paolo does not speak, and I am certain he never will—though we often hear the sound of his voice. Words hold no meaning for him the way images and shapes do. He seems to have no access to the ordinary modes of communication, to abstraction, and therefore no way to anticipate what will happen next.
Still, with tremendous work and energy, we manage to establish a few automatic routines of independence, a few verbal responses. Enormous victories!
He needs constant help and constant supervision because he gets into all sorts of mischief. He is fascinated by water, for instance; he jumps, runs, darts away in every direction. He cannot play, but he loves watching objects that shine and make sounds—cartoons especially.
And yet we communicate deeply with Paolo. He is wild about music and picks up melodies. When we touch him, he puts his hand in ours to be stroked, squeezes our arm, pinches our skin. He smiles, and his smile is genuine. It is easy to see he is happy. He makes sounds. He is curious. He has incredible energy. Paolo, on the whole, looks content—except when he is in distress, when he bites himself and pulls his hair. By nature he is fearful and has never shown any desire to bother anyone.
He is very sensitive to how we approach him. His apparent indifference can intimidate us and make us think he does not want to be near anyone. But if we attend to him without trying to catch his eye, without giving him time to touch us, without singing or talking, he suffers terribly from loneliness. He is on the verge of tears. Some people are naturally drawn to reach out to him, even at the risk of bothering him with kindness, going out of their way to get a glance, a smile. Everyone who cares for him this way carries the mark of it for a long time afterward.
What can we expect from him?
I have asked myself long and hard what Paolo's life means. It has meaning for me because it teaches me to grow in a difficult but deeply human way. But does someone's life have meaning only because it serves others? Paolo is not a "healing child" sent by God for our salvation. So what is the meaning of Paolo's life for himself? What path is he called to walk? Paolo senses that we love him, I think. But how can he love in return? As an animal loves, out of docility? His reactions are so tied to seeking comfort. He is good when he feels well and difficult when someone around him is not. I have never seen him show compassion or understanding for another person. That is one of autism's defining traits. Everything revolves around him, and sometimes I feel I am his servant when he forces me to get out of bed ten times a night without seeming to understand that he is causing me suffering. How can we lead him onto a path of charity, then? It is impossible, because that word means nothing to him, and that reality is absorbed by him without ever being given back or invited to return. There is truly nothing to ask of him on that front.How do we nourish his inner life?
How do you pray without language? How do you access God's Word when you understand neither words nor images? Nothing bothers me more than when someone, because Paolo smiled during a hymn, insists that he has had a mystical experience. No. He smiled at a melody he recognized or a particular sound. And yet it is moving to see him smile sometimes when we sing an Ave Maria—probably because it reminds him of a happy moment. Why not admit the terrible reality of his handicap, which cuts him off from what makes humans great: our capacity for charity and our search for God? But granted that he cannot have knowledge or consciousness of what he is missing—does that make his life less valuable than another's? Would his life be less dear to God than that of a saint?To what end?
We stopped bringing Paolo to Mass a long time ago. Not without guilt. The truth is, his behavior is nowhere near what is fitting. What sense does it make to drink from the holy water font, to run endlessly, to shout because he likes how it echoes, to go hunting for pastries hidden in the confessional? And he shows no interest whatsoever in what happens during Mass. His presence prevents everyone else from praying. The parish would need to know him better to accept him, certainly. But we parents are tired of explaining, of justifying his behavior, of fighting that battle. Besides, I confess—Paolo's presence at Mass is too much for me emotionally. He goes with friends from "A braccia aperte" and to Fede e Luce gatherings. At home, Paolo is excluded from the moments when we try to pray together as a family. It is already difficult with the little ones (though it seems to be with the older ones too!) so with Paolo in the middle, everything falls apart. Still, I often put a CD of beautiful hymns in his room and we sing with whoever is there. At the Fede e Luce meetings, I love the moment of prayer—a time of quiet when others look after my younger children and I sit with Paolo between my legs. It is a bit awkward, but it is brief, very simple, and we are all together.The sacraments
Paolo is baptized. Unless we believe he is a being full of God by some miracle of his handicap(!)—why could he not make his First Communion? Is it enough to refuse it to him on the grounds that he understands nothing of what he is doing and will never understand, no matter how hard we try? After all, God is not a concept but a person. So it seems to me that Communion is precisely the only means—not so that he understands, but so that he meets Christ. What am I to make of something a priest told me once, which actually gave me some peace: "God does not need sacraments to meet whoever he wishes. He acts as he sees fit, far beyond the sacraments." But now the question of Communion haunts me. Would it be a lack of faith in God's ability to meet Paolo? Another priest told me: "If he makes his First Communion, then he will have to receive Communion often!" But why? He does not sin. Could not a single Communion nourish his whole life? Or once a year, at Easter for instance? And why wait for Confirmation? Does he not need the Holy Spirit more than others, to help him grow? This sacrament that sends us into the world as witnesses of Christ—does it have no meaning for a child like Paolo? Why do the Orthodox give these sacraments together? And why is it so complicated to do for disabled children in the Catholic Church? Maria Amelia, Paolo's mother(Ombres et Lumière n.172)
