The father of two autistic twins, in a difficult age: “Our children are growing up, does anyone ever think about it?”

«Dear Silvia, I am writing to you because, as the subject of my email says, April 2 is World Autism Awareness Day, and we, my name is Donato It is my wife Antonella, we are party to, being the parents of Niccolò e Pietro, twins. And both are autistic». Dice Donato Montanari that he doesn’t even know why he did something he had never done before: write to a newspaper. “Perhaps a gesture of weariness,” he will explain later, when we talk to each other. “This April 2, every year more, makes me feel like those old veterans of the Great War who once a year take their medals out of their boxes, dust them and wear them, and then put them away at sunset.

Heroes for a few hours, and then who remembers them. But for us every day is April 2nd».

Born after a long wait and thanks to assisted fertilization, Niccolò and Pietro grew up inside two different amniotic sacs, but they were born with a common pathology that at first manifested itself with stubborn silences that made us think of a deafness problem (“instead there they feel very well ») and then with typical gestures: glance that escapes, walking on toes, hands that flicker. The diagnosis was easy: autism spectrum syndromes, in the plural, why autism is many things and Pietro and Niccolò are not the same in their disease. «In the beginning», Donato recalls «you feel invincible: I’ll make it, we’ll make it. Take the measures of things, create a communicative code that does not foresee, for them, the need to speak. It was difficult at first, but somehow we got by. Walking on that balance as thin as a thread, I wondered: what can happen to me? What could have happened, and has happened, is that my children have grown up. My two children have become two boys who, just the day after “their” day, will turn 13 years old. Autistic children grow up, even though no one seems to ever think about it. Niccolò and Pietro have grown as tall as me, fully invested by puberty, with feelings and impulses that they cannot interpret or verbalize. The desire of the body makes them restless and violent ».

Donato wants to tell some truth about their four lives. The truth is that Pietro, who is still a child inside, does not understand what is happening to his body, and so he bites and tears his hair. At night he walks on the closets, at 4 in the morning “we are there, to convince him to come down”. Niccolò, who of the two is the one who has understood how to manage his sexual impulses in private, but has become violent with others. «When Antonella realizes that she is about to explode she has to lock herself in the bathroom. I have enough strength to fight it, but for how much longer? ». Last summer they tried to take a short vacation in Rimini. “But we had to come back on the second day, running.” He recounts those months with a terrible word: “slaughter”. For some time now, things seem to be going better: Niccolò has been given a new generation drug (“the drugs are needed, please write it down”) and is calmer, almost cuddly. «When in the office they ask me: do you never get angry about work? I think that with the life we ​​lead, perhaps I have become numb ».

Because then there is also work, normality, as for everyone. «I leave the house and I have to remember that the world has different codes, rules and times. I have to reset myself, and do it again before I open the door, when I get back. ‘ Antonella is an educator, takes care of disabled children, Donato works in a company not far from home. During the day, the children attend Dosso Verde, a school that has a special section for people with their needs. They use alternative augmented communication: a vocabulary made up of images. They know how to do mathematical operations and write a few words on the tablet. “School inclusion is a nice concept that perhaps works for some, but not for everyone. My kids in a normal class with a support teacher is something that would never work. They tell me: classmates would take care of them. But that’s not true, it’s too difficult an undertaking even for us as parents, let alone for peers ». Thanks to two teachers from the school, to whom the boys are fond, Antonella and Donato managed, before the last lockdown, to go out for dinner one evening, the two of them alone. “An hour and a half only, while the girls were home with them.” Usually, and very rarely even in times of non-pandemic, they go out with their children. They have identified a couple of pizzerias that accept “our times and our oddities”. From when they enter to when they leave, no more than 25 minutes can pass, spiced with rituals that most restaurants are unwilling to tolerate. But now, with the lockdown, the problem does not even arise, and even if the premises were open Donato could not risk getting the covid: he is diabetic, suffers from obesity, for 13 years he has been forced to sleep with C-pap, the helmet that has become infamous as respiratory therapy for Covid patients. “If I take it I’m dead. In addition, I am a caregiver of disabled children. But none of us, neither they nor I, were called for the vaccine. Every time I leave the house it is as if I were playing heads or tails with destiny ».

When he thinks of Pietro and Niccolò’s, of destiny, Donato feels his strength failing: the theme of after us, so central to all parents who have on their shoulders the almost exclusive burden of their children’s lives, ended in second floor in the brain, overwhelmed by the tumultuous everyday life: «We already go crazy if the next day is the same as before. I can’t think further now, ”he admits. «Of course the dream is that they can become, albeit with support, autonomous. May they find a place to live in safety and serenity ».

And so, on the day of the medals, Donato and Antonella find a sense in this April 2 to ask to be seen. At a time when 1 in 7 children are diagnosed with autism spectrum syndrome, perhaps the time has come to set up a commission to look after the needs of these children, who will be boys and then men, and their families. “I wanted to be honest about our situation. I love my children above all else, the scent of their skin wakes me up in the morning and keeps me alive, day after day, even when these days are hard. But it is difficult: you have to say it, be listened to. And help yourself ».