Who Decides What Is “Normal”? Autism as a Key to Rethinking Society

“Siamo Delfini Impariamo l'Autismo Aps” is a project born three years ago to improve the quality of life of autistic people through information channels aimed at circulating information and giving space to different realities, pursuing the goal of a shared work network at a national level. The soul of the initiative is the Roman Paola Nicoletti , mother of three children, the last of whom has a severe form of autism. Gabriele Ugolini is today a 26-year-old boy with autism , non-verbal and non-autonomous: this sticking to a sparse and limiting description.

Breaking away from conventional patterns, Gabriele, known as Lillo, is instead a young, smiling, friendly man who loves the world of Disney. Not only that: a padel and basketball player at a minus 1 level, yet an expression of inexhaustible love. He is also lucky enough to have an extraordinary mother, because Paola is a cheerful, ironic woman without any trace of self-pity , ready to fight on the front lines to overcome obstacles and bureaucratic delays , even putting her experience as the mother of a special son into writing.

'Tell me the sea inside you. Living with an autistic child' was born with this very intent: a sincere testimony destined to receive immediate approval in many fields, even at an academic level. Her latest publication is titled Civico 36 , published by Pendragon, whose style in this case is not autobiographical for a story in which pain leaves room for so much hope: the very hope that has never abandoned Paola, the Delfina, ready every time to dive in to re-emerge more resilient than before.

What is the aim of the association you lead?

“The purpose of 'Siamo Delfini' is to talk about autism to people of all generations, to talk about it through the voice of experts with the intent of bringing direct experiences. Furthermore, it is our task to provide people who do not know this peculiar universe with the tools necessary to overcome any natural distrust in front of individuals who function differently. The association aims to ensure that autistic subjects remain themselves, without fear of expressing their emotions and free just like dolphins”.

How can artistic creativity help an autistic person?

“Art is the expressive tool par excellence of our inner world. In the case of autistic people, in whom language and relational skills are seriously compromised, it can represent the ideal way to tell one's story, to communicate one's point of view and one's feelings”.

Is Aut Art a project destined to be revived next autumn?

“Despite the known difficulties when it comes to finding the necessary funds, we do our best to organize every year an event that we consider important for the topics discussed in the conferences by speakers of excellent level. An ideal opportunity to make this particular condition known in depth through the repeated invitation to the total breaking down of barriers, together with an inevitable social awareness. Therefore, precisely for this reason, a third edition is desirable”.

How are these initiatives received?

"Often, it is the autistic people themselves, who are able to choose and make decisions, who ask us to participate with their letters. Our initiatives seem to be of great interest to the entire world of autism, also thanks to the involvement of families and of society sensitive to the issue. I believe that the media and institutions should always do their part through a structured form of dissemination, especially for the benefit of those who do not have sufficient tools to self-represent".

Can you count on the support of the public administration?

“In previous editions we have received only free sponsorship from public administrations, without any other kind of help: but we will not give up”.

You are the mother of a disabled son. How did you manage to overcome the obvious difficulties?

“Difficulties are faced when they arise, putting all the necessary resources into play at the same time they are needed. This does not mean that it is easy, on the contrary: this is why the support of those who are walking the same path is fundamental”.

What message do you want to convey to families in your same situation?

“My message is always the same: our lives are complex, often complicated by very hard moments that force us to live a demanding, sometimes frustrating, daily life. And yet we move forward, because the important thing is to avoid falling into the trap of isolation and loneliness. The last line of 'Tell me the sea you have inside' says: this life is difficult but it's mine and I like it!”.

Does science promise valid solutions?

“In this hubbub involving the world of autism, between medical, scientific, ethical, social and philosophical aspects, expressing conclusive judgments would be really complicated. We are talking about an autistic condition and not a disease; on the other hand, it is associated with various comorbidities that are the subject of scientific research and treatment. To be honest, I wouldn't know where to start and what to expect from science. It is difficult to cure a condition with a drug... Instead, certain side effects can be treated, even if often in very expensive private centers”.

We live in a world that is only verbally inclusive. Have you ever had problems with rejection towards your child?

“Inclusive? I don't like this word, because it has that 'something' of concession from the 'normal' world towards disability that I don't like at all. Rights should be the same for everyone and never by concession, almost as if it were an act of magnanimity. Maybe that's why our events are inclusive on the contrary, given that neurotypicals are welcome. In more than 20 years there has been no shortage of refusals, attacks, distancing, and yet we have always fought to break down prejudice and ignorance”.

What and how much remains to be done?

“An infinite number of things, in infinite directions. In the social, cultural, educational, administrative, legislative, economic, scholastic and work fields. We are perhaps slowly emerging from the Middle Ages of autism, heading towards a first neo-Humanism: this appears increasingly evident despite the long road still to travel. It is therefore important to give continuity to the commitment and never lower one's guard. I do not belong to the category of parents at war against something or someone, rather I know that I am a determined person who does not avoid the battle in order to achieve a just goal”.