A blue puzzle piece. This is the symbol chosen for April 2, the world day for autism awareness, World Autism Awareness Day. And again this year, due to the pandemic, no live initiatives. Covid-19 has upset everyone’s lives: isolation has been – and still is – very difficult to manage, and for many people on the autism spectrum, this situation has proved even more complicated. Isolation means disruption of routine, anxiety about contagion and distance from a daily support system such as family, friends, associations and school. From one day to the next, everything changed and also the therapeutic path inevitably underwent changes. In many cases they have been activated forms of tele-rehabilitation: a modality that for the first time has entered the daily life of both users – families with autistic children and adolescents – and therapists who have tried to adapt the new tool according to the specific needs and individual needs of each one to develop a therapeutic project customized. It is, in fact, necessary to point out right away that there are no two autistic people with the exact same characteristics: autism is a spectrum and it includes both the most severe forms and the mild forms closer to the so-called neurotypicity, that is, to non-autistic people. It is a condition that has to do with the development of the brain: this is why the term used is neurodiversità. 270,000 people in Italy suffer from one of the autism spectrum disorders.
The initiatives
Numerous events related to the Autism Awareness Day were held in all Italian regions. First of all, the color of the squares and buildings of the cities which for a few hours will be illuminated in blue. To raise awareness among all citizens, the main monuments and institutional headquarters will also shine. Thus the facade of Madama Palace, seat of the Senate and the facade of Montecitorio, but also all the ancient gates of Florence and the seats of the municipalities in most of Italy. And if Rai will dedicate many appointments of its schedule to deepen the problem of autism, thirteen characters including Susanna Tamaro, Roby Facchinetti, Giacomo Poretti, Giovanni Storti, Antonio Provasio, Cristiano de André and his daughter Alice, the Paralympic athlete Martina Caironi, the midfielder of Inter and of the national team Nicolò Barella tell what it means to be autistic in a video edited by the director Chiara Francesca Longo, professor of Scuola Futuro Lavoro in Milan, the first in Europe designed to meet the needs of students Asperger. Promoters: the Un Futuro per l’Asperger Foundation, Aps Angsa Lombardia (Association of parents of autistic subjects) and the Sacra Famiglia Foundation of Cesano Boscone. In the video, the characters read the pills that concentrate the needs and characteristics of autistic people, written by Lucio Moderato, who passed away last December due to Covid. The purpose of the film – it was explained in an online conference – is to contribute to the dissemination of correct information that counteracts discrimination and improves the quality of life of people with autism. And the Federation of Speech Therapists will also take stock with a series of video interviews starting at 9 on its YouTube channel (accessible from the website www.fli.it).
Longform
When autism is an adult affair
by Maria Teresa Bradascio and Fiammetta Cupellaro
The campaign “two april every day – ConTattoBlu“. From supermarkets, to railway stations, from airports to shopping centers, a welcome path will be created for autistic children and young people and their families, thanks to the help of personnel who will be trained by the staff of the Daniele non-profit association which is also the promoter of the initiative. “Let’s take hands in this moment of distance” is instead the network’s proposal Autism offices in Italy addressed to all pupils. And again from Sportelli Autismo Italia is the other initiative called Blue Hour: some chains of shops and supermarkets every last Tuesday of the month from 16 to 18 will turn down the lights, sounds and music. Measures to improve the reception of autistic people and their families.
The symbol of the puzzle is the blue color
The day of April 2 is linked to autism in 2007, when the United Nations designates it as the official date for all autism organizations in the Member States and to encourage them to undertake awareness measures. The day is born without colors and symbols. So where does the puzzle symbol and the color blue come from? The puzzle piece appears in 1963 as a symbol of the National Autistic Society and inside it depicts a child crying to indicate the profound suffering of autistic children due to a handicap that isolates them from the world, “a puzzling condition”. Obviously it was 1963 and autism was still considered a psychiatric and childhood illness. In 2005, the logo, revised and limited to just the blue puzzle piece, was adopted by the Autism Speaks association and spread around the world. The blue – as he explains, on the blog Sloths in Antarctica, Etta Patapum, autistic – in addition to symbolizing sadness, it is used as a reference to male childhood because it seemed (but today we know that it is not so) that almost all autistic children were male. Autism Speaks begins its work by organizing fundraisers to fund medical research to find a solution to autism. A cure. And it does not aim, however, at social inclusion. Not even involving autistic people in their governing bodies. For this it has often been criticized by autistic people who do not feel represented at all, just as they do not feel represented by either the blue or the puzzle piece that alludes to the idea of being incomplete and mysterious – preferring, instead, the colors of the rainbow. – faded into each other in the infinity symbol, just to symbolize the enormous diversity of all the people in the spectrum – or even the red and golden color. Among the reasons, also the chemical symbol of gold: Au (tism).
Too many false diagnoses of autism and dyslexia: the risks for children
by Paola Mariano
This year to celebrate April 2, the United Nations – as stated on their website – have decided to address the issue of work: Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World, Inclusion in the world of work: challenges and opportunities in a post-pandemic world. Because one of the 17 Sustainable Development Goals – adopted by the United Nations world leaders in 2015 in order to reduce inequalities in the world – concerns work. This is goal number 8, that is, “decent work and economic growth” which means guaranteeing decent work for all and creating inclusive environments. Thus, precisely for the day of awareness on autism, the United Nations in collaboration with Specialisterne – a Danish company that organizes training courses for autistic adults with the aim of introducing them to the world of work and which in 2017 opened the its headquarters also in Italy – have organized a round table in which autistic people will participate who thanks to their skills and abilities have managed to enter the world of work.
“Suffering from autism”: an expression not to be used
It might seem strange because almost always we talk about autism referring to children or adolescents and rarely, instead, we talk about autistic adults. But, in reality, autism is a lifelong condition. And many people only discover that they are in adulthood – a situation that differs greatly from those who receive a diagnosis as a child. Often the expression “suffers from autism” is used or, conversely, refers to “special people with superpowers”. Certainly there are autistic people whose condition causes problems, suffering and situations that are difficult to manage both for them and for their families and this cannot be denied. But there are also a large number of autistic people for whom their condition is not necessarily a source of suffering. Maybe – as he points out Fabrizio Acanfora, autistic, author of Eccentric, autobiographical essay on autism for which in December 2019 he won the first absolute prize at the National Award for Scientific Dissemination Giancarlo Dosi – it would be enough look at the differences for what they are, that is, human characteristics, and think of autism as a different organization of the nervous system. But if, on the one hand, having an early diagnosis allows the boy or girl to start, together with their family, an individualized path with a multidisciplinary team, what happens if the diagnosis is only reached when they are grown up?
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