In occasione della Giornata Mondiale della Consapevolezza sull’Autismo, che si celebra all’inizio di aprile, mettiamo in luce gli ostacoli quotidiani che le persone autistiche affrontano e gli sforzi extra che compiono ogni giorno per vivere in una società in cui le differenze non sono ancora pienamente comprese.
The world can be seen in many different ways, but those who see it differently often do not fit into a society that claims to be inclusive but still maintains barriers. This is the feeling of many people with autism, who make up 1.23% of the Catalan population (around one in 81 people), according to the Aprenem Autisme association. Ninety per cent of this group have some form of hypersensitivity to noise or everyday stimuli, which makes it difficult for them to carry out everyday activities normally. Other people with autism need strict order, fixed routines or repetitive behaviour to function in an environment that often does not understand them. However, small tools such as headphones or certain objects can help them reduce stress.
Zacarías Benamier is a young man from Tangier (Morocco) who was diagnosed with Autism Spectrum Condition (ASC) when he was almost 40 years old. In a meeting with the media organised by Aprenem Autisme, he said that “interacting with people is always a challenge” and that after receiving the diagnosis “I understood many episodes and situations I had experienced”. He added: “The diagnosis gives you the gift of forgiving yourself”. During his childhood he suffered bullying and physical violence at school, and as an adult he was considered ‘weird’ and ‘hard to get along with’ at work because of his difficulties in social relationships. People expect us to behave like non-autistic people,’ he says. His case is not unique. According to a 2021 study by Autismo España, 12% of students with autism have been bullied at school and 71% experience social exclusion on an almost daily basis.
Benamier has level 1 autism and is highly gifted. He speaks five languages, and his love of music has led him to sing at the Orfeó Gracienc, a place he describes as “a safe environment” where he has been able to interact with other people. Nevertheless, he believes that not following certain ‘social norms’ has affected his fundamental rights. For example, he says that he finds it difficult to express himself in some medical consultations and that some doctors treat him like a child. He also believes that in job selection processes he has managed to get through interviews thanks to his high level of ability and his ability to hide his discomfort by making eye contact.
In a similar situation is Alejandra Da Silva, also diagnosed late and mother of an autistic child. I wanted to be accepted in all areas of life,” she explains, “but the social demands and sensory overload were such that she had to stay in bed at weekends to recover. She also claims that being a woman delayed her diagnosis: in her case, it took five and a half years. Gender bias in health care exists in almost all areas, not just autism diagnosis,’ she warns. Psychologist Maria Soledad Conesa Soto, of the Astrade Association, confirms that “diagnostic tools have a gender bias and there is a social view of autism that is more focused on men, which can lead to it being overlooked in women”. She also explains that “autistic women tend to have better communication and social interaction skills, and we hide some of the features of autism to fit in”. For both Zacarías and Alejandra, being diagnosed as adults was a relief: “I understood why I felt different, why the way I related to the world was not what society expected of me,” says Da Silva.
A tough fit for difference
Using these stories as an example, Aprenem Autisme wanted to highlight to the media the difficulty of accepting and understanding the different perspectives of people with autism in a society that is theoretically inclusive and accessible. It also presented a language guide with recommendations for more appropriate and precise terminology to talk about autism, with the aim of giving visibility and better explaining this reality, which often goes unnoticed or is ignored.
On 2 April, as every year, Aprenem Autisme celebrated World Autism Awareness Day to denounce the daily violations of the rights of autistic people and to advocate for their full inclusion and that of their families. As members of the Confederación Autismo España (Spanish Autism Confederation), they support a manifesto demanding, among other things, that people with autism receive the specific and flexible support they need at every stage of their lives. Autism Spain has also launched the ‘Somos Infinitos’ (We are infinite) campaign to highlight the diversity within the autism spectrum and to remind people that there are as many types of autism as there are autistic people.
