Santiago de Compostela (EFE).- Spanish society in the 21st century faces a health system in which diagnoses are being “covered up” for people with Autism Spectrum Disorders (ASD) and a collective thought that those who suffer from them are ” different people”, as explained by the president of the Galician Autism Federation (FAG), Mercedes Fernández.
Despite the fact that autism began to be studied in the 1940s, family members, those affected, and associations agree that it is still taboo. Proof of this is that this Sunday, April 2, for Autism Awareness, the Autism Spain Confederation and social entities seek to give it greater visibility through the “Let’s call it by its name” campaign.
However, detection today is carried out by “specialized entities”, which hinders the ideal of “accessing a diagnosis as soon as possible, the better”, as Fernández details. And he adds that there is a “gender bias” by which women with bipolar disorder or depression are confused with ASD.
In Spain, the number of people recorded with ASD rises to 450,000 and in Galicia to 27,000, according to the latest statistics. Among them, as Fernández says, “they share a diagnosis, but each one has different capacities, needs and interests.”
To better understand these realities, two mothers have agreed to share with EFE what day-to-day life is like, never identical, except for some routines, in a home where there is a diagnosis of ASD.
Belén Cela: “Every day is a world”
Belén realized that something was wrong with her son Izan, now 4 years old, when the stereotypes (involuntary movements) typical of a baby did not disappear and the very loud noises or the phrases with double meanings of the “Galician retranca” began to become quite a challenge in the family environment.
“Either I don’t speak his language or he doesn’t speak mine”, was the thought in that home, until the little boy was 3 years old and he was diagnosed with grade one autism. This is characterized by the existence of peculiar communication skills that can make social interactions difficult.
Assuming it was a “complicated” process, Cela stresses. And, sometimes, with tears in between, since on a daily basis she notices how people look at her “badly”, as if her son was “ill-mannered” or “wild”, which leads her to be constantly in the “obligation to justify” all the time “for the good of the child.”
In his opinion, there is still a great taboo around autism. Even, he comments, “there are parents who do not accept it.”
Although in his case he tries to “carry it normally and not ashamed” being aware that “every day is a world”.
A “complicated” day can be one in which Izan does not understand what is happening around her, in situations as mundane as going to the dentist and having to open her mouth, or suddenly playing tag with her classmates, or when she simply does not anticipate what you are going to do.
If an unknown environment is added to the latter, it becomes “irascible”, according to Cela, and that is when the screaming and crying appear. All in all, Cela remarks that “there are many days of light” in which Izan leaves school “calm”, he reasons “well” and that they are, in short, “wonderful”.
Concepción Muiña: “I wish the world was through his eyes”
Concepción acknowledges that it was a “strong upset” to receive, first, the diagnosis of “mental retardation” and, later, that of her daughter Paula’s ASD when she was only two years old.
Little by little, she was assimilating that the little girl “did not evolve like a normal baby”, but even so, her girl managed to communicate through sign language at age 5 and already through oral language at 10.
Hence, at home, Paula, at 25, is a born fighter for everyone. Although her mother admits that the aforementioned advances would not have been achieved without the professionals who supported them, since to “help them you have to understand them and, to understand them, put yourself in the hands of specialists.”
To the rest, share, “you are adapting.” And, therefore, he knows that if Paula wakes up “happy”, the whole family will have an “easy” day and, if not, her character will influence “a lot” on the rest.
