"We do not feel and do not perceive the same thing" | Entrevi …

April 2nd marks the World and National Day of Awareness for Autism. Lisa Perissé, 21, recounts how she grew up with her brother Dante, who has autism spectrum disorder (ASD) when she was only 6 years old. In dialogue with this diary, he remembers the most difficult moments they had to live, the things he learned from his brother and the successes that can be achieved if the diagnosis is accompanied by the appropriate therapies.

-What age did you have when Dante was born and what do you remember at that time?

-I had 4 years and a half. I remember that since birth, it was very chaotic (it marks a brief pause to contain the first tears that will reappear later during the interview). It was a very complicated baby. I cried a lot, you never understood if I was hungry, if something hurt, if I had sleep. I remember everything as very … enquilombado. That's the word.

-And when did you understand that Dante had different attitudes from those of his age?

– Since he was born, he had strange attitudes. We never finished knowing he had listened or he had seen everything because you had called him and he had not looked at you. We did tests all the time. He was in the cradle of the room, for example, and my mother 's television in the dining room made Barney very loud, the one he loved, and he sent me to see what' s going on. it was. And it was strange, because sometimes he reacted, sometimes not. It may be the first things we started to notice were not typical.

– How was it to live with him?

-Practical, he did not bring me back. With my elders, either. You had to be on him to communicate with you. And you did not even do it. You managed to integrate with what he was doing, but you never finished knowing whether he had saved you or not. When it was a little bigger, it started with very solitary games. I laid the books one beside the other on the floor and watched them for hours. Or put the cars online and watch for hours too. And so with the shoes, the dolls, with the legos.

– What were you thinking at that moment, being so young?

-I think since I was so small, I've normalized it. I started to get into what he copied. If he put small cars, I would put small cars in a row. If he continued to watch them, I would watch them with him. And then I started to try, what happens if I move the toys? And there, a lot has been changed. He did not like it. Whenever I think of our brothers relationship, I have the impression of torturing him a bit (he smiles). Because I took it to the limit. And at the beginning, my parents shit me fart. But then they saw that Dante was on, that he began to understand that it was our way of playing. And it also helped him to relax a little.

-And how was it growing with Dante?

Growing up with him has taught me a lot. Do not judge, tolerate, put myself in the other's shoes. He taught me to respect, to understand things that may have been difficult for a girl of that age. To understand, for example, that we always had to cross the same streets from home to my grandmother's house, otherwise he would be angry. It was good to go through some of these things, because they have taught me to accept that we do not feel and perceive in the same way.

– Do you remember the day they were diagnosed?

– I do not remember much because they diagnosed him when he was 2 years old, so I would have 6. What I remember, is that everything was more chaotic since the diagnosis because my seniors had to start looking for therapies, doctors, see the topic of social work.

-And for you as a sister, how did this situation affect you?

– Since Dante was diagnosed, I think my family started to press. I've always had to go very well to school, in English clbades, at the music school. Everything was also more demanding in the sense of tolerating more things. That I could not complain about it was breaking things, for example, because it was not his fault. And the truth is that no, it was never his fault.

Modified family dynamics?

-It was complicated. It's complicated (it remains silent). It was very difficult to organize and coexist. Because autism involves a lot of very painful situations and all family members do not feel the anxiety in the same way. My elders were very sad. They had trouble accepting the diagnosis. Maybe a lot more than me. At that time, it was more difficult because there was not the same information that exists today on autism. But they have always been very positive.

-What were your fears at that time?

-I did not know what was autism. My big concern at the time was whether I could ever talk, if I could play with me. And I found a way to be with him, a way to make him laugh. So my worries at that moment were almost solved.

– And today?

-Today, what worries me the most, is the future. I wonder, will he be able to be self-sufficient? Will you be able to enjoy? Our potatoes are not eternal. Who will stay with my brother? Am I going to be me? How am I going to do? I've talked to other brothers and it's a common concern that elicits a lot of feelings that sometimes you do not know how to live. But that's why it's important to think that every child has their own development and that sometimes what seems impossible becomes daily. For although it is true that Dante has limitations, it is also true that he has progressed a lot and that he can continue to progress. There is no treatment, but there are therapies that help a lot. Today, for example, he knows how to cook himself.

-What is autism for you?

-For me, autism is a condition with which you learn to live. And that does not mean that autism is shit. Because it is true that you have to manage many things, but I think that if you know how to see the positive side, you will learn a lot too.

-How about those who are brothers of newly diagnosed boys with autism?

-It's good if they get angry. It is good if they are not perfect. And also, and I think it's the most important thing to point out, every boy's process is different and no matter who comes and tells you that your brother will never be able to do this or he will not be able to do this. Because it will depend on him alone.

Report: Blue Tiled.