You say autism cases are very different. Can you tell us what Jaime looks like?
It’s one thing to define Jaime and another to define Jaime’s autism. Jaime is very similar to his sister, who doesn’t have autism. He is a flexible child, easy to carry, like his sister, they are calm but also active children, they like to move around, go to the park, get into places.
He likes music very much, if he could he would be in the water, in the pool, all the time. Autism cannot be an umbrella that prevents us from seeing the person behind it. You’re first a person, you’re first a child, you’re first Jaime, and then you have autism.
What does autism involve? It implies that Jaime has only a few words that only those of us who know him better understand, that he communicates by giving us photos, that he is not able to measure the risk…
I have bars on the windows because my son can decide that it is a lot of fun, as he loves heights, leaning on the window of a third to see the cars. You have to take precautions: you have to take him by the hand along the street because if he sees something very interesting on the other side of the road, it gives him to run out and cross it without looking.
Autism also means that he goes to a special school, which has few interests. But you always have to try to make sure that not everything is explained by the etiquette or diagnosis of autism.
People like to simplify things to think less, so if I know that someone has autism I explain everything because of their autism, but that’s not the case, no two people are the same, even if they have a degree of affectation or similar manifestations, because they are people with their character and their tastes and their manias, just like every human being is different which is the wonderful thing about being human.
Why did you write this book?
Writing for me is a balm. As Hemingway would say, I have saved many therapies by using writing as a method of healing, for reflection, for analyzing things and reflecting on them.
So when I received the diagnosis, the first thing I did was to open a private blog that remains private. And my 20-minute blog, Recent Mother, where I talk about a variety of things, has also helped me a lot in certain moments.
For me, writing is my therapy. The book is written because I received a proposal from an editorial that said: “We think it’s interesting to have your voice. Before I had received similar offers but I had not accepted, perhaps because it was not the time, but now that Jaime is 10 years old and we have been traveling for a few years and I took a distance, I really wanted to tell.
It’s not a self-help book but it is a book about accompanying and there are times when you feel accompanied it also helps you. That was the main intention.
What is the reception of the book?
I’m delighted because it’s having a lot of media coverage, especially since April 2nd is Autism Day. I imagine that when that moment passes, the repercussion will decrease, although it is a pity because the visibility is needed all year round.
The reaction of the people who are reading it is very good, even people who do not have children have told me that they liked it, that it has made them reflect. And that for me is the payment for the work of having written it down.
Apart from accompanying families with children with autism, did you intend to sensitize society?
Yes, it’s a war that I’ve had for a long time and also from the blog, in which I incorporated the fact of having a disabled child in order to try to normalize it, because many times it’s not known.
When you have a person with autism spectrum in front of you, you don’t see him: he’s not in a wheelchair, he’s not blind, he doesn’t have a genetic syndrome that can be seen in his features… I’m of the idea that if you don’t see something it’s very difficult to claim. I compare it with the LGTBI collective: if you don’t come out of the closet, if you’re not in society, it’s very difficult to achieve things.
I’m not asking anyone to come out of the closet, but I think it’s good because if you’re not seen, if you’re in a special school, if you’re on the street and people don’t know what’s happening to you, and if when people, when they see a child with a temper tantrum or a strange behavior, they just judge too quickly that this child is very rude, that his parents don’t know what to do with him… if we’re in that line, in the end you’re going to move much slower.
These children need us to fight a lot for them because their rights are not being respected, if we move more slowly they are lost opportunities for many of them.
In what way are you saying their rights are not respected?
For them, real inclusion is very important. There are many challenges because their rights are not being respected:
they are being diagnosed very late, there are enormous delays in order to be able to assess them and see in which educational modality they have to be, there are no places for them
In the case of adults the situation is much more dramatic. If with children there are few services or help, with adults there is nothing. They have the right to work, to live in society and to have their rights respected.