The signs of the road
A few years ago, more than ten, I decided to fantasize, through a blog, about different experiences in my life with a person with autism.
I am the father of Ivan, born in 2000, diagnosed with autism spectrum disorder (ASD) in 2002 and currently with a 67% disability.
In one of the posts on that blog, I raised the poetic and imaginative possibility that I had been preparing myself throughout my life, as if they were signs, to face such a precarious situation in oral communication as the one I was about to encounter. Pure fantasy, of course. I don't believe in phenomena that lack a scientific explanation.
I happen to be a huge music fan. I've been playing guitar since I was eight… I started playing over 45 years ago. I'm passionate about instrumental rock (as well as rock, punk , urban, blues, and classical music) and the ability to convey feelings and emotions through the combination of certain tones and chords. It can lift your spirits or plunge you into despair. All with just music, without needing to explain with words what you want to make people feel.
At home, we saw Iván sobbing uncontrollably, pouting and gasping for breath, sitting on the living room sofa next to us. The only external stimulus was the music. I'm sure of it. Bolero a Marcos, by Vicente Amigo, of course.
We had to stop playing one of my early musical compositions in the car stereo because at a particular passage, I would start crying uncontrollably. This happened on different days, in different situations, and in different places. Was it a frequency issue? I don't know.
At home, Iván gave us goosebumps, a lump in our throats, and brought tears to our eyes… all 15 of us celebrating my eldest daughter's birthday when, during a karaoke session, someone had the bright idea of handing him the microphone. No one, not even us, his parents, had ever heard him say more than four words in a row. And then… to the astonishment of everyone in the dining room, he sang his assigned song, from beginning to end, and with a good score. Another shiver ran down our spines; the lyrics were: "Before seeing the sun, I'd rather hear your voice." And this isn't just poetic fantasy.
Of course, we've also seen how excited he gets, how thrilled he is with the songs he likes. He moves around, jumps, and sings at the top of his lungs if necessary. It doesn't matter to him if it's in English, German, or Swedish… he just reproduces what he hears.
There's always music playing in the background at home, and it's not because of us. Ever since she learned to request radio stations from the voice assistant device we have in the living room, it's become one of her main routines. Music is, after all, a powerful means of communication between a sender and a receiver, between a musician and a listener.
In that same blog post, I continued to express my doubts. As an amateur, I've never known if I'm more of a musician than a photographer, or more of a photographer than a musician. In any case, music and photography are my outlets when tension builds up inside me.
I still have the camera that was at my parents' house. A Werlisa with its brown case. It was one of my birthday presents. It wasn't until I was 20 that I managed to get my first SLR camera. Developing a roll of 36 film was a real headache… it meant an extra expense for those of us who weren't exactly rolling in dough.
Gemma Vilanova Porqueres
The arrival of digital media gave me the opportunity to develop everything that was swirling in my head, pouring it into an image. My passion for photography led me to contact various photographic organizations and establish connections with other enthusiasts like myself through the internet. It even led me to dare to create the photography group in my town, the Arts&Foto group at the Taller de les Arts. A group that is still active.
How much a picture can say! A single image can describe a situation, a way of life, a society, an emotion.
Is it a coincidence that I'm the father of a boy with autism and have such a passion for photography? Has autism developed my interest in photography? Perhaps I've simply used the tools I had available.
In any case, Iván has used images as a means of communication since his early years. From basic pictograms to his trusty tablet. For many years, communication between different schools and our school, through Iván, has consisted of a photo on his tablet.
In the afternoons we would go to buy bread and take a picture. The next day at his center, in front of his classmates, Iván would point to the photo on the tablet and say, "Iván... buying... bread." The same thing happened with the hairdresser, the park, the restaurant, on weekends... At the center, his teachers would take a picture of him while he was working, and when Iván got home he would explain: "Iván... doing math," "Iván... doing theater," "Iván playing."
Our communication is very basic, it's true, but when one sense isn't fully functional, we grasp at any alternative we can find. From the tension in their posture to the temperature of their hands.
Photography has given me the opportunity to explain things more visually. I was very clear that it was the tool I needed to explain how we experience autism from my home. But I didn't want it to remain just a simple exercise, so I decided to gain experience by getting involved in different projects and exhibitions unrelated to my main idea. Over time, you realize that the subconscious is always present and that the photographs that define me most say more now than they did when I took them.
Three years spent identifying the meaning my work on autism would have, carefully studying every detail and trying to avoid leaving any loose ends so that the result would be compact and concrete, culminated in Puzzle Pieces .
Puzzle Pieces was conceived as an exhibition, combining photography, cyanotype (blue like autism), definitions, and texts of poetic prose. The intention was to raise awareness of autism and to normalize various characteristics of ASD that are not so different from what the rest of us usually do in our daily lives.
With one more twist and the complicity of a close publishing house (Excellence Editorial) I embarked on the adventure of publishing 1000 copies in hardcover book format to be able to reach more people.
At the end of 2019, I managed to open the exhibition and formally present the book at the Can Cortes farmhouse in Palau-solità i Plegamans. After having the following exhibitions arranged, just a few months later, the pandemic hit, bringing lockdowns and the general shutdown caused by COVID-19… and it wasn't until the end of 2021 that the exhibition began to tour again in other locations.
I continue my efforts to make the situation of a family within the autism spectrum visible to others, to acknowledge their needs, and to normalize different behaviors that not everyone understands. I continue my efforts to move the exhibition from town to town and to distribute the book wherever someone might be interested in reading it.
Now that the warmer months are here, I want to end this text with the original text that closed my blog post more than ten years ago… something like this:
"I actually think it's been the other way around. From my perspective, I tend to look for things that have been useful to me in life and have helped me express something, without needing to use spoken language..."
Perhaps all those hours I spent in Caspe (Zaragoza), every summer, diving in an irrigation pond, about 8 meters long by about 2.5 meters wide, and from which there was no way to get me out, now also have a meaning…
Now, in the summer, I have a round, inflatable pool, about three and a half meters in diameter. Every day, around five o'clock, Iván says, "...Dad... swimsuit... pool..." And I've realized that in that long hour we spend, most of the time submerged in that little more than half a meter of water, we're on equal terms. We're both equally autistic underwater, and I think I can begin to understand his way of seeing life... Sound arrives distorted, weak, and meaningless. We don't need to speak; we simply understand each other. We're completely isolated from the outside world... and the longest glance we exchange, our eyes red from the chlorine, is those two seconds before the water breaks into thousands of bubbles in the form of laughter... and we don't need more time than it takes to catch our breath and dive back in again... underwater... which is where we feel most at ease...
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