Close, so far away

The end of the day

“And now sleep Dad”. This is how he tells me he wants to go to bed and wants me to tuck him in. There’s nothing random about the next five minutes or so. Everything is scripted and the steps are always the same. He waits for me with the lights on because it’s me that should turn them off. Then I lie beside him and wait. He pushes himself close and says “belly”. This means that he will spend the next minute pushing his belly rhythmically against my body. It’s his way of reclaiming his body before sleeping, his way of retrieving the different bits and pieces hanging in the air, or lost altogether along the day, and bringing them together again. I am the outer edge against which these lost parts can bounce and get back towards his center. Countless pieces of Matei suspended in mid-air, trying to find their way back home.

After one minute of “belly”, I gently push him away. He immediately says “eyelashes on the ear”. Lying on his back, he extends his left ear to me and waits to feel my eyelashes on it as I blink. “Faster”, he demands if I don’t blink fast enough. “Dad, do fast”. I am fast blinking with my face pushed against the pillow. I don’t know how it feels for him, but I know it’s an intense sensory experience. Sometimes he starts laughing uncontrollably but most of the time he simply hums and shakes, overtaken by sensations.

As soon as I’m done, he demands to give me a “kiss corner of eye”. In fact, it’s more of a prolonged pressure applied with his mouth at the outer corner of the eye. “Don’t touch the eye”, I tell him repeatedly. Still, the temptation to inch ever closer and cross that boundary sometimes overwhelms him. He tries to catch my eye with his lips. It gets him a sensory high that seems to be worth the risk of me getting upset. But I rarely get upset anymore. We are each playing our role in this scripted play. He tries to push the boundaries; I resist, warn, or gently push back.

I used to be overly aware of how strange these things may look to an outsider. But there is no outsider here and, after having done them day after day, week after week, the strangeness goes away. It’s just the way things are. He turns his back to me, seemingly ready to sleep. But it’s not over. Like an addict who needs just one last fix, he rolls over and demands to touch the corner of my eye once more. Sometimes he demands to touch the eye directly, knowing that the answer will always be no. He turns and squirms, trying repeatedly to reach my eyes but retreating each time I resist. He is not upset about not being able to get his fix; it’s just one more act in the play, one more thing that needs to be done.

I get close to him and hold him from behind. He is still trying to reach back to me a few times. Then he lets go and relaxes in my embrace. His hair smells of cheap shampoo. Earlier, when I helped him shower, I used what I could find: a tiny shampoo bottle that I took from another hotel and carried around for months. 

A boy in the world

Matei speaks in short sentences, most of which do not have verbs. When he meets somebody for the first time, he always wants to know their name, their birthday, and where they live. He plays elaborate games with his papercut friends. These friends are alter-egos of people around him, from school mates and instructors to family friends. He takes them on trips such as this one and reenacts with them past activities or invents new ones.

The silence is so complete now I can hear it. I was for a while immersed in my own thoughts. I was writing something and suddenly I heard his rhythmic, deep breathing. He finally fell asleep. His face is calm like a lake at nightfall. We finally settled down in our modest hotel room, after a day spent in the forest.

We followed a sunlit river valley coiling among hills. We crossed the river keeping our balance on unstable wet rocks. We rested in full sunshine listening to invisible birds singing from all directions. We froze on our path seeing a big mama boar leading her piglets, all lined up behind her, into the forest. I prepared sandwiches for both of us. We lied down on a bed of rocks perfectly sculpted by water over centuries.

Chrysalis

He was agitated most of the day and had a hard time falling asleep, as if his agitation was some kind of parasitic plant clinging to him, trying to get hold of him more and more. But now he is completely abandoned to sleep. Free. Enveloped in his blanket like a caterpillar in its chrysalis, dreaming of becoming a butterfly. The bedside lamp illuminates part of his face. The room smells of wood and lavender. I try to stay silent so I don’t disturb him. I keep all darkness at a distance. As long as I am here, no one and nothing can harm him.

His face half-lit, our backpacks half-emptied and fallen on the floor, our bodies in this bed in this hotel in this forest in this world. Right now, everything is exactly as it should be. I spend most of my life feeling that I am falling short. There’s this voice telling me, often screaming to me, that I should start doing something, stop doing something, or change the way I am doing it. Carrying this voice around is exhausting. 

But now, watching him sleep, this voice is reduced to a barely audible whisper. This is where I should be and there’s nothing else I should be doing. I open on my laptop the journal that I have been keeping for almost a decade. I start a sentence, delete it, start another one, delete this one too. There is so much to be said but I cannot seem to find the right starting point. My mind drifts off the page. I think of my aging parents, of me as a child, of grandma’s garden far away, of hiking trips with my dad. I think of places left behind, drifting away from me with each passing year. I think of that valley in the Apuseni Mountains with its winding river, shining in the sun, and the flocks of sheep crossing it slowly, almost imperceptibly, led from behind by sheepdogs. 

To sleep, perchance to dream

Then I see the figure of a man emerging from the dark, higher up, where the trails that leave this valley fork and enter the forest. He looks a lot like my father, with whom I have walked those trails, but there is something about his swaying, slightly disorganized walk that makes me think. The man approaches me, a dark figure against the setting sun. As I watch him walk, I feel that I know this man well. I know this walk, the swinging of his arms, the way he holds his body. Then all of a sudden I am not on that hill anymore. I am again in my rental room, lying in bed. That man is lying next to me and I can finally look at his face in the dim light of the bedside lamp. He is my son. 

He is much older now, probably in his 40s. He looks at me with no expression, as if looking through me. Is he lost in thoughts? Sad? Worried? Lonely? What kind of life does he have? He looks straight into my eyes and I feel like putting my hands over my face to escape that piercing stare. My arms feel heavy. I look at my hands and observe the long veins, the brown spots and the slight trembling. I walk my hands gently over my face, feeling each wrinkle. I feel as if wearing somebody else’s face. An old man’s face.

I check whether I can find somewhere on my neck the boundary of a mask but all I can feel is paper-like folds of skin. Then my son leans towards me and pushes his lips at the corner of my eye. My paper-like skin crushes under the pressure and, when he leans back, I see patches of skin stuck to his mouth. Then I wake up.

Autism Stories: un nouveau chapitre

Gros poisson, petit poisson

Je parle au téléphone avec Giuliano de temps en temps. Il a 39 ans. Il passe son temps entre le centre résidentiel et le domicile de ses parents, où il vient passer le week-end. Il s'intéresse à l'électronique et à la technologie, en particulier aux appareils photo et aux haut-parleurs. Il aime les gros poissons. Il aime faire de longues promenades et demander à des inconnus de prendre des photos avec lui. Il porte un pyjama quelques tailles plus petit.

Giuliano avec ses photos bien-aimées de gros poissons

Lorsqu'une de ses connaissances est décédée il y a quelques mois, Giuliano a été aux prises avec l'anxiété et la tristesse. Il était inconsolable. Presque en deuil. Il m'a dit qu'il pensait à la mort d'autres personnes dans sa vie. Il ne parvenait pas à trouver la paix.

Je lui ai dit que ça ira mieux. Que c’est normal de ressentir tout ça.

Lui dire cela semble à la fois nécessaire et inutile. Je veux l’aider mais je sais que dire aux gens que ça ira mieux ne les fera pas se sentir mieux. Cependant, avoir quelqu'un à qui parler, quelqu'un qui écoute et se soucie, peut les faire se sentir mieux.

Dans un message qui m’a été envoyé peu de temps après, il inclut quelques émojis de poisson. Je souris. Je sais que c'était pour lui un signe d'amitié et de proximité. Lorsque je l'ai rencontré pour la première fois et que je me suis assis avec sa mère pour discuter, il m'a montré ses photos de requins marteaux, de thons et d'autres gros poissons. Il a dit combien il les aimait et un peu plus tard, il a ajouté que sa mère est un gros poisson et lui un petit poisson qui nage autour d'elle.

Imaginer un projet

Giuliano fait partie d'un projet de photo documentaire que j'ai démarré en janvier 2023. Dès le début, je l'ai pensé comme un projet à long terme. Il faut du temps et de l'énergie pour aller au-delà de gratter la surface, revenir encore et encore vers les participants et essayer de capturer un autre morceau de cet incroyable caléidoscope qu'est leur vie, qui est n'importe quelle autre vie en fait.

Avec la publication du livre photo et l’exposition organisée en novembre 2023, c’était comme si un cap avait été franchi. C'était comme si quelque chose se terminait et que, quoi qu'il arrive ensuite, cela ne pourrait pas être exactement comme avant.

Pour moi, de nouvelles idées de projets photo commencent à se développer bien avant que j’agisse. J'ai rêvé d'Autisme Stories au moins un an avant de le commencer. Un nouveau rêve est parfois apparu l'année dernière : un projet sur le vieillissement et la manière dont les gens y font face. J'en ai rêvé pendant un moment et c'était relativement tard dans l'année quand, en discutant avec un ami, j'ai réalisé que j'aimerais vraiment le relier à mes travaux antérieurs sur l'autisme. Et que j'aimerais cette fois me concentrer sur les adultes autistes.

Changement d’orientation : l’autisme et l’âge adulte

Le peu d’informations sur l’autisme disponibles dans les médias (y compris les réseaux sociaux) concernent presque exclusivement les enfants. Il y a bien sûr de nombreuses bonnes raisons à cela. Mais c’est presque comme si ces enfants autistes ne grandissaient jamais. À mesure qu’ils approchent de l’âge adulte, ils commencent à disparaître dans le brouillard de l’indifférence. Ils vivent leur vie tranquillement, avec des différents dégrées d’autonomie.

Certains d’entre eux passent la majeure partie de leur temps dans des établissements résidentiels. D'autres vivent avec leurs parents. Certains ont des petits boulots tandis que d’autres ont un emploi stable, mais généralement avec quelques aménagements pour le rendre plus adapté à l’autisme. Certains ont des relations. Certains ont des enfants.

Qu'arrive-t-il à ces personnes ? Comment nouent-ils et entretiennent-ils des relations ? Comment assument-ils les rôles sociaux d’amis, de partenaires amoureux, de collègues, de parents ? Avec quoi luttent-ils ? C’est toute une partie de l’humanité qui reste quasiment invisible. Et cela a des implications sur la façon dont le reste de l’humanité traite les adultes autistes, sur les ressources allouées pour leur faciliter la vie et sur la facilité avec laquelle il leur est de participer à la vie sociale et de trouver un emploi.

C’est le sujet de la deuxième phase d’Autism Stories.