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: A New Chapter

Big Fish, Small Fish

I talk on the phone with Giuliano from time to time. He is 39. He spends his time between the residential center and his parents’ home, where he comes for the weekend. He is into electronics and tech stuff, especially cameras and speakers. He likes big fish. He likes to take long walks and ask strangers to take pictures with him. He wears pyjamas that are a couple of sizes smaller.

Giuliano with his beloved photos of big fish

When one of his acquaintances died a few months ago, Giuliano struggled with anxiety and depression. He was unconsoled. Almost grieving. He told me that he was thinking about the deaths of other people in his life. He couldn’t find peace.

I told him that it will get better. That it’s normal to feel like this.

Telling him this feels at the same time necessary and pointless. I want to help him but I know that telling people it will get better is not going to make them feel better. However, having someone to talk to, someone who listens and cares, can make them feel better.

In a message sent to me not so long after, he includes a couple of fish emojis. I smile. I know that this was a sign of friendship and closeness for him. When I first met him and sat together with his mom to discuss, he showed me his photos of hammerhead sharks, tuna, and other big fish. He said how much he loved them and a bit later he added that that his mom is a big fish and he is a small fish, swimming around her.

Dreaming Up a Project

Giuliano is part of a documentary photo project that I started in January 2023. From the start, I thought of it as a long-term endeavor. It takes time and energy to go beyond scratching the surface, to go back again and again to the participants and try to capture another piece of this amazing caleidoscope that is their life, any life really.

With the photobook published and the exhibition organized in November 2023, it felt as if a milestone had been reached. It felt like something is closing and that, whatever may happen next, it cannot be exactly as before.

For me, new ideas of photo projects start developing long before I take action. I dreamt about Autism Stories at least one year before starting it. A new dream emerged sometimes last year: a project on aging and how people cope with it. I dreamt on it for a while and it was relatively late in the year when, talking to a friend, I realized that I would really like to connect it to my previous work on autism. And that I would like to focus this time on autistic adults.

Shifting Focus: Autism and Adulthood

The little information on autism that is available in the media (including social media) refers almost exclusively to children. There are many good reasons for that, of course. But it is almost as if these kids with autism never grow up. As they approach adulthood, they start disappearing into the fog of indifference. They live their lives quietly, with varying degrees of autonomy.

Some of them spend most of their time in residential facilities. Some others live with their parents. Some have odd jobs while others have a stable employment, although generally with some adjustments to make it more autism-friendly. Some have relationships. Some have kids.

What happens to these people? How do they form and maintain relationships? How do they take on the social roles of friends, romantic partners, colleagues,, parents? What do they struggle with? It’s a whole part of humanity that remains almost invisible. And this has implications on how the rest of humanity treats adults with autism, what resources are allocated to make their life easier, and how easy it is for them to participate in social life and get a job.

This is what the second phase of Autism Stories is about.