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.

One Year Into My Photo Project: What I’ve Learnt

It’s the last day of the year. I want to take a moment to make sense of what happened with my photo project.

I started my Autism Stories project in January 2023. My first visit to my first participant was on the 21st. I am writing this post almost one year later.

My photo project explores the lives of people with autism and of those around them: family, friends, therapists. It looks at the relations between the persons with autism, those supporting them, and society at large.

So far I have worked with 12 families that have a child or adult with autism. I must have done between 35 and 40 visits, following my participants not only at home but also outside, when they are visiting place and doing things that mean something for them.

The photography I did previously was largely devoid of people. I used to photograph wilderness and deserted urban environments. The project was my first experience in putting people front and center. Getting close to them. Listening to their stories. Being a witness.

Any such project is also a learning experience – and probably it is a learning experience before anything else. These are some of the things I learned along the way.


Taking portraits of kids and adolescents with a neurodevelopmental disability is not something you do by simply asking people on the street or showing up on online forums. These are not photos that you can snap as you pass by. The subjects or their legal guardians need to know and to consent. There needs to be more than one meeting with each subject. There needs to be trust.

But before even consenting or trusting, how do you reach the right people?

In my case, this was done largely through GAMP, a Belgian association for the defense of the rights of people with disabilities. I reached out to them with the project idea, and they were kind enough to promote it and facilitate contacts with families who had children or adolescents with autism.

Getting access and maintaining access to real people with real problems, who do not owe me anything and have more than a lot on their plates, is no easy matter. Understandably, they wanted to know first what the project was about and how they would be involved. They needed to establish some trust in me and the project.

The fact that I am also the parent of a kid with autism might have helped. There is a sense of solidarity and commonality of condition between parents fighting similar battles. But the essential element in establishing trust was discussing directly with participant and explaining what this project meant, why I wanted to do it, but also why they may be interested to take part.

Once access is granted, it needs to be maintained. These are not people coming to have their portraits taken. These are people who decide to share their intimacy and their vulnerability.

You may arrive for a photo visit and discover that the person with autism does not want any photos taken of them. Even if they are non-verbal, they could make it clear that they are feeling uncomfortable and just want to be left alone. It’s frustrating to have made all that way and not be able to photograph, but there’s no projet worth causing additional stress to somebody who is already in a vulnerable position.

The visit can sometimes be used to go deeper into the discussion with the family. There can never be too much context and detail. The photos will only reveal themselves and tell a genuine story if they are placed in the life context of the participant.

Showing up

In any long-term project, things are bound to hit a wall from time to time. You send emails that are never answered. You propose photo visits that are canceled and rescheduled again and again. You question yourself and the way the project should be developed.

Sometimes it feels like all the material you gathered so far is crap and you have nothing to build on. Sometimes you simply don’t feel up to the task. Sometimes you’re too tired and simply need some time for yourself.

It’s easy to give in to this voice of overwhelm and discouragement. But showing up, simply showing up with no rigid expectations, is also easier than it may seem. To show up for the next visit, to show up for editing the photos, to show up for working on the texts and listening to the recordings with the participants. Once the extra pressure we put on ourselves and the expectations of performing at a high enough level are gone, what is left is a more serene way of going through the moves and getting things done.

And sometimes this is all that is needed, to get things done irrespective of how well they turn out.

Personal involvement

Personal photo projects tend to become even more personal as they develop. People open up. You are witnessing suffering and vulnerability. Life unfolds. As you meet the same subjects again and again, you find yourself thinking about them. Thinking about how it is to be them. You’re no longer a detached witness.

But getting too close to the subjects can end up undermining the project. Taking on other people’s vulnerability may become too much. I needed to maintain a certain degree of detachment in order to keep going. I needed to witness with empathy but without fusing with the witnessed situation. I needed to remain aware of my role to reflect life situations honestly but without identifying with my subject’s perspective.

I also struggled with another issue. With time, I came to know quite a lot about the lives of my participants. I often wondered if I would manage to do justice to them when telling these stories. If I was the right person to tell these stories.

I also asked myself if my work would not be seen as a way of trying to speak on behalf of them – something I wanted to avoid at all costs.

While these doubts are still there, in the background, what helped me move forward is reminding myself why I started this and what my intentions were. I may not be the most suitable person to tell these stories in absolute terms. But would it be better if my attempt to tell them, as modest as it may be, didn’t exist at all? Let’s not forget that we are not dealing with a popular topic with lots of public exposure.

I am prone to self-doubt and I usually judge myself harshly. But it can be liberating to realize that some stories do not have too many storytellers ready to step in. You may take the challenge and step in, accepting the limitations and imperfection of what you can do. Or the story may simply remain untold.

And there are so many stories worth telling out there.

Photo Exhibitions

Up to now, 11 families with kids, adolescents, or adults with autism have taken part. I will gradually publish the photos and stories of these families on this site.

Meanwhile, the photo project is making its first steps into the world.

On the 28th of March there will be two events featuring photos from Autism Stories in the context of the upcoming World Autism Awareness Day 2023 on 2 April.

The first one is a photo exhibition opening event organized by Autism Europe in cooperation with the European Parliament. The exhibition will display twenty-five pictures by ten photographers from different European countries. It will last from 27 to 31 March 2023.

Place: European Parliament in Brussels (Balcony, Area ASP, 5 G)
Date and time: 28 March 2023, 11 – 12 AM

The second one is a small exhibition dedicated to Autism Stories. It is organized with the support of GAMP, a Belgian association that is extremely active in promoting the rights of persons living with a handicap, and Saint-Louis University in Brussels. The exhibition will be open from 27 March to 7 April.

On 28 March there will be an opening event at University Saint-Louis.

Place : The “Lobby”, 1st floor of the Ommegang building of University Saint-Louis, rue de l’Ommegang 6, 1000 Bruxelles
Date and time : 28 March 2023, 6 – 7 PM