Past and future exhibitions

It’s been a while since I published here but it doesn’t mean that I haven’t been working on the photo project. I continued to organize visits, meet autistic people, take photos, and record conversations. I even started recording some video.

While I am working on the second phase of the Autism Stories project, which focuses on adults, the photos of the first phase continue their journey.

On 11-12 October, Autism Stories was present at Cité des Sciences in Paris at the Rencontres Internationales de l’Autisme. I joined the GAMP team who was present with a stand and who supported the project all along.

Next, the photo project goes back to Belgium. This time, it’s not Brussels but the Walloon Brabant, the region located in the center of the country, just south of the capital city. Autism Stories will be present at the Centre du Patrimoine et de la Ruralité in Incourt on 9-10 November.

The first exhibition dedicated to the second phase of the project will take place in spring 2025. I feel like there’s so much left to do, such a huge way to go. But I know things start coming together once I have enough material and I start doing the most difficult part of the work: putting these different pieces together so they form a meaningful puzzle.

Autism Stories: Some Reflections on Going Forward

For the past year and a half, I’ve been involved in a photo project on autism. It’s my longest and most demanding project so far. It’s also the most rewarding. I try to make sense of the myriad facets of autism and to understand how it contributes to our shared humanity. I try to better understand my son. In the process, I get to question myself over and over again.

Alysa proudly shows one of her paintings (Brussels, 2024)

Looking back

I hope that I manage to portray my subjects fairly. I hope they feel represented in a way that is non-reductive and non-judgmental. But I know how blind we all are towards our own biases. They will end up showing in one form or another. I can just try to stay open and work with myself while I’m working with my subjects.

I am not under any illusion of grandeur regarding Autism Stories. It is a modest, somewhat amateurish project in which I had the chance of meeting beautiful, supportive participants. I also had support from GAMP, a citizen-based association that fights for the rights of people with disability to have access to appropriate accommodation and support services.

I feel strangely detached from what happens now with the photos. These are the photos that I took in this or that context, which I remember so well. The stories that I listened to. The people that I visited over and over again. All this still feels very personal. But the succession of exhibitions and all the messages received sometimes feel as if they refer to something else, done by somebody else.

It’s not easy connecting the lived experience of being part of this photo project with the public experience of watching its results from the outside. They feel as being part of different worlds, connected but clearly distinct. It’s as if the project has grown up and, to some degree, taken a life of its own.

Going forward

It’s interesting to see how things can take on a life of their own. The photos and life stories that are part of my project on autism continue their journey through Belgium. In October 2024, they will also make it to Paris.

There must be something there that resonates with people. Not so much my photographic skill but rather the sheer fact that the shrowd of invisibility and indiference surrounding these persons with autism is lifted, if only for a moment. People are exposed to the reality of life with autism in a way that does not attempt to sugarcoat or overdramatize.

After two exhibitions in 2023 and another one in the spring of 2024, the photo project prepares its next steps: an exhibition in Paris on 11-12 October 2024 and another one in Brussels, on 3-8 December, to mark the International Day of Persons with Disabilities.

Working with autistic adults

While preparing for these exhibitions, I also continue to work with new participants. This year, I focus on autistic adults. I work with autistic single moms with kids who are also autistic and with young adults trying to find their way into a pretty unforvigiving world. I work with people with different levels of support needs. Some of them are living on their own. Others are living with their parents or in residential care. Some are extremely articulate while others have a limited capacity to communicate verbally or in writing.

Will I be able to be a good advocate for them? To create something to which they can relate and feel close to? To show something that will strike a chord in people that may or may not have any connection with autism? Time will tell.

Meanwhile, I will continue doing what is under my control. I will continue to document on this site the development of the project and I will gradually add the stories of all the people I am working with.

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.

Access

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

Why a photo project on autism?

This project was born out of my own need to make sense of my son’s autism and the role it plays in his life and in my own life.

I wanted to better understand because I wanted to be a better parent for him but also for myself. We’re all children and we’re all trying to grow our healthy adult so that it can care of that child.

I also wanted to make the world of autism more visible for the wider world. To go beyond the quirkiness, the stereotypes, and the prejudices. To show what it’s like to live with autism for those who have the condition, but also for the family, friends and anybody else directly related to them.

In order to do that, the project tries to paint a picture of their life context and of the broader social context. What does their autism mean in terms of daily tasks, parenting, autonomy, relationships, or work? What are the coping mechanisms they develop? How is the interaction between people with autism and their non-autistic peers? How do the carers of autistic kids organize their life, build support systems for their children, and manage psychologically?

The project is not meant to focus on the difficulty of the subject’s situation, but rather give a sense of intimate connection. The idea is not to transform them into heroes, into victims, to emphasize their disability or, on the contrary, their potential hyper-abilities. 

The work tries to create a bond with the viewer/reader by presenting the subjects’ day-to-day experiences and struggles. It aims to shed light on the shared vulnerability and humanity of autistic and non-autistic subjects, behind the real or perceived difference.