Can you tell us how this project was born?
Martine Asselin – We met because our two children attended the same school. Annick had written a piece about the inclusion of her child, and my son was about to enter her son’s school. I contacted her because I wanted to know how her child’s daily life was going, as he was the first autistic child to be integrated into that school. We met in a cafe, and immediately started brainstorming projects together. We thought it would be fun to do something that would make people see our children as individuals with their strengths and characteristics while adding a strong inclusive dimension. Then we wondered what form we wanted to give to this project. We initially thought of a linear documentary, but quite quickly, we started thinking about something more immersive.
Annick Daigneault – Martine, coming from cinema and media arts, and myself from performance, theater, and events, I was very much into the experiential. As our discussions progressed, our main goal became to “experience autism from the inside”, and virtual reality seemed to us to be the best medium to achieve that.
You mentioned that ultimately, virtual reality as a medium has been a way for you to convey and express something important. Why did VR appear to you as the most relevant medium?
Martine Asselin – When it comes to autism, there’s constant talk of a bubble, which somewhat disconnects from the rest. So we quickly realized that VR was entirely coherent for a subject like this because, in a way, you disconnect from one reality to embrace another that is completely different. You immerse yourself in something. We used the metaphor of the bubble, even though we find it somewhat reductive. But at the same time, we thought, let’s use this image that everyone already has and transform it into something positive.
“Essentially, we break down the boundaries between distinct universes by using virtual reality.”
Annick Daigneault
Martine Asselin – And we create spaces that don’t have to be tangible. Because at a certain point in the piece, you enter a space that belongs to “Lou”, which is his imagination, his pleasure in manipulating certain objects. At that moment, when he manipulates the object in question, the rest of the world fades away. In virtual reality, you can move from one level of narrative in an inner space to another reality. People participate; it’s interactive. The viewers must understand how and why “Lou” reacts this way, what he feels, and they have to do the same. Embracing a behavior that may seem strange to us at first, it demystifies it, and we do it in a somewhat playful mode. But we clearly understand the emotional weight of the character when, as a viewer, we have to perform an autistic gesture to calm ourselves, to regain our place in space, to manage information. It’s not something we would do in normal circumstances, but we do it.
Annick Daigneault – To conclude on the relevance, I don’t remember the exact percentages, but they say we retain 10% of what we hear, 30% of what we read, and 80% of what we experience. Using VR to make people experience a reality distinct from their own or behaviors they initially judge allows us to ensure that people remember more of what they’ve learned. Even if the work is as poetic as it is educational.
To what extent did you involve autistic individuals, whether it be your children, people close to you or less close, in the construction process?
Annick Daigneault – It was important to us that the project be radically inclusive at every stage. As we had the privilege (that was quite a challenge, too) of working on this project for many years and received funding for research, we also created parallel projects with autistic adults, where we co-created VR works that told their perceptions, stories, vulnerabilities, and specific interests in various virtual spaces. It was incredibly enriching for us. We are aware that what we offer in the piece, compared to what we received from autistic individuals, is minimal. The generosity of their feedback is rich, and it was a privilege to learn from them.
Martine Asselin – We also had a collaborator in the scriptwriting, Louis François, who co-wrote with us and was very involved. And, of course, we are mothers, so we observed our children and were inspired by their realities. It’s a mix of certain characteristics of my son, Annick’s son, and many other people outside of this project whom we had already encountered. They were our first audience. They actively contributed. They tried prototypes, they participated, and they were present the whole way, in the front row. This project also brought us closer to our children.
It was our empathetic approach towards our children, to better understand how they function, to try to put ourselves in their shoes and imagine what it might be like in their minds.
Martine Asselin
Martine Asselin – There are several characteristics specific to autism, and we selected those that suited this medium best.
Have you received different feedback from the audience when presenting the virtual reality experience? To what extent do you cater to very young, young, and older audiences?
Annick Daigneault – We have been to various places such as festivals, conferences, and schools, almost always accompanied by an autistic individual. The reactions from the audience, ranging from ten years old to 99 years old, have been extremely positive. It touches and engages everyone. Some may experience it with varying levels of intensity, but so far, it doesn’t leave anyone indifferent. Autism is a global subject. We are truly grateful for the contact with the audience. However, we do not target very young children. We tested it on young children, and it was too conceptual. So our target audience is from ten to one hundred and ninety-nine years old.
Martine Asselin – There are people who do not know any autistic individuals and come because they are curious. They come out moved and with a better understanding. People who have a connection to an autistic person are deeply moved and grateful to have experienced and seen a glimpse of what it could be like from the inside.
We made the choice to base our work on the testimonials of autistic individuals rather than professionals or scientists.
Martine Asselin
Annick Daigneault – To give an example of a reaction we had in a secondary school, there was a young girl participating in the workshop who said, before experiencing it, “Autistic people are all crazy!” I welcomed her thought without judgment, and we dissected it together. I felt it wasn’t just provocation, and we could start with a response that was uncomfortable, as long as it was genuine. Nick, who was with me and is autistic, remained very calm. We discussed, did activities, she experienced the VR, and at the end of it all, we gathered as a group again, and I asked her, “What has changed for you? What did you understand after the activity?” She said, “I understand that they’re not crazy. There are behaviors I didn’t understand, but now I know why they make gestures that I found strange. I don’t want to say they’re crazy anymore.” In just an hour of activities, the perception of this fourteen-year-old girl had completely changed.
Martine Asselin – There are also autistic individuals who had never disclosed their autism and came out after experiencing it. They had fewer fears about revealing themselves. When we presented “Lou” at our sons’ school, other students asked our children questions. There was a dialogue forming. After that, other students started talking to us about their own differences, which weren’t necessarily related to autism. Everyone started to think about the fact that we are all different, even though it’s obvious. It really creates openness and empathy toward a situation, a reality that we don’t know. Some autistic individuals also tried it. Some found it difficult because it put them through emotional overload. Some came out of the headset because it was too much for them. But there were others who completed it and gave us feedback like, “It represents me well, and what I like is that it represents me as a human being and not as a tragedy, not as a fatality, not as someone who can’t function in society. It’s just an image of what we experience.”
Annick Daigneault – When we were at South by Southwest, there was a young autistic man who, after experiencing our work, said, “I’m deeply touched. I’m overwhelmed.” He told us he is autistic and added, “This is the most compassionate work on autism that I have seen or experienced.” He felt all the love that is in the work we created. He saw that this work doesn’t start from a fatalistic perspective of parents in the drama of autism or the injustice of the world. We are more about tenderness. Of course, not everything is beautiful and magical. There are challenges. We make efforts. Everyone does! We need to meet in the middle and also show flexibility!
In total, it took eight years to fund your project. How were you able to finance it?
Martine Asselin – We won our first prize in Canada in late 2015 for the pitch we made of our project, and that allowed us to present it in France, at Sunny Side of the Doc. We won another award there, the “Best Digital Creation Project.” We then thought, “This is it, we’ll be able to produce this when we return to Quebec!” But in 2016, the funds for this kind of project didn’t really exist. We didn’t check all the necessary boxes. So it became a lesson in perseverance, continuing to move forward with parallel projects to continue our research, to keep exploring what we wanted to highlight in terms of interactivity in our work. We went through iterations, created prototypes, worked on other virtual reality projects, and found parallel funding sources to keep progressing. But we always had in mind to fully fund what we really wanted to do, which was “Lou.” Starting in 2019, new funds became available, and we managed to get the project off the ground. In “Les pieds en haut: Lou,” there’s a segment about childhood, and then one about adolescence. The childhood segment was financed through artist grants because both of us are artists in digital, media, or installation arts. The second chapter was produced by our long-time partners, Unlimited VR, which allowed us to tap into funding dedicated to the cultural industry. We also ran a crowdfunding campaign.
Annick Daigneault – I would add that we shouldn’t underestimate the amount of love that everyone invested in this project. Yes, it’s Sébastien’s company, but he believed in this project, and then there were several partners, like the DPT team. They believed in it and came on board, and everyone put in their own love money. Everyone was underpaid, let’s be honest. Nobody is making money with this project.
Are you thinking about a sequel? Another chapter?
Martine Asselin – Yes. In fact, it’s a trilogy – childhood, adolescence, and adulthood. We’ve created childhood and adolescence with the same character, Lou, but in two different chapters. It makes it a more flexible experience that can be partial in the sense that not everyone has half an hour to dedicate to this work. So, we have two distinct 15-minute chapters that are interconnected but can be experienced individually, independently of each other. You can choose to be an autistic child or an autistic teenager. You’ll experience two complementary yet different things, but you’ll still have an experience of this distinct neurological reality.
Annick Daigneault – Right now, we are in the process of writing the chapter on adulthood. This chapter will feature a different character, another autistic individual with its own characteristics, all designed to offer an immersive experience of autism in virtual reality. We’re also looking to explore beyond the familiar stereotypes of the white, heteronormative man, not only to reflect the current reality but because there’s a significant portion of the autistic population that identifies to the LGBT+ community and is otherwise underrepresented. For them, the concept of gender can sometimes be less rigid than it is for neurotypical individuals.