THIS ARTICLE IS MORE THAN FIVE YEARS OLD
This article is more than five years old. Autism research — and science in general — is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.
How do other people experience the world, and how can we know? This question has long captivated philosophers, and in the case of people with autism, that mystery is heightened by social and communication difficulties that prevent them from explaining their perceptions to the rest of us.
A Dutch project called het Hoofdkwartier, or ‘the Headquarter,’ is trying to answer that question. “We wanted to do something to make people aware of what it means, how it feels, to have autism,” says project coordinator Astrid van Dijk, director of research and development at the Dr. Leo Kannerhuis, an autism center in the Netherlands named for Leo Kanner, the psychiatrist and physician who first described autism in 1943.
The project consists of a multimedia installation inside an 11-foot-tall sculpture shaped like a head. The head is made of strips of metal formed into a cage-like structure, hinting at a lack of escape. Inside the head, which can be entered through one of the ears, visitors don headphones, isolating themselves from others both inside and outside the structure. Then they view a presentation of disjointed images presented on three screens, along with a mismatched soundtrack.
“Everything just goes too fast and not in a logical way, so what you see is all kinds of fragments, and in combination with the sounds it’s very difficult to get the point,” says van Dijk.
Most of the material in the presentation was created by people with autism. For example, project organizers asked several people with the disorder to each take 100 photos representing their world. So many photos from any group of people would be likely to result in a chaos of images, but still, these photos manage to say something specific about autism. One person contributed dozens of photos of a pet hamster eating a carrot, for example, illustrating the restricted interests characteristic of the disorder.
The staff also interviewed people with autism, asking questions such as, “What do you do when somebody asks you for comfort?” Then they asked a local theater troupe to film scenes based on the answers. A Dutch multimedia firm, HR Media, helped assemble all these elements into the final presentation.
“I visited the Headquarter in 2010, and I still recall feeling completely flabbergasted,” writes Ingrid Robeyns, professor of philosophy at Erasmus University in Rotterdam and the mother of a child with autism, in a blog post titled ‘Can a neurotypical understand what autism is?’ (If you doubt that autism goes to core philosophical questions, check out the comments on that post.) “Visiting the Headquarter was disturbing, but also directly useful, since it helped us in improving our parenting,” she adds.
A limitation of the project is that the material comes from people with relatively high-functioning autism. “They were the easiest group for us to talk with, and to really make a coproduction of this material,” van Dijk says.
Still, even the attempt to collaborate with people who have the disorder on a project that subtly blends science, documentary and artistic expression seems like a big achievement to me.
Over the past four and a half years, the project has been exhibited in more than 75 towns, mostly in the Netherlands, but with appearances in Belgium, Germany, Poland and Norway as well. More than 200,000 people have seen it in the Netherlands alone.
Unfortunately, however, the project’s future is uncertain, as the hefty head is expensive to transport, set up and maintain, and the Dr. Leo Kannerhuis center can no longer afford these costs. Van Dijk is looking for a permanent home for the project, or funding to help it continue to tour.
She and other staff at the center are also working on other, less unwieldy, projects to help convey the experience of having autism. For example, the B-box is a smaller installation, big enough for just one person to go inside, containing objects made by people with autism. In audio recordings, the makers explain the stories behind the objects.
In collaboration with students from a local high school, they are also developing ‘autism specs,’ a pair of glasses that distort the wearer’s vision to give a sense of the disorientation and overwhelming information experienced by many people with autism.
The Headquarter itself will be part of a special exhibition on the brain near the southern Dutch city of Eindhoven during July and August. “Right now the head is down in the basement here in the hospital,” van Dijk says. “It’s waiting for its next exhibition place.”