Monday 23 August 2021
Autism is a critical mirror for society
Wilma: 'Jelle, I want to know everything about your project Design Your Life! I read that you want to give young people with autism more control over their lives, through technology and co-creation…'
Jelle: ‘Haha, a real mouthful, eh? It all started with a project with an autistic young man I did after my PhD. He knew quite well what he wanted to do, from housekeeping to relaxing. However, he often failed to do so, which is also a feature of autism. Together with him and a group of students, we came up with something that would help him in everyday life. We devised a lamp system with an app in which he programmed his plans. For example: do the dishes tomorrow morning at eleven o'clock. The next day, at eleven o'clock, a lamp went on in the kitchen, in a colour he thought fit the task. It gave him a sense of control over his own life. After that project I realised: I want to do a lot more of this.’
Wilma: 'And in the meantime that has grown into your own research project with two PhD students and a few students. Together with clients, you create tailor-made technological solutions for everyday life. What are you most proud of?’
Jelle: 'It may be a crazy form of pride, but recently I met an autistic entrepreneur who was about thirty. He said that he had developed an app with QR codes that the user can place in different places in the house. In the app you program plans with a time and date. When it’s time to execute a planned task, your mobile phone rings and you have to scan the QR code associated with that task. For example, for the laundry you have to go to the QR code in the bathroom. The fact that an autistic entrepreneur had developed and marketed this product himself was a nice confirmation of the similar concept we had developed. And I am very proud when I listen to my PhD students and students discuss their experiences and dilemmas.'
Wilma: 'I see that it really moves you! What inspired you to work with young people with autism?’
Jelle: 'For me, autism mirrors society. We have a lot of social norms regarding how to behave in everyday life. That made me rebel at a young age. Why should we always do things the same way? That’s nonsense. Diversity makes the world beautiful. Yet these social norms also creep into healthcare and assistive technology. For example, you have robots that train children to improve eye contact with other people, something autistic people generally don't like to do. The technology is aimed at making autistic children less “autistic”. I want to swim against the current. I think we should involve people in designing the world they live in. Not everyone is given the same opportunity to shape the world in a way that is comfortable for them.’
Wilma: 'The fact that young people in your project can themselves help shape their own lives strikes me as a meaningful experience.'
Jelle: ‘It's good that you point that out. When we started, we wanted to design products that fit the person we worked with. But we soon found out that there is an important added value in the process itself. That might be the biggest gain: someone’s feeling of being in control. Just the fact that you are inventing something for yourself really boosts your self-esteem.'
Wilma: 'And you do it together. That must be a valuable experience for both parties. Sometimes I also do projects with people with a type of autism. It taught me that they are no different, but at most have certain characteristics in a slightly amplified form.'
Jelle: ‘Anyone can suffer from sensory overload. But I've also learned that autistic people are much more prone to this. All stimuli hit them, all the time. When I meet an autistic person for our project, it can cost them a lot of energy. That person may then spend half the day recharging their batteries by keeping curtains closed and has to make that choice consciously. While I just have another conversation with someone else the next day. I have noticed that you can also quickly ask too much from people.'
Wilma: 'Based on my work for House of Integrity, I was wondering: what ethical dilemmas have you encountered in the project?'
Jelle: 'It’s full of ethical dilemmas! What I’m currently ruminating: the healthcare institutions that participate in our project will receive money and hours for this. They ask young people from their database if they want to participate together with their daily caregiver. Under the guidance of one of our students, they will design something as a duo. That's really cool. But what is the authority relationship between these people? We have already noticed that some young people participate simply because they are asked to. But then it’s not so much their own process anymore.’
Wilma: 'If you could change something about your own project tomorrow, what would it be?'
Jelle: 'I would like to make the voice of autistic people even stronger in the project. Everything we do is aimed at doing so, but our work continues to run through official healthcare channels because that's how the grant system works. I would like to make Design Your Life a network club with autistic people who help each other and tell us what to do.'
Jelle: ‘And there is something else I would like to champion, which is bigger than my own project. With Design Your Life we do not follow a rigid, preconceived procedure, but we are open to what arises during research. I’ve noticed that there is a lot of dogmatism in science. Everything tends to be preconceived in advance in a rigid research protocol. If that becomes the requirement, we would no longer be able to conduct our investigation. I want to argue that that freedom to discover remains possible – science is not a matter of simply following certain preconceived steps.'
Wilma: 'Indeed, the process must be allowed to run its course and curiosity is the driving force of researchers. We have to give them plenty of space to develop.’
In addition to technology, Jelle van Dijk also finds terminology important. He tries to use the 'Kenny terms' as much as possible. Kenny and his colleagues researched which words autistics themselves like to use and hear.