Guest post by computer scientist Gerardo Herrera, who is chairing the scientific committee of the International Conference on Innovative Technologies for People with Autism Spectrum Disorders, organized by Autism Speaks, the Pasteur Institute, the Orange Foundation and Adapta Foundation, and taking place in Paris this coming October. Dr. Herrera pursues research in the Autism Lab of the Robotics Institute of the University of Valencia, Spain. He is shown here with his sister Chusi.
When you have a sister with autism, when you have grown up with her, you can see life from another perspective. Individuals like my sister Chusi, they perceive and process the world in a different way. And so, they also think differently. Their world, although shared with us, is also very different.
Chusi is now 36 years old, and her life is so much better than when she was a child. Her hobbies include music and cartoon films. In her leisure time, she goes to the swimming pool and rides horses. She also loves spending time with her family.
We frequently hear that people with autism have difficulty recognizing other people’s emotions. However, when my sister is with other people, I can see how she is immediately flooded by their emotions. She is absolutely permeable, for better or worse.
Sometimes, when we pass by a total stranger who is angry, she gets angry as well. On the positive side, when I want to motivate her to learn something important, I’ve learned to do so with happiness. Then she is also happy, and this makes the task so much easier.
I think Chusi has difficulty sensing the boundary between her mind and that of the rest of us. Without that sense of boundary, it’s as if we are part of her. So we have to regulate ourselves very much. When we show ourselves happy or sad in front of her, this affects her directly.
It’s difficult for anyone to put themselves in her shoes. I don’t think I’ll ever be able to do so, although this would be my dream come true.
Still, if you have grown up with someone with autism, then you have a special gift to have a glimpse into their world. It’s a world with little of the complex social strata of deductions, patterns of conduct and social prejudices that influence behavior in the rest of us.
Having a sister with autism has changed my life in many ways. After high school, I decided to study computer science because I was convinced that computer graphics would be very good for my sister, who is so visual.
That was long ago, when the IT boom was yet to come and autism was a great unknown.
My sister Chusi also helped me to learn to appreciate very different perspectives from my own. This was vital for my becoming an integrated part of a multidisciplinary team at the University of Valencia where psychologists, educators, graphic designers and computer science engineers work together. We must all share our different knowledge and insights.
I realize I developed a sense of responsibility and a joy for teamwork through the way my family organized to provide support for my sister. This is also something very useful at our Autism Lab within the Robotics Institute at the University of Valencia.
One of our recent developments has been the Azahar project (available in English, French and Spanish for iOS, Android and Windows Systems). It’s an app for leisure and communication that is very useful for those with autism and severe learning difficulties. (Downloadable from iTunes here.)
My sister uses the app’s pictogram-based music player and also the video player. She loves music and has very good ear and memory for it. Many of our family’s presents to her involve tickets for musical theater and concerts: Queen, Abba, The Lion King, Sister Act…
A love for music is a very common among those with autism. My friend Theo Peeters from Belgium says that most people with autism love listening to music because it’s a kind of information that directly touches the brain. It doesn’t need to be “decoded.” So it's easily digested information for people on the autism spectrum.
Azahar App allows people with autism to select their favorite music and to do so independently. But Azahar is more than this. It also provides a visual communicator and visual timers. For the latter we have recently published a pilot study showing positive results for reducing anxiety-related behaviors in adults with autism.
Of course, we are not alone in developing technologies for people with autism.
In October, we will celebrate in Paris at the 2nd International Conference on Innovative Technologies for People with Autism Spectrum Disorders, October 3 and 4. As researchers and developers, we will present more than 70 projects from teams all over the world.
I want to extend a special thanks to the Autism Speaks community for generously supporting this conference. And at the same time, let me extend our sincere invitation to join us! Participation is open to all people with autism, their families, professionals and researchers. You are all welcome! Learn more here.