Feeling happy or recognizing the objects and people around us seems like a simple, natural process. However, for certain reasons, brain disorders can make even the most everyday things impossible. Imagine one day losing the ability to recognize your loved ones, or starting to experience hallucinations in which human faces turn into dragons. In his book The man who mistook his wife for a hat), neurologist Oliver Sacks describes patient stories that show how some people struggle with the brain's strangest pathways. This is the case of a surgeon confronted with incessant tics that stop in the operating room, or twins diagnosed as retarded but gifted with mathematical talents. Mental illnesses are complex and encompass an incredible diversity of disorders. They include changes in thoughts, emotions, behaviour and relationships with others. There are many types of mental illness, from common disorders that affect millions of people, such as depression and anxiety, to rare afflictions like Tourette's syndrome, which causes a person to make involuntary sounds and movements. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is the reference manual used by professionals. It classifies common mental illnesses into broad groups, the main ones being anxiety disorders, mood disorders, eating disorders, personality disorders and psychotic disorders such as schizophrenia. It also includes childhood disorders such as autism spectrum disorders or attention deficit/hyperactivity disorder. According to the World Health Organization (WHO), one in four people worldwide will be affected by mental or neurological disorders at some point in their lives. Episodes of mental illness can come and go over the course of a lifetime. Some people will experience only one episode of illness, while others will live with the problem all their lives. Treatments are available, but they vary from person to person, as there are many causes, symptoms and degrees of severity for each type of mental illness. There are different ways of helping a patient recover, such as psychological therapy, medication, peer support and alternative therapies.
Autism spectrum disorders
People with autism see, hear and feel the world differently from other people. Autism Spectrum Disorders (ASD) range from mild to severe. Some people with ASD are able to lead independent lives, while others need help with the basic activities of daily living. While people with autism are very different from one another, they all share two types of unusual behavior: "out-of-character" and "out-of-character". difficulties with communication and social interaction, and restricted or repetitive behaviours. People with autism may not understand body language or facial expressions like most people. Some don't speak, but communicate through gestures. They may develop an excessive interest in something like numbers, for example. They may follow inflexible rituals or be hypersensitive to certain sounds... Autism may also be associated with particular cognitive abilities or talents, such as an exceptional memory for details or mathematical abilities. Such is the case of Daniel Tammet, author of Born on a blue day and considered a genius with numbers. In his book, he describes how numbers were his first languageIt's sometimes difficult for me to understand emotions or know how to react to them, so I often use numbers to help me. If a friend tells me they're feeling sad or depressed, I imagine myself sitting next to them in the dark hollow of the number 6 to help me feel the same kind of feeling and understand it.“. Here are just a few examples, but the form or expression of autism differs depending on the situation. People with autism are never the same. Until recently, experts described different types of autism, including autistic disorder, Asperger's syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS). These are now considered as a single disorder with a spectrum of symptoms and behaviours of varying severity. At present, there is no cure for autism spectrum disorders. However, therapies and interventions can maximize a child's ability to function by reducing symptoms and promoting development and learning. Early interventions during the preschool years can help patients acquire social communication and behavioral skills.
Enabling people to collect and share mental health data
It's been five years since Anirudh Krishnakumar completed his master's degree, and he's now “on the road to success".“quietly slipped into the world of mentally disturbed children“. Now a doctoral researcher at CRI and Child Mind Institute, his dream is to create an ecosystem that brings together students and the many players involved in mental health. What stimulates him is the potential of citizen science initiatives and digital technologies. Visit Matterlab of New York, the young researcher is working on Mindlogger, a mobile application that makes it easy for anyone to collect data. With Mindlogger, anyone can build their own application to answer simple questions such as “What's in it for me?“how are you today?”or “what fruit did you eat?”for example. This makes it possible to create a wide range of activities such as surveys, quizzes, digital diaries or cognitive tasks, and the application offers multiple response options. Users can respond to a question not only with text, but also with sound, photo or video, etc...“The beauty of Mindlogger is that it lets you create your own smartphone application without knowing how to program or design.. For example, I imagine a daily digital diary for parents of an autistic child. Not only can they keep track of their child's behavior and symptoms, but they can also add their ideas, views and what they find difficult on a daily basis. Here's an example of a test we're currently running in New York for many parents: every morning and evening, they answer questions about the child's sleep, diet, energy levels, stress, mood, etc...” In addition to being completely free of charge, the app has another advantage: it is designed specifically to handle sensitive health information, with a focus on data security and privacy. Doctors can monitor patients“ behavior at home, eliminating the need to go to the hospital to fill out a form. The app also improves consistency, as Anirudh Krishnakumar explains: "If I ask you how you're doing and it turns out you have a headache, that doesn't mean you have a headache every day. With an app, you can see what happens in three days rather than once in three months.“. The team is creating a library in which it places open questionnaires on mental health, so that several stakeholders, such as researchers, doctors, patients or families, can choose an existing questionnaire. But anyone can create their own questionnaire. ” I've given the example of autism, but The beauty of Mindlogger is that it can be used in any field. People can easily take pictures of birds, for example, and develop a citizen science application from them. More importantly, we don't want people to just provide data, we want to make it easy for them to visualize, analyze and share their own data“.
In line with this idea, the doctoral researcher is working on an open, participatory database that maps mental health. “Today, if you want to research autism, you get so many apps and websites... It's a real mess. It's a real mess.” He gives the opposite example of an online book sales platform. “If you want to buy a book, you can see that the books are sorted by size, price and author. You can also see whether it's romance or fiction. It's very structured and organized, so it's easy for people to find. Unfortunately, nothing like this exists in the field of mental health”.” This is why he is currently developing the largest mental health database, matching signs, symptoms and behaviours with various projects, community initiatives and technologies. It could be used by a parent interested in a particular symptom of autism, wonderingWhat research projects are currently underway on this symptom? Is there a book? In this database, people can not only identify current projects, but also add their ideas and experiences, or review projects. All stakeholders will be invited to enrich and update the database. “as in Wikipedia“.
Inspired by his personal story, Anirudh Krishnakumar has also developed an educational program with students in his native Chennai, India. Many other CRI people from different countries have launched awareness programs. In their spare time, they teach various skills, such as scientific research or video production, to students living all over the world. For Anirudh Krishnakumar, it's very important to share the approaches he's learned with local communities. He sees the students as “tangible agents of change, who contribute to the learning and communities of other students while learning themselves”.
