Feeling happy or recognizing the objects and people around us seems like a simple and natural process. However, it happens for some reasons that brain disorders make the most quotidian things impossible. Imagine that one day, you lose the ability to recognize your loved ones, or that you start having hallucinations where human faces transform into dragons. In his book The man who mistook his wife for a hat, the neurologist Oliver Sacks depicted patient’s stories which demonstrate how some people struggle with brain’s strangest pathways. Like a surgeon who faces incessant tics which stop in the operating room, or twins who have been diagnosed as retarded but are gifted by mathematical talents. Mental illness is complex and contain an incredible diversity of disorders. They include changes in thoughts, emotions, behaviours and relationships with others. There are many different kinds of mental illnesses, from common disorders which affect millions of people such as depression and anxiety, to rare afflictions like Tourette syndrome that causes a person to make involuntary sounds and movements. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is the reference handbook 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 disorder such as autism spectrum disorders or attention deficit/hyperactivity disorder. One in four people in the world will be affected by mental or neurological disorders at some point in their lives according to the World Health Organization (WHO). Episodes of mental illness can come and go during periods of people’s lives. Some people will experience just one episode of illness while others will live all their lives with this problem. Some treatments are available but they vary from person to person as there are many causes, symptoms and degrees of severity for each kind of mental illnesses. There are different ways in which a patient can promote recovery, such as psychological therapy, medication but also support of peers and alternative therapies.
Autism spectrum disorders
Autistic people see, hear and feel the world differently to other people. Autism Spectrum Disorder (ASD) is a trait along a continuum, going from mild to severe. Some people with ASD are able to live an independently living while others need support to perform basic activities of daily living. If individuals on the autism spectrum vary enormously from each other, they all share two unusual kinds of behaviours : difficulties with communication and social interactions, and restricted or repetitive behaviours. People with autism may not understand body language or facial expressions as most people do. Some of them may not speak, but communicate through gestures. They may develop an overwhelming interest in something such as numbers for example. They may follow inflexible rituals, or they may be hypersensitive to certain sounds… Autism can also be associated with cognitive skills or special talents, such as exceptional memory for details or mathematical ability. That is the case for Daniel Tammet, author of Born on a blue day and considered as a genius of numbers. In his book, he described how numbers are his first language : “Emotions can be hard for me to understand or know how to react to, so I often use numbers to help me. If a friend says they feel sad or depressed, I picture myself sitting next in the dark hollowness of number 6 to help me experience the same sort of feeling and understand it”. Here are some examples, but autism form or expression remain different 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). They are now considered as a unique disorder with a spectrum of symptoms and behaviors of varying severity. Currently, there is no cure for autism spectrum disorder. However, therapies and interventions can maximize child's ability to function by reducing the symptoms and supporting development and learning. Early interventions during the preschool years can help patients to learn social communication and behavioral skills.
Empowering people to collect and share data on mental health
It has been 5 years, since his master's degree, that Anirudh Krishnakumar has “quietly slid into the world of children with mental health disorders”. Now PhD researcher at CRI and Child Mind Institute, his dream is to create an ecosystem which gather students and multiple stakeholders concerned about mental health. What energizes him is the potential of citizen science initiatives and digital technologies. At Matterlab in New-York, the young researcher is working on Mindlogger, a mobile app that makes it easy for anyone to collect data. With Mindlogger, anyone can build his own app to answer simple questions like “how are you today?” or “what fruit did you eat?” for example. A wide range of activities can thus be created such as surveys, quizzes, digital diaries or cognitive tasks, and the app has multiple responses options. Users can answer to a question not only by text, but also by audio, by taking photo or video, etc… “The beauty of Mindlogger is that it allows you to make your own smartphone app without knowing how to program or design. For example, I imagine a daily digital diary for parents of a child with autism. They can not only keep track of their child's behaviour and symptoms but also add their ideas, insights, and what they find challenging on a daily basis. Here is one example of test we are currently conducting in New York for many parents : every morning and evening, they answer questions on the child sleep, eating, levels of energy, stress, mood, etc…” Besides being totally free, another advantage is that the app is built specifically to handle sensitive health information, focused on data security and privacy. Doctors can follow patient’s behaviour at home, so the patient doesn’t have to go to hospital to fill a paper. It also improves the consistency, as Anirudh Krishnakumar added : “if I ask you how you are and it happens that you have a headache, that doesn’t mean that you have a headache every day. With an app, you can see what is going in 3 days rather than once in 3 months”. The team is building a library where they put open questionnaires on mental health, so that multiple stakeholders like researchers, doctors, patients or family can choose an existing questionnaire. But anybody can build their own. “I gave an autism example, but the beauty of Mindlogger is that it can be used in any field. People could easily take pictures of birds for example and develop a citizen science app on that. Most important, we don’t want people just to give data, we want to make it easy for them to visualize, analyse and share their own data”.
According to this idea, the PhD researcher is working on an open crowdsourced database mapping mental health. “Now if you want to search anything on autism, you get so many apps and website... It is a big mess.” He gave the opposite example of an online books selling platform. “If you want to get a book, you can see that the books are classified by size, by price and by the name of the author. You can also see if it is romance or fiction. It is very structured and organised so it is easy for people to find. Unfortunately, nothing like this exist in mental health.” Thus, he is currently developing at CRI the largest mental health database mapping signs, symptoms and behaviours to different projects, community initiatives and technologies. It could be used for a parent interested in a particular autism symptom, asking himself : “What are the current research projects on this symptom?Is there an app? 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 also developed an educational program with students in Chennai, in India, where he comes from. Many other people at CRI, who come from different countries, have initiated outreach programs. During their free time, they teach various skills such as scientific research or video production to students who live worldwide. For Anirudh Krishnakumar, it is really important to share the approaches he learned with local communities. He considers students as “tangible changemakers, contributing to other students’ learning & communities while learning themselves”.