Institut Pasteur partner InovAND, the Excellence Center in the Greater Paris region specializing in autism spectrum and neurodevelopmental disorders, is publishing a practical guide every day to help families overcome the difficulties associated with the lockdown.
The lockdown soon proved to be a testing time for many families, especially those with a child affected by neurodevelopmental disorders. The most disadvantaged families, in social and financial terms, found themselves enclosed in cramped apartments, having to deal with the behavior of their children all alone and struggling to handle their cognitive peculiarities, resistance, provocation and sometimes even violence. To help families overcome the difficulties associated with the lockdown, Institut Pasteur partner InovAND, the Excellence Center in the Greater Paris region specializing in autism spectrum and neurodevelopmental disorders, decided to publish a daily practical guide.
"From the very first day of the lockdown, we instantly lost all contact with our patients, which was a major source of concern for us," explains Professor Richard Delorme, a member of the Institut Pasteur's Human Genetics and Cognitive Functions Unit, coordinator of the InovAND project and Head of the Child Psychiatry Department at Robert Debré Hospital. "Then after a week, once the initial period of anxiety and shock had passed, the families started asking us for help. All the strategies that we had devised with them to improve the situation of their children had been jeopardized by this sudden loss of support. We couldn't leave them all alone at this time!"
The Institut Pasteur and Robert Debré Hospital: the benefits of translational research
On Saturday March 30, 2019, nearly 550 people came to the Institut Pasteur for a day focusing on the latest progress in research by the Institut Pasteur and Robert Debré Hospital on autism and autism spectrum disorder. Several collaborative multidisciplinary projects are under way, led by Thomas Bourgeron, Head of the Institut Pasteur's Human Genetics and Cognitive Functions Research Unit, and Richard Delorme, Head of the Child and Adolescent Psychiatry Department at Robert Debré Teaching Hospital (part of the Paris Public Hospital Network, or AP-HP).
Practical daily guides for families
It was this realization that gave rise to the idea of publishing a series of practical guides containing pragmatic advice for dealing with the lockdown, based on the latest proven knowledge in the area of neurobehavioral disorders. The guides incorporate cognitive and behavioral strategies, as well as more specific practices like those in the Early Denver Model or the Preschool Pediatric Autism Communication Therapy approach. Among the 150 members of the Child Psychiatry Department at Robert Debré Hospital, those working from home soon coordinated their efforts to write the guides and publish them online : https://www.pedopsydebre.org/fiches-pratiques (in French).
"As we were addressing a real need, the guides were an instant hit, with 20,000 visits every day," says Richard Delorme. "We have now reached a total of 300,000 visits, encouraged by effective word of mouth. A number of parent groups and government institutions have shown an interest in the initiative, and we have received several expressions of encouragement and thanks."
The InovAND guides are organized by category:
- "For the whole family,"
- "Autism spectrum disorders,"
- "Attention deficit disorders with or without hyperactivity."
It goes without saying that they focus on the needs of children, such as "How to stimulate my child (under the age of 2) during lockdown" or "Bad screen time for children with autism spectrum disorder and/or intellectual disability." But they are also aimed at parents, for example "Parental burn-out: how close are you? 10 steps to prevent it, 4 methods to conquer it." And some guides are aimed at all families, including those without children affected by neurobehavioral disorders, such as "Working from home and managing children: mission impossible?" There are now around 30 practical guides available online, and the plan is to continue publishing them at the same rate, as long as support is needed and there are new subjects to address. "We also intend to develop the format," adds Richard Delorme, "by including short videos and accounts or feedback from families." So the lockdown has had at least one positive impact – it has promoted new, lasting links and synergies between scientists, clinicians and patient families, which after all is what the InovAND project is all about!
This study is part of the priority scientific area Brain connectivity and neurodegenerative diseases of the Institut Pasteur's strategic plan for 2019-2023.