Problem: What problem is this project trying to address?
Autism is growing in France: while the autistic disorder affected 1 in 2,000 children 40 years ago, it is now the case that around 1 out of every 100 children is affected. Around 440,000 people in France, including 90,000 young people, are currently suffering from autistic disorder in France. Autistic disorder is detected at the age of 6 on average, even though early signs can be detected at 12 months and a diagnosis can be made between two and three years old. This late medical screening prevents early intervention work with the children’s still very malleable brains, limiting their chances to follow a closer to normal developmental path. This late medical diagnosis (when existent) is due to the fact that France struggles to recognize autism as a neurodevelopmental disorder. For historical reasons linked to the predominance of the psychoanalytic vision of autistic disorder in psychiatry, treatments in the health and medico-social sector – where children are being taken care of by default, like the “day hospital” - are mainly focusing on “psychic-care”. There is, however, predominant international acceptance and increasing scientific evidence that autism is not a “child-psychosis” - a term that only exists in France. Experts increasingly agree that autism is a neurodevelopmental disorder that should not be treated by psychoanalytical approaches, but rather through behavioral approaches. Numerous Ministries of Health, such as Spain’s and New Zealand’s, even strongly recommend against such practices and empirical results are proving to be very promising*. Since 2010 the Haute Autorité de Santé (High Authority of Health) has recognized autism as a developmental disorder, and not as a child psychosis. Though the HAS recommends behavioral approaches to treat autism, practices and mindsets of medical professionals are deeply rooted in a psychoanalytical logic. According to a national study, 77% of parents of autistic children affirm that their children do not have access to education.
There is a strong lack of available places in specialized care centers and psychiatric hospitals; 13,000 children do not have the possibility to be taken care of in an institution. Though the authorities are trying to fill the gap, the means are still not sufficient. While 8000 children with autistic disorder are born every year, the HAS plans to create only 850 “places” in specialized centers over the next three years to take care of children. This has dramatic consequences: parents have to take care of their children themselves, at home, without the necessary professional support. More and more decide to place their children in private for-profit institutes located in Belgium that often do not meet French health norms, are very expensive, and choose a medication-centered care approach over educational methodologies. In 2013, the Europe Council has sentenced France for the second time for mistreatment of autistic children.
Born in the US in the 60s, behavioral approaches to autism remain very marginal in France. The first specialized center basing its care approach on behavioral methodologies opened in 2005. Today, over the thousands of specialized centers that provide medical care and education to mentally-ill children, financially supported by public authorities, only 25 officially apply behavioral methodologies. Even those 25 centers struggle to be properly equipped with adapted tools. International trainers are rare, and obtaining an international certification (for ABA for example) is both costly and time consuming. Only three universities in France deliver local certifications, which are not properly recognized. For parents who take care of their children at home or caregivers in specialized institutes, applying such behavioral approaches is complicated and requires both training and time to imagine, design, and produce a high quantity of support materials such as images, drawings, etc.
The behavioral approach still lacks the legitimacy in France needed for it to be recognized and adopted more broadly by parents and medical professionals. Health and social professionals usually have a bad opinion of existing behavioral approaches (which they claim to be close to ‘animal dressage’) when they are in fact often unaware of their contents. An increasing number of professionals are starting to use small parts of such methods, sometimes without even knowing they’re applying them. The use of pictograms, core to behavioral approaches, is increasingly recognized as a good practice by a large number of professionals that do not know such tools come from behavioral approaches. There is also an obvious lack of transparency and collaboration between medical staff and parents, thus harming the necessary continuity in childcare. Parents struggle to build relationships with medical staff and to access comprehensive information about their own child. The education system remains closed to children with autistic disorder; teachers, inspectors and education officers are not trained to include children with mental disorders in the classrooms, and lack the necessary human resources to do so. Only 20% of autistic children have access to the traditional academic system, despite a law voted in 2005 that states education is a right for all children, whatever their handicap. In comparison, 80% to 100% of children have access to the traditional academic system in countries like the United Kingdom and Italy.
Solution: What is the proposed solution? Please be specific!
Despite the international trend to recognize autism as a neurodevelopmental disability, France has historically considered and treated autism as a psychoanalytical disorder. Reversing the traditional therapeutic route in this country - that of searching for the psychoanalytical cause of autism, mostly considering mothers responsible for their childrens’ disability, and dealing with autism’s uncontrolled effects through medication, - Gaële focuses on youth education and social integration. Through the unique development of a set of online, easy-to-use, turnkey educational tools, Gaële is enabling the broad-scale adoption of these behavioral approaches. The applications developed by her organization “LearnEnjoy” give exhausted and unequipped parents and professional caregivers the power to help autistic children learn the meta-skills (learning to learn, to imitate, or to pay attention) and general abilities they need to socialize and progress (communicate, read and write). Without naming the behavioral approaches to avoid unproductive debates between different schools of thought, she succeeds in tipping the care system for autism towards a new model.
Autism in France is characterized by a twofold situation with a recurrent under-capacity of the system to welcome all autistic children in educative and social centers, and thousands of parents are left without any viable solution. Gaële has based her entire educational approach on technology for a massive and rapid spread of her solutions among the autistic population. For a few hundred euros and a tablet, parents and professionals can access, without any prior training, thousands of adapted educational exercises covering the child developmental stages from 12 months to five years.
Gaële builds legitimacy around these methods, proving that children who benefit from them do progress. First, she engages top universities to lead scientific research and prove the efficiency of her work . Secondly, she paves the way for a deep transformation of practices in the medical system by working closely with public institutions and developing key partnerships with professional organizations and care centers on the ground. Providing her solutions and training to every stakeholder within the ecosystem of an autistic child, she also makes it possible for ordinary schools to welcome these students, here offering a large-scale solution to the under-capacity of specialized institutions.