Autism Spectrum Disorder affects one in 160 people in New Caledonia and requests for support are high. Like the Tuilekutu family who left Valais to offer better care to Eléazar, his youngest.
In France, 100,000 young people under 20 and 600,000 adults are affected by neurological disorders related to autism, according to the high health authority. In New Caledonia, requests for assistance are significant. One family agreed to tell us about their daily life.
“Every day I take him to school, then I pick him up and we go home.”, testifies Nefa Tuilekutu. The same ritual for this mother for a year. She chose to quit work to devote her days to her autistic child. At 8 years old, Eléazar still doesn’t speak.
“I had to give up everything I had in Valais to move and come here in New Caledonia so my son could benefit from the care. In Valais there is no specialist, no center for children with autism.”tells Nefa. “It is a difficult illness to deal with this disease because at the same time he is hyperactive. I’m not trained at all and got some little advice from specialist doctors on how to treat and care for him.”
Nefa is supported by her eldest son and daughter. Her husband, who lives in Valais, supports her financially in the hope that Eléazar will get a place at Isa, the specialist institute for autism. It is the largest of its kind in New Caledonia and also the most popular.
“Jean-Baptiste comes to class in 30-minute slots. The activities are diverse. These are language activities, word sorting activities, label sorting activities. This also allows him short periods of concentration to limit the little screams he may have “stereotypies”Illustrates on location Sandra Hoarau, subject teacher working with another child.
“Over the years we find that we have more and more requests. We recently created a sizeable waiting list for our three services: Eteps [établissement thérapeutique éducatif et pédagogique spécialisé, NDLR]which resembles the reception of the day, the sessad [Service d’éducation spéciale et de soins à domicile] who is a bit more mobile and drives through the provinces, and the Lst [Lieu de séjour temporaire]this is a night shift”explains Amandine Stabla, Head of Service and Daycare, at Isa. “Today we have 28 people on the waiting list”She says.
The Autism Specialized Institute opened in 2014 in the former Les Lucioles Kindergarten in Robinson and has 28 people on the waiting list.
One in 160 people would be affected by autism spectrum disorders in New Caledonia. An underestimated figure, according to the associations.
“What we really need is to recognize, to take responsibility, to help the structures that take responsibility, like Isa, to support the parents, because it’s very, very difficult to have the diagnosis and be able to to be supporting another child. Clubs can play their role, to accompany and support”explains Joël Kasarhérou, President of the Movement for an Inclusive Caledonia.
Like Eleazar’s mother, most autistic families have little or no training designed to support autistic people on a daily basis.
Below is the report by Mirna Kilama and Cédric Michaut: