Samy is 12 years old and suffers from severe autistic disorders. Since her birth, Églantine Eméyé, her mother journalist and TV presenter, is mobilizing for him and for all children with autism.
Your son, Samy, has been in the hospital for 4 years. This situation no longer suits you and you want to create a real home. You made a call to other families. How did you imagine this place?
Eméyé Eglantine: Today, when you are looking for a place for an autistic child, there is very little. I would like to create a real house. Because, certainly my son needs a medical follow-up but not necessarily to live in a hospital where he shares his room, where there is no room for common life. So it would be a place of permanent life as a home for medical care for adults except it would be children. They would be six. Everyone would have his room and his bathroom. There would be common rooms: living room, living room, activity rooms and of course a garden. Today, I think about it with an association "The club of six". This association offers houses in co-location for disabled people on the ground floor and social housing upstairs. They use personal services to help and support them. So I would like to go on this model. Families would fund housing themselves and the medical side would be funded by the state. I would like to see the establishment of a reliable funding system and organization. And that it is cheaper for the State than current care. Because there are still children who will remain very handicapped. They will need help all their life. Because there are still children who will remain very handicapped. They will need help all their life. Because there are still children who will remain very handicapped. They will need help all their life.
To read also: The causes, the signs and the point on research on autism with Professor Catherine Barthélémy
You have already created a respite home, a year ago, with your association " A step towards life " and Adapei Var-Mediterranean . What is your assessment?
EE: It works well. We have 8 places for young people from 6 to 20 years old. As expected, we have autistic children with very severe behavioral problems so the beginnings were a bit difficult. The team had to adapt very quickly. The children integrate quite easily, take a lot of fun and ask to come back. The goal is to accommodate up to 150 children per year. We offer two types of reception: a family-sponsored welcome every two months, for example, and a welcome in the event of a crisis in the family or at an institute. The child needs to blow. It would take this type of structures in all departments. Because many families would like to keep their child at home, but it's exhausting. And it is important that siblings have a special time with mom and dad without the support of the disabled brother or sister. Thanks to this house, families get back on their feet, it's a form of rebirth. The child also benefits from this respite because the educators do not have a priori on him and privilege the leisure to the educational. Marcel Rufo, child psychiatrist, who accompanied us in this project said: "It will be a success when the brothers and sisters will want to spend holidays there". And this is the case today. who accompanied us in this project said: "It will be a success when the brothers and sisters want to spend holidays there". And this is the case today. who accompanied us in this project said: "It will be a success when the brothers and sisters want to spend holidays there". And this is the case today.
Housing, school ... The care of people with autistic disorders is always synonymous with obstacle course?
EE: Autistic children are all different. But there is a huge logistics to set up: manage appointments with the doctor, the psychomotor therapist, the occupational therapist ... If you do not have a place in an IME (Medical-Educational Institute), you do all this alone. Parents often stop working. Financially, it's difficult. And then it's not a sick child who is given care. You may be facing a child who does not look at you, who does not communicate and who explains things to you with shouts. That's why families of children with autism really need help. The entourage is touched. It's destabilizing. To improve the care of children with autism, there should be a house of autism in each region where professionals from all medical professions would be represented.
To read also: When autism finds its place in school
Autism teaching units exist in kindergarten. With only seven children per class. Example in Albi.
The 4th autism plan is in preparation, what do you expect?
EE: I'm expecting a lot. Because during the consultation, they appealed to many people and especially to families. The Minister for Persons with Disabilities is herself a member of the disability community and is therefore familiar with the problem. I think we need to find more efficient and less expensive solutions. Inclusive education and work is fundamental. Apart from severe cases, all people with autism should have access to school. They are smart, they can learn things. The school is a place of social integration. And then the other kids will learn and do with it. Future generations will not have this view of difference that we have today, and that is fundamental. It's very small that you have to teach them how to reach out.