This article on a family was published on August 1, 2012 in the French regional newspaper “Le Progrès” of the Loire area provides substantial evidence on the inhumane conditions of institutionalization of teenagers with autism in France. Children are restrained, strapped and faces bruises. Yet, parents must accept institutionalization in the fear of a report to child protection services.
Translation: David Heurtevent
Note: Bold Italic emphasis was added to highlight key facts.
“Loire. The plight of a mother against her son’s autism”
Roanne. Ahmed is a 13 year old with autism. His parents take care of him every day but he is threatened to be placed in a psychiatric ward. His mother reflects on her predicament and her isolation due to the disability.
The smiles hide the distress. Naïma Matalibi want to show to the wold that Ahmed is not dangerous. Photo: Damien Brunon
“Ahmed is young, he is not crazy. We must find him an institution. He has been struggling for a year”. The cry of distress of Naima Matalibi, Ahmed’s mother, is striking. More than ten years ago, she stopped working to be able to take care of her son when he is home.
The boy is neither aggressive nor vicious, but his weight and size is the average of an adult. It transforms his care into a constant struggle. Imagine a young adult with the frantic moves of a 6 year old.
Since he left the “Phoenix”, in Roanne, in June 2011, Ahmed has got no accommodation in a specialized center. It is a daily struggle for his family. “His father and I are tired. I am not an educator. I can’t do what they do. I am a mom”, said Naima Matalibi. Until recently, the teenager was welcomed by the day hospital of Roanne, with 4 or 5 year-old kids on Mondays, Wednesdays and Fridays. He did not participate to their activities but it allowed his mom to have time to seek another solution for her son. This summer, Ahmed should be hosted by two nurses four hours a week for care. Small consolation for his mother, as Ahmed will be home most of the summer. A prospect that worries her parents who already are on the edge.
What scares them even more is the new care protocol that they have just received from the day hospital. Now, in case of “restlessness”, Ahmed could be confined to an “appeasement cell”. A situation that the child has already experienced.
Back in December 2011, the parents of Ahmed accepted his placement in a psychiatric ward in Saint-Etienne for a few days after an entire week with their child. “We were told that he would be in a room with other children with beds, that adults would come to organize activities and that we would find the treatment they need. So we agreed”, laments Matalibi Naima.
Ahmed spent five days with his feet, belly and hands strapped to a table. He was only going outdoor an hour and a half in the morning and in the afternoon. The prescription of the child now includes Valium, a strong tranquilizer. He returned home shocked and drugged with bruises on his wrists and stomach, a trickle of drool on his mouth. “We were told that this kind of hospital is meant to relieve parents. But I’m not relieved, I am shocked for life”, sobbed the mother of the child.
With the new protocol, Ahmed could experience this painful episode again, and he does not understand what is going on. His parents are in fear, they feel surrounded. If they refused the placements in psychiatric wards, a report could even be sent to children’s protection services. Strange fate of parents who refuse to see their child be treated as a hazard.
No place for Ahmed
Despite the efforts of his mother, Ahmed is currently on a waiting list for a place at the Medical-Educational Institute (IME) from Saint-Cyr-les-Vignes. He could be admitted there in February 2013 under two conditions: some residents will have to have left the facility and they should be men as the women’s rooms are not suitable. Meanwhile, the Mayolet IME in Roanne has promised to accept the child if a position was funded to take care of hime. The Regional Health Agency (ARS), which manages these funds, refuses to do so for an isolated case. Ahmed will have to wait.