“Terrible. » This is how Michèle describes the experience her son had in the youth center. Her boy has autism spectrum disorder and is gifted. In the summer of 2022, his mother contacted the Youth Protection Department because he was exhibiting violent behavior. The teenager ended up in a rehabilitation center for young people in difficulty. Completely “isolated”. “He didn’t have any social contact with the other kids there because he was autistic and the others weren’t,” his mother said. The speakers were afraid that it would become disorganized [en les fréquentant]. »
After five months in a youth center, Michèle’s boy — whose identity we are protecting because he is a minor — finally obtained a place in Nexus, a program set up by the CISSS de la Montérégie-Ouest and intended for young people like him. A “miracle” in the eyes of his mother. “There is a major gap in services for autism without intellectual disability,” laments Michèle, who is a psychologist. For the first time, it was a program that met his needs. »
The CISSS de la Montérégie-Ouest launched Nexus 15 years ago, a program developed in Oregon and originally aimed at the rehabilitation of young offenders. The Quebec health establishment has adapted it for 7 to 21 year olds with an autism spectrum disorder (ASD) or a mild intellectual disability (ID) and who have so-called “antisocial” behaviors: seizures. anger, constant opposition, destruction of other people’s property, premeditated acts of revenge, theft, assault, etc.
Since then, some 240 young people have completed the program. About fifty others participate. Unique in Quebec, the initiative is now spreading in Nouvelle-Aquitaine, a region in the south-west of France, where a first team of speakers was formed in the approach.
“This program is about being positive all the time,” summarizes Laurence Pérusse-Tardif, assistant to the director responsible for large-scale DI-TSA accommodation projects at the CISSS de la Montérégie-Ouest. “It goes so far as to strengthen the young person during a disorganization. You may even have hit someone, and I will find something positive in the situation that happened: “You may have hit me once, but I saw that you wanted to continue and you were able to stop you.” »
Nexus participants — the majority of them adolescents — are monitored by an “educator-coach” within their living environment (natural family, intermediate resource, ongoing assistance resource, etc.). Every week, their “ally” worker does activities with them to work on their social skills and problem solving. If they behave well, young people earn points that they can “spend”: 80 points for a 6-inch submarine at the restaurant; 125 points for swimming in an indoor pool; 25 points for a bag of candy or control of the TV from 6 p.m. to 9 p.m. (but the sound at 18 max!), etc.
Parents apply this system of privileges at home. They also receive help from a “family worker” to develop their parenting skills. They are often exhausted when their child joins Nexus, according to Laurence Pérusse-Tardif. “At a given moment, you are so tired of arguing with the young person, of getting into confrontation, of maintaining your point that you let go a little, you let go a little and the child – we call them child kings – ends up by taking control of where he is. »
Good progress
When she started at Nexus, Karine went so far as to decide the pencils used by her “educator coach” during a drawing activity. When The duty met her in March, the 10-year-old — whose real first name we’re withholding to preserve her anonymity — had in hand a written list of things she wanted to say about the program. Rigid due to her ASD, she practically did not deviate from her grades. “Nexus is a program for young people with challenges. They teach us to manage our emotions,” explains the young girl, a cap screwed on her head.
Karine threw tantrums and often quarreled with her brother at home. She made “premeditated acts of revenge” against her mother, indicates her trainer and trainer Laurie-Ann Damien. “Her mother could tell her an instruction and she would take revenge that evening and the next day,” she said. She could tell lies at school so her mother would have consequences. »
Karine followed the Nexus program for two years (on average, the duration is 12 to 18 months). She enjoyed the rewards when she behaved well. “I love the arcade!” ” she says.
The young girl, who now lives in an intensive behavioral rehabilitation unit, has made good progress, according to her trainer. “We signed her up for a day camp [l’été dernier]. She was supposed to be accompanied [par un intervenant]but ultimately, things were going so well that she was in a regular group and she full loved it,” says Laurie-Ann Damien. “This day camp is the best! Karine confirms enthusiastically, sitting next to him. I still have my sweater! »
Limited resources
Nexus has “a good success rate”, according to the CISSS de la Montérégie-Ouest. Once the program is completed, participants return to their host family, their natural family or move to an apartment, it is specified. A researcher from the University of Montreal is currently conducting a study — funded by the Ministry of Health and Social Services — to measure the effectiveness of the program.
Laurence Pérusse-Tardif believes that Nexus could help more people in Montérégie, the territory that her CISSS serves. Currently, the region’s youth centers welcome 37 young people with ASD, 13 of whom are waiting for a place in permanent accommodation. Many could benefit from the program, she said.
But resources remain limited. “Our biggest challenge is finding family-type resources [RTF] Nexus,” says Laurence Pérusse-Tardif. She explains that it is “not profitable” for an RTF to embark on this adventure, due to current financing rules. RTFs are paid based on the child’s “rating”. “Conduct disorders, provocation, are not “rated”, despite the fact that they are very emotionally demanding,” laments Laurence Pérusse-Tardif.
Michèle is well placed to know this. She fears the end of Nexus for her 16-year-old son, scheduled for June or July. “It’s a good service. The problem is, he could still use some help. He is not ready to return home,” says the mother, who emphasizes wanting to “mutually protect” her boy and her daughter who lives with her.
She doesn’t know where he will end up this summer. “There aren’t really any resources available. » She would like to see the establishment of a component 2 of Nexus which would offer “perhaps less intensive” support to program graduates. “My boy cannot, overnight, no longer have a frame. » And find yourself suspended in the void, once again.