“The event of a child’s first words amazes everyone and when this doesn’t happen it puts the family to the test”

And this minibus is truly special. No seats or lined benches, but an open space covered in light wood. The floor is covered with a colorful play carpet, posters of the cartoon heroine Peppa Pig are displayed on the walls and various storage compartments house dolls and soft toys. This van was specially set up by a team of scientists coordinated by ULB to travel to the homes of Belgian families, as part of an unprecedented large-scale study that will take place over four years. This Saturday January 13th we are in Sambreville, for a “games” session of about two hours with Michail.

Marielle Weyland, during a test session in the form of games with Michail, in the company of the latter’s mother, Laetitia, in the ULB laboratory van, on 13 January. ©Jean Luc Flemal

Opening the toy bench set up along the wall, Marielle Weyland, the van driver who is also a speech therapist and postdoctoral fellow at the ULB, takes out some treasures: fake GSMs, balloons, toy cars, but also some plasticine, candles and … a doll: “Do you know that today is the boy’s birthday, Michail? The child is 3 years old. Look, we’ll prepare his birthday. Hop! We’ll make him a cake. You will help me ? Come on, let’s prepare the cake! Do you put candles?” With a little help, the child places them on the blue plasticine balls, to the applause of his mother and speech therapist, before throwing the modeling clay on the floor.

Marielle Weyland quickly changes activities. She shows him a book on animals, which does not pique her interest, then a fake cell phone, which he initially disdains before holding it to his ear, then offers him a model airplane, which he himself confiscates. She herself grabs a simple piece of wood and makes it “fly”: “Look at my plane, Michail, it’s a bit crappy, isn’t it?” But the boy obviously prefers hers. A table is then opened in one corner. On his mother’s lap, Michail now has to sort through toothbrushes, cutlery and other items. During these exercises he did not utter any words, although he made some sounds.

The ULB team van, for the Belas studio. ©DR

These activities are part of a series of tests carefully prepared by the scientific team, intended for children belonging to the autistic spectrum as in Michail’s case. These different games are an opportunity to see how your child responds to being called, asked for attention, or pointed to. But also to what extent it can produce sound and language. These activities also test more specific aspects: the sorting of objects must show what the child understands about his environment without using language, while the birthday game must reveal whether the child knows how to “pretend”.

“Our tests are based on scientific literature, on what we know is potentially lacking in autism or on what, on the contrary, can favor language learning,” explains Marielle Weyland. For example, playing, pretending, is complicated in autism. It is related to the capacity for imitation and abstraction, such as realizing that the little piece of wood I made fly could also be a plane… Imitation and abstraction are necessary for language. Learning communication, interactions, language, involves a lot of imitation. Access to symbolism also allows access to language: a peanut is called a “peanut” but could just as easily have been called a “rabbit.” We are currently working on this study on language development and language development trajectories in autistic children aged two to five years.”

Language is a central problem in autism: by age 3, about 60% of autistic children have a significant delay in language and do not speak or speak very little, said linguist Mikhail Kissine, professor at ULB and spokesperson for the project. its financing. Between the ages of 3 and 10 some children begin to speak, others do not (25 to 30%), without knowing exactly why.

The “excellence” bilingual research project which seeks to unravel the mysteries of language in autistic children

For little Michail, language development seemed normal, explains his mother Laetitia. “He started talking between a year and a half and two years old, he looked into her eyes, pointed… she was progressing well and suddenly she stopped, she no longer spoke,” she says, sitting down. on the seat of the van while Michail continues his tests right next to her. Faced with autism we are alone, but along my chaotic path I found good people, in particular speech therapists trained in autism and who gave me advice. We try to work on pointing, to include pictograms. It’s not always easy to understand what Michail wants. He gets angry, frustrated because he shows it, but sometimes it’s not always clear. If we have to go to hospital because he’s sick and we ask him where it hurts, it’s not easy. Between the two of us our communication passes through actions, movements. He comes, he hugs me, he cuddles me. I’m also his go-to person when he’s angry. He holds me, he hits me… I made him understand that he couldn’t hit because it hurts. Then he takes me, he holds me tight and puts his chin on me, to try to transfer his frustrations, his emotions… But we always have the question mark: will he speak or is… what is he doing? won’t we talk about it? Very few things are put in place for these children, so if we can, with this study, make things better for our children and future children, if we can help here through our experiences, that’s really important. ”

Hundreds of children followed for four years

For the moment, around a hundred children are already being monitored as part of the Belas study (Belgian study on language in autism). They will be visited three times in total during the four years of follow-up, to observe the evolution of their language, identify aspects that might predict the evolution of language in other autistic children and, ultimately, find avenues for improvement. “In autism, studies have shown that access to language offers a protective effect for the development and future life of the person, for their well-being and the quality of life of the person themselves and those around them, underlines Marielle Weyland , which Belas coordinates . It is the most used and most functional means to communicate, to express one’s emotions or desires. When you’re not happy, being able to say it is easier than having to bang your head against the wall, for example. Because this is what not having access to the language leads to: being forced to find other means of communication, which sometimes are not understandable to everyone. The language will also promote integration at school and with peers. There are also social and parental expectations. The event of the first words amazes everyone and when it doesn’t happen it is complicated and tiring for families.”

Test session in the van, parked near a family’s home in Sambreville. ©Jean Luc Flemal

As for the van, although it fascinates children and is a motivating element, it is not just a gadget. It allows us to avoid distortions in the study, involving a more heterogeneous population of children. “Taking the car to go to the laboratory in Brussels, arriving at an unfamiliar place at the university, there are still many transitions for the parents and the child. It’s an additional source of stress, notes Marielle Weyland. Autism can be characterized by difficulty making transitions, going to unfamiliar places. And it’s also a spectrum with children at different developmental levels. Knowing that we are interested in the language of both verbal and non-verbal children, the van also allows us to address children who have more difficulties, who we will potentially move less and subject less to slightly stressful episodes. This allows us to have a completely innovative representation of this population.” The van allows us to include even the most economically precarious or geographically distant families, who would not have the means or simply the time to spend an entire day to travel to the capital.

Help find areas for improvement

“I don’t think we would have made the trip to Brussels. Here, it allows us to stay at home, already because we have a second child. It’s easier, we can go about our business. Here, the van is parked in front of our house… And if we participate in the study it’s because if no one does, we’ll never move forward! The things that have been put in place to support my son are very positive and also come from previous research, in which we managed to find ways of improvement…” confides Florence, in her home in the Namur region, while her youngest child plays next to her in the living room and Charlie runs tests in the van.

Marielle Weyland and Clara Rapp prepare Charlie for the EEG test, in the Belas team van. ©DR

The five-year-old “talked late, around the age of three, but immediately very well, from one day to the next”, confides his mother. He has already passed the first phase of the games during his first visit. With his head covered by an encephalogram cap, he is now sitting, very concentrated, in front of a screen. To encourage him, Clara Rapp, Marielle Weyland’s colleague and also a researcher, also wore such a “magical” hat… It is a technical challenge, but the van has been adapted for the installation of a portable EEG. This device records Charlie’s brain activity as he plays back what he observes on the screen: a man sticking out his tongue and saying mommy…. “This activity targets mirror neurons, the neurons that allow us to imitate an action. We are trying to see the child’s ability to reproduce actions based on images and to see his brain activity when he imitates action or speech,” explains Clara Rapp, who also studies children’s sleep in the Belas framework. “Every child he will wear small watches on his wrist or ankle for 14 days. An accelerometer will count his movements during the day and night. We will thus know the periods in which he is awake and when he sleeps and we will analyze his circadian rhythm. We know that in children with Typically, a better maturation of the sleep-wake cycle facilitates language learning, while a lower consolidation of the cycle can have a deleterious effect on this learning”.

Make things more predictable

Sleep study, brain activity, diagnosis of autism, symptoms and stage of development of autism, IQ, form of interaction between parent and child (the duo is filmed for ten minutes without external intervention), language characteristics and sounds emitted ( the child wears a microphone for 6 continuous hours at home)… All these aspects studied must provide the most complete profile possible of the child over a four-year evolution, in order to find at the end of this period elements in able to predict language development trajectories in children on the autism spectrum. “The idea is to say: on a child of this age we take all these measurements, this is the profile of him. With all this center of expertise, here is his developmental trajectory in terms of language, explains Marielle Weyland. This means that if we look back, we can identify the deficient aspects and perhaps determine that this is a predictor of atypical language development. In fact, autism is a disorder for which there is currently no biological marker. It is diagnosed and observed only by behavior. Having the support of predictors can help, in particular, to anticipate development trajectories and to anticipate the future a little. For example, for Charlie, until the day he started speaking well, we didn’t know he would speak! We said to ourselves: maybe there are huge deficits, that he needs a lot of help … And he has still developed language … It’s all this that is also quite unpredictable in autism. We’re trying to make things a little more predictable.”

Recruitment continues

In a longer perspective, within ten years, the hope is also to find improvement strategies, through techniques to stimulate the child and suggestions to be given to parents on a daily basis. “If, for example, we discover that knowing how to point, look, name, is a real statistical predictor; if we see that most children with deficits in this area have difficulty speaking, these avenues of improvement could include exercises in this area: showing and looking even more, creating tests around this… We would say to parents: every time your child shows interest in something, it is absolutely necessary to point it out, show it, name it, lower yourself to their level…”, summarizes Marielle Weyland.

“But the best avenue of improvement that we can offer to these children considered on the autistic spectrum would be a “normalized awareness in society,” adds Julien, Charlie’s father. If we don’t participate in the study, if no one participates, we don’t move forward and, if let’s not move forward, we cannot ensure that, in the years to come, we begin to consider that “it is “normal” for every child to have his own little characteristics…”

“The feeling I perceive most in others is fear”, adds Sonia, mother of Teyssir, 5 years old, who is also taking part in the study. Our children, if they are non-verbal like Teyssir, will emit cries of joy or clap their hands . So it often happens when my son decides to express himself in his own way that everyone turns away. I would like to tell people not to be afraid and to let my son express himself.”

Child recruitment continues in Flanders, Wallonia and Brussels. The Belas study, carried out collaboratively by ULB, UGent and KULeuven and covering the Dutch and French-speaking linguistic communities, is still looking for around 200 children, diagnosed with autism or suspected of having autism, aged between two and five years , both verbal and non-verbal.

Information:

2024-01-19 17:36:00
#event #childs #words #amazes #doesnt #happen #puts #family #test