On the occasion of World Autism Awareness Day which took place on Sunday April 2, the association of families of children with autism spectrum disorders (ASD) AIDERA Var broadcast, throughout the week, short videos of families who have agreed to share their daily lives and testify to their need for support (1 ). Among them, the family of Timéo, a 3-year-old boy from Toulon whose autism spectrum disorder was diagnosed last year. Audrey Guglielmi, her mother, talks about their journey since the onset of the first troubles and tells of a complicated daily life that impacts the life of the whole family.
“Timéo does not know how to communicate with those around him. He has sensory hypersensitivity: he reacts strongly to certain stimuli. For example, he shows hyperselectivity in food by refusing new textures or tastes. He is always fed with bottles, porridge for babies. The pieces are very complicated. He can also have behavioral problems: hitting, biting or scratching himself – we are talking about self-mutilation – or hitting others, me or his brother, minus his dad.”
Too long lead times
Timéo’s parents, Audrey and her companion Jérémy Favre-Mercuret, already parents of Mattéo, Timéo’s big brother, started to worry when their baby was 16/18 months old. “He was regressing, remembers his mother. The maternal assistant who had looked after him since he was three months old had noticed problems with his diet, he was becoming hyperselective. And then she noted the first stereotypical behaviors. He was fascinated by shadows.”
The young mother spoke to her doctor, inquired on the Internet, found and contacted the resource centres: the medico-psychological center and the center for early medico-social action (CAMPS). “The treatment times were too long, so I turned to the liberal sector and met Dr Lionel Couquet, child psychiatrist. There was also Dr Anne Pernod at the Handiconsult consultation, neuropsychologist Florent Josse The diagnosis was made when Timéo was 2 and a half years old. I came across the right people, who naturally directed me to AIDERA Var. Dr. Couquet in particular pointed out that Timéo had the profile to join the UEMA, the nursery education unit for Autism within the Camille Saint-Saens school in Toulon.”
Placed on the waiting list for the start of the 2023 school year, Timéo was able to join the class at the start of the February holidays. “A chance, says his mother, Until then, he was educated in an ordinary environment, with a full-time school life assistant (AVS). I fought for that. You have to fight for everything! Deciphering the administrative workings to move forward is an essential skill for parents, it’s really very complicated!”
A class for Timéo, support for his parents
Since its entry into UEMA, progress has been notable. Timéo begins to verbalize, to repeat words. “This is already enormous progress, even if we are not yet at the association of two words, like Timéo soif, says Audrey. And then thanks to the UEMA team I was able to get an appointment with a speech therapist. I was also offered autism awareness training. The team is friendly, open. We don’t hesitate to call them if we have a question…”
What Audrey particularly appreciates is the discussion time organized at the end of the school week, every Friday. “We talk about the progress of the children, the things to work on at home, the difficulties. Several times a year, there is a parents’ café, it’s an opportunity to discuss, share our tips, support each other .”
Despite entering the UEMA, daily life remains complicated. Audrey, who had to stop working, will resume her part-time position in a few days. “I benefited from a leave and a parental attendance allowance. My contract was suspended, I had help from CAF. But it does not last forever. Many parents of children with ASD lose their jobs.”
The look of the others
It’s not about holidays either: Timéo needs a familiar setting that reassures him. Outings to restaurants, shopping at the supermarket can be hardships, the occasion for terrible crises. But the worst is not Timéo’s behavior. “It’s the gaze of others, testifies his mother. It’s hard. Very difficult.”
“When I put a harness on him, people look at me askance. They think I’m walking him like a dog. Whereas as a parent, I’m just protecting my child. If they put a helmet or gloves on, There’s a reason. People should stop judging. We’re here on an invisible handicap. And we don’t have to apologize or justify ourselves. You have to be armored. I’m at the stage where it’s still manages to answer…”
Audrey Guglielmi believes that if interactions with the outside world are so complicated, it is first “because we don’t talk enough about autism and people don’t really know what it is”.
Testify, raise awareness…
It is for this reason that she agreed to testify to her daily life with Timéo in the video broadcast by AIDERA Var, then in the columns of the newspaper. “One year ago, she admits bluntly, I had the same image of autism as 80% of people: for me, it was either someone gifted, an autistic person with asperger, or a very severe handicap, with people incapable of the slightest interaction. There was not this in-between in which Timéo and the vast majority of people with autism spectrum disorders are located.
Since the diagnosis was made for Timéo, his mother has learned a lot. She formed herself and she continues to do so. She now knows very well how to describe her son’s handicap but does not reduce it to this singularity.
…and talk about love
“He is also a child who exudes true, pure and complete love.describes the mother of Timéo. He never asks for anything in exchange because not only does he not communicate, but he has no notion of what the exchange might be. When he smiles or hugs you, his love is absolutely sincere!” And his mother, the happiest in the world.
> 1- To see on YouTube.