My husband and I have two children, born two years apart. Very early on, around six months old, I noticed signs in our youngest son L. that concerned me: he didn’t make much eye contact, he babbled very little, and he had strong sensory reactions, particularly to touch, which contrasted sharply with those of his older brother. Over time, other difficulties emerged: limited social interaction, limited language, and a lack of understanding of the implicit rules of everyday life. At first, my concerns were dismissed. The professionals suggested that it was a temporary developmental delay that they did not consider concerning, and implied that I was perhaps being a bit too anxious as a mother, while family members suggested I was comparing him too much to his brother. It was a very difficult time. It was ultimately thanks to a friend that we were able to get a referral to a child psychiatrist. For the first time, my observations were taken fully into account.
The diagnosis, made at the age of three after a week-long multi-disciplinary assessment at the hospital, was a turning point: autism spectrum disorder associated with attention deficit disorder, without cognitive delay. This moment was both a relief and a source of anxiety. It provided an explanation, but above all it opened up a new phase: how to organise the necessary support in practical terms? Very quickly, our daily life became structured around therapy sessions: speech therapy, psychomotor therapy, psychology, several times a week. Our schedules became increasingly busy. I adapted my professional activity to co‑ordinate appointments and follow-up. This organisation is demanding, but it is essential for progress: early and regular intervention has a direct impact on development.
In everyday life, many learning processes had to be explicitly constructed. Simply brushing teeth, for example, was entirely sequenced: 1) Turn on the tap; 2) Wet the toothbrush; 3) Turn off the tap; 4) Open the toothpaste; 5) Put a small amount on the toothbrush; 6) Close the toothpaste; 7) Brush the upper teeth (front); 8) Brush the lower teeth (front); 9) Brush the teeth on the right; 10) Brush the teeth on the left; 11) Spit into the sink; 12) Rinse the mouth; 13) Rinse the toothbrush; 14) Wipe the mouth; and 15) Put the toothbrush away. This sequence was translated into: pictograms displayed on the wall; photos of our son performing each step, a two‑minute visual timer, a timed song, a mirror to encourage imitation, an hourglass placed near the sink.
These aids, repeated day after day, enabled gradual learning. These actions may seem simple, but they sometimes require years of structured, repeated and patient learning. The challenge was not only about practical independence, but also social skills: responding to his name, asking for help, waiting his turn, coping with the noise of the playground, understanding the unspoken rules of social interaction.
For L., however, one of the most persistent difficulties remains his ability to form relationships outside the family circle. Despite the progress made, making friends, maintaining spontaneous relationships, understanding the implicit aspects of a conversation, and knowing how to interact naturally remain daily challenges. I remain convinced that in a more inclusive, better informed, and more open-minded society, these relationships would be easier to build because the effort to adapt would not fall solely on him.
Every step forward took time; every difficulty exposed me to the outside world, sometimes to the critical gaze of those who judge a child to be “ill-mannered”, or to those who direct reproach and contempt at the parents.
Schooling was another key focus. We chose mainstream education, convinced that learning social codes requires interaction with other children. An AESH (special needs teaching assistant) was assigned by the school, but the support modalities did not fully meet his needs. It was in this context that we were fortunate to discover the Sur les bancs de l’école association. Thanks to it, L was able to receive truly adapted support: an AESH recruited for their expertise with autistic children, trained and supervised weekly, and capable of creating a stable link between the family, the school and the therapists. This support ensured a more consistent and continuous provision of care. We also discovered a group of supportive and determined parents, with whom we formed genuine friendships. Mothers became essential sources of support, true warriors who would stop at nothing when it came to their children.
It is also important to point out that L.’s schooling would not have been possible without our constant involvement and daily support. Beyond the institutional arrangements, we had to provide close guidance at home, go over concepts that had not been understood, anticipate difficulties, and adapt learning methods accordingly.
To access relevant public services in France, a general assessment of a child’s needs by the local authority for people with disability is required. To allow L. to be educated in a mainstream setting with the support of an assistant, nevertheless, every year again a meeting must be held with the educational team and a document be completed explaining the child’s needs before the application can be submitted. Then, often with anxiety, we must wait for the renewal of the school’s assistant, without which no schooling in a mainstream environment is possible.
I am aware that our journey has been made easier by financial, cultural and social resources that have enabled us to mobilise the right professionals and effectively defend our son’s rights. Not all families have these levers at their disposal. For many, despite constant commitment, the outlook remains uncertain, particularly when mainstream schooling is no longer possible and specialised solutions remain insufficient.
Today, our son is 18 years old. Obtaining his baccalaureate was a major milestone and a source of immense joy, commensurate with the years of co‑ordination and perseverance it represented. He is now pursuing higher education, where the issue of inclusion and, ultimately, that of professional integration, continues to be a source of concern. Our experience has led us to one conviction: behind every administrative procedure and every budgetary decision, there are people’s lives. Better diagnosis, better support and better inclusion are not just a matter of technical organisation; they are a collective responsibility, supported by ambitious public policies and a shared desire to build a truly inclusive society.
Gaelle Gouarin,
mother of L.