For parents of ADHD children, the fight until diagnosis is marked by “years of guilt”

ADHD – “Our son was constantly moving around, throwing big tantrums. So, when he arrived in the main section of kindergarten, his teacher advised us to consult. » What Céline tells about the journey of her son, now 10 years old, has been experienced by many parents whose child has attention deficit disorder with or without hyperactivity (ADHD). According to the High Authority for Health (HAS), between 3.5 and 5% of children living in France are affected by this disorder.

Little known to the general public, ADHD has long had a bad reputation. Just like children with this neurodevelopmental disorder, to whom the labels of “little monsters”, “noisy”, “turbulent” or “badly brought up” were often joined together. “They are impulsive children, who move around a lot, who have significant concentration problems, to whom instructions must be repeated several times…”confirms Naoual Massaoui, who works as a nurse in the “Living better with attention deficit hyperactivity disorder” program at Montpellier University Hospital. “For their parents, it is extremely tiring, it requires a lot of energy. »

A poorly understood and misdiagnosed disorder

Managing their child’s ADHD is all the more trying for them as they also have to deal with the accusatory looks of teachers and those close to them. “We experienced years of feeling guilty about our parenting”confesses Céline. Although her eight-year-old daughter was also diagnosed with ADHD, it was her son’s disorder that earned her the most blame. At the time, the little boy was three years old and had just started nursery school. “My husband and I were made to understand that we did not know how to manage our child, that we did not know how to educate him. The other parents also took us to task because he hit and bit. »

“We feel incompetent and powerless”says Amélie. Regarding her first son, now sixteen years old, she remembers that no solution was offered to him at the time. “I was made to understand that he was difficult in class, but when I asked his teacher what I could do, I was left without an answer because, for her, it did not constitute a disorder. »

The deliverance came when a child psychiatrist identified that her eldest son’s total lack of written production at school was not due to a lack of motivation. “For six years, the refusal to recognize my son’s ADHD put us in danger. Before the diagnosis, I even thought he wouldn’t make it to the end of college”blurted out the mother. “We saw a child psychiatrist at the PMI, two psychologists who say they specialize in neurodevelopmental disorders and who completely missed the point”explains Céline in detail to relate this diagnostic wandering.

“For a long time, ADHD remained underdiagnosed because it was poorly understood by health professionals”explains Dr Julie Majorel, child psychiatrist and coordinator of the “Living better with ADHD” program at Montpellier University Hospital. In recent years, the doctor has nevertheless noted improvements in care thanks, in particular, to “to the latest government health plans on neurodevelopmental disorders”. The latest recommendations issued by the HAS in September also attest to better recognition of this disorder.

False trouble and “bad parents”

However, this does not prevent preconceived ideas about ADHD from persisting in public debate. And the detractors of this disorder have found a choice spokesperson in the person of Caroline Goldman. In her books as in the column she wrote on France Inter last year, the media child psychologist went against the scientific literature by asserting that ADHD would be a word “tote” used by parents to justify their child’s disruptive behavior, but also “an invention of pharmaceutical laboratories » to sell a drug treatment, Methylphenidate.

Céline, who consulted a first psychologist « pro-Caroline Goldman » when his son was five years old, testifies to the results “catastrophic” of this approach. “She told us that we didn’t know how to set limits, that we had to be more severe by isolating him in his room for the slightest misbehavior. We went through hell”details the mother, who was also confronted with this type of speech in her family circle. “My parents had very harsh words about the way we raised our children. » To avoid feeling judged, she preferred to cut ties with them two years ago. “We do the best we can, we are committed to raising them with values ​​and it is not by feeling guilty that we will be more successful. »

“With the treatment, we were left alone”

For these two families, the diagnosis and what it entails (recognition of the disorder at the departmental center for disabled people, classroom accommodations and medication treatment) was experienced as a real relief. “This made it possible to explain his behavior, to normalize relations with the teachers”says Amélie. “ With the treatment, we were left alone, we were finally considered good parents,” adds Céline.

The care was also life-saving for the children. “My son says that before the diagnosis, he had no happy memories”breathes Amélie, while Céline maintains that hers also has “suffered enormously” of the consequences of his ADHD. “That’s what made us want to fight as parents. » To help other families like them, the two mothers are now volunteers within the HyperSupers association, which campaigns for better access to care for ADHD children and offers meeting spaces between parents.

The latter can also exchange within specialized structures, such as the program developed within the Montpellier University Hospital. As Naoual Massaoui points out, this sharing of experience is not only crucial to get them out of their isolation, but also beneficial for sharing good practices. Which Céline confirms. “For a long time we had the impression that it was only our child who had a problem, and that we were the only parents who didn’t know how to manage it. Finding other families like ours has been a real comfort. »

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