The Academy of Medicine draws attention to dyslexia, which affects 5% of children and as many adults. Significant challenges complicate management.
Chloé Leroy* was 21 when she learned she was dyslexic. The young woman went through her entire schooling without ever understanding where her difficulties with reading and spelling came from. Learning in adulthood that his problems had a specific explanation is now a real relief.
Often associated with childhood and learning to read, dyslexia problems are more rarely mentioned for adults like Chloé.
Chloe Leroy “I think that explained a lot of things. It explained why I was reading so slowly, why I was so slow compared to the norm. For a very long time I felt very useless. …»
In this new school year, the Academy of Medicine chose to raise awareness about dyslexic disorders. Characterized by a specific reading and/or writing impairment, they affect approximately 5% of children and at least as many adults. But for the latter, the absence of research on the subject means that there are no precise figures on the number of people affected. In fact, the lack of awareness of dyslexsia in adults poses a certain number of problems of recognition and management.
Illiteracy situations
The 2001 language plan marks the first step in mobilizing public opinion and health professionals on learning disabilities, first and foremost dyslexia. Then, the law of February 11, 2005 defined dyslexia as a handicap, opening the way to specific support measures, particularly in schools (see box). Thanks to this spotlight, the vast majority of children suffering from this disorder can now be diagnosed.
For many adults in their thirties, dyslexia screening was offered less often when they were children. Some were able to benefit from it, and continue to be followed according to their needs today. For the others, the disorder was recognized late, when they had already done all their schooling. Some parents even discovered their dyslexia only when their children were screened.
The lack of support during youth has led to sometimes complicated personal and professional situations, with, in the most extreme cases, people suffering from illiteracy, as explained by Magali Dussourd-Deparis, speech therapist in Colmar and responsible for mission to fight against illiteracy of the National Foundation of speech therapists.
Magali Dussourd-Deparis, speech therapist in Colmar: “In the last 10-15 years, the care of dyslexia has been relatively well done (…) but some of the people not taken care of can find themselves in a situation of illiteracy”
*Name has been changed at the request of the witness
Eight months for an appointment
However, adult care is still insufficient. According to Laetitia Branciard, head of the education department of the French Federation of Dys, and trainer at the National School of Agronomy on learning disabilities, the inequalities in access to speech therapists are significant from one region to another.
In addition, waiting times are sometimes very long for adults. Work that it has carried out in Picardy, for example, has shown that an adult who wishes to make an appointment waits at least eight months or is simply not taken care of.
Laetitia Branciard, responsible for the education center of the French Federation of Dys: “In many departments, speech therapists do not accept to take on adults because they are already overloaded with children…”
Adults no longer have access to referral centres. Attached to the University Hospitals, these places for diagnosis and follow-up are key in the support strategy for dyslexics, but they are only accessible to patients under the age of 15. Beyond that, the person must follow a different procedure to obtain screening, by alerting their doctor, who will refer them or not to a specialist.
Laetitia Branciard “As far as screening is concerned, children can go to referral centres. They work until the age of 15. For adults there is no possibility of care at this level…»
Adapt practices to adults
Another difficulty: adapting the practices of speech therapists to recently diagnosed adults. The management is indeed very different from that of children and adults diagnosed during childhood. It is more personalized, because it must take into account the patient’s achievements. Magali Dussourd-Deparis believes that it is never too late to offer care to an adult, but the speech therapist will have to do a lot of work to take into account the specificities of this patient.
Magali Dussourd-Deparis : “The difficulty is to determine where the person is in reading, and sometimes, we will pass certain notions and we will put in place compensations. It is really a different type of care, because it is based on requests from adults…”
To better support these adults, the development of compensation strategies with the practitioner is at the heart of the care pathway. Instead of working on acquiring the notions of reading and writing, speech therapists will insist on the technological tools available to adults to make their daily life easier, especially at work.
Because it is precisely in the context of professional life that the impacts are most felt for adults with dyslexia. Positive point: beyond sometimes dramatic individual situations, Laetitia Branciard believes that companies are increasingly aware of the problems of dyslexia. And technology offers real opportunities, making it possible to arrange workstations according to needs, for example by installing voice dictation software.
Dyslexia better taken into account and better diagnosed
In 2001, a interdepartmental project addresses language and learning disabilities. The goal: to develop an action plan, “the language plan”, for better care of dysphasic and dyslexic children. The improvement of the diagnosis and the need for it to intervene quickly are at the heart of the concerns. “The quality of the identification, screening and diagnosis of children with a specific language disorder is an essential and decisive step in defining the best conditions for individualized care”, underlines the report published on this occasion. .
To achieve this objective, school teachers and health professionals were invited to join forces. A provision taken up by the Academy of Medicine: “The National Academy of Medicine recommends strengthening the links and generalizing close collaboration between medical and educational skills in order to detect neurocognitive disorders as soon as possible and more specifically, specific learning disabilities.
In 2005, the law on disability defines it as a “limitation of activity or restriction of participation in life in society suffered in an environment by a person due to a substantial, lasting or definitive alteration of one or more functions physical, sensory, mental, cognitive or psychic”. Dyslexia is included in the scope of the law as a cognitive disability in its own right, which makes it possible to put in place measures for young people, for example by granting them a third time to do their school work.
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