Autism and neurodevelopmental disorders. soon reference network in health records

This Tuesday, Emmanuel Macron is announcing a new strategy for neurodevelopmental disorders as part of a trip to Autism House.

Autism strategies have become strategies for neurodevelopmental disorders. Why has the word “autism” disappeared? Some associations fear a loss of visibility for autism and a dilution of resources…

Fadila Khattabi – Before Emmanuel Macron’s desired first strategy in 2018, there was autism “Thoughtless of the Republic” use his words. Since then, the mobilization of public bodies for diagnosis and treatment has never been stronger. Therefore, there is clearly no desire to hide autism spectrum disorders.
Today, the President of the Republic will publish the second strategy for 2023-2027. It is estimated that one in six French people suffer from neurodevelopmental disorders (NDD), such as DYS disorders (dyslexia, dyspraxia), autism or attention disorders. The prevalence of these disorders has been noted for several years and is increasing. Extending this strategy to all neurodevelopmental disorders also seems more consistent to strengthen research. In addition, half of autistic people have another co-occurring disorder, so it seems necessary to offer a global approach to providing quality care. In no case can we talk about disconnection. This afternoon the President will announce an envelope of €680 million for this strategy, up from the previous one of €550 million.

Research is a key focus of this new strategy. Can you elaborate on upcoming plans?

Today, thanks to the efforts of the previous strategy and the mobilization of scientists, France has become the leading European country for research on neurodevelopmental disorders. 700 researchers are working on these topics, divided into 120 teams. We have to continue this dynamic, and the president of the republic wants to create a sixth center of excellence in the university hospital. These efforts are critical because some determinants of neurodevelopmental disorders remain unknown. Today, researchers are particularly interested in environmental factors. The new group, called Marianna, the first in Europe, will look at their effects by following pregnant women from the third trimester until the child is 6 years old. The ultimate goal is to be able to develop preventive measures based on the results achieved.

The previous strategy already focused on early detection of children aged 0-6 years. Despite progress, not all families have access to it. How to facilitate this demonstration?

In 2019, only 150 children were diagnosed by coordination and referral platforms, which were just starting. Today there are 55,000. But we want to go further, and the President of the Republic announced last April that from 2024 the creation of a public service for the identification and early diagnosis of all people with disabilities, therefore free of charge. The interventions will then be covered by Health Insurance. In early childhood services—doctors, pediatricians, social workers, teachers—we want to mobilize all those who work with children and families to succeed in this great turnaround.
The health record is also a tool to provide this first level of disorder identification. A simplified grid for identifying development gaps should soon be included in this notebook, as planned by Elysée. At 6 months, the child sits, claps, babbles. Like a weight curve or vaccine monitoring, we need to be able to carefully and accurately study this development in every mandatory health examination. This first identification will allow children to be referred to coordination and referral platforms as soon as possible in case of doubt. This is a big step forward and an important issue. Early diagnosis allows rapid treatment and avoids unnecessary disability. The aim is also to end the medical wanderings of families who, in times of need, sometimes consult quacks and spend thousands of euros on inappropriate care.

Are you saying that France hasn’t completely turned the page on “non-consensual” psychoanalytic treatment?

A turning point has been reached with the first strategy for autism and neurodevelopmental disorders. Here again, this requires training. We need to ensure that training modules take into account new scientific findings to avoid psychoanalytical misinterpretations that make parents feel guilty. This will be especially the work of the new inter-ministerial delegate, Etienne Pott, a doctor of public health. He must also ensure that all new projects comply with the latest best practice recommendations.

Screening is the first step before an obstacle course to find appropriate care. How can screened children find a response to their needs when speech and occupational therapists are in short supply and early intervention services are still rare?

There is a problem of attractiveness of these professions. There are not enough trained psychologists, occupational therapists and speech therapists. We are working with several ministries to increase training places in medical and social professions. We propose that provinces responsible for training enter into contracts as part of a skills investment plan. Training will also be offered to parents and guardians to support the family framework. Training is the cornerstone of this strategy.

What about school? Adapted classes are still few and far between, and classes in regular settings are sometimes limited to a few hours. Many teachers also feel helpless and sometimes overwhelmed.

Since 2018, we have deployed 410 adapted classrooms and feedback from parents has been positive. Tomorrow, Emmanuel Macron aims to double this number so that autistic students in kindergarten, primary, middle and high school can complete their education. In a normal environment, including all disabilities, 460,000 children with 136,000 accompanying persons (AESH) are now being educated in the republican school. Now we need to improve the quality of their education thanks to the presence of medical and social specialists in the school. I know that some teachers can be unhelpful at times, which is why we will be increasing the number of resource teachers in the institutions.

Administrative complexity is another challenge. Exchanges with MDPHs remain very difficult and complex…

MDPHs in some areas are overburdened with files, particularly due to the increase in early diagnosis. Some families are troubled by late notices, waiting several months. We are working to arrange a physical appointment for families who wish to do so during their first contact with MPDH. There is also a “course referee” that they can identify, interview and contact to answer their questions. We want to make a more human connection with MDPHs. The new Autism House, which the President of the Republic is visiting today, has also been designed as an online resource for parents, professionals and interested parties.