Early diagnosis of autism spectrum disorders: what are the challenges at the territorial level? [FOCUS ON FRANCE]

France has approximately 700,000 people with autism spectrum disorders (ASD), including 100,000 children. The country has accumulated a significant backlog in the diagnosis and management of this disorder compared to its European and Canadian neighbors. In 2018, through the “National Strategy for Autism 2018-2022”, the government has set itself five priorities, including the desire “to intervene as early as possible” in the diagnosis of children with ASD. Alcimed looks back at its support for ARSs in the organization of patient pathways and the intervention of health and medico-social professionals in the field of ASDs.

The structuring of a coordinated path for the early diagnosis of autism spectrum disorders

Organize the children’s journey around the tri-level path: identification – diagnosis – early intervention.

An organization based on a graduated approach to the diagnosis of autistic spectrum disorders in children aged 0 to 6 years is being implemented in different areas of France, with the aim of reducing misdiagnosis and the occurrence of over-disability. This coordinated approach is based on identifying children as early as possible, carrying out various assessments to enable a diagnosis to be made, and interventions to begin treatment. It is based on three interdependent levels of intervention.

The organization of level 2 is being rolled out particularly at the regional level and is fully in line with the desire to accelerate and optimize access to diagnosis for children aged 0 to 6 with signs of ASD. For example, the creation of platforms dedicated to the diagnosis of simple cases in children under 6 years of age has been carried out by the ARSs in certain regions of France such as Normandy and the Grand East Region.

This new organization notably relieves the congestion of the Autism Resource Centers at level 3, which are now refocusing on the diagnosis of complex situations. It thus reduces the waiting time for families to access the diagnosis and allows early interventions to be quickly set up, prior to the actual care of the children, which will be offered once the diagnosis has been made.

Within this framework, in order to harmonize practices around the diagnosis of autism spectrum disorders on the national territory, the ARSs, supported by the 3rd line Autism Resource Centers, support the 2nd line structures (CAMSP, CMP, CMPP, autism diagnosis platforms, etc.) in their territory in defining their organizational and functional modalities based on the HAS recommendations of good professional practices (RBPP).

Level 2 maturity in the territories

Several findings related to the diagnosis of Autism Spectrum Disorders shared nationally, with respect to returns from the territories

– Diagnoses of ASD are still late. On average, children are diagnosed around the age of 6 years, whereas a diagnosis could, in the majority of cases, be stabilized between 18 and 30 months.

– Diagnostic pathways are sometimes chaotic due to a lack of training of level 1 actors and a lack of coordination between level 2 actors.

– Finally, interventions and diagnostic procedures do not always follow the RBPPs and are often not harmonized between the different level 2 structures that may be involved.

Alcimed’s feedback on the conduct of an evaluation of level 2 diagnostic structures organized in platforms

In 2019, Alcimed evaluated 14 platforms dedicated to the “simple” diagnosis of children aged 0 to 6 years with Autism Spectrum Disorder with different level 2 structures. This evaluation highlights three key challenges:

1. Harmonizing diagnostic approaches between professionals (pediatricians, child psychiatrists in particular) and decompartmentalizing the health and medico-social sectors in order to arrive at a differential diagnosis based on the most comprehensive approach possible and on a set of multidisciplinary assessments (psychology, psychomotricity, pediatrics’, verification of ENT-type co-morbidities, etc.).

2. In addition to making the diagnosis, ensuring rapid care of the child diagnosed by level 2 structures or independent professionals, despite the difficulties linked to the lack of space in care structures such as SESSAD, etc., and proposing early interventions during the diagnostic approach to help the child as early as possible.

3. Mobilizing the CRAs to train front-line actors in identifying the first signs of ASD, but also to support second-line actors in making diagnoses, to avoid diagnostic wanderings or referring children to long waiting lists for CRAs.

These issues have been identified at a time when the structure of the ASD pathway must now be more broadly articulated with neurodevelopmental disorders, of which autism is one. In order to provide a structured response to the entire field of neurodevelopmental disorders, it is planned to set up coordination and orientation platforms (PCO), and this evaluation also made it possible to identify level 2 structures capable of carrying future departmental PCOs.

The organization of the coordinated and graduated pathway for the diagnosis of autism spectrum disorders in children aged 0 to 6 years is being structured in all the territories around three priority areas: early diagnosis, coordination between the actors of the pathway and the tools they have at their disposal. These three areas of work are now being extended to all neurodevelopmental disorders (NDD). It is up to the players, in conjunction with their guardians, to get moving in order to deploy a relevant and coordinated response.

Acronyms and abbreviations

About the authors

Coralie, Consultant in Alcimed’s Public Health Policies team in France
Elsa, Project Manager in Alcimed’s Innovation and Public Policies team in France