Autism Spectrum Disorder (ASD) is one of the neurodevelopmental disorders described in the
DSM5 (American Psychiatric Association, 2013). This heterogeneous syndrome appears in
childhood and persists throughout life with different developments from one individual to
another. It is clinically characterized by the combination of deficits in social
communication with restricted and repetitive behaviors. The prevalence of ASD has seen a
significant increase over the last 10 years, with estimates varying greatly from one country
to another, ranging from 4.2/1,000 in France to 31/1,000 in Iceland. In France, prevalence
has been estimated by two child disability registers set up in the departments of
Haute-Garonne (RHE31), Isère, Savoie, and Haute-Savoie (RHEOP), but there is no
epidemiological surveillance system to estimate the national prevalence of ASD in the general
population. However, the production of reliable epidemiological data at the national and
territorial levels is essential for addressing the needs of individuals with ASD and for
evaluating public policies.
The main objective of our project is to estimate the annual prevalence of ASD in children,
adolescents, and young adults at the national and regional levels using medico-administrative
databases (SNDS), to study its evolution over the period 2010-2019 and its geographical
distribution in relation to socio-demographic indicators and healthcare accessibility. Our
secondary objectives are to validate an algorithm for detecting ASD in the National Health
Data System (SNDS) and to estimate the direct medical costs associated with ASD management.
The SNDS databases contain all medical care and treatments reimbursed for Health Insurance
beneficiaries provided in the private or public sector. A case detection algorithm will be
tested and validated on validation samples. Then, the prevalence of ASD will be estimated,
taking into account geographical, socio-economic, and healthcare accessibility indicators, in
order to study the factors associated with the significant disparity in rates observed in
France and abroad. An estimate of direct medical costs will be made from the health insurance
perspective.
Our project therefore proposes the development of reliable indicators on the management of
ASD in France with the aim of providing useful indicators and tools for guiding health and
disability policies in France, promoting the development of appropriate interventions, and
thus contributing to the improvement of the care and support of individuals with ASD as well
as reducing inequalities in access to healthcare for these vulnerable populations.