Update on European Autism Information System Project

Background: There is no Europe-wide epidemiological information on prevalence or financial burden of ASD, due to a lack of methodological consistency. There is also inconsistency in early diagnosis and therefore access to appropriate intervention and treatment in many EU Member States.

Objectives: The European Autism Information System (EAIS) Project proposes to develop harmonised tools for early detection, systematic data collection, prevalence and financial burden estimates, for use across Europe. A distance learning platform will be created to make these tools available.

Methods: Partners from the EAIS project, representing six EU Member States, reviewed methods and tools currently used for early detection, systematic data collection, prevalence and financial burden estimation and have consulted with ASD organisations across Europe to develop harmonised tools, taking into account cultural and language variation. CDC is working with the EAIS project in an advisory role and provides important lessons from their ASD surveillance experience.

Results: Harmonised tools developed by the EAIS project include: systematic data collection system and estimation of ASD prevalence in Europe protocol.  Tools still being developed include protocol for estimation of financial burden of ASD in Europe and early diagnosis video tool.  The need for widespread consultation to encompass regional, cultural and linguistic variation, financial support for training of personnel and validation of the tools in pilot areas have all been highlighted.

Conclusions: Harmonised tools for early detection, systematic data collection, prevalence and financial burden estimates are necessary to assess the current ASD situation in Europe and monitor trends in the future. The EAIS project is concluding the development of such tools. These tools should now be validated in pilot areas across Europe.