ASD Services in Europe: A Pilot experience of the EAIS project

Background: The “European Autism Information System – EAIS” is a project funded by DG SANCO for the period January-2005 to June-2008. It was approved after the European Commission stated in February 2005 that more complex monitoring systems were needed to address changes in the ASD prevalence. One of the aims of this project is to design a prevalence study duly harmonized for most of the European countries/regions.  Objectives: In order to prepare the prevalence study, a questionnaire (Q-EAIS) focusing on ASD services and data accessibility was designed. 

Methods: The Q-EAIS has a total of 65 different questions related to ASD diagnosis (19), public health care systems (9), educational systems (17), social services (9), parents’ organizations services (6) and data accessibility (5). This survey was sent to all EAIS partners (25). Respondents were in academic institutions and were also related with ASD services.

Results: The Q-EAIS was completed by 11 partners (Portugal, France, Malta, Bulgaria, Scotland Highland Region, Poland, Czech Republic, Italy, England, Denmark and Spain). Eleven out of 21 partner countries (52%) responded to date.  Seven responders referred to the whole country 4 were regional. Preliminary descriptive analysis indicate differences among countries regarding detection, diagnosis, initiation of compulsory education, services provided and data accessibility concerning ASDs.

Conclusions: The Q-EAIS provides a preliminary picture of the ASD services and data accessibility in several European countries and facilitates a more accurate understanding about the feasibility of a harmonized European prevalence study. Conducting a cross-country prevalence study of ASDs based on existing service system data will be challenging.  Pilot efforts are needed to determine if combining multiple sources of information across service providers will provide a comparable picture of the prevalence and characteristics of the ASD population in a defined time period and age across countries with diverse service systems.