Rapid changes in prevalence of Autism Spectrum Disorders (ASD), from 4/10,000 to 66/ 10000 children in the last 20 years, have alerted the scientific community. Although the criteria for and awareness of autism definitions have changed over the years, these changes do not explain major differences in reported prevalence over time. One of the aims of the EAIS project, co-funded by the European Commission, is to design a model for a harmonized and valid prevalence study to be used in European countries where insufficient information about prevalence is available. Objectives:
To design a harmonized European Protocol for Autism Prevalence (EPAP).
A general strategy including steps such as a general survey on ASD services and data accessibility, expert consultations, a checklist and a pilot feasibility study have been designed. This whole process has produced different drafts and reviews with several expert inputs until the final document has been achieved.
It is suggested to use a cross-sectional study, targeting children living within the participant European regions with age range from 6 to 10 years. The case definition is a child who fits the DSM-IV criteria codes F84.. Education, health and social services, both public and private, as well as parents’ organizations, will be used as sources of information. Case ascertainment procedure will be organized in three different stages such as identification of potential cases, first approach to diagnosis and confirmation of the diagnosis. Specific details of the study as well as difficulties and limitations are also discussed. Eleven European countries have already shown their interest in participating in the pilot phase of this strategy.
Due to European countries’ different cultures, traditions and service provider organizations, a pilot feasibility study is needed in order to test the real possibilities of developing the prevalence estimate strategy, to guarantee a successful outcome.