Estimating the Burden of Disease for Autism Spectrum Disorders in Spain in 2003 Elena Sa ´nchez-Valle Æ Manuel Posada Æ Ana Villaverde-Hueso Æ Eva Tourin ˜o Æ Marı ´a Jose ´ Ferrari-Arroyo Æ Leticia Boada Æ Marı ´a Concepcio ´n Martı ´n-Arribas Æ Ricardo Canal Æ Joaquı ´n Fuentes-Biggi Published online: 2 June 2007 Ó Springer Science+Business Media, LLC 2007 Abstract Autism Spectrum Disorders (ASD) are lifelong neurodevelopmental disabilities. Burden of Disease is an indicator that provides important information on health status and outcomes such as premature mortality and dis- ability. In order to estimate the burden of disease of ASD in the Spanish population during 2003, we followed the pro- cedures used in the WHO Global Burden of Disease Study. ASD generated 43,928 Disability Adjusted Life Years (DALY) in Spain in 2003, from which 33,797 were attributable to Autistic Disorder and 10,131 were caused by Asperger’s Disorder and Pervasive Developmental Disor- der-Not Otherwise Specified. DALY could be a useful tool for health policy makers for setting health service priori- ties, allocating available resources effectively and provid- ing a comparable measure of output for early intervention. Keywords Pervasive developmental disorders  Autistic spectrum disorders  Burden of disease  Disability adjusted life years  DALY  Epidemiology Autism Spectrum Disorders (ASD) are a group of neuro- developmental conditions with a lifelong developmental disability (Volkmar, 1998). According to the most widely used classification, the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV, American Psychiatric Asso- ciation, 1994), the Pervasive Developmental Disorders (PDD) category includes five conditions: Autistic Disorder, PDD-Not Otherwise Specified (PDD-NOS), Asperger’s Disorder, Rett’s Disorder and Childhood Disintegrative Disorder. The aetiology of ASD is still unknown, although evidence from families and twin studies has consistently suggested a strong genetic influence (Cook, 1998) probably with multiple interacting both genetic and environmental factors in many cases (Hertz-Picciotto et al., 2006), except for Rett’s Disorder, attributable to mutations in the gene encoding methyl-CpG-binding protein-2 (MECP2) in most affected individuals. ASD are characterized by a triad of impairments in social interaction, verbal and nonverbal communication and a lack of flexibility in thinking and behaviour (Roberts, 2003). Autism is not a learning dis- ability, but people with autism often have a learning dis- ability: 70% of the people with autistic disorder have some degree of learning disability and around 7% of the cases with PDD-NOS have from mild to moderate learning dis- ability. People with Asperger’s Disorder have an intellec- tual functioning within the normal range (Fombonne, 1999; Chakrabarti & Fombonne, 2001, 2005). Autism diagnosis is made on the basis of observed behaviour and although diagnosis is not usually definitive until 5 years of age or more in the case of autistic disorder (Barbaresi, Katusic, Colligan, Weaver, & Jacobsen, 2005) and the Asperger’s disorder diagnosis is not usually con- firmed until 11 years (Howlin & Asgharian, 1999), first symptoms become visible since 18 months (Chakrabarti & Fombonne, 2005). E. Sa ´nchez-Valle  M. Posada (&)  A. Villaverde-Hueso  E. Tourin ˜o  M. J. Ferrari-Arroyo  L. Boada  M. C. Martı ´n-Arribas Rare Diseases Research Institute, Instituto de Salud Carlos III, Sinesio Delgado, 6, Madrid 28029, Spain e-mail: mposada@isciii.es R. Canal Department of Psycology, University of Salamanca, Salamanca, Spain J. Fuentes-Biggi Policlı ´nica Guipu ´zcoa, Gautena, San Sebastian, Basque Country, Spain 123 J Autism Dev Disord (2008) 38:288–296 DOI 10.1007/s10803-007-0393-1