El trastorno del espectro autista en la Unión Europea (ASDEU)

  1. Posada de la Paz, Manuel 1
  2. Canal-Bedia, Ricardo 2
  1. 1 Instituto de Salud Carlos III
    info

    Instituto de Salud Carlos III

    Madrid, España

    ROR https://ror.org/00ca2c886

  2. 2 Universidad de Salamanca
    info

    Universidad de Salamanca

    Salamanca, España

    ROR https://ror.org/02f40zc51

Journal:
Siglo Cero: Revista Española sobre Discapacidad Intelectual

ISSN: 2530-0350

Year of publication: 2021

Volume: 52

Issue: 2

Pages: 43-59

Type: Article

DOI: 10.14201/SCERO20215224359 DIALNET GOOGLE SCHOLAR lock_openOpen access editor

More publications in: Siglo Cero: Revista Española sobre Discapacidad Intelectual

Abstract

The improving support services for people with autism spectrum disorder (ASD) and their families in Europe requires knowledge of their epidemiological status, as well as the identification of the most effective experiences and procedures for detection, diagnosis, treatment and support that are most valued by the recipients of these services. The project “Autism Spectrum Disorder in the European Union” (ASDEU) has promoted between 2014 and 2018 a set of research strategies that have allowed the application of a public health model to ASD focused on prevalence estimation methods, early detection programs and the improvement of diagnosis and early intervention. This article presents a summary of the results obtained, as well as the main conclusions. It highlights the need to set up a comprehensive system based on ASD population registries, which provides a systematic information about the ASD prevalence in Europe; likewise, the article proposes to strengthen detection strategies to make it more systematic at a population level; to improve diagnostic processes so that they are faster, include information on the support needs of the person and incorporate families; and to promote early intervention with greater participation of families and linkage to the child’s regular setting.

Bibliographic References

  • ALTIERE, M. J. y KLUGE, S. von. (2009). Searching for acceptance: challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disability, 34(2), 142-152. https://doi.org/10.1080/13668250902845202
  • APA. (2013). Diagnostic and Statistical Manual of Mental Disorders, 5th edn (1.a ed., vol. 1-1). American Psychiatric Publishing.
  • BEJARANO-MARTÍN, Á., CANAL-BEDIA, R., MAGÁN-MAGANTO, M., FERNÁNDEZ-ÁLVAREZ, C., CILLEROS-MARTÍN, M. V., SÁNCHEZ-GÓMEZ, M. C., GARCÍA-PRIMO, P., ROSE-SWEENEY, M., BOILSON, A., LINERTOVÁ, R., ROEYERS, H., VAN DER PAELT, S., SCHENDEL, D., WARBERG, C., CRAMER, S., NARZISI, A., MURATORI, F., SCATTONI, M. L., MOILANEN, I., … y POSADA DE LA PAZ, M. (2019). Early detection, diagnosis and intervention services for young children with Autism Spectrum Disorder in the European Union (ASDEU): family and professional perspectives. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-019-04253-0
  • BEJARANO-MARTÍN, Á., CANAL-BEDIA, R., MAGÁN-MAGANTO, M., FERNÁNDEZ-ÁLVAREZ, C., LÓA-JÓNSDÓTTIR, S., SAEMUNDSEN, E., VICENTE, A., CAFÉ, C., RASGA, C., GARCÍA-PRIMO, P. y POSADA, M. (2020). Efficacy of focused social and communication intervention practices for young children with autism spectrum disorder: a meta-analysis. Early Childhood Research Quarterly, 51, 430-445. https://doi.org/10.1016/j.ecresq.2020.01.004
  • BISHOP, S. L., RICHLER, J., CAIN, A. C. y LORD, C. (2007). Predictors of perceived negative impact in mothers of children with Autism Spectrum Disorder. American Journal on Mental Retardation, 112(6), 450-461. https://doi.org/10.1352/0895-8017(2007)112[450:POPNII]2.0.CO;2
  • BLUTH, K., ROBERSON, P. N. E., BILLEN, R. M. y SAMS, J. M. (2013). A stress model for couples parenting children with Autism Spectrum Disorders and the introduction of a Mindfulness intervention. Journal of Family Theory and Review, 5(3), 194-213. https://doi.org/10.1111/jftr.12015
  • BOILSON, A. M., STAINES, A., RAMÍREZ, A., POSADA, M. y SWEENEY, M. R. (2016). Operationalisation of the European protocol for autism prevalence (EPAP) for Autism Spectrum Disorder prevalence measurement in Ireland. Journal of Autism and Developmental Disorders, 46(9), 3054-3067. https://doi.org/10.1007/s10803-016-2837-y
  • CANU, D., VAN DER PAELT, S., CANAL-BEDIA, R., POSADA, M., VANVUCHELEN, M. y ROEYERS, H. (2020). Early non-social behavioural indicators of autism spectrum disorder (ASD) in siblings at elevated likelihood for ASD: a systematic review. European Child and Adolescent Psychiatry. https://doi.org/10.1007/s00787-020-01487-7
  • CAÑETE, M., SÁNCHEZ, M.a C. y CORCHO, P. (2018). Necesidades de apoyo percibidas por padres de niños con autismo entre 2-5 años, en México. Siglo Cero, 49(3), 75-93. https://doi.org/10.14201/scero20184937593
  • CHIRI, G. y WARFIELD, M. E. (2012). Unmet need and problems accessing core health care services for children with Autism Spectrum Disorder. Maternal and Child Health Journal, 16(5), 1081-1091. https://doi.org/10.1007/s10995-011-0833-6
  • COMISIÓN EUROPEA. (2020). Servicio de Información Comunitario sobre Investigación y Desarrollo (CORDIS). https://cordis.europa.eu/es. Acceso el 01/06/2020.
  • CRANE, L., BATTY, R., ADEYINKA, H., GODDARD, L., HENRY, L. A. y HILL, E. L. (2018). Autism diagnosis in the United Kingdom: perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761-3772. https://doi.org/10.1007/s10803-018-3639-1
  • CRANE, L., CHESTER, J. W., GODDARD, L., HENRY, L. A. y HILL, E. (2016). Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153-162. https://doi.org/10.1177/1362361315573636
  • DELOBEL-AYOUB, M., SAEMUNDSEN, E., GISSLER, M., EGO, A., MOILANEN, I., EBELING, H., RAFNSSON, V., KLAPOUSZCZAK, D., THORSTEINSSON, E., ARNALDSDÓTTIR, K. M., ROGE, B., ARNAUD, C. y SCHENDEL, D. (2020). Prevalence of Autism Spectrum Disorder in 7-9-year-old children in Denmark, Finland, France and Iceland: a population-based registries approach within the ASDEU Project. Journal of Autism and Developmental Disorders, 50(3), 949-959. https://doi:10.1007/s10803-019-04328-y
  • DIVAN, G., VAJARATKAR, V., DESAI, M. U., STRIK‑LIEVERS, L. y PATEL, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with Autism Spectrum Disorder in Goa, India. Autism Research, 5(3), 190-200. https://doi.org/10.1002/aur.1225
  • FUENTES, J., BASURKO, A., ISASA, I., GALENDE, I., MUGUERZA, M. D., GARCÍA‑PRIMO, P., GARCÍA, J., FERNÁNDEZ‑ÁLVAREZ, C. J., CANAL‑BEDIA, R. y POSADA DE LA PAZ, M. (2020). The ASDEU autism prevalence study in northern Spain. European Child and Adolescent Psychiatry. https://doi.org/10.1007/s00787-020-01539-y
  • HAYES, S. A. y WATSON, S. L. (2013). The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642. https://doi.org/10.1007/s10803-012-1604-y
  • HEPBURN, S. L., DIGUISEPPI, C., ROSENBERG, S., KAPARICH, K., ROBINSON, C. y MILLER, L. (2008). Use of a teacher nomination strategy to screen for autism spectrum disorders in general education classrooms: a pilot study. Journal of Autism and Developmental Disorders, 38(2), 373-382. https://doi.org/10.1007/s10803-007-0404-2
  • HODGETTS, S., ZWAIGENBAUM, L. y NICHOLAS, D. (2015). Profile and predictors of service needs for families of children with autism spectrum disorders. Autism, 19(6), 673-683. https://doi.org/10.1177/1362361314543531
  • HOWLIN, P., SAVAGE, S., MOSS, P., TEMPIER, A. y RUTTER, M. (2013). Cognitive and language skills in adults with autism: a 40-year follow-up. Journal of Child Psychology and Psychiatry, n/a–n/a. https://doi.org/10.1111/jcpp.12115
  • ISKROV, G., DECHEVA, G., POPOVA, E., STEFANOV, R. y POSADA DE LA PAZ, M. (2018). Prevalence study on autism spectrum disorders in Bulgaria. Redki Bolesti i Lekarstva Siratsi, 9(2), 8-12. [In Bulgarian]. doi: 10.36865/2018.v9i2.6
  • KOGAN, M. D., STRICKLAND, B. B., BLUMBERG, S. J., SINGH, G. K., PERRIN, J. M. y DYCK, P. C. van. (2008). A national profile of the health care experiences and family impact of Autism Spectrum Disorder among children in the United States, 2005-2006. Pediatrics, 122(6), e1149-e1158. https://doi.org/10.1542/peds.2008-1057
  • KRAUSS, M. W., GULLEY, S., SCIEGAJ, M. y WELLS, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329-339. https://doi.org/10.1352/0047-6765(2003)41<329:ATSMCF>2.0.CO;2
  • LIPTAK, G. S., STUART, T. y AUINGER, P. (2006). Health care utilization and expenditures for children with autism: data from U.S. national samples. Journal of Autism and Developmental Disorders, 36(7), 871-879. https://doi.org/10.1007/s10803-006-0119-9
  • MAGÁN-MAGANTO, M., BEJARANO-MARTÍN, Á., FERNÁNDEZ-ÁLVAREZ, C., NARZISI, A., GARCÍA-PRIMO, P., KAWA, R., POSADA, M. y CANAL-BEDIA, R. (2017). Early detection and intervention of ASD: a European overview. Brain Sciences, 7(12). https://doi.org/10.3390/brainsci7120159
  • MAGIATI, I., TAY, X. W. y HOWLIN, P. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: a systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34(1), 73-86. https://doi.org/10.1016/j.cpr.2013.11.002
  • MODABBERNIA, A., VELTHORST, E. y REICHENBERG, A. (2017). Environmental risk factors for autism: an evidence-based review of systematic reviews and meta-analyses. Molecular Autism, 8, 13. https://doi.org/10.1186/s13229-017-0121-4
  • MOH, T. A. y MAGIATI, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 6(1), 293-303. https://doi.org/10.1016/j.rasd.2011.05.011
  • NARZISI, A., COSTANZA, C., UMBERTO, B. y FILIPPO, M. (2014). Non-pharmacological treatments in Autism Spectrum Disorders: an overview on early interventions for pre-schoolers. Current Clinical Pharmacology, 9(1), 17-26.
  • NARZISI, A., POSADA, M., BARBIERI, F., CHERICONI, N., CIUFFOLINI, D., PINZINO, M., ROMANO, R., SCATTONI, M. L., TANCREDI, R., CALDERONI, S. y MURATORI, F. (2018). Prevalence of Autism Spectrum Disorder in a large Italian catchment area: a school-based population study within the ASDEU project. Epidemiology and Psychiatric Sciences, 6, 29, e5. https://doi: 10.1017/S2045796018000483
  • ODOM, S. L., BOYD, B. A., HALL, L. J. y HUME, K. (2010). Evaluation of comprehensive treatment models for individuals with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 40(4), 425-436. https://doi.org/10.1007/s10803-009-0825-1
  • OSBORNE, L. A., MCHUGH, L., SAUNDERS, J. y REED, P. (2008). A possible contra-indication for early diagnosis of Autistic Spectrum Conditions: impact on parenting stress. Research in Autism Spectrum Disorders, 2(4), 707-715. https://doi.org/10.1016/j.rasd.2008.02.005
  • POSADA, M. y RAMÍREZ, R. (2008). Proposal for the European protocol for autism spectrum disorder prevalence (EPAP). http://ec.europa.eu/health/ph_information/dissemination/diseases/docs/autism6.pdf
  • ROBINS, D. L., CASAGRANDE, K., BARTON, M., CHEN, C. M. A., DUMONT-MATHIEU, T. y FEIN, D. (2014). Validation of the modified checklist for autism in Toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37-45. https://doi.org/10.1542/peds.2013-1813
  • ROBINS, D. L., FEIN, D., BARTON, M. L. y GREEN, J. A. (2001). The modified checklist for autism in Toddlers: an initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31(2), 131-144.
  • SACKETT, D. L., STRAUS, S. E., RICHARDSON, W. S., ROSENBERG, W. y HAYNES, R. B. (2000). Evidence-based medicine: how to practice and teach EBM. Churchill Livingstone.
  • THOMAS, R. E., SPRAGINS, W., MAZLOUM, G., CRONKHITE, M. y MARU, G. (2016). Rates of detection of developmental problems at the 18-month well-baby visit by family physicians’ using four evidence-based screening tools compared to usual care: a randomized controlled trial. Child: Care, Health and Development, 42(3), 382-393. https://doi.org/10.1111/cch.12333
  • WANG, L., MANDELL, D. S., LAWER, L., CIDAV, Z. y LESLIE, D. L. (2013). Healthcare service use and costs for Autism Spectrum Disorder: a comparison between medicaid and private insurance. Journal of Autism and Developmental Disorders, 43(5), 1057-1064. https://doi.org/10.1007/s10803-012-1649-y
  • WONG, C., ODOM, S. L., HUME, K. A., COX, A. W., FETTIG, A., KUCHARCZYK, S., BROCK, M. E., PLAVNICK, J. B., FLEURY, V. P. y SCHULTZ, T. R. (2015). Evidence-based practices for children, youth, and young adults with Autism Spectrum Disorder: a comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1951-1966. https://doi.org/10.1007/s10803-014-2351-z
  • ZABLOTSKY, B., COLPE, L. J., PRINGLE, B. A., KOGAN, M. D., RICE, C. y BLUMBERG, S. J. (2017). Age of parental concern, diagnosis, and service initiation among children with Autism Spectrum Disorder. American Journal on Intellectual and Developmental Disabilities, 122(1), 49-61. https://doi.org/10.1352/1944-7558-122.1.49
Data source: Dialnet