Fears, Hopes and Demans by Parents of Children With ASD
Abstract The term “autism spectrum disorders” (ASD) designates a set of varying conditions that have in common the presence of difficulties in social communication and restricted and repetitive behaviors. Without denying the relevance of research seeking to understand the etiology of this disorder, the implementation of measures to improve the conditions of people with ASD and their families needs to address this disorder from a psycho-social and cultural perspective. In this article this condition is addressed from three perspectives: disease, illness and sickness. Specifically, from a group of thirteen families of children with ASD, we aimed to: (1) Identify the process of communicating the diagnosis and providing information (disease). (2) Assess the perceived relationship with professionals of these families (illness). (3) Understand the perceived supports and barriers by parents in addressing the ASD (sickness). By using open and closed questions this study reveals: (1) The need to improve the communication of the diagnosis and the professionals’ training and sensitization. (2) The importance of empowering parents as focus for care and offer support and health and education services in settings as normalized as possible. (3) Increase the support received in the various life domains and continued efforts to promote the social acceptance of this group.
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Alonso-Peña, J. R. (2009). Autismo y Síndrome de Asperger: Guía para familiares, amigos y profesionales (2.ª ed.). Salamanca: Amarú.
American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Washington, DC: American Psychiatric Association.
Arnáiz, J. y Zamora, M. (2012). Detección y evaluación diagnóstica en TEA. En M. A. Martínez y J. L. Cuesta (Comps.), Todo sobre el autismo (pp. 89-132). Tarragona, España: Altaria. Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38 (1), 33-55.
Baron-Cohen, S. (2010). Autismo y Síndrome de Asperger (2.ª ed.). Madrid: Alianza.
Braiden, H. J., Bothwell, J. et al. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16 (4), 377-389.
http://dx.doi.org/10.1080/13575279.2010.498415
Broderick, A. A. (2010). Autismo “Recuperación (a la normalidad)” y las Políticas de la Esperanza. Siglo Cero, 41 (236), 33-64.
Carbone, P. S., Behl, D. D., Azor, V. y Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40 (3), 317-324.
http://dx.doi.org/10.1007/s10803-009-0874-5
Center For Disease Control (2012). Prevalence of autism spectrum disorders - Autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report Surveillance Summary, 61 (3), 1-19.
Comelles, J. M. y Martínez-Hernáez, A. (1993). Enfermedad, cultura y sociedad. Madrid: Eudema.
Confederación Autismo España (2015). Consultado 27 de abril de 2015. Disponible en: http://www.autismo.org.es.
Díaz, E. (2008). El asociacionismo en el ámbito de la discapacidad: Un análisis crítico. Revista Social de Pensamiento Crítico, 2 (2), 1-8.
Engel, G. L. (1977). The need for a new medical model: a challenge for biomedicine. Science, 196 (4286), 129-136.
http://dx.doi.org/10.1126/science.847460
Fabrega, H. (1972). Concepts of disease: logical features and social implications. Perspectives in Biology and Medicine, 15 (4), 583-616.
http://dx.doi.org/10.1353/pbm.1972.0006
Fombonne, E. (2009). Epidemiology of Pervasive Developmental Disorders. Pediatric Research, 65 (6), 591-598.
http://dx.doi.org/10.1203/PDR.0b013e31819e7203
Gárate, C. (2012). Un modelo de atención integral para las personas con TEA. En M. A. Martínez y J. L. Cuesta (Comps.), Todo sobre el autismo (pp. 427-462). Tarragona, España: Altaria.
García, J. J., Domínguez, J. y Pereira, E. (2012). Alteraciones de la sinaptogénesis en el autismo, implicaciones etiopatogénicas y terapéuticas. Revista de Neurología, 54, 41-50.
Good, B. J. (1994). Illness representations in medical anthropology: a reading of the field. En B. J. Good, Medicine, Rationality and Experience. An Anthropological Perspective (pp.112-122). Cambridge: Lewis Henry Morgan Lectures.
Grinker, R. R. (2008). Theme and variation: “The Discovery of the Autism”. En R. R. Grinker, Unstrange Minds. A Father Remaps the World of Autism (pp. 37-66). Cambridge: Icon Books.
Grinker, R. R. (2008). Igloos in India. En R. R. Grinker, Unstrange mind: Remapping the world of autism (pp. 197-214). Cambridge: Icon Books.
Grinker, R. R. (2010). Commentary: On being autistic, and social. Ethos, 38, 172-178.
Hacking, I. (1999). Why ask what? En I. Hacking, The Social Construction of What? (pp. 1-35). Cambridge: Harvard University Press.
http://dx.doi.org/10.1111/j.1548-1352.2010.01087.x
Hodgetts, S., Nicholas, D., Zwaigenbaum, L. y Mcconnell, D. (2013). Parents’ and professionals’ perceptions of family-centered care for children with autism spectrum disorder across service sectors. Social Science y Medicine, 96, 138-146.
http://dx.doi.org/10.1016/j.socscimed.2013.07.012
Kaufman, S. (2010). Regarding the rise in autism: Vaccine safety doubt, conditions of inquiry, and the shape of freedom. Ethos, 38, 8-32.
http://dx.doi.org/10.1111/j.1548-1352.2009.01079.x
King, G., Zwaigenbaum, L., Bates A., Baxter, D. y Rosenbaum, P. (2012). Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome. Child: Care, Health and Development, 38 (6), 817-828.
http://dx.doi.org/10.1111/j.1365-2214.2011.01312.x
Kleinman, A. M. (1988). The meaning of symptoms of disorder. En A. M. Kleinman, The Illness Narrative: Suffering, healing and the human condition (pp. 3-46). Nueva York: Basics Books.
Latta, A., Rampton, T., Rosemann, J., Peterson, M., Mandleco, B., Dyches, T. y Roper,S. (2014). Snapshots reflecting the lives of siblings of children with autism spectrum disorders. Child: Care, Health and Development, 40 (4), 515-524.
http://dx.doi.org/10.1111/cch.12100
Lock, R. H., Bradley, L., Hendricks, B. y Brown, D. B. (2013). Evaluating the success of a parent-professional autism network: Implications for family counselors. The Family Journal, 21 (3), 288-296.
http://dx.doi.org/10.1177/1066480713479321
Mariano, L., Flores, J. A. y Cipriano, C. (2013). Nosotros, los trastornos límite de personalidad. Narrativas y relatos de aflicción. Madrid: Círculo Rojo.
Martínez, M. A. y Bilbao, M. C. (2008). Acercamiento a la realidad de las familias de personas con autismo. Intervención Psicosocial, 17 (2), 215-230.
http://dx.doi.org/10.4321/s1132-05592008000200009
Martínez, M. A. y Cuesta, J. L. (2012). Todo sobre el autismo. Tarragona: Altaria.
Martínez, M. A., Cuesta, J. L., Esteban, N., Lezcano, F., Casado, R., Arnáiz, J. y Pérez De la Varga, L. (2010). Historia y situación actual del movimiento asociativo para las personas con Trastornos del Espectro del Autismo y sus familias. Siglo Cero, 41 (4), 21-96.
Martínez-Hernáez, A. (2008). Antropología médica: teorías sobre la cultura, el poder y la enfermedad. Barcelona: Anthropos.
Merino, M., García, M. I., Martínez, M. A., Olivar, J. S., Arnáiz, J. y De la Iglesia, M. (2010). El acceso a la prestación de asistencia sanitaria de las personas con TEA. Un problema sin resolver. Siglo Cero, 41 (236), 65-77.
Nadesan, M. H. (2005). Constructing autism: a dialectic of biology and culture, nature and mind. En M. H. Nadesan, Constructing Autism: Unravelling the ‘Truth’ and Understanding the Social (pp. 10-23). Nueva York: Routledge.
Ochs, E. y Solomon, O. (2010). Autistic sociality. Ethos, 38, 69-92.
http://dx.doi.org/10.1111/j.1548-1352.2009.01082.x
Ochs, E., Kremer-Sadlik, T., Sirota, K. G. y Solomon, O. (2004). Autism and the social world: An anthropological perspective. Discourse Studies, 6 (2), 147-183.
http://dx.doi.org/10.1177/1461445604041766
Osborne, L. A. y Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12 (3), 309-324.
http://dx.doi.org/10.1177/1362361307089517
Pérez, C. G. y Verdugo, M. Á. (2008). La influencia de un hermano con autismo sobre la calidad de vida familiar. Siglo Cero, 39 (227), 75-90.
Peydró, S. y Rodríguez, V. (2007). El autismo en el siglo xxi: recomendaciones educativas basadas en evidencia. Siglo Cero, 38 (222), 75-94.
Poirier, A. y Goupil, G. (2008). Perception des parents québécois sur l’annonce d’un diagnostic de trouble envahissant du développement. Journal on Developmental Disabilities, 14 (3), 29-39.
Pozo, P., Sarria, E. y Brioso, A. (2010). Contribuciones positivas que las personas con Trastorno del Espectro Autista (TEA) aportan a la familia. En M. Belinchón (Comp.), Investigaciones sobre autismo en español: Problemas y perspectivas (pp. 319-324). Córdoba: CPS-UAM.
Prince, D. E. (2010). An exceptional path: An ethnographic narrative reflecting on autistic parenthood from evolutionary, cultural, and spiritual perspectives. Ethos, 38, 56-68.
http://dx.doi.org/10.1111/j.1548-1352.2009.01081.x
Rivière, A. (1997). Definición, etiología, educación, familia, papel psicopedagógico en el autismo. Curso de desarrollo normal y autismo. Santa Cruz de Tenerife. Disponible en: http://www.uam.es/personal_pdi/psicologia/agonzale/Asun/2006/TrastDsllo/Lecturas/Autismo/RivDslloNorAut1.htm.
Silverman, C. (2008). Fieldwork on another planet: Social science perspectives on the autism spectrum. Biosocieties, 3, 325-341.
http://dx.doi.org/10.1017/S1745855208006236
Sirota, K. G. (2010). Narratives of distinction: Personal life narrative as a technology of the self in the everyday lives and relational worlds of children with autism. Ethos, 38, 93-115.
http://dx.doi.org/10.1111/j.1548-1352.2009.01083.x
Solomon, O. (2008). Language, autism, and childhood: An ethnographic perspective. Annual Review of Applied Linguistics, 28, 150-169.
http://dx.doi.org/10.1017/S0267190508080148
Stoner, J. B., Bock, S. J., Thompson, J. R., Angeell, M. E., Heyl, B. S. y Crowley, E.P. (2005). Welcome to our world: Parent perceptions of interactions between parents of young children with ASD and education professionals. Focus on Autism and Other Developmental Disabilities, 20 (1), 39-51.
http://dx.doi.org/10.1177/10883576050200010401
Tucker, V. y Schwartz, I. (2013). Parents’ perspectives of collaboration with school professionals: Barriers and facilitators to successful partnerships in planning for students with ASD. School Mental Health, 5 (1), 3-14.
ttp://dx.doi.org/10.1007/s12310-012-9102-0
American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Washington, DC: American Psychiatric Association.
Arnáiz, J. y Zamora, M. (2012). Detección y evaluación diagnóstica en TEA. En M. A. Martínez y J. L. Cuesta (Comps.), Todo sobre el autismo (pp. 89-132). Tarragona, España: Altaria. Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38 (1), 33-55.
Baron-Cohen, S. (2010). Autismo y Síndrome de Asperger (2.ª ed.). Madrid: Alianza.
Braiden, H. J., Bothwell, J. et al. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16 (4), 377-389.
http://dx.doi.org/10.1080/13575279.2010.498415
Broderick, A. A. (2010). Autismo “Recuperación (a la normalidad)” y las Políticas de la Esperanza. Siglo Cero, 41 (236), 33-64.
Carbone, P. S., Behl, D. D., Azor, V. y Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40 (3), 317-324.
http://dx.doi.org/10.1007/s10803-009-0874-5
Center For Disease Control (2012). Prevalence of autism spectrum disorders - Autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report Surveillance Summary, 61 (3), 1-19.
Comelles, J. M. y Martínez-Hernáez, A. (1993). Enfermedad, cultura y sociedad. Madrid: Eudema.
Confederación Autismo España (2015). Consultado 27 de abril de 2015. Disponible en: http://www.autismo.org.es.
Díaz, E. (2008). El asociacionismo en el ámbito de la discapacidad: Un análisis crítico. Revista Social de Pensamiento Crítico, 2 (2), 1-8.
Engel, G. L. (1977). The need for a new medical model: a challenge for biomedicine. Science, 196 (4286), 129-136.
http://dx.doi.org/10.1126/science.847460
Fabrega, H. (1972). Concepts of disease: logical features and social implications. Perspectives in Biology and Medicine, 15 (4), 583-616.
http://dx.doi.org/10.1353/pbm.1972.0006
Fombonne, E. (2009). Epidemiology of Pervasive Developmental Disorders. Pediatric Research, 65 (6), 591-598.
http://dx.doi.org/10.1203/PDR.0b013e31819e7203
Gárate, C. (2012). Un modelo de atención integral para las personas con TEA. En M. A. Martínez y J. L. Cuesta (Comps.), Todo sobre el autismo (pp. 427-462). Tarragona, España: Altaria.
García, J. J., Domínguez, J. y Pereira, E. (2012). Alteraciones de la sinaptogénesis en el autismo, implicaciones etiopatogénicas y terapéuticas. Revista de Neurología, 54, 41-50.
Good, B. J. (1994). Illness representations in medical anthropology: a reading of the field. En B. J. Good, Medicine, Rationality and Experience. An Anthropological Perspective (pp.112-122). Cambridge: Lewis Henry Morgan Lectures.
Grinker, R. R. (2008). Theme and variation: “The Discovery of the Autism”. En R. R. Grinker, Unstrange Minds. A Father Remaps the World of Autism (pp. 37-66). Cambridge: Icon Books.
Grinker, R. R. (2008). Igloos in India. En R. R. Grinker, Unstrange mind: Remapping the world of autism (pp. 197-214). Cambridge: Icon Books.
Grinker, R. R. (2010). Commentary: On being autistic, and social. Ethos, 38, 172-178.
Hacking, I. (1999). Why ask what? En I. Hacking, The Social Construction of What? (pp. 1-35). Cambridge: Harvard University Press.
http://dx.doi.org/10.1111/j.1548-1352.2010.01087.x
Hodgetts, S., Nicholas, D., Zwaigenbaum, L. y Mcconnell, D. (2013). Parents’ and professionals’ perceptions of family-centered care for children with autism spectrum disorder across service sectors. Social Science y Medicine, 96, 138-146.
http://dx.doi.org/10.1016/j.socscimed.2013.07.012
Kaufman, S. (2010). Regarding the rise in autism: Vaccine safety doubt, conditions of inquiry, and the shape of freedom. Ethos, 38, 8-32.
http://dx.doi.org/10.1111/j.1548-1352.2009.01079.x
King, G., Zwaigenbaum, L., Bates A., Baxter, D. y Rosenbaum, P. (2012). Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome. Child: Care, Health and Development, 38 (6), 817-828.
http://dx.doi.org/10.1111/j.1365-2214.2011.01312.x
Kleinman, A. M. (1988). The meaning of symptoms of disorder. En A. M. Kleinman, The Illness Narrative: Suffering, healing and the human condition (pp. 3-46). Nueva York: Basics Books.
Latta, A., Rampton, T., Rosemann, J., Peterson, M., Mandleco, B., Dyches, T. y Roper,S. (2014). Snapshots reflecting the lives of siblings of children with autism spectrum disorders. Child: Care, Health and Development, 40 (4), 515-524.
http://dx.doi.org/10.1111/cch.12100
Lock, R. H., Bradley, L., Hendricks, B. y Brown, D. B. (2013). Evaluating the success of a parent-professional autism network: Implications for family counselors. The Family Journal, 21 (3), 288-296.
http://dx.doi.org/10.1177/1066480713479321
Mariano, L., Flores, J. A. y Cipriano, C. (2013). Nosotros, los trastornos límite de personalidad. Narrativas y relatos de aflicción. Madrid: Círculo Rojo.
Martínez, M. A. y Bilbao, M. C. (2008). Acercamiento a la realidad de las familias de personas con autismo. Intervención Psicosocial, 17 (2), 215-230.
http://dx.doi.org/10.4321/s1132-05592008000200009
Martínez, M. A. y Cuesta, J. L. (2012). Todo sobre el autismo. Tarragona: Altaria.
Martínez, M. A., Cuesta, J. L., Esteban, N., Lezcano, F., Casado, R., Arnáiz, J. y Pérez De la Varga, L. (2010). Historia y situación actual del movimiento asociativo para las personas con Trastornos del Espectro del Autismo y sus familias. Siglo Cero, 41 (4), 21-96.
Martínez-Hernáez, A. (2008). Antropología médica: teorías sobre la cultura, el poder y la enfermedad. Barcelona: Anthropos.
Merino, M., García, M. I., Martínez, M. A., Olivar, J. S., Arnáiz, J. y De la Iglesia, M. (2010). El acceso a la prestación de asistencia sanitaria de las personas con TEA. Un problema sin resolver. Siglo Cero, 41 (236), 65-77.
Nadesan, M. H. (2005). Constructing autism: a dialectic of biology and culture, nature and mind. En M. H. Nadesan, Constructing Autism: Unravelling the ‘Truth’ and Understanding the Social (pp. 10-23). Nueva York: Routledge.
Ochs, E. y Solomon, O. (2010). Autistic sociality. Ethos, 38, 69-92.
http://dx.doi.org/10.1111/j.1548-1352.2009.01082.x
Ochs, E., Kremer-Sadlik, T., Sirota, K. G. y Solomon, O. (2004). Autism and the social world: An anthropological perspective. Discourse Studies, 6 (2), 147-183.
http://dx.doi.org/10.1177/1461445604041766
Osborne, L. A. y Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12 (3), 309-324.
http://dx.doi.org/10.1177/1362361307089517
Pérez, C. G. y Verdugo, M. Á. (2008). La influencia de un hermano con autismo sobre la calidad de vida familiar. Siglo Cero, 39 (227), 75-90.
Peydró, S. y Rodríguez, V. (2007). El autismo en el siglo xxi: recomendaciones educativas basadas en evidencia. Siglo Cero, 38 (222), 75-94.
Poirier, A. y Goupil, G. (2008). Perception des parents québécois sur l’annonce d’un diagnostic de trouble envahissant du développement. Journal on Developmental Disabilities, 14 (3), 29-39.
Pozo, P., Sarria, E. y Brioso, A. (2010). Contribuciones positivas que las personas con Trastorno del Espectro Autista (TEA) aportan a la familia. En M. Belinchón (Comp.), Investigaciones sobre autismo en español: Problemas y perspectivas (pp. 319-324). Córdoba: CPS-UAM.
Prince, D. E. (2010). An exceptional path: An ethnographic narrative reflecting on autistic parenthood from evolutionary, cultural, and spiritual perspectives. Ethos, 38, 56-68.
http://dx.doi.org/10.1111/j.1548-1352.2009.01081.x
Rivière, A. (1997). Definición, etiología, educación, familia, papel psicopedagógico en el autismo. Curso de desarrollo normal y autismo. Santa Cruz de Tenerife. Disponible en: http://www.uam.es/personal_pdi/psicologia/agonzale/Asun/2006/TrastDsllo/Lecturas/Autismo/RivDslloNorAut1.htm.
Silverman, C. (2008). Fieldwork on another planet: Social science perspectives on the autism spectrum. Biosocieties, 3, 325-341.
http://dx.doi.org/10.1017/S1745855208006236
Sirota, K. G. (2010). Narratives of distinction: Personal life narrative as a technology of the self in the everyday lives and relational worlds of children with autism. Ethos, 38, 93-115.
http://dx.doi.org/10.1111/j.1548-1352.2009.01083.x
Solomon, O. (2008). Language, autism, and childhood: An ethnographic perspective. Annual Review of Applied Linguistics, 28, 150-169.
http://dx.doi.org/10.1017/S0267190508080148
Stoner, J. B., Bock, S. J., Thompson, J. R., Angeell, M. E., Heyl, B. S. y Crowley, E.P. (2005). Welcome to our world: Parent perceptions of interactions between parents of young children with ASD and education professionals. Focus on Autism and Other Developmental Disabilities, 20 (1), 39-51.
http://dx.doi.org/10.1177/10883576050200010401
Tucker, V. y Schwartz, I. (2013). Parents’ perspectives of collaboration with school professionals: Barriers and facilitators to successful partnerships in planning for students with ASD. School Mental Health, 5 (1), 3-14.
ttp://dx.doi.org/10.1007/s12310-012-9102-0
Moro Gutiérrez, L., Jenaro Río, C., & Solano Sánchez, M. (2014). Fears, Hopes and Demans by Parents of Children With ASD. Siglo Cero, 46(4), 7–24. https://doi.org/10.14201/scero2015464724
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