The path of parents of children with Autism Spectrum Disorder in the search for a diagnosis

Authors

DOI:

https://doi.org/10.33448/rsd-v11i4.26451

Keywords:

Diagnosis; Autistic Spectrum Disorder; Children; Family trajectory.

Abstract

Given the increase in diagnoses of Autism Spectrum Disorder in children and adolescents worldwide, a study is necessary to understand how these diagnoses are made. Thus, the present study aimed to investigate the age at which an Autistic Spectrum Disorder (ASD) diagnosis is made in patients of a private clinic in a city in the metropolitan area of Porto Alegre, Rio Grande do Sul state, as well as which professionals were involved in this process. Nine parents participated, being 7 mothers and 2 fathers, with ages between 29 and 62 years old, all of them were in a stable union; only one of the interviewees did not have a complete high school education. This is a qualitative study, with multiple case study design. The results were organized into categories according to the age of the children at the time of diagnosis. It is important to emphasize that most of the parents interviewed had observed atypical behavior in their children before they were 3 years old, and that communication and language impairment and delay were the earliest symptoms observed by them, followed by social behavior impairment.

References

Al-Qabandi, M., Gorter, J. W. & Rosenbaum, P. (2011). Early autism detection: are we ready for routine screening? Pediatrics. 128(1):e211–217. https://doi.org/10.1542/peds.2010-1881

American Psychiatric Association. (2014). DSM-5: Manual diagnóstico e estatístico de transtornos mentais.

Backes, B., Zanon, R. B. & Bosa, C. A. (2017). Características Sintomatológicas de Crianças com Autismo e Regressão da Linguagem Oral. Psicologia: Teoria e Pesquisa [online], 33:1–10. https://doi.org/10.1590/0102.3772e3343.

Baghdadli, A., Pascal, C., Grisi, S. & Aussilloux, C. (2003) Risk factors for self-injurious behaviours among 222 young children with autistic disorders. Journal of Intellectual Disability Research, 47(8):622–627. https://doi.org/10.1046/j.1365-2788.2003.00507.x

Bardin, L. (2011). Análise de conteúdo. Edições 70

Bradford, K. (2010). Supporting Families Dealing With Autism And Asperger’s Disorders. Journal of Family Psy chotherapy, 21(2):149–156. https://doi.org/10.1080/08975353.2010.483660

Braga, M., Rita & Ávila, L. A. (2004). Detecção dos transtornos invasivos na criança: perspectiva das mães. Revista Latino-Americana de Enfermagem [online], 12(6):884–889. https://doi.org/10.1590/S0104-11692004000600006

Chamak, B. & Bonniau, B. (2013). Changes in the diagnosis of autism: How parents and professionals act and react in France. Culture, Medicine, and Psychiatry 1–22. https://doi.org/10.1007/s11013-013-9323-1

Daniels, A. M. & Mandell, D. S. (2014). Explicando as diferenças de idade no diagnóstico do transtorno do espectro do autismo: uma revisão crítica. Autismo: o jornal internacional de pesquisa e prática, 18(5):583–597. https://doi.org/10.1177/1362361313480277

De Stefano, F. (2007). Vaccines and autism: evidence does not support a causal association. Clinical pharmacology Therapeutics, 82(6):756–759. https://doi.org/10.1038/sj.clpt.6100407

Durval, R. (2011). As esquizofrenias Segundo Eugen Bleuler e Algumas Concepções do Século XXI. Revista de Psiquiatria de Lisboa, 25(número especial).

Favero, M. A. & Santos, M. A. (2010). Itinerário Terapêutico percorrido por mães de crianças com transtorno autistico. Psicologia: reflexão e crítica, 23(2):208–221. https://doi.org/10.1590/S0102-79722010000200003

Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric Research, 65(6), 591–598. https://doi.org/10.1203/pdr.0b013e31819e7203

Fountain, C., King, M. D. & Bearman, P. S. (2011). Age of diagnosis for autism: individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health, 65(6), 503–510. doi: 10.1136/jech.2009.104588

Gadia, C. (2006). Aprendizagem e autismo: transtornos da aprendizagem: abordagem neuropsicológica e multidisciplinar. Artmed

Gadia, C. A., Tuchman, R. & Rotta, N. T. (2004). Autismo e doenças invasivas de desenvolvimento. Jornal de Pediatria [online]. 80(2 suppl):83–94. https://doi.org/10.1590/S0021-75572004000300011

Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How Many Doctors Does It Take to Diagnose an Autism Spectrum Disorder? Autism, 10(5):439–51. https://doi.org/10.1177/1362361306066601

Howlin, P., Magiati, I, Charman, T. & MacLean Jr., W. E. (2009). Systematic Review of Early Intensive Behavioral Interventions for Children With Autism. American Journal on Intellectual and Developmental Disabilities, 114(1):23–41. doi: https://doi.org/10.1352/2009.114:23-41

Instituto Brasileiro de Geografia e Estatística (2010). Perfil dos municípios Brasileiros: Censo 2010. Ibge. https://censo2010.ibge.gov.br/

Joseph, L., Soorya, L., & Thurm, A. (2016). Transtorno do espectro autista. Hogrefe

Klin, A. & Mercadante, M. T. (2006). Autismo e transtornos invasivos do desenvolvimento. Brazilian Journal of Psychiatry [online]. 28(suppl 1):s1-s2. https://doi.org/10.1590/S1516-44462006000500001

Maia Filho, A. L. M., Nogueira, L. A. N. M, Silva, K. C. D. O., & Santiago, R. F. (2016). A importância da família no cuidado da criança autista. Saúde em Foco, 3(1), 66–83. http://www4.unifsa.com.br/revista/index.php/saudeemfoco/article/view/719/1000

Noterdaeme, M. & Hutzelmeyer-Nickels, A. (2010). Early symptoms and recognition of pervasive developmental disorders in Germany. Autism,14(6):575–588. https://doi.org/10.1177%2F1362361310371951

Noterdaeme, M., & Hutzelmeyer-Nickels, A. (2010). Early symptoms and recognition of pervasive developmental disorders in Germany. Autism, 14(6), 575–588. https://doi.org/10.1177%2F1362361310371951

Passos, V. S. (2007). A construção social da expectativa de mães com crianças com paralisia cerebral grave frente a escolarização. [Dissertação de mestrado em educação, história, política e sociedade. Pontifícia Universidade Católica]. https://tede2.pucsp.br/handle/handle/10620

Paula, C. S, Ribeiro, S. H., Fombonne, E. & Mercadante, M. T. (2011). Prevalence of Pervasive Developmental Disorder in Brazil: a pilot study. Journal of autism and developmental disorders. 41(12), 1738–1742. https://doi.org/10.1007/s10803-011-1200-6

Petersen, C. S & Wainer, R. (2011). Terapias Cognitivo-Comportamentais para crianças e adolescentes. Artmed

Posar, A. & Visconti, P. (2017). Autism in 2016: the need for answers. Jornal de pediatria, 93(2), 111–119. http://dx.doi.org/10.1016/j.jped.2016.09.002

Reichow, B. (2011) Development, Procedures, and Application of the Evaluative Method for Determining Evidence-Based Practices in Autism. In Reichow, B., Doehring, P., Cicchetti, D., Volkmar, F. (eds). Evidence-Based Practices and Treatments for Children with Autism. Springer. https://doi.org/10.1007/978-1-4419-6975-0_2

Schmidt, C., Dell'Aglio, D. D. & Bosa, C. A. (2007). Estratégias de coping de mães de portadores de autismo: lidando com dificuldades e com a emoção. Psicologia: reflexão e crítica, 20(1):124–131. https://www.scielo.br/j/prc/a/DTtdLRxCpyZwwCbTZmVCPnb/?format=pdf&lang=pt

Silva, A. B. B., Gaiato, M. B. & Reveles. L. T. (2012). Mundo Singular: entenda o autismo. Objetiva

Silva, D. C. R, Ferreira, J. B, Miranda, V. C., & Morais, K. C. S. (2017). Percepção de mães com filhos diagnosticados com autismo. Revista Pesquisa em Fisioterapia. 7(3):377-83. doi:10.17267/2238-2704rpf.v7i3.1506

Spence, S. J. & Schneider, M. T. (2009). The Role of Epilepsy and Epileptiform EEGs in Autism Spectrum Disorders. Pediatric Research, 65(6):599–606. https://dx.doi.org/10.1203%2F01.pdr.0000352115.41382.65

Stake, R. E. Case studies. In Denzin, N. K., Lincoln, Y. S. (ed.). (2000). Handbook of qualitative research. (pp. 435–454). Sage.

Taylor, B. (2006). Vaccines and the changing epidemiology of autism. Child: care, health and development, 32(5):511–519. https://doi.org/10.1111/j.1365-2214.2006.00655.x

Teixeira, G. Manual do Autismo. (2017). BestSaller (4. ed).

Tuchman, R. & Rapin, I. (2009). Autismo: abordagem neurobiológica. Artmed

Yin, R. K. (2001). Estudo de caso: planejamento e métodos. Tradução de Daniel Grassi. Bookman. (2. ed.)

Published

22/03/2022

How to Cite

ROMANZINI, A. V.; KORTMANN, G. M. L. . The path of parents of children with Autism Spectrum Disorder in the search for a diagnosis. Research, Society and Development, [S. l.], v. 11, n. 4, p. e40511426451, 2022. DOI: 10.33448/rsd-v11i4.26451. Disponível em: https://rsdjournal.org/index.php/rsd/article/view/26451. Acesso em: 25 apr. 2024.

Issue

Section

Health Sciences