Autism Spectrum Disorder: diagnosis and understanding of the subject by those responsible
DOI:
https://doi.org/10.21527/2176-7114.2022.46.13209Keywords:
autism, watch out for parents, parental relationshipAbstract
Autism Spectrum Disorder (ASD) is a condition focused on aspects of neurodevelopment, and has gained prominence in the literature due to the increase in diagnosis rates and importance of understanding the disorder, but less emphasis is given to parents and guardians of children with ASD, who are subject to intense emotional experiences and variables after the diagnosis and search for adequate help for the treatment. The objective of the present work was to analyze the understanding of parents and guardians of children with ASD about the disorder, treatment and its variations, as well as the experiences of the diagnosis and their emotional perceptions. A total of 894 parents and/or guardians were evaluated through a questionnaire on a digital platform, in which three criteria were investigated: I. About the child; II. Treatment and therapy; and III. Studying autism. The results indicated that those responsible are subject and prone to psychological illness, such as exhaustion, depression and anxiety for dealing with new and challenging issues that encompass ASD and the acceptance of it to their loved ones, highlighting a greater participation of mothers, experiences of prejudiced actions, high rates of dubious treatments found by those responsible with promises of a cure for autism, in addition to a high search for online courses and information about autism. Thus, highlighting the importance of looking at the care and emotional and behavioral support of parents and guardians of children with autism, so that such rates of illness can be mitigated, valuing the parental care of such guardians.
References
American Psychiatric Association (APA). DSM 5: Manual Diagnóstico e Estatístico de Transtornos Mentais. 5. ed. Porto Alegre: Artmed; 2014.
Fadda GM, Cury VE. A experiência de mães e pais no relacionamento com o filho diagnosticado com autismo. Psic.: Teor. e Pesq. 2019;35. DOI: https://doi.org/10.1590/0102.3772e35nspe2
Centers for Disease Control and Prevention (CDC). Data & Statistics on Autism Spectrum Disorder. CDC website. 2014. Disponível em: https://www.cdc.gov/ncbddd/autism/data.html. Accessed March 29, 2022.
Saito M, Hirota T, Sakamoto Y, Adachi M, Takahashi M, Osato-Kaneda A, Kim YS, Leventhal B, Shui A, Kato S, Nakamura K. Prevalence and cumulative incidence of autism spectrum disorders and the patterns of co-occurring neurodevelopmental disorders in a total population sample of 5-year-old children. Mol. Autism. 2020;11(1):35. DOI: https://doi.org/10.1186/s13229-020-00342-5
Souza LMR, Gomes MLC, Silva JA, Carvalho LHZS, Martone MCC, Carmo JS. Oficinas sobre transtorno do espectro autista para pais, cuidadores e profissionais: análise de uma experiência. Rev. Educ. Espec. 2019;32:1-19. DOI: http://dx.doi.org/10.5902/1984686X26386
Ritz B, Liew Z, Yan Q, Cui X, Virk J, Ketzel M, Raaschou-Nielsen O. Air pollution and Autism in Denmark. Environ Epidemiol. 2018 Dec.;2(4):e028. DOI: 10.1097/EE9.0000000000000028. PMID: 31008439; PMCID: PMC6474375
Almeida ML, Neves SN. A popularização diagnóstica do autismo: uma falsa epidemia? Psicol. Cienc. Prof. 2020;40. DOI: https://doi.org/10.1590/1982-3703003180896
Rabba AS, Dissanayake C, Barbaro J. Parents’ experiences of an early autism diagnosis: Insights into their needs. Res Autism Spectr Disord. 2019;66:101.415. DOI: https://doi.org/10.1016/j.rasd.2019.101415
Legg H, Tickle A. UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder: A systematic review of the qualitative evidence. Autism. 2019;23(8):1.897-1.910. DOI: 10.1177/1362361319841488
Martinez M, Thomas KC, Williams CS, Christian R, Crais E, Pretzel R, Hooper SR. Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis. J Autism Dev Disord. 2018;48(7):2.368-2.378. DOI: 10.1007/s10803-018-3493-1. PMID: 29453706
Reed P, Osborne LA. Diagnostic practice and its impacts on parental health and child behaviour problems in autism spectrum disorders. Arch Dis Child. 2012;97(10):927-931.
Vernhet C, Dellapiazza F, Blanc N, Cousson-Gélie F, Miot S, Roeyers H, Baghdadli A. Coping strategies of parents of children with autism spectrum disorder: a systematic review. Eur Child Adolesc Psychiatry. 2019;28(6):747-758. DOI: 10.1007/s00787-018-1183-3. Epub 2018 Jun 18. PMID: 29915911
Anthony N, Campbell E. Promoting Collaboration Among Special Educators, Social Workers, and Families Impacted by Autism Spectrum Disorders. Adv Neurodev Disord. 2020;4:319-324. DOI: https://doi.org/10.1007/s41252-020-00171-w
Goh JX, Aishworiya R, Ho RCM, Wang W, He HG. A qualitative study exploring experiences and support needs of parents of children with autism spectrum disorder in Singapore. J Clin Nurs. 2021;30(21-22):3.268-3.280. DOI: 10.1111/jocn.15836. Epub 2021 May 9. PMID: 33969552
Hsiao YJ, Higgins K, Pierce T, Whitby PJS, Tandy RD. Parental stress, family quality of life, and family-teacher partnerships: Families of children with autism spectrum disorder. Res Dev Disabil. 2017;70:152-162. DOI: 10.1016/j.ridd.2017.08.013. Epub 2017 Sep 21. PMID: 28942105
Yu Q, Li E, Li L, Liang W. Efficacy of Interventions Based on Applied Behavior Analysis for Autism Spectrum Disorder: A Meta-Analysis. Psychiatry Investig. 2020 May;17(5):432-443. DOI: 10.30773/pi.2019.0229. Epub 2020 May 8. PMID: 32375461; PMCID: PMC7265021
Baer DM, Wolf MM, Risley TR. Some current dimensions of applied behavior analysis. J Appl Behav Anal. 1968;1:91-97.
Cooper JO, Heron TE, Heward WL. Definition and Characteristics of Applied Behavior Analysis. In: Cooper JO, Heron TE, Heward WL, editors. Applied Behavior Analysis. 2nd Edition. Upper Saddle River, NJ: Pearson; 2007. p. 2-23.
Freitas, BMS, Gaudenzi, P. “Nós, mães de autistas”: entre o saber da experiência e memórias coletivas em vídeos no YouTube. Cien Saúde Colet [periódico na internet] (2021/maio).
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2022 Revista Contexto & Saúde

This work is licensed under a Creative Commons Attribution 4.0 International License.
By publishing in Revista Contexto & Saúde, authors agree to the following terms:
The works are licensed under the Creative Commons Atribuição 4.0 Internacional (CC BY 4.0) license, which allows:
Share — to copy and redistribute the material in any medium or format;
Adapt — to remix, transform, and build upon the material for any purpose, including commercial.
These permissions are irrevocable, provided that the following terms are respected:
Attribution — authors must be properly credited, with a link to the license and indication of any changes made.
No additional restrictions — no legal or technological measures may be applied that restrict the use permitted by the license.
Notes:
The license does not apply to elements in the public domain or covered by legal exceptions.
The license does not grant all rights necessary for specific uses (e.g., image rights, privacy, or moral rights).
The journal is not responsible for opinions expressed in the articles, which are the sole responsibility of the authors. The Editor, with the support of the Editorial Board, reserves the right to suggest or request modifications when necessary.
Only original scientific articles presenting research results of interest that have not been published or simultaneously submitted to another journal with the same objective will be accepted.
Mentions of trademarks or specific products are intended solely for identification purposes, without any promotional association by the authors or the journal.
License Agreement (for articles published from September 2025): Authors retain copyright over their article and grant Revista Contexto & Saúde the right of first publication.