Parents' knowledge about Autism Spectrum Disorder and the impact of diagnosis on the family context
DOI:
https://doi.org/10.33448/rsd-v15i4.50633Keywords:
Family support, Maternal overload, Parental perceptions, Autism Spectrum Disorder.Abstract
Objective. To evaluate the level of parental knowledge about ASD; to analyze the emotional and psychological impact of an ASD diagnosis on parents; to explore parental perceptions and expectations regarding the development and future of their children with ASD. Methodology. This study employs an evaluative, descriptive, and exploratory methodology with a qualitative approach, involving parents of children with ASD served by the Association of Parents and Friends of Autistic People (APAA) in Cajazeiras-PB. Data collection was carried out through a questionnaire administered in interviews, after the signing of the Informed Consent Form. From the responses, it was possible to synthesize and understand how parental knowledge and involvement in this process occurs. Results. Understanding of ASD is inconsistent. The most frequently cited signs that motivated the search for evaluation were delayed language development and difficulties in social interaction, reinforcing the heterogeneous nature of the disorder. The diagnostic process was described by most as long, tiring, and emotionally challenging. The main challenges identified were the emotional overload experienced by mothers and the difficulty in dealing with traits such as hyperactivity and cognitive rigidity. The impact on quality of life was felt by all interviewees. Conclusion. The understanding of caregivers regarding Autism Spectrum Disorder is heterogeneous, with some seeking further information after diagnosis, while others still demonstrate limited or misguided knowledge, highlighting the need for ongoing strategies to guide families.
References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., … Dowling, N. F. (2019). Prevalence of autism spectrum disorder among children aged 8 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. MMWR Surveillance Summaries, 68(2), 1–19. https://doi.org/10.15585/mmwr.ss6802a1
Bardin, L. (2011). Análise de conteúdo. Editora Edições 70.
Bertaglia, B. (2024). O impacto do diagnóstico de autismo na família. Autismo & Realidade. https://autismoerealidade.org.br/2024/04/05/o-impacto-do-diagnostico-de-autismo-na-familia/
Bishop-Fitzpatrick, L., Minshew, N. J., & Eack, S. M. (2019). A systematic review of psychosocial interventions for adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(3), 687–694. https://doi.org/10.1007/s10803-012-1615-8
Carlsson, T., & Mattsson, E. (2022). Peer support experienced by mothers of children with congenital heart defects in Sweden. Journal of Family Nursing, Advance online publication, 1–9. https://doi.org/10.1177/10748407211067788
Centers for Disease Control and Prevention. (2020). Prevalence of autism spectrum disorder among children aged 8 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2016. https://www.cdc.gov
Dawson, G., & Burner, K. (2011). Behavioral interventions in children and adolescents with autism spectrum disorder: A review of recent findings. Current Opinion in Pediatrics, 23(6), 616–620. https://doi.org/10.1097/MOP.0b013e32834cf082
Ferreira, I. C., Costa, J. J., & Couto, D. P. (2018). Implicações do diagnóstico de autismo para a vivência da maternidade. Revista da Graduação em Psicologia da PUC Minas, 3(5).
Gemegah, E., Hartas, D., & Totsika, V. (2021). Public attitudes to people with ASD: Contact, knowledge and ethnicity. Advances in Autism, 7(3), 225–240. https://doi.org/10.1108/AIA-01-2020-0009
Jones, S. C., Gordon, C. S., Akram, M., Murphy, N., & Sharkie, F. (2021). Inclusion, exclusion and isolation of autistic people: Community attitudes and autistic people’s experiences. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-021-04998-7
Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6
Lisboa Florentino. (2020). O papel dos pais no desenvolvimento de crianças no transtorno do espectro autista. In Anais do Colóquio Internacional Educação e Contemporaneidade. Grupo de Estudos e Pesquisas Educação e Contemporaneidade.
Lord, C., Elsabbagh, M., Baird, G., & Veenstra-Vanderweele, J. (2020). Autism spectrum disorder. The Lancet, 392(10146), 508–520. https://doi.org/10.1016/S0140-6736(18)31129-2
Machado, M. S., Londero, A. D., & Pereira, C. R. R. (2022). Tornar-se família de uma criança com transtorno do espectro autista. Contextos Clínicos, 3, 335–350.
McStay, R. L., Trembath, D., & Dissanayake, C. (2021). Raising a child with autism: A developmental perspective on family adaptation. Current Developmental Disorders Reports, 8(1), 17–28. https://doi.org/10.1007/s40474-020-00210-x
Moreira, A. C. A., & Alencar, J. L. (2019). A importância da figura materna no desenvolvimento psicossocial da criança com transtorno do espectro autista. Brazilian Journal of Health Review, 2(1), 342–345.
Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2020). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 8(1), 1–9. https://doi.org/10.1186/1477-7525-8-22
Nealy, C. E., O’Hare, L., Powers, J. D., & Swick, D. C. (2019). The impact of autism spectrum disorders on the family: A qualitative study of mothers’ perspectives. Journal of Family Social Work, 18(3), 211–226. https://doi.org/10.1080/10522158.2015.1023332
Pellicano, E., Dinsmore, A., & Charman, T. (2018). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770. https://doi.org/10.1177/1362361314529627
Pereira, A. S. et al. (2018). Metodologia da pesquisa científica. (Ebook gratuito). Santa Maria. Editora da UFSM.
Risemberg, R. I. C., Wakin, M., & Shitsuka, R. (2026). A importância da metodologia científica no desenvolvimento de artigos científicos. E-Acadêmica. 7(1), e0171675. https://doi.org/10.52076/eacad-v7i1.675. https://eacademica.org/eacademica/article/view/675
Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent Psychology, 37(1), 8–38. https://doi.org/10.1080/15374410701817808
Riccioppo, M. R. P. L., Hueb, M. F. D., & Bellini, M. (2021). Meu filho é autista: percepções e sentimentos maternos. Revista da SPAGESP, 22(2), 132–146. http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1677-297020210002000117
Shitsuka, R. et al. (2014). Matemática fundamental para tecnologia. (2ª edição). Editora Érica.
Sposati, A. (2007). Políticas públicas e proteção social no Brasil. In M. V. Iamamoto & R. J. Carvalho (Eds.), Introdução à política social. Editora Cortez.
Sousa, T. G., Pimentel, D. M., Brito, J. F. S., Costa, D. D. C., Xavier, G. R., & Nascimento, M. G. C. (2025). Uma análise dos desafios e possibilidades da qualidade do trabalho executado por agentes de inclusão de alunos com deficiência em escolas públicas. Revista Foco, 18(9), e9833. https://doi.org/10.54751/revistafoco.v18n9-130
Turnock, A., Langley, K., & Jones, C. R. G. (2022). Understanding stigma in autism: A narrative review and theoretical model. Autism in Adulthood, 4(1), 76–91. https://doi.org/10.1089/aut.2021.0005
Weitlauf, A. S., McPheeters, M. L., Peters, B., Sathe, N., Travis, R., Aiello, R., … Warren, Z. (2020). Therapies for children with autism spectrum disorder: Behavioral interventions update. Pediatrics, 135(5), e20191524. https://doi.org/10.1542/peds.2019-1524
Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2021). Disparities in diagnosis and treatment of autism in Latino and non-Latino White families. Pediatrics, 139(5), e20163010. https://doi.org/10.1542/peds.2016-3010
Zwaigenbaum, L., Bryson, S., & Garon, N. (2020). Early identification of autism spectrum disorders. Behavioral Brain Research, 251, 133–146. https://doi.org/10.1016/j.bbr.2020.04.004
Downloads
Published
Issue
Section
License
Copyright (c) 2026 Isaac Levi Genuíno Sampaio, Ricardo de Souza Pereira Junior, Maryanne Pereira Franco Adriano, Nithalma Chelly Maia Macedo Nobre de Castro, Alana Cândido Paulo, José Antônio Figueredo Santos, Alana Kelly Maia Macedo Nobre
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.
