Views of the Parents of Autistic Children about Autism and Schools for Autistic Children: A Qualitative Study in Urban Bangladesh
[1]
Sumayia Preity, Department of Social Science, Dhaka University, Dhaka, Bangladesh.
[2]
Mohammad Delwer Hossain Hawlader, Deaprtment of Public Health, North South University, Dhaka, Bangladesh.
[3]
Shaheen Akhter, Institute of Paediatric Neuro Development and Autism (IPNA), BSMMU, Dhaka, Bangladesh.
[4]
Abu Sayeed Md. Abdullah, Centre for Injury Prevention and Research, Bangladesh (CIPRB), Dhaka, Bangladesh.
[5]
Animesh Biswas, Centre for Injury Prevention and Research, Bangladesh (CIPRB), Dhaka, Bangladesh; Department of Public Health, Independent University, Dhaka, Bangladesh.
Introduction: Autism is a global burden of disease and priority public health issue. It affects the neurodevelopment of children which causes social impairment, communication difficulties and restrictive, repetitive challenging behaviors. Prevalence of Autism is much higher in Bangladesh compared to other developing countries. In many cases, late diagnosis has been identified as one of the major reasons for incurable autism. Parents are not much aware about the disease. Moreover, they barely know how to deal with their children suffering from autism and what schools are teaching to autistic children. This study explored views of the parents with autistic children on autism and schools in where their children go. Methods: A qualitative study was conducted. Parents were selected from five schools specialized for autistic children in urban Dhaka city, Bangladesh. In-depth interviews were conducted with the parents of the autistic children studying in those schools. Analysis was performed thematically. Results: Parents had a deficit in knowledge and understanding on autism disease, majority of them quoted autism as the “wills of God”. Most of the parents perceived that it’s happened because of them. Parents didn’t receive any formal training or orientation or any skills on how to deal with their autistic children at home. Schools for the autistic children provided counseling session for the parents of which the parents found that teachers holding inadequate knowledge and skills about treating autistic children. Conclusions: Parents have a lack of knowledge, skills and capacity to take care of their children. It, hence, is crucial for the parents to know in details the relevant knowledge through education, training, counseling and demonstration. Teachers need advance skills and knowledge to deal with autistic children and their parents as well. Thus, school going autistic children’s will get better care and quality of life, parents will be more confident to care of their children.
Autism, Children, Autistic School for Children, Urban, Bangladesh
[1]
Landa RJ. Diagnosis of autism spectrum disorders in the first 3 years of life. Nat Clin Pract Neurol. 2008;4(3):138–47.
[2]
Centers for Disease Control and Prevention. Community Report from the ADDM Network: Prevalence of Autism Spectrum Disorders (ASDs) among Multiple Areas of the United States in 2008. Centers Dis Control Prev 2012. Available from: http://ezproxy.umsl.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=eric&AN=ED532267&site=ehost-live&scope=site
[3]
Faras H, Al Ateeqi N, Tidmarsh L. Autism spectrum disorders. Ann Saudi Med [Internet]. 2010 Jul; 30(4):295–300. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2931781/
[4]
Auyeung B, Cohen SB, Wheelwright S, Allison C. The Autism Spectrum Quotient: Children’s Version (AQ-Child). J Autism Dev Disord. 2008;38(7):1230–40.
[5]
Flusberg HT. Evaluating the Theory of Mind Hypothesis of Autism. Curr Dir Psychol Sci. 2007;16(6):311–5.
[6]
Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG. The epidemiology and global burden of autism spectrum disorders. Psychol Med. 2015 Feb;45(3):601-13.
[7]
Retaskie K. Parents Perceptions of Autism Spectrum Disorder. Master of Social work clinical Research Paper. 2015; 510. Available from: http://sophia.stkate.edu/msw_papers/510
[8]
Walton AG. CDC: Autism Rates May (or May Not) Be On The Rise. Pharma & Healthcare. 2014. Available from: http://www.forbes.com/sites/alicegwalton/2014/03/28/10-things-to-keep-in-mind-about-the-cdcs-new-report-on-autism/.
[9]
Patricia B, Kopetz E, Endowed DL. Autism Worldwide : Prevalence, Perceptions, Acceptance, Action. Journal of Social Sciences. 2012;8(2):196–201.
[10]
Elsabbagh M, Divan G, Koh YJ, Kauchali S, Marcín C, Nava CM, Patel V, Paula CS, Wang C, Yasamy MT, Fombonne E. Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Research. 2012;5(3): 160-179.
[11]
Hossain SW. Solving the Autism Public health Puzzle Regional and International Collaboration, as a Panelist, United Nations Head Quarters. Autism Speaks Official Blog. 2011. Available from: https://autismspeaksblog.wordpress.com/tag/solving-the-autism-public-health-puzzle-regional-and-international-collaboration/
[12]
Williams JG, Higgins JPT, Brayne CEG. Systematic review of prevalence studies of autism spectrum disorders. Arch Dis Child. 2006 Jan; 91(1): 8-15.
[13]
Haque KR. Addressing Autism and Disability: Making Progress in Bangladesh. 2015. Available from: http://nhri.ohchr.org/EN/ICC/AnnualMeeting/28/Statementspresentations/Mr_Hoque%20-%20Bangladesh.pdf.
[14]
Autistic children's welfare foundation, Bangladesh. Frequency of autism. Available from: http://www.acwf-bd.org/frequency_autism.php
[15]
Carbone VJ, Lewis L, Kerwin EJS, Dixon J, Louden R, Quinn S. A comparison of two approaches for teaching VB functions: Total communication vs. vocal-alone. J Speech Lang Pathol – Appl Behav Anal. 2006; 1(3):181–92.
[16]
Giordano AM, McElree B, Carrasco M. On the automaticity and flexibility of covert attention: a speed-accuracy trade-off analysis. J Vis. 2009; 9(30):31–10.
[17]
Centers for Disease Control and Prevention. Autism spectrum disorder: Data & statistics. CDC. 2014. Available from: https://www.cdc.gov/ncbddd/autism/data.html
[18]
Johansson M, Rastam M, Billstedt E, Danielsson MMS. Autism spectrum disorders and underlying brain pathology in CHARGE association. Dev Med Child Neurol. 2006; 48(1): 40–50.
[19]
Centers for Disease Control and Prevention. Facts About Autism spectrum disorder (ASD). CDC. 2014. Available from: https://www.cdc.gov/ncbddd/autism/facts.html
[20]
Irving S. Interviewing as Qualitative Research - A Guide for Researchers in Education and the Social Sciences. Teach Coll Columbia Univ USA. 2006. Available from: https://books.google.com.bd/books?hl=en&lr=&id=OE46HtiW
[21]
Boyatzis RE. Transforming qualitative information: Thematic analysis and code development. Sage. 1998.
[22]
Cowley G. Girls, Boys and Autism. Newsweek. 2003. Available from: http://www.newsweek.com/girls-boys-and-autism-136413
[23]
DGHS. Survey of Autism and Neurological Developmental Disorder in Bangladesh. NCDC, DGHS. 2003. Available from: http://www.dghs.gov.bd/images/docs/Autism/Survey%20of%20Autism%20-%20SKB-0403.pdf
[24]
Autistic Speaks. Dhaka Declaration on Autism Spectrum Disorders and Developmental Disabilities 25 July 2011. Available from: https://www.autismspeaks.org/science/initiatives/global-autism-public-health/dhaka-declaration
[25]
Stampoltzis A, Michailidi I. Parental Perceptions of the Diagnostic Process of Autism Spectrum Disorders in a Greek Sample. Austin J Autism Relat Disabil. 2016;2(5).
[26]
Edward, Geraldina. Teachers’ Knowledge and Perceived Challenges of Teaching Children With Autism in Tanzanian Regular Primary Schools. Int J Acad Res Reflect. 2015;3(5):36–47.
[27]
Maryland Commission on Autism. Addressing the Needs of Individuals with Autism Spectrum Disorders in Maryland. 2012. Available from: https://health.maryland.gov/autism/documents/final_autism_report_10-5-2012.pdf