Support, Challenges, and Opportunities for a Person with Autism Spectrum Disorder in Paraguay: Analysis from the Parents' Perspective
Journal: Advances in Medicine and Engineering Interdisciplinary Research DOI: 10.32629/ameir.v3i1.3729
Abstract
Introduction: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder with high prevalence, whose personal and family challenges begin at an early age and are for life. Objective. To examine the level of support, challenges, and opportunities of people with autism from the perspective of their parents in Paraguay, using a qualitative approach and applying hermeneutic phenomenology at an exploratory level. Methodology. Data collection was carried out through focus groups and Journey Mapping. Forty-six parents and/or guardians of people with ASD from 20 cities in the country participated in the focus groups, and five mothers from the Capital in the Journey Mapping. Results. Families who have a child with autism in Paraguay generally receive support from the microsystem such as grandparents, relatives, and friends. They perceive a change in the family dynamics and they also emphasize the urgent need for institutions and trained professionals to provide early intervention services, more inclusive educational schools, and the promotion of spaces and opportunities for caregiver care. Conclusion. These findings may serve as a basis for the development of specific programs and for the design of future public policies, with the purpose of improving the quality of life of people with autism in Paraguay.
Keywords
autism spectrum disorder; Paraguay; parents
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[1] Association AP. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington: American Psychiatric Association Publishing; 2013.
[2] Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years- Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ. 2018; 67(6):1-23. 10.15585/mmwr.ss6706a1
[3] Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcín C, et al. Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Res. 2012; 5(3):160-79. 10.1002/aur.239
[4] Ghanizadeh A. A Preliminary Study on Screening Prevalence of Pervasive Developmental Disorder in Schoolchildren in Iran. J Autism Dev Disord. 2007; 38(4):759-63. 10.1007/s10803-007-0445-6
[5] Christensen D, Bilder D, Zahorodny W, Pettygrove S, Durkin M, Fitzgerald R, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among 4-Year-Old Children in the Autism and Developmental Disabilities Monitoring Network. J Dev Behav Pediatr. 2016; 37(1):1-8. 10.1097/DBP.0000000000000235
[6] Maenner MJ, Warren Z, Williams AR, Amoakohene E, Bakian AV, Bilder DA, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ. 2023. 24;72(2):1-14. 10.15585/mmwr.ss7202a1
[7] World Health Organization. Meeting Report: Autism Spectrum Disorders and Other Developmental Disorders: From Raising Awareness to Building Capacity. WHO, Genova. 2013. https://apps.who.int/iris/handle/10665/103312
[8] LEY N°6103. Crea el programa nacional de atención integral a los trastornos del espectro autista (PNAITEA) para el abordaje integral e interdisciplinario y la protección social de las personas que presentan trastornos del espectro autista (TEA). 2018. https://www.bacn.gov.py/leyes- paraguayas/8423/ley-n-6103-crea-el-programa-nacional-de-atencion-integral-a-los-trastornos-del-espectro-autista-pnaitea-para-el-abordaje-integral-e-interdisciplinario-y-la-proteccion-social-de-las-personas-que-presentan-trastornos-del- espectro-autista-tea
[9] Lygnegard F, Donohue D, Bornman GM, Huus K. A Systematic Review of Generic and Special Education Needs of Children with Disabilities Living with Poverty Settings in Low and Middle-Income Countries. Journal of Policy Practice. 2013; 12(4). https://www.tandfonline.com/doi/abs/10.1080/15 588742.2013.827141
[10] Hastings RP, Robertson J, Yasamy MT. Interventions for Children with Pervasive Developmental Disorders in Low and Middle Income Countries. Journal of Applied Research in Intellectual Disabilities. 2012; 25(2):119-134. 10.1111/j.1468-3148.2011.00680.x
[11] Hastings RP, Kovshoff H, Ward N, Espinosa Fd, Brown T, Remington B. Systems Analysis of Stress and Positive Perceptions in Mothers and Fathers of Pre-School Children with Autism. J Austim Dev Disord. 2005; 35(5):635-44. 10.1007/s10803-005-0007-8
[12] Van Manen M. Researching the Lived Experience: Human Sciences for an Action Sensitive Pedagogy. The Althouse Press, London. 1990;78-135.
[13] Bronfenbrenner U. Recent Advances in Research on the Ecology of Human Development; 1986.
[14] Pane Solis J, Burt M, Hammler K. Using Group Dramas and Client Journey Mapping to Evaluate Empowerment Outcomes in a Poverty Alleviation Program in Paraguay. In Human Development and Capabilities Association Conference; 2019; London.
[15] Ritchie J, Spencer L. Qualitative Data Analysis for Applied Policy Research. Analyzing Qualitative Data. 1994.
[16] Bitsika V, Sharpley CF. Self- vs Parent Reports of Generalised Anxiety Disorder Symptomatology in Mildly Impaired Girls with an Autism Spectrum Disorder. J Autism Dev Disord. 2020;50 (3):1045-1055. 10.1007/s10803-019-04339-9
[17] Hilton CL, Ratcliff K, Hong I. Predictors of Participation Difficulties in Autistic Children. Am J Occup Ther. 2023; 77(2):7702205010. 10.5014/ajot.2023.050068
[18] Waldman J, McPaul A, Jahoda A. A Comparison of the Content and Nature of Worries of Autistic and Neurotypical Young People as They Transition from School. Autism. 2023. 27(3):667-678. 10.1177/13623613221111313
[19] Gao L, Liu XN. Status Quo and Advanced Progress in Oral Health Care and Treatment of Children with Autism Spectrum Disorder: A Literature Review. Chin J Dent Res. 2022. 8;25(4):251-259. 10.3290/j.cjdr.b3628105
[2] Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years- Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ. 2018; 67(6):1-23. 10.15585/mmwr.ss6706a1
[3] Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcín C, et al. Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Res. 2012; 5(3):160-79. 10.1002/aur.239
[4] Ghanizadeh A. A Preliminary Study on Screening Prevalence of Pervasive Developmental Disorder in Schoolchildren in Iran. J Autism Dev Disord. 2007; 38(4):759-63. 10.1007/s10803-007-0445-6
[5] Christensen D, Bilder D, Zahorodny W, Pettygrove S, Durkin M, Fitzgerald R, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among 4-Year-Old Children in the Autism and Developmental Disabilities Monitoring Network. J Dev Behav Pediatr. 2016; 37(1):1-8. 10.1097/DBP.0000000000000235
[6] Maenner MJ, Warren Z, Williams AR, Amoakohene E, Bakian AV, Bilder DA, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ. 2023. 24;72(2):1-14. 10.15585/mmwr.ss7202a1
[7] World Health Organization. Meeting Report: Autism Spectrum Disorders and Other Developmental Disorders: From Raising Awareness to Building Capacity. WHO, Genova. 2013. https://apps.who.int/iris/handle/10665/103312
[8] LEY N°6103. Crea el programa nacional de atención integral a los trastornos del espectro autista (PNAITEA) para el abordaje integral e interdisciplinario y la protección social de las personas que presentan trastornos del espectro autista (TEA). 2018. https://www.bacn.gov.py/leyes- paraguayas/8423/ley-n-6103-crea-el-programa-nacional-de-atencion-integral-a-los-trastornos-del-espectro-autista-pnaitea-para-el-abordaje-integral-e-interdisciplinario-y-la-proteccion-social-de-las-personas-que-presentan-trastornos-del- espectro-autista-tea
[9] Lygnegard F, Donohue D, Bornman GM, Huus K. A Systematic Review of Generic and Special Education Needs of Children with Disabilities Living with Poverty Settings in Low and Middle-Income Countries. Journal of Policy Practice. 2013; 12(4). https://www.tandfonline.com/doi/abs/10.1080/15 588742.2013.827141
[10] Hastings RP, Robertson J, Yasamy MT. Interventions for Children with Pervasive Developmental Disorders in Low and Middle Income Countries. Journal of Applied Research in Intellectual Disabilities. 2012; 25(2):119-134. 10.1111/j.1468-3148.2011.00680.x
[11] Hastings RP, Kovshoff H, Ward N, Espinosa Fd, Brown T, Remington B. Systems Analysis of Stress and Positive Perceptions in Mothers and Fathers of Pre-School Children with Autism. J Austim Dev Disord. 2005; 35(5):635-44. 10.1007/s10803-005-0007-8
[12] Van Manen M. Researching the Lived Experience: Human Sciences for an Action Sensitive Pedagogy. The Althouse Press, London. 1990;78-135.
[13] Bronfenbrenner U. Recent Advances in Research on the Ecology of Human Development; 1986.
[14] Pane Solis J, Burt M, Hammler K. Using Group Dramas and Client Journey Mapping to Evaluate Empowerment Outcomes in a Poverty Alleviation Program in Paraguay. In Human Development and Capabilities Association Conference; 2019; London.
[15] Ritchie J, Spencer L. Qualitative Data Analysis for Applied Policy Research. Analyzing Qualitative Data. 1994.
[16] Bitsika V, Sharpley CF. Self- vs Parent Reports of Generalised Anxiety Disorder Symptomatology in Mildly Impaired Girls with an Autism Spectrum Disorder. J Autism Dev Disord. 2020;50 (3):1045-1055. 10.1007/s10803-019-04339-9
[17] Hilton CL, Ratcliff K, Hong I. Predictors of Participation Difficulties in Autistic Children. Am J Occup Ther. 2023; 77(2):7702205010. 10.5014/ajot.2023.050068
[18] Waldman J, McPaul A, Jahoda A. A Comparison of the Content and Nature of Worries of Autistic and Neurotypical Young People as They Transition from School. Autism. 2023. 27(3):667-678. 10.1177/13623613221111313
[19] Gao L, Liu XN. Status Quo and Advanced Progress in Oral Health Care and Treatment of Children with Autism Spectrum Disorder: A Literature Review. Chin J Dent Res. 2022. 8;25(4):251-259. 10.3290/j.cjdr.b3628105
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