Current Status of Health and Social Services for Children with Autism in Iran: Parents’ Perspectives

Abstract


 
 Objective: The present study is a part of a larger study that aimed at developing a comprehensive model of service delivery for individuals with autism in Iran based on the local needs and characteristics. In this study, the status of the services provided to those with autism in Iran was investigated based on the perspectives of parents of children with autism.
 Method: A semi-structured interview was used to qualitatively investigate the status of the services with regards to autism in Iran based on the perspectives of parents of children with autism.
 Results: This study revealed several barriers, including shortness of eligible professionals, difficulty in access to care for families, high costs, and lack of formal and informal supports, in providing services to those with autism in Iran. Early detection and diagnosis are of prime importance. We also need to train our specialists to diagnose autism based on the standard protocols and tests.
 Conclusion: In sum, we need a comprehensive program that involves different sectors in charge of health and education in Iran.

Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

“…Research on parental perceptions in this area tends to have a mix of positive and negative perception which may be related to practice variation in service delivery across studies. Many studies collected information on structural aspects of the diagnostic assessment such as who completed the assessment (Brogan and Knussen 2003;Crane et al 2016;Daniels et al 2017;Eggleston et al 2019;Goin-Kochel et al 2006;Hackett et al 2009;Osborne and Reed 2008;Rhoades et al 2007;Siklos and Kerns 2007;Zarafshan et al 2019), where the assessment took place (Brogan and Knussen 2003;Renty and Roeyers 2006), and how long it took (Ha et al 2017;Raymond-Barker et al 2018). A number of studies reporting on parental perceptions of the process include comments on the length and perceived thoroughness of the overall assessment process with some studies reporting parents felt the process was too lengthy and overly comprehensive (Mulligan et al 2012;Wong et al 2017) and others reporting that the assessment was perceived as too short and superficial (Ha et al 2017, Selimoglu et al 2013Yi et al, 2020;Zarafshan et al 2019).…”

“…Many studies collected information on structural aspects of the diagnostic assessment such as who completed the assessment (Brogan and Knussen 2003;Crane et al 2016;Daniels et al 2017;Eggleston et al 2019;Goin-Kochel et al 2006;Hackett et al 2009;Osborne and Reed 2008;Rhoades et al 2007;Siklos and Kerns 2007;Zarafshan et al 2019), where the assessment took place (Brogan and Knussen 2003;Renty and Roeyers 2006), and how long it took (Ha et al 2017;Raymond-Barker et al 2018). A number of studies reporting on parental perceptions of the process include comments on the length and perceived thoroughness of the overall assessment process with some studies reporting parents felt the process was too lengthy and overly comprehensive (Mulligan et al 2012;Wong et al 2017) and others reporting that the assessment was perceived as too short and superficial (Ha et al 2017, Selimoglu et al 2013Yi et al, 2020;Zarafshan et al 2019). Some studies commented on parental perceptions of validity of methods used for assessment (Bejarano-Martín et al 2019;Crane et al 2018;Ha et al 2017;Ho et al 2014;Raymond-Barker et al 2018;Wiley et al 2014;Zarafshan et al 2019) and professional's qualifications, experience, or competence (Bejarano-Martín et al 2019;Carlsson et al 2016;de Verdier et al 2019;Harrington et al 2006;Wiley et al 2014) with a mix of positive and negative perceptions.…”

“…A number of studies reporting on parental perceptions of the process include comments on the length and perceived thoroughness of the overall assessment process with some studies reporting parents felt the process was too lengthy and overly comprehensive (Mulligan et al 2012;Wong et al 2017) and others reporting that the assessment was perceived as too short and superficial (Ha et al 2017, Selimoglu et al 2013Yi et al, 2020;Zarafshan et al 2019). Some studies commented on parental perceptions of validity of methods used for assessment (Bejarano-Martín et al 2019;Crane et al 2018;Ha et al 2017;Ho et al 2014;Raymond-Barker et al 2018;Wiley et al 2014;Zarafshan et al 2019) and professional's qualifications, experience, or competence (Bejarano-Martín et al 2019;Carlsson et al 2016;de Verdier et al 2019;Harrington et al 2006;Wiley et al 2014) with a mix of positive and negative perceptions. In a few studies, parents reported wanting to be prepared for the assessment with information on the nature and structure of the assessment upfront (Braiden et al 2010;Hackett et al 2009;Mockett et al 2011).…”

“…Parents appreciate and desire discussion about prognosis and what might be expected in the future (Braiden et al 2010;de Alba and Bodfish 2011;Hennel et al 2016;Ho et al 2014;Molteni and Maggiolini 2015;Osborne and Reed 2008). A number of studies reported that parents perceived inadequate explanation of their child's diagnosis (Samadi et al 2012;Selimoglu et al 2013;Yi et al, 2020;Zarafshan et al 2019) whereas a few studies contained parental reports of being overwhelmed by the amount of information provided during the feedback (Abbott et al 2013;Jashar et al 2019;Renty and Roeyers 2006). Several studies found that when children have been given tentative diagnoses of "probably," "suspected," and "borderline" ASD as well as "autistic traits, tendencies, or features" this leads to parental confusion and lower levels of satisfaction (Brogan and Knussen 2003;Ho et al 2014;Molteni and Maggiolini 2015;Samadi et al 2012).…”

Availability of Services for Families Raising Children With Autism as a Purpose of Social Work

“…Так багато сімей, які проживають у сільській місцевості часто відчувають проблеми у транспортному сполученні з провайдерами послуг, через що знижується якість їхнього життя (Roddy, O'Neill, 2019). Дослідження, проведене в Ірані (Zarafshan et al, 2019), свідчить про те, що часто батьки дітей з аутизмом самі уникають взаємодії із органами соціального захисту та обслуговування, внаслідок стигми. Так, більшість сімей відмовилось оформляти пільги по інвалідності дитини з двох причин: не бажання клеймувати дитину ярликом «дитина з інвалідністю» і складного бюрократичного процесу оформлення статусу.…”