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Background: A higher rate of atypical handedness prevalence (non-right-handedness or left-, mixed-hand dominance) has been recurrently reported in individuals diagnosed with autism spectrum disorder (ASD) compared to individuals with other types of developmental disabilities. However, the exact magnitude of this difference as well as the presence of possible contributing factors remained unknown. The main aim of this study was to understand caregivers' impression of the handedness of their child with developmental disabilities and its relationship with assessments of the child using a hand preference scale. Methods and procedures: The sample of the present study was 1116 individuals with developmental disabilities from two countries, 541 (51.5%) individuals from Iran and 575 (48.5%) individuals from the Kurdistan Region of Iraq (KRI). The handedness of the sample was evaluated based on the parental report and utilizing a standardized scale (The Hand-Preference Demonstration Test "HPDT"). Outcomes and results: There was a statistically significant difference between caregivers' reports on their dependents' handedness and the application of a valid hand preference scale and they do not necessarily overlap. There was a statistically significant relationship between handedness and type of developmental disabilities based on caregivers' reports and individuals with ASD were more non-right-handed compared to individuals with ID based on the caregivers' report. Hence similar difference was not seen between the ASD and ID groups when HDTP was applied as a diagnostic scale. While left-handedness in the ASD and ID group was similar (23-24%), mixed-handedness in the ASD group was 38% compared to 33% in the ID group. Conclusions and implications: The Hand-Preference Demonstration Test (HPDT) was a valid way to determine the hand preference of individuals with ASD and ID. It is concluded that parental reports on their offspring with ASD's hand preference need to be approved through the application of a scale and caregivers and professionals need to be more aware of early motor symptoms such as handedness. Further research should focus on the role of handedness in the development of fine motor skills and eye-hand coordination in children with differing developmental disabilities and variations among those differing impairments.
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Caring for children with different developmental trajectories brings various challenges, which are often exacerbated in low-resource settings. International research has shown that raising a child with autism strongly impacts family caregivers, particularly mothers. There is a dearth of information regarding caregiving for individuals with autism in the Kurdistan Region of Iraq (KRI) and for fathers as well as mothers. This study examined the similarities and differences in caregiving for mothers and fathers of a child with autism in KRI using validated rating scales to measure various aspects of their general well-being. Over two years, a sample of 118 parents of individuals with autism (81 mothers and 37 fathers) self-completed the rating scales, which were further discussed through individual interviews with service personnel mainly known to them. The findings indicated that mothers and fathers were similarly impacted. Although there were no statistically significant differences in the ratings of their general health, sources of stress, family functioning, and satisfaction with caregiving, the majority of parents had elevated ratings on all the measures. In addition, parents who rated their children higher on the Aberrant Behavior Checklist had significantly higher scores on their general health issues and were less satisfied with their caregiving role. Parents of female individuals with autism were also significantly more stressed compared to the male individuals with autism and parents of children who received a diagnosis before three years of age, reported fewer behavioral problems with their child compared to the parents who received a diagnosis when the child was older. In this sample, mothers and fathers seem to be similarly impacted by caring for a child with autism, which is contrary to findings from other countries. However, in this region, family bonds between couples and the wider family may have had an influence which further cross-cultural research in low-resource settings could help elucidate, notwithstanding the challenges this poses. The findings have policy implications for health authorities in the KRI to improve the support provided to both mothers and fathers who care for children with autism, which presently is rarely available to them.
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In the original publication [...].
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The organizational strategy and environment of the healthcare systems influence the turnover rate among healthcare provider personnel. These critical factors have received scant attention in the literature and particularly in the healthcare systems of the Kurdistan Region of Iraq (KRI) as one low-income country with a lack of infrastructural health provision foundations. In this cross-sectional study with qualitative synthesis, the turnover rate of a population consisting of 115 (85 "74%" rehabilitation and training personnel) members of a daycare center for individuals with autism spectrum disorder (ASD) during eight years in the city of Erbil was considered. The aim was to understand the organizational strategy and its impacts on the personnel turnover rate, particularly among healthcare providers. The analysis was conducted utilizing collective data over an eight-year period of service provisions. A qualitative methodological approach was adopted to understand the different aspects of turnover among the staff. The finding indicated a general turnover rate of 87% for the entire personnel and 72% for the rehabilitation and training service providers. This rate imposes considerable costs on the system. Interview analysis also yields supporting evidence for the desire of the staff to change jobs and the lack of understanding of the turnover among system authoritarians resulting in unpredictable changes and staff displacement. Further investigations are needed to understand different contributing factors to imposed or desired turnover rates among healthcare providers in KRI. The turnover over the years has imposed different challenges for the center where the data was collected and imposes unwanted negative impacts on healthcare organizations.
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Job satisfaction and burnout are components of job morale. In general, and among healthcare provider personnel, these are psychological factors of the job and under the influence of different conditions and the organizational management of the healthcare systems. Both job burnout and job satisfaction among healthcare service providers have received scant attention in the literature, particularly in the healthcare systems of the Kurdistan Region of Iraq (KRI) as one low- or middle-income country (LMIC). The burnout rate and job satisfaction in a daycare center for children with autism spectrum disorders were reviewed and measured using a sample consisting of 34 employees from three different sections. The Maslach Burnout Inventory-Third Edition (MBI-3) and the Job Descriptive Index (JDI) were used. The relationships between the two scales and their consisting factors were examined using Pearson Correlation and Chi-square test to understand the correlation and levels of significant difference between the expected and the observed frequencies. There was a significant negative correlation between job burnout and satisfaction with the job and some significant correlations between the factors of the scales. Lower levels of emotional exhaustion and depersonalization factors of the burnout scale were statistically correlated. It was shown that the personnel were mainly satisfied with their jobs through their choices in the four parts of the job satisfaction scale. Further investigations are needed to understand different contributing factors to job satisfaction and burnout among healthcare providers in KRI. The current study might highlight the importance of understanding the healthcare providers' perspectives on their careers.
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Autism spectrum disorder (ASD) prevalence is rising [...].
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The present report from the field tries to present challenges associated with establishing healthcare services for individuals with autism spectrum disorders (ASD) in a low- and middle-income area. The given case that has been highlighted is establishing daycare services focusing on rehabilitation and training services for individuals with ASD, and their caregivers and family members, in the Kurdistan Region of Iraq (KRI). Based on my experience, the associated challenges are divided into three primary levels: personal, professional, and organizational. The report highlights the importance of understanding the challenges associated with establishing healthcare services with the desire to put them under control. Plus, understanding the cultural aspects of the healthcare services for individuals with ASD experiences to address the issues at each level shared. It is concluded in the final part of the report that the key to establishing healthcare quality is to understand attitudes toward healthcare at the personal, professional, and organizational levels. This attitude determines the expectation from the services and defines assistance-seeking behaviors. Results offer insight for stakeholders in the healthcare field, allowing for a better understanding and improvement of availability and access to quality-driven healthcare services. A pre- and in-service training approach is practiced to address the associated challenges of establishing healthcare services at the personal level in KRI. A similar policy might be applicable in other LMICs, where there is a lack of professional and skillful healthcare service providers.
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There is joint agreement among professionals internationally on the importance of diagnosing autism spectrum disorders (ASD) in the early stages of the emergence of symptoms. Criteria changes for the diagnosis of ASD need updated versions of the scale to make the diagnosis feasible. This study aimed to evaluate the level of overlap between two different versions of the Gilliam Autism Rating Scale (GARS-2 and GARS-3), which have been updated based on changes in DSM-IV and DSM-5 on a Kurdish sample of individuals at risk of having ASD and Intellectual Disability, referred to the Bahoz center in the Kurdistan Region of Iraq. A group of 148 cases with ASD and developmental disabilities (DD) was evaluated using the 2nd and 3rd versions of the GARS scale to understand the level of cases that confirm an ASD diagnosis in both scales. Ninety-six individuals (65%) scored about the cut-off score for being diagnosed with ASD based on the GARS-2, and 137 individuals (93%) scored above the cut-off score based on the GARS-3. Moreover, keeping updated and meeting the changing demand of standardization and cultural suitability of the updating scales is a challenge. This challenge is due to the shortage of infrastructure sources and lack of established professionals in low- and middle-income countries (LMICs). Findings indicated that GARS-3, updated based on the DSM-5, tends to diagnose children with accompanying diagnoses and different levels of symptoms severity of ASD at different age levels. Further studies are needed to help professionals and policymakers in low- and middle-income countries understand the updated versions of the available scales and depend on the older version, which must be considered cautiously.
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Screening tools for the early identification of developmental disabilities are strongly advised, yet culturally valid tools are not readily available for use in low- and middle-income countries. The present study describes the context and the processes used to develop a suitable screening procedure for use in the Kurdistan region of Iraq. This was based on an autism rating scale-GARS-3-developed in the USA for use primarily with children's parents. It was administered to three groups of children: those with a pre-existing diagnosis of ASD; those with a confirmed diagnosis of a developmental disability; and those who were typically developing-735 participants in all. The 10 items from the 58 items in the full GARS-3 scale that best discriminated the three groups of children were identified. Subsequent analysis confirmed that the ten-item summary scores had reasonable internal reliabilities, with a good specificity and sensitivity in distinguishing children with ASD from those that were typically developing but less so for children with other developmental disabilities. The study confirms the universality of autism symptoms but also the different emphasis Kurdish parents may place on them. Nevertheless, screening procedures need to be developed in the context of support services that can undertake follow-up diagnostic assessments and provide suitable interventions for use by parents to promote their child's development. The study provides an example of how this can be possible in low- and middle-income countries.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Niño , Países en Desarrollo , Humanos , Irak , Tamizaje MasivoRESUMEN
There is marked variation internationally in the prevalence of children identified as having autism spectrum disorders (ASD). In part, this may reflect a shortage of screening tools for the early identification of children with ASD in many countries. This study aimed to evaluate the Kurdish translation of the Gilliam autism rating scale-third edition (GARS-3), a scale commonly used in Western countries that evaluates six domains related to the ASD definition from the Diagnostic and Statistical Manual of Mental Disorders (DSM) 5, notably Restricted/Repetitive Behavior, deficits in Social interaction and Social Communication, as well as differences in Cognitive Style, Maladaptive Speech, and Emotional Response. GARS-3 assessments were completed through interviews with parents of 735 children, 442 (53%) of whom were diagnosed with ASD. 165 (22%) with an intellectual disability, 49 (7%) with communication disorders, and 133 (18%) typically developing children. The reliability, construct, and the predictive validity of the scale was assessed, and the scores suggestive of a child having ASD were identified. The factor structure was broadly replicated, especially on items relating to social interaction and social communication. The cutoffs for the total scores that were indicative of possible ASD had a high degree of specificity and sensitivity in distinguishing children with ASD from typically developing peers. Some children with I.D. and communication disorders may also score above the threshold, and further assessments should be sought to confirm the presence of autistic traits. Although GARS-3 could be recommended for use in Kurdistan and possibly similar cultures, further prospective research is needed to confirm a diagnosis of assessment with children who score above and below the cutoff scores identified in this study. Moreover, the development of normative data drawn from Kurdish samples of children would be advantageous, although ambitious, given the lack of diagnostic services in many low- and middle-income countries.
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The Childhood Autism Rating Scale (CARS) is a simple and inexpensive tool for Autism spectrum disorder (ASD) assessments, with evidenced psychometric data from different countries. However, it is still unclear whether ASD symptoms are measured the same way across different societies and world regions with this tool, since data on its cross-cultural validity are lacking. This study evaluated the cross-cultural measurement invariance of the CARS among children with ASD from six countries, for whom data were aggregated from previous studies in India (n = 101), Jamaica (n = 139), Mexico (n = 72), Spain (n = 99), Turkey (n = 150), and the United States of America (n = 186). We analyzed the approximate measurement invariance based on Bayesian structural equation modeling. The model did not fit the data and its measurement invariance did not hold, with all items found non-invariant across the countries. Items related to social communication and interaction (i.e., relating to people, imitation, emotional response, and verbal and nonverbal communication) displayed lower levels of cross-country non-invariance compared to items about stereotyped behaviors/sensory sensitivity (i.e., body and object use, adaptation to change, or taste, smell, and touch response). This study found that the CARS may not provide cross-culturally valid ASD assessments. Thus, cross-cultural comparisons with the CARS should consider first which items operate differently across samples of interest, since its cross-cultural measurement non-invariance could be a source of cross-cultural variability in ASD presentations. Additional studies are needed before drawing valid recommendations in relation to the cultural sensitivity of particular items.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Teorema de Bayes , Niño , Comparación Transcultural , Humanos , Psicometría , Estados UnidosRESUMEN
There is no unique scientific method to guide parents in bringing up a child with autism spectrum disorders (ASD) [...].
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The use of psychotropic medication in children is increasing worldwide. Children with developmental disabilities seem to be prescribed these medications at a higher rate compared to their non-disabled peers. Little is known about prescribing in non-Western, middle-income studies. In Iran, the file records of 1133 children, aged 2 to 17 years, assessed as having autism spectrum disorder (ASD) or an intellectual disability (ID) in Tehran City and Province from 2005 to 2019 were collated, and information from parental reports of medications was extracted. Upwards of 80% of children with ASD and 56% of those with ID were prescribed a psychotropic medication with around one quarter in each group taking two or more medications. The rates were higher among male children showing difficult-to-manage behaviors such as hyperactivity, but less so for children of fathers with higher levels of education. The lack of alternative management strategies may be a significant driver for the use of psychotropic medications in Iran and other Low and Middle Income countries, despite their known side effects, and their failure to address the developmental needs of the children. Rather, multi-disciplinary, behavioral, therapeutic, and educational interventions are required, but these are not available widely in Iran, although a start has been made.
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Trastorno del Espectro Autista , Discapacidad Intelectual , Adolescente , Trastorno del Espectro Autista/tratamiento farmacológico , Trastorno del Espectro Autista/epidemiología , Niño , Preescolar , Discapacidades del Desarrollo/tratamiento farmacológico , Discapacidades del Desarrollo/epidemiología , Humanos , Discapacidad Intelectual/tratamiento farmacológico , Discapacidad Intelectual/epidemiología , Irán/epidemiología , Masculino , Psicotrópicos/uso terapéuticoRESUMEN
PROBLEM: Mothers of children with autism spectrum disorders (ASD) experience higher levels of stress compared to mothers of typically developing children. This study identified mothers' perceptions of the stress caused by lifelong caregiving to a child with ASD. METHODS: The current study was conducted in Iran using qualitative methods. In-depth, semi-structured interviews were conducted with twenty-seven mothers. Content analysis was used to analyze and categorize the data. FINDINGS: The main categories included (1) psychological concerns and suffering and (2) sociocultural challenges. The first category consisted of two subcategories, including disruption in mother-child relationships and fears and worries. Also, the second category included subcategories of cultural constraints and lack of social support. CONCLUSIONS: In this study, the mothers of autistic children experienced psychosocial pain. Identifying the stressors for these mothers could lead to appropriate planning to provide psychological, social, and cultural support for them in Iranian society.
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Trastorno del Espectro Autista , Madres , Femenino , Humanos , Irán , Relaciones Madre-Hijo , PercepciónRESUMEN
PURPOSE: Early identification and intervention is recommended for developmental disabilities such as autism spectrum disorders (ASD). Various screening tools are available, but most were developed in affluent English speaking countries. DESIGN AND METHODS: In order to identify possible early signs of ASD within Iranian society, parents of 623 children in an age range from 3 to 7 years of age at risk of ASD, were interviewed about the signs that alerted their concerns. Also two screening instruments were developed and tested with the parents using items derived from the Gilliam Autism Rating Scale (GARS2). One focused on autistic behaviors and the second on developmental indicators. RESULTS: Using both tools, 93% of the children who were identified as likely to have ASD based on a full GARS assessment were identified using the two screening tools. PRACTICE IMPLICATIONS: These assessments might be used in initial screening for ASD by early year's personnel or public health professionals with Iranian parents of toddlers who have concerns about their child's development.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Niño , Preescolar , Humanos , Irán , Tamizaje Masivo , PadresRESUMEN
LAY ABSTRACT: The diagnosis of autism spectrum disorder is a challenging task. Most of the current assessment scales have been developed in the West. The present study examines the applicability of one of the most used scales (the Autism Diagnostic Interview-Revised) in a Middle-Eastern culture. Two studies were undertaken. In the first, the Autism Diagnostic Interview-Revised ratings given to 420 children with autism spectrum disorder, aged 4-11 years, and 110 typically developing children were contrasted. In Study 2, the Autism Diagnostic Interview-Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disabilities to find out whether the Autism Diagnostic Interview-Revised scale would discriminate between these two types of developmental disabilities. The studies confirmed the acceptability of the scale to Iranian parents and assessors. However, the summary scores used to determine whether a child was likely to have autism spectrum disorder were recalculated on the two domains of social communication and repetitive behaviours, which were identified in the statistical analyses that are recommended for the evaluation of assessment scales. Thus the translated scale with the modified domain scoring proved very suitable for identifying Iranian children with autism spectrum disorder. Having a common tool such as Autism Diagnostic Interview-Revised will strengthen the opportunities to undertake cross-cultural research into the impact of autism spectrum disorder on the child and families.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Niño , Humanos , Irán , PadresRESUMEN
In this study, the sequential associations between child communication acts, including spontaneous communication (SC) and elicited communication (EC), and the types of verbal responses of Iranian mothers (follow-in nondirective, follow-in directive, and redirective responses) were compared between children with autism spectrum disorder (ASD) and young typically developing (TD) children. Participants were 29 children with ASD aged 3-6 years and 40 TD children aged 13-18 months, matched on expressive vocabulary. Using time-window sequential analysis, maternal verbal responses within a time interval of 3 sec following child communication were examined during 15 min of video-recorded mother-child free play interaction. Mothers in the two groups had broadly similar patterns of response to child communication acts, but some differences in responding to child EC. Across both groups, sequential associations were stronger for maternal follow-in nondirective responses to child SC than for this type of response to child EC, and were stronger for follow-in directive responses to child EC than for follow-in directive responses to child SC. Child EC and SC acts were less likely to be followed by redirective responses than other maternal responses, again across both groups. Finally, mothers of children with ASD were more likely than mothers of TD children to follow-in to child EC with both nondirective and directive responses. Our findings suggest that mothers of children with ASD synchronize their responses with their child's SC acts to the same extent as mothers of TD children, and are more synchronous in responding to their child's EC acts. LAY SUMMARY: This observational study examined how Iranian mothers verbally responded to their children's communication acts, based on whether the children's communication was spontaneous (unprompted) or elicited (prompted by the mother). Mothers of children with autism spectrum disorder or typical development responded to their children's spontaneous communication acts in similar ways, but showed some differences in responding to children's elicited communication. By prompting their children to communicate, mothers create opportunities to give additional verbal responses to their children, which may help to support children's further language development.
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Trastorno del Espectro Autista , Trastornos del Desarrollo del Lenguaje , Adolescente , Niño , Preescolar , Comunicación , Humanos , Irán , Desarrollo del LenguajeRESUMEN
During the three-month closure of clinics and day centers in Iran due to the coronavirus disease 2019 (COVID-19) lockdown, parents of children with Autism Spectrum Disorder (ASD) became solely responsible for their care and education. Although centers maintained telephone contact, it quickly became evident that parents needed more detailed advice and guidance. Staff from 30 daycare centers volunteered to take part in a two-month online support and training course for 336 caregivers of children with ASD of different ages. In addition to the provision of visual and written information, synchronous video sessions were used to coach parents on the learning goals devised for the children. Both qualitative and quantitative data were collected to understand the acceptability of using telepractice and the outcomes achieved. A low dropout rate and positive feedback from parents indicated that they perceived telepractice sessions to be useful. The factors contributing to parents' satisfaction were identified. Although the use of telepractice would be a good alternative for caregivers in any future lockdowns, it could also be used in conjunction with daycare center services to encourage greater parental participation, or with families living in areas with no day centers. Further studies are needed to compare telepractice to usual daycare face-to-face interventions, and to document its impact and cost-effectiveness for parents and children.
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BACKGROUND: There has been a considerable endeavor to understand associated challenges of caregiving for a child with Autism Spectrum Disorders (ASDs) and to develop the necessary skills and approaches to assist parents of children with ASD. Different studies have been stressed the importance and need for parental involvement in the intervention process to increase positive impacts. METHODS: The process of caregiving and the associated challenges should be understood from different aspects to be able to facilitate parent involvement in intervention implementation. In a narrative literature review, ten selected reviews were considered and each review considered a special aspect of caregiving for an individual with ASD. RESULTS: Five main different factors in the available literature and reviews were considered as different themes that needed to be reconsidered in the studies on the impacts of caregiving for an individual with ASD. CONCLUSIONS: It is concluded that to facilitate parental involvement in the intervention process, and to support caregivers of this group of individuals this review highlights the need for improved research in some proposed areas in this field and to bridge the gap between research and practice in this field.
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BACKGROUND: There is a wealth of research done in developed countries on the investigation of the working memory (WM) performance in people with high-functioning Autism Spectrum Disorders (ASD) (IQ>70), with different reported findings. There is a dearth of similar studies in developing countries. In addition, the findings suggest that WM is possibly influenced by culture. The present study investigated WM performance and its relationship with the symptoms of ASD and Attention Deficit Hyperactivity Disorder (ADHD). METHODS: The present study is a cross-sectional comparative study between two groups of participants with high-functioning ASD, aged 8-16 years (n=30) and typically developing (n=30). This study was conducted in 2016-2017 in Tehran (Iran). The Multivariate Analyses of Variance (MANOVA) was used to compare the between-group differences on WM tasks. In addition, Pearson's correlation coefficient was used to examine the relationship between the ASD and ADHD symptoms with WM performance. The data were statistically analyzed using the Statistical Package for the Social Sciences (SPSS), version 16. RESULTS: It was found that in general, WM was impaired in the people with ASD. Unexpectedly, in the present study, two subscales of Social interaction and Stereotyped Behaviors of the Gilliam Autism Rating Scale-Second Edition showed a significant positive correlation respectively with a score of two WM tasks, i.e. Visual Digit Span and Digit Span Forward. CONCLUSION: These results showed that WM was impaired in individuals with ASD and that could have implications for intervention, but it is necessary that therapists be careful in choosing the appropriate tasks for intervention.