48 research outputs found

    El Arte de Criar Hijos Felices: Equilibrio entre Disciplina y Afecto

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    Objetivos de Este Libro: A pesar de que este es un libro escrito para padres de niños entre 2 y 8 años que puedan estar experimentando dificultades en el manejo de sus niños; la idea central no es convertir súbita y repentinamente a los niños es obras perfectas sin ningún problema, el lograr que los padres sientan y ejerzan control justo y lógico sobre sus hijos. Las metas de este libro son: 1) Mejorar las destrezas de los padres para manejar y convivir con niños con problemas de conducta, especialmente con aquellos niños desobedientes y con actitudes retadoras y desafiantes. 2) Aumentar el conocimiento que los padres poseen acerca de las causas de las conductas desafiantes, retadoras y desobedientes de los niños: y acerca de los principios y conceptos que sustentan el aprendizaje social de esas conductas. 3) Mejorar la obediencia del niño hacia las órdenes, direcciones y reglas establecidas por los padres y adultos en general. 4) Aumentar la armonía familiar a través del empleo por parte de los padres de la atención positiva y otras consecuencias con sus niños; el establecimiento de reglas, instrucciones, y órdenes claras; el uso de disciplina justa, clara y rápida para las conductas inapropiadas; y una confianza general en los principios de las conductas de crianza. 5) En fin, es hacer que padres e hijos disfruten de la bendición de ser una familia, y descubrirse unos a otros, y la maravilla de crecer juntos

    Cognitive And Language Development in Older and Younger Siblings of Children With ASD

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    The study aims to explore cognitive and language development in siblings of children with autism, and to compare younger and older siblings on all the measures. 36 siblings of children with autism, between the ages of 2 years, 6 months and 15 years (x=8.67; SD=3.91) were assessed using the PPVT for the receptive language abilities, the WPPSI-III or WISC-III as an estimation of IQ, the VABS as a measure of adaptive functioning, and SCQ was used to assess autism-related symptoms. 72% (n=26) of the children were older than the affected sibling, whereas 28% (n=10) were younger. PPVT scores were below normal limits. On the contrary, IQ scores for the total sample were regarded as average. In contrast, their adaptive functioning was within normal limits. Younger siblings had poorer performance on the PPVT and on the communication sub-domain of the VABS when compared to older siblings. Siblings of children with autism might exhibit abnormal language development, which could be considered as features of the broader-autism phenotype. Although it has also been suggested that birth order could affect the language development of the unaffected siblings, the relationship between these variables remains unclear. These findings offer additional support for a familial association between autism and language abnormalities

    Repercussions of the COVID-19 lockdown for autistic people in Mexico: The caregivers’ perspective

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    Introduction. The COVID-19 lockdown has posed new challenges for individuals with autism spectrum disorder (ASD), including service suspension and reductions in support. Objective. To explore the perspectives of caregivers on the impact of the COVID-19 lockdown on people with ASD in Mexico. Method. 126 caregivers from Mexico completed a survey on the impact of lockdown on people with ASD. Results. Suspension of at least one service was reported for 38.9% of subjects, with no significant association being found between symptom worsening and service administration modality. Discussion and conclusion. Service suspension for people with ASD in Mexico has been a side effect of the pandemic, negatively impacting their behavior. Results indicate that certain services could be remotely maintained and provided to individuals with ASD in underserved areas - Introducción. El confinamiento debido a la pandemia por COVID-19 ha implicado nuevos desafíos para las personas con trastorno del espectro autista (TEA), incluyendo la suspensión de algunos servicios, y la disminución de los apoyos. Objetivo. Explorar las perspectivas de los cuidadores acerca de las reper-cusiones del confinamiento por COVID-19 en las personas con TEA en México. Método. 126 cuidadores residentes de México completaron una encuesta acerca del impacto del confinamiento en personas con TEA. Resultados. Aunque el 38.9% de los participantes reportó la suspensión de al menos un servicio de salud tras el confinamiento, no hubo asociaciones significativas entre retroceso y modalidad de administración de los servicios. Discusión y conclusión. La suspensión de servicios a las personas con TEA en México es uno de los efectos secundarios de la pandemia, y afecta negativamente su comportamiento. Los resultados indican que algunos tratamientos pudieran ser mantenidos remotamente y brindar servicios a personas con TEA en zonas de difícil acces

    Comparison of the efficacy of carbamazepine, haloperidol and valproic acid in the treatment of children with Sydenham\u27s chorea: clinical follow-up of 18 patients

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    In order to compare and contrast the efficacy of haloperidol, carbamazepine, and valproic acid in the treatment of Sydenham\u27s chorea a prospective study including 18 cases of this disorder was undertaken. Age of patients ranged from 7 to 15 years. Ten children were female and 8 were male. All but one had generalized, either symmetric or asymmetric chorea. The patients were divided in three equal groups, and were given a standardized dose of each of the drugs built-up over a week. Following therapy, the six children receiving valproic acid showed remarkable improvement, without side effects. Five patients receiving carbamazepine showed improvement without side effects. Only three of the patients that received haloperidol improved. In the 4 cases that did not show clinical improvement after one week of treatment, therapy with valproic acid led to disappearance of the symptoms in a lapse that ranged from 4 to 7 days. Recurrence related to discontinuation of treatment was observed in two patients. In view of the present results we recommend valproic acid as the first choice drug to treat Sydenham chorea

    NMO in pediatric patients: brain involvement and clinical expression

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    Abstract Objective: To analyze the clinical, neuroimaging characteristics and positivity of the acquaporin water channel (NMO-IgG) in pediatric patients with neuromyelitis optica (NMO). This disorder could have a variable clinical expression. To address such variability, the term NMO spectrum has been suggested. Method: We evaluated six pediatric patients, with a median age of 11 years at the time of the study, with the diagnosis of NMO by the Wingerchuck criteria. Results: All the cases exhibited bilateral optic neuritis (ON). Four patients had abnormalities on brain MRI from the onset,although only three of them developed symptoms correlated to those lesions during the course of their disorder. NMO-IgG was positive in 80%. Conclusion: Optic neuropathy is the most impaired feature in NMO patients. Brain MRI lesions are not compatible with multiple sclerosis and positivity of the NMO-IgG are also present in NMO pediatric patients, confirming the heterogeneity in the expression of this disorder. - RESUMEN Objetivo: Analizar las características clínicas y de neuroimagen, y la positividad del canal de agua acuaporin (NMO-IgG) en pacientes pediátricos con neuromielitis óptica (NMO). Este trastorno puede tener una expresión clínica variable. El término espectro de NMO ha sido propuesto para poder incluir la variabilidad. Metodo: Evaluamos seis pacientes pediátricos, con una mediana de edad de 11 años al momento del estudio, con el diagnóstico de NMO de acuerdo a los criterios de Wingerchuck. Resultados: Todos los casos exhibían neuritis óptica bilateral (ON). Cuatro pacientes tuvieron anormalidades en la RM cerebral desde el inicio, aunque solo tres de ellos desarrollaron síntomas relacionados con las lesiones durante el curso de la enfermedad. NMO-IgG fue positiva en el 80%. Conclusión: Neuropatía óptica es la característica mayormente observada en los pacientes con NMO. Lesiones cerebrales en la RM cerebral no compatibles con esclerosis multiple y positividad de la NMO-IgG están también presentes en los pacientes pediátricos con NMO; lo cual confirma la heterogeneidad en la expresión clínica de este trastorno

    Age of diagnosis, service access, and rights of autistic individuals in Argentina: Caregivers reports of changes and similarities across time

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    Background: Many countries have developed health initiatives to protect those with disabilities and developmental concerns in the past few years. However, the needs of autistic individuals are still short of being fulfilled. Partially due to limited research expenditure, which would allow bridging the gap between evidence and practice, the long time it takes to implement passed laws, and the limited operationalization of inclusive policies. Objective: To quantitatively examine changes in the child\u27s age at the time of caregiver\u27s first developmental concerns and age of diagnosis of their autistic child across 5 years. Also, to address challenges experienced by caregivers (e.g., reported service barriers) and the work still needing to be done in Argentina based on caregivers\u27 reports of their priorities (e.g., ensuring their child receives better services). Methods: Two independent samples of caregivers of autistic individuals were surveyed by the Red Espectro Autista Latinoamerica (REAL) in 2015 (n = 763) and the World Health Organization (WHO) in 2020 (n = 422). Similar items in both surveys were compared through descriptive inferential analysis and chi-square tests for categorical variables. Results: Compared to the 2015 sample, for the 2020 sample, more caregivers reported an earlier age of first concerns and an earlier age of a professional diagnosis. In the 2020 sample, more children diagnosed before the age of three had a doctor or a teacher noticing the first developmental concern. Also, in this sample, fewer caregivers reported service barriers (e.g., limited availability, waitlist, costs, etc.) and a need for better social support and better health services. However, rates of caregivers indicating a need for more rights for autistic individuals and greater protection of existing rights increased. There was no change in the reported rate of family members who stopped working to care for the autistic individual. For both samples, there was statistically significant differences in individual (physician, teacher, caregiver) noticing first developmental concern and the age of diagnosis, with the majority having a caregiver noticing the first concern. Conclusion: The 5 years that separate both samples show an improvement in developmental concerns being noticed, a decrease in age of diagnosis, and an improvement in several service areas such as community awareness. Also, caregivers reported fewer barriers to service accessibility, thus suggesting a positive impact stemming from changes in public policies, non-profit organizations\u27 work through awareness campaigns, and advocates\u27 strives toward greater awareness. Nonetheless, a similar proportion of family members reported ceasing working to care for autistic individuals and perceived that the fundamental rights of their autistic children needed to be protected. These results imply that despite better care pathways in Argentina, there are still gaps when attempting to meet the needs of autistic individuals and their families. The present study provides a meaningful understanding of existing gaps and help exemplify the perceived improvements when non-profit agencies and advocates promote increased rights and community awareness in addition to the established laws focusing on ASD

    Age of autism diagnosis in Latin American and Caribbean countries

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    An earlier diagnosis of autism spectrum disorder might lead to an earlier intervention, yet knowledge and awareness of autism spectrum disorder in Latin America and Caribbean Countries are limited. A later autism spectrum disorder diagnosis has been associated with negative consequences, as it might imply later access to services. This study aims to identify factors associated with the age of autism spectrum disorder diagnosis as reported by 2520 caregivers of autistic children from six Latin America and Caribbean Countries. Results indicate that on average, caregivers were concerned about their child’s development by 22 months of age; however, the diagnosis was 24 months later. Current age of autistic individuals, better language abilities, and having public health coverage increased the age of diagnosis. On the contrary, the presence of medical comorbidities, severity level, and type of diagnosis decreased the age of diagnosis. The age of diagnosis of autistic individuals in Latin America and Caribbean Countries corresponded to the start of formal schooling despite a much earlier age of first noticed developmental concern, highlighting the need to reduce this age gap and increase children’s probability of benefiting from early intervention. Taken together, autism spectrum disorder personal/clinical characteristics and access to health service are the main determinants for the age of diagnosis. Lay abstract An earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child’s age when they noticed some developmental delays and their child’s age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child’s development by 22 months of age; however, the diagnosis was received when the child was 46 months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries

    Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America

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    Background Core symptoms of Autism Spectrum Disorder (ASD) continue to affect everyday life as children grow and transition into adulthood. That way, different services may be needed at various stages of their lifetimes. This study aimed to describe service encounters and hours of service per week for individuals with ASD in Latin American countries and compare the data from three age groups (preschoolers, school-aged, and adolescents). Methods: The data were obtained from an online survey adapted by Red Espectro Autista Latinoamerica (REAL) in 6 different countries in South & Central America. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results: Services encounters for Speech, Occupational and Behavioral Therapies decreased with patient age, while medication increased. Regardless of the age group, a large proportion of individuals (19-37%) were not receiving treatment, and those receiving treatment got fewer hours than best practice recommendations. For adolescents, the gaps in treatment are even greater and less consistent. Discussion Failure to offer timely identification and intervention for ASD will result in more impairment of the individual and burden for the family. Although there are several initiatives to develop more resources for this population in Latin-America, the provision of services for ASD is still undervalued. Many such individuals might not be receiving the services they need, while most children are mainly receiving therapies with low to moderate evidence at a frequency below the recommended standards

    Implementing the WHO caregivers skills training program with caregivers of autistic children via telehealth in rural communities

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    Background: For families with autistic children living in rural areas, limited access to services partly results from a shortage of providers and extensive travel time. Telehealth brings the possibility of implementing alternative delivery modalities of Parent Mediated Interventions (PMIs) with the potential to decrease barriers to accessing services. This study aimed to evaluate the feasibility and acceptability of implementing the World Health Organization-Caregivers Skills Training program (WHO-CST) via an online, synchronous group format in rural Missouri. Methods: We used a mixed methods design to collect qualitative and quantitative data from caregivers and program facilitators at baseline and the end of the program, following the last home visit. Caregivers of 14 autistic children (3-7 years), residents of rural Missouri, completed nine virtual sessions and four virtual home visits. Results: Four main themes emerged from the focus groups: changes resulting from the WHO-CST, beneficial aspects of the program, advantages and disadvantages of the online format, and challenges to implementing the WHO-CST via telehealth. The most liked activity was the demonstration (36%), and the least liked was the practice with other caregivers. From baseline to week 12, communication skills improved in both frequency (p \u3c 0.05) and impact (p \u3c 0.01), while atypical behaviors decreased (p \u3c 0.01). For caregivers\u27 outcomes, only confidence in skills (p \u3c 0.05) and parental sense of competence (p \u3c 0.05) showed a positive change. Conclusion: Our results support the feasibility of implementing the WHO-CST program via telehealth in a US rural setting. Caregivers found strategies easy to follow, incorporated the program into their family routines, and valued the group meetings that allowed them to connect with other families. A PMI such as the WHO-CST, with cultural and linguistic adaptations and greater accessibility via telehealth-plays an essential role in closing the treatment gap and empowering caregivers of autistic children

    Survey for Caregivers of People with Autism Spectrum in Chile: Access to Health and Education Services, Satisfaction, Quality of Life And Stigma [Encuesta para Cuidadores de Personas del Espectro Autista en Chile. Acceso a Servicios de Salud y Educación, Satisfacción, Calidad de Vida y Estigma]

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    People on the Autism Spectrum (AS) face multiple health, education, social, and economic problems. There is limited available information in Chile. \ Objective: To describe the access and satisfaction with health and education services, family and economic impact, stigma, and quality of life of people with AS and their families in Chile. Subjects and Method: Parents/caregivers of AS persons completed the Caregiver Needs Survey, developed by Autism Speaks, which includes demographic information, characteristics of AS persons (previously published), use of health and education services, parents/caregivers\u27 perceptions of satisfaction, impact, stigma, and quality of life. Results: 291 caregivers (86% mothers) of 291 AS persons participated, 89% were male, aged 1-40 years (X:10.4 SD:6.1). Limited and unspecific access to health services is reported. 77% are regularly attending a standard or special school system. Families pay for over 60% of therapies/medical care and over 40% of specific educational support, and 25% report difficulties in accessing services. The family income is affected by resignation (35%) or reduced working hours (46%). Stigma is associated with possible discrimination and feelings of helplessness. The main priorities mentioned for a better quality of life are support for inclusive schooling, better adjustment at home, and improved socialization. Conclusions: This survey provides relevant information about the needs, barriers, and challenges of AS people in Chile and highlights the difficulties in accessing health services and the severe impact on family income. Feelings of stigma, discrimination, and helplessness are reported. Collaborative strategies are needed to improve the quality and access to services and to reduce the economic and mental health burden on the family. - Introducción: Las personas del Espectro Autista (EA) enfrentan múltiples necesidades de salud, educación, problemas sociales y económicos. La información disponible en Chile es insuficiente. Objetivo: Conocer el acceso y satisfacción con servicios de salud y educación, el impacto familiar y económico, estigma y calidad de vida de personas EA y sus familias en Chile. Sujetos y Método: Padres/cuidadores de perso nas EA respondieron la Encuesta de Necesidades de Cuidadores, desarrollada por Autism Speaks, que comprende: información demográfica, características de las personas EA (publicado previamente), utilización de servicios de salud y educación, percepciones de padres/cuidadores en satisfacción, im pacto, estigma y calidad de vida (que presenta esta publicación). Resultados: Participaron 291 cuida dores (86% madres), de 291 personas EA, 89% varones, de 1-40 años (X:10,4 DE:6,1). Se reporta un acceso insuficiente y poco específico a servicios de salud. Un 77% asiste regularmente a algún sistema escolar regular o especial. Las familias financian sobre 60% de terapias/atención médica y sobre 40% de apoyos educacionales específicos; un 25% refiere dificultades de acceso a servicios. La economía familiar se afecta por renuncia (35%) o reducción de jornadas laborales de los cuidadores (46%). El estigma se asocia a posible discriminación y sentimientos de impotencia. Las principales prioridades mencionadas para una mejor calidad de vida son apoyos para escolaridad inclusiva, mejor adaptación en el hogar y mejorar la socialización. Conclusiones: Esta encuesta aporta información relevante acerca de las necesidades, barreras y desafíos de las personas EA en Chile. Destacan las dificultades de acceso a servicios de salud y el severo impacto sobre el ingreso económico familiar. Existe estigma, discriminación e impotencia. Se requiere elaborar estrategias colaborativas para mejorar la calidad y acceso a servicios y reducir la carga económica y de salud mental familiar
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