Colombian parents of children with autism spectrum disorder: Perceptions, experiences, and expectations

Author(s):  
Marie Tejero Hughes ◽  
Sandra Magaña ◽  
Wendy Gonzales ◽  
Giselle Núñez ◽  
Marisol Moreno-Angarita

Abstract Families play a critical role in supporting their children with autism spectrum disorder (ASD) and in advocating for their health and educational needs. However, many families around the world experience social, emotional, and financial difficulties, as well as challenges navigating various systems in search for the services and supports their children require. Colombia has made some recent strides in supporting the needs of families of children with ASD, but there is still concern among families that their children are not receiving adequate services. Thus, we were interested in learning more about what it was like to parent a child with ASD in Colombia. In particular, we focused on investigating the families' perceptions, experiences, and aspirations for their child with ASD by conducting focus group interviews. Four primary themes emerged from these interviews with Colombian parents, which included the impact of the disability diagnosis on the family, the systemic and societal challenges they faced, the strengths they saw in their child, and their future aspirations and expectations for their child. Implications for developing culturally responsive parent education programs are discussed.

2020 ◽  
Vol 29 (2) ◽  
pp. 890-902
Author(s):  
Lynn Kern Koegel ◽  
Katherine M. Bryan ◽  
Pumpki Lei Su ◽  
Mohini Vaidya ◽  
Stephen Camarata

Purpose The purpose of this systematic review was to identify parent education procedures implemented in intervention studies focused on expressive verbal communication for nonverbal (NV) or minimally verbal (MV) children with autism spectrum disorder (ASD). Parent education has been shown to be an essential component in the habilitation of individuals with ASD. Parents of individuals with ASD who are NV or MV may particularly benefit from parent education in order to provide opportunities for communication and to support their children across the life span. Method ProQuest databases were searched between the years of 1960 and 2018 to identify articles that targeted verbal communication in MV and NV individuals with ASD. A total of 1,231 were evaluated to assess whether parent education was implemented. We found 36 studies that included a parent education component. These were reviewed with regard to (a) the number of participants and participants' ages, (b) the parent education program provided, (c) the format of the parent education, (d) the duration of the parent education, (e) the measurement of parent education, and (f) the parent fidelity of implementation scores. Results The results of this analysis showed that very few studies have included a parent education component, descriptions of the parent education programs are unclear in most studies, and few studies have scored the parents' implementation of the intervention. Conclusions Currently, there is great variability in parent education programs in regard to participant age, hours provided, fidelity of implementation, format of parent education, and type of treatment used. Suggestions are made to provide both a more comprehensive description and consistent measurement of parent education programs.


Children ◽  
2021 ◽  
Vol 8 (2) ◽  
pp. 96
Author(s):  
Martina Siracusano ◽  
Eugenia Segatori ◽  
Assia Riccioni ◽  
Leonardo Emberti Gialloreti ◽  
Paolo Curatolo ◽  
...  

Children with autism spectrum disorder (ASD) and their families have represented a fragile population on which the extreme circumstances of the COVID-19 outbreak may have doubly impaired. Interruption of therapeutical interventions delivered in-person and routine disruption constituted some of the main challenges they had to face. This study investigated the impact of the COVID-19 lockdown on adaptive functioning, behavioral problems, and repetitive behaviors of children with ASD. In a sample of 85 Italian ASD children (mean age 7 years old; 68 males, 17 females), through a comparison with a baseline evaluation performed during the months preceding COVID-19, we evaluated whether after the compulsory home confinement any improvement or worsening was reported by parents of ASD individuals using standardized instruments (Adaptive Behavior Assessment System (Second Edition), Achenbach Child Behavior Checklist, Repetitive Behavior Scale-Revised). No significant worsening in the adaptive functioning, problematic, and repetitive behaviors emerged after the compulsory home confinement. Within the schooler children, clinical stability was found in reference to both adaptive skills and behavioral aspects, whereas within preschoolers, a significant improvement in adaptive skills emerged and was related to the subsistence of web-delivered intervention, parental work continuance, and online support during the lockdown.


Autism ◽  
2021 ◽  
pp. 136236132110331
Author(s):  
Weiwen Zeng ◽  
Sandy Magaña ◽  
Kristina Lopez ◽  
Yue Xu ◽  
J Marisol Marroquín

This study examined maintenance of treatment effects in a culturally tailored parent education program for Latinx families of children with autism spectrum disorder using a behavior maintenance framework. In a two-site randomized waitlist-control study, we compared differences in parent and child outcomes across three timepoints using linear mixed models to determine whether outcomes observed at 4 months after baseline (Time 2) were maintained for an additional 4-month period (Time 3). Parent outcomes included family empowerment, self-reported confidence in, and frequency of using evidence-based strategies. Child outcomes included parent-reported challenging behaviors, social communication impairments, and the number of services received. Participants were 109 Latina mothers (intervention = 54, control = 55) of children with autism spectrum disorder. Results showed that at Time 3, mothers in the intervention groups reported significantly greater confidence in and frequency of using evidence-based strategies, and that their child received significantly more services. Site-specific treatment differences were found in outcomes such as parent-reported empowerment and child social communication impairments. Findings suggest that the intervention for Latinx parents of children with autism spectrum disorder was efficacious and could be maintained, and that site-specific policy and service differences may need to be examined in future research to inform dissemination and implementation. Lay abstract Background: We conducted a follow-up investigation of a two-site randomized controlled trial in the United States. We examined whether the treatment effects in a culturally tailored parent education program for Latinx families of children with autism spectrum disorder were maintained over time. Methods: Using linear mixed models, we compared differences in parent and child outcomes across three timepoints: baseline, 4 months after baseline (Time 2), and 8 months after baseline (T3). Parent outcomes included family empowerment, self-reported confidence in, and frequency of using evidence-based strategies. Child outcomes included parent-reported challenging behaviors, social communication impairments, and the number of services received. Participants were 109 Latina mothers (intervention = 54, control = 55) of children with autism spectrum disorder. Results: After intervention at both Time 2 and Time 3 in both sites, mothers in the intervention groups reported significantly greater confidence in and frequency of using evidence-based strategies, and that their child received significantly more services. We also found that there were treatment differences across the two study sites in several outcomes. Implications: The intervention for Latinx parents of children with autism spectrum disorder was efficacious and could be maintained, and that site-specific policy and service differences may need to be examined in future research to inform dissemination and implementation.


JAMA ◽  
2015 ◽  
Vol 313 (15) ◽  
pp. 1524 ◽  
Author(s):  
Karen Bearss ◽  
Cynthia Johnson ◽  
Tristram Smith ◽  
Luc Lecavalier ◽  
Naomi Swiezy ◽  
...  

2016 ◽  
pp. 397-418 ◽  
Author(s):  
Zhi Zheng ◽  
Esubalew Bekele ◽  
Amy Swanson ◽  
Amy Weitlauf ◽  
Zachary Warren ◽  
...  

2017 ◽  
Vol 39 (3) ◽  
pp. 415-425 ◽  
Author(s):  
Sarah N. Douglas ◽  
Rebecca Kammes ◽  
Erica Nordquist

Parent training is an essential part of quality programming for children with autism spectrum disorder (ASD). However, limited research exists exploring online training approaches to support parents of children with both ASD and complex communication needs (CCN; e.g., limited verbal ability), despite the many benefits that online training might have for these parents and the overall sustainability and scalability of such approaches. This study utilized a single-subject multiple probe design with three parents and their children to explore the impact of online parent training for parents and their children with ASD and CCN. Training included online interactive components to teach parents a communication strategy, as well as live practice sessions during which parents implemented the strategy, had an opportunity to ask questions, and engaged in self-reflection. Results indicated that training increased communication opportunities and responses provided by parents, and communication by the child. Limitations and future research directions are discussed.


Sign in / Sign up

Export Citation Format

Share Document