Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: We are Latinx parents of a small child who recently was diagnosed with autism spectrum disorder (ASD). What resources, research, and information, especially for Latinx families, are available to help us learn more so that we can help our child as they grow? This edition of Answered Questions includes items that discuss eHealth adaptations for minority families of children with ASD; parental perceptions of ASD in Latinx and Black communities; programs to empower Latinx parents of children with ASD: alternative and augmentative communication and challenging behaviors; interventions in education; and more. More about Answered Questions.
NIDILRR-Funded Projects:
The project, Parents Taking Action eHealth Adaptation and Pilot for Latinx, Black, and Chinese Families of Young Children with Autism Spectrum Disorder (in English), addresses the disparities facing underserved racial and ethnic minority families by adopting an innovative learning concept in delivering bite-sized parent training content. Researchers are adapting three culturally-tailored versions of Parents Taking Action for Black, Latinx, and Chinese Families into small online sections. The researchers evaluate the feasibility, acceptability, and preliminary evidence of the efficacy of the adapted intervention.
From the NARIC Collection:
The article, Parental perceptions of autism spectrum disorder in Latinx and Black sociocultural contexts: A systematic review (in English), discusses a systematic review that examined parental and community perceptions of the causes and course of autism spectrum disorder (ASD); experiences of stigma; protective factors; and religious, family, and gender values as they relate to Latinx and Black Americans. The article discusses how community members reported reduced access to information and more inaccurate beliefs about ASD, higher levels of ASD-related stigma, and more negative experiences with healthcare providers, which serve to exacerbate healthcare disparities. The authors discuss the clinical implications of these perceptions and provide recommendations to facilitate better research and clinical practice and to increase equitable access to care.
Research In Focus:
Research has found that children of Latin American descent are less likely to be diagnosed with ASD than non-Latinx children. Research has also found that those Latinx children who are diagnosed with ASD tend to be diagnosed at older ages and to receive fewer autism-related services than non-Latinx children. The article, Parents Taking Action A New Program to Empower Latinx Parents of Children with Autism Spectrum Disorders, discusses a NIDILRR-funded study that tested an innovative program designed to educate Latinx parents about ASD and strategies for supporting their children. The study found that mothers who participated in the program reported an increase in their confidence and empowerment over the course of the study, improved knowledge about their rights, having more access to their communities, and improvements in their children’s social-communication skills over the course of the study. This article is also available in English.
Technology:
The paper, Alternative and augmentative communication systems (AACS) as an instrument to decreasing challenging behavior to students with ASD: A case study (PDF), describes an intervention based on the Benson Schaeffer’s Speak Signal Program that was provided to an 8-year-old girl with ASD. The goal of the intervention was to encourage the girl to use signs to express her needs and decrease challenging behaviors. The study found that eight signs in the intervention worked for the girl in different contexts and helped reduce challenging behaviors.
Rehabilitation:
The article, Care of children with autistic spectrum disorder: A narrative review (in Portuguese), discusses a qualitative study to identify the care practices used by nurses and the importance of these practices during the care of children with ASD and their families. Researchers found that the provision of assistance within the family context and the practice of raising a child with ASD are essential to the child’s development. The authors discuss increasing the use of these practices in the context of nursing on a more regular basis which may add powerful partnerships for multidisciplinary care and increase the benefits resulting from comprehensive care for both the children living with ASD and their families.
Education:
Some teachers may experience confusion regarding the choice and implementation of psychoeducational practices for students with ASD. The paper, Evidence-based focused interventions aimed at students with Autistic Spectrum Disorder, presents a set of 27 focused, evidence-based practices that could form the methodological basis of individual intervention programs aimed at students with ASD. The authors note that these practices may promote greater chances of educational success from a science to practice approach.
The article, The preparation of school teachers to stimulate the socialization of students with autism in conditions of inclusion (PDF), discusses a study that described and compared the current state of elementary school teachers to support and encourage the socialization of students with autism spectrum disorder (ASD) in inclusive schools. The results of this study show that teachers had difficulties in stimulating the socialization of students with ASD. The results also show that the academic degree, experience in inclusive educational spaces, and the disciplinary area were related to how well teachers were prepared to help students with ASD to socialize. The authors stated that these results provide key information to design future strategies and action plans to enhance the theoretical and practical skills of teachers in this setting.
Resources:
- The Centers for Disease Control and Prevention (CDC) provides basic information about ASD that includes signs and symptoms, evaluation and diagnosis, and treatments. The CDC also includes information on the impact of the Study to Explore Early Development (SEED), a community report on autism, and the stories of people who live with ASD. Finally, the CDC provides free informational materials on ASD and related topics. These resources are also available in English.
- The Office of Autism Research Coordination at the Interagency Autism Coordinating Committee (in English) of the US Department of Health and Human Services has compiled a list of resources (in English) from government and non-government sources to assist people with ASD and their families. The resources are divided into sections by topic, including agencies and organizations, transition, housing, and employment.
- The National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health supports and conducts research on what causes ASD, how best to detect the signs of ASD, and how to best treat autism and its symptoms, among other topics. NICHD provides general information about ASD to parents and other family members, including its symptoms and causes, when a child may develop symptoms, and how ASD Is diagnosed by medical professionals, among other topics. The Institute also provides information on its current research on ASD and on joining a research study. Finally, NICHD provides a list of frequently asked questions and links to organizations that research ASD and that provide informational materials.
Further Research:
REHABDATA:
PubMed:
International:
Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.
