Author: Bryan P. White
Original Publication: 05/01/2020
For my paper analysis I read “Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research” (Ratto et al., 2017), which is a diffusion of innovation approach to implementing a community intervention for Latino children with autism spectrum disorder (ASD) or ADHD. The study group was 148 children (3rd through 5th graders) attending Title 1 (high proportion of low-income) in the Washington D.C. area, predominantly of African American/Black and Hispanic/Latino ethnicities. 25% of the final sample group identified Spanish as their preferred language. Traditionally this segment is very challenging to effect successful intervention programs because of the dual nature of the disparities experienced by Latino children and their families. One part of this disparity is that minorities experience differential access to healthcare, and even more differential access to mental health programs. The other is socioeconomic status - since Latino families tend to struggle more economically, depending on the area, access to quality education (the primary focal point for spectrum disorders like ASD and ADHD) is more challenging. In general, minorities and low-income children are more susceptible for developing neurodevelopmental disorder. In this study, the authors take great care to outline a Diffusion of Innovation (DOI) program that tackles some of these challenges using the development of innovations.
One of the first things this study did, which really paved the way for the entire study, was to establish a study advisory board (SAB), which consisted of a diverse group of qualified individuals that could advise the program coordinators throughout the duration of the study. The overall goal of the study was to improve the health and education outcomes of children with ASD or ADHD, which included developing and implementing innovations that could be used by children and families to facilitate their own health and wellbeing. In terms of DOI, this means creating a relative advantage for the innovation, meaning that the usefulness of adopting a new behavior or technology will be more useful than not adopting it, and that the complexity of the innovation is low enough that the difficulty in adopting the innovation does not outweigh the benefit as well.
In this study, the researchers highlighted major hurdles that minorities and low-income families face towards achieving good neurodevelopmental treatment. Language and cultural barriers pose two of the greatest impacts by themselves. Using a DOI approach, the SAB routinely devised new strategies to improve engagement of the study participants, including hiring bilingual staff, translating all educational materials into Spanish, and routinely engaging family navigators (a designated family member to work with the research group) to improve or change methods throughout the study. On of the key innovations was the development of a workbook style manual (guide) on neurodevelopmental disorders. Another key innovation was the switch towards using text messages to communicate with family navigators and research staff rapidly, in the case of schedule changes (working class families). Focus groups designed to adapt to cultural preferences, such as extra time to make family decisions rather than individual decisions were also helpful.
Overall, the researchers found that flexibility was a critical factor in engaging minority and low-income families, and even more so in Latino families because of cultural sensitivities. Furthermore, partnering with educator staff was also critical, as that was where children with ASD or ADHD were most likely to engage in activities that might improve their education outcomes. In many cases, children did not actually have a clinical diagnosis of ASD or ADHD, so this was the first experience the children or families had with dealing with the disorder, and similarly was the first experience families had with communicating with other families with children with neurodevelopmental disorders. Ultimately this led to the development of their own peer-support networks and the adoption of an educational/learning style of improving health and education outcomes for children with neurodevelopmental disorders.
Ratto, A. B., Anthony, B. J., Pugliese, C., Mendez, R., Safer-Lichtenstein, J., Dudley, K. M., … & Anthony, L. G. (2017). Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research. Autism, 21(5), 622-634.
Autism spectrum disorder (ASD) is a challenging disorder to design health interventions for because of its wide variety of presentations (hence, a spectrum disorder) as well as a historical tendency of under-reporting and under-diagnosing. Understanding how successful health interventions can be delivered to children with ASD is a critical factor towards achieving Healthy People 2020 goals (HP2020, 2020). In terms of HP2020 goals, increasing the proportion of adolescents receiving treatment for mental health disorders is a direct goal )“MHMD-6 Increase the proportion of children with mental health problems who receive treatment”), however, autism is not specifically listed as a targetable intervention component in HP2020. In the United States (US), the prevalence of autism is roughly 1 in 54 children, and more prevalent in boys (1/34) than in girls (1/144) (Autism Speaks: https://www.autismspeaks.org/autism-statistics). While boys are more likely to be diagnosed with ASD than girls, its unknown if this is because boys actually have a higher rate of ASD or girls are more adaptive at dealing with the negative symptoms, or experience a different range of phenotypes altogether from males (Frazier et al., 2014).
Since the prevalence of autism is so high in children in the US, this highlights the need for effective, high-efficiency/low-cost intervention solutions. The earlier that children are identified as ASD and understand what treatment methodologies work best for them (not every treatment or methodology will work for the same individual with ASD), the greater chance these individuals will have at successful social interactions, employment opportunities, and general independence and functionality later in life. One such type of intervention is an diffusion of innovation-style intervention using social media. Current theories surrounding the use of social media in health interventions are mixed, mostly because significant amount of research has shown that social media can have a negative psychological impact on health outcomes (Oberst et al., 2017), but positive outcomes are also possible (Radovic et al., 2017). Another issue with the use of social media in health interventions is the possible development of a health disparity due to communication inequalities (Glanz, 2020), where people in higher socioeconomic statuses have better access to health information. This potential for a health disparity further highlights the need for a better understanding of any potential positive side effects of social media use for those with ASD.
In 2016, Snethen et al. had proposed that social media use could have a positive health benefit on individuals with psychiatric disorders by creating a more effective means of community integration for people that might not otherwise engage in community interactions, but also warned of a negative consequence in undirected communications (anxiety-producing interactions). In a later study, van Schalkwy et al. (2017) introduce the idea of “friendship level” and a Social Media Experience Scale (SMES) as metrics to directly test the efficacy of a social media intervention in youths with ASD. In this 2017 study, the SMES scale was split into two parts - SMES-Anxiety (a negative experience) and SMES-Utility (a positive experience). A group of 100 adolescents aged 12 to 19 were recruited for the study, 44/100 of which had a diagnosis of ASD.
The authors proposed two hypothesis: 1. The Increase Hypothesis - social media allows individuals with ASD to create new interactions that they would not have previously engaged in or 2. The Displacement Hypothesis - social media displaces otherwise normal social interactions, leading to a decrease in utility. In this study, the authors found that those with ASD but not high levels of social anxiety experienced an increase is SMES-Utility, but those with ASD and high-anxiety lost this increase effect and had no net change. The non-ASD group saw no indication of an increase in SMES-Utility. These results suggest that individuals with ASD are insulated from the Displacement effect and already experience poor friendship quality relative to the non-ASD group, whereas the ASD group may experience a displacement effect from social media use, leading to a net negative effect in the non-ASD group.
Overall, this suggests that social media use can be an effective health intervention for some group of individuals with ASD. The most likely mode of increase seen here is due to the elimination of social queues that would otherwise inhibit or prevent ASD individuals from engaging in social interactions (e.g., the ASD trait of being unable to identify facial expressions is eliminated in social media interactions). However, more research is needed to understand why high-anxiety ASD individuals do not experience an increase in SMES-Utility. This suggests social media interactions could be modified to provide a more robust support network for those with ASD, including those with high-anxiety symptoms.
Frazier, T. W., Georgiades, S., Bishop, S. L., & Hardan, A. Y. (2014). Behavioral and cognitive characteristics of females and males with autism in the Simons Simplex Collection. Journal of the American Academy of Child & Adolescent Psychiatry, 53(3), 329-340.
Glanz, Karen. Health Behavior (Jossey-Bass Public Health) (p. 336). Wiley. Kindle Edition. Healthy People 2020 (HP2020). Mental Health and Mental Disorders. (April 18, 2020). https://www.healthypeople.gov/2020/topics-objectives/topic/mental-health-and-mental-disorders
Oberst, U., Wegmann, E., Stodt, B., Brand, M., & Chamarro, A. (2017). Negative consequences from heavy social networking in adolescents: The mediating role of fear of missing out. Journal of adolescence, 55, 51-60.
Radovic, A., Gmelin, T., Stein, B. D., & Miller, E. (2017). Depressed adolescents' positive and negative use of social media. Journal of adolescence, 55, 5-15.
Snethen, G., & Zook, P. (2016). Utilizing social media to support community integration. American Journal of Psychiatric Rehabilitation, 19(2), 160-174.
van Schalkwyk, G. I., Marin, C. E., Ortiz, M., Rolison, M., Qayyum, Z., McPartland, J. C., … & Silverman, W. K. (2017). Social media use, friendship quality, and the moderating role of anxiety in adolescents with autism spectrum disorder. Journal of autism and developmental disorders, 47(9), 2805-2813.
Autism spectrum disorders (ASD) are frequently marked by a lack of social skills (e.g., difficulty engaging in eye contact or detecting nonverbal cues), and in some cases, negatively perceived social behaviors (e.g., engaging in uncompromising rituals or repetitive behaviors) (Alter-Muri, 2017). Traditional educational facilities and systems tend to be ill-equipped to offer helpful behavioral interventions for younger individuals in an educational setting because one of the requirements of traditional educational settings is rigorous adherence to rules and task completion. Since adhering to these types of structures are difficult for those with ASD, alternative behavioral interventions such as group therapy or art therapy can have positive benefits in mitigating some of the negative social behaviors exhibited as well as achieving some of the same skill-building goals of traditional educational programs (Alter-Muri, 2017).
One such alternative educational structure, art therapy, is defined as the use of art to create a treatment and educational plan to build on the academic strengths of the student. The goal of art therapy is not to improve the techniques of art-making or focus on aesthetic critique, but rather to identify and build on strengths through the process of art-making. Examples of art therapy might include allowing a student to play with toys (e.g., trains) and see which objects they prefer, and then allow the student to engage in a free-form drawing activity (e.g., making a picture book) and identify where the student is doing good and where they are struggling (ie. maybe the student draws an extremely detailed train but is unable to accurately draw a human face). Some other strategies include using different media (e.g., clay) that might also gives clues to any types of tactile hyper or hyposenstitivies (another common symptom of ASD) the student might have. Overall, art therapy has the potential for improving both behavioral skills and motor skills, as well as improving emotional and oral communication (Alter-Muri, 2017).
In a 2008 (Epp, 2008) study of school-aged children (11-18), researchers found that an implementation of the SuperKids program in Ridgefield, Connecticut demonstrated several significant improvements in educational and behavioral categories of the participant students. In this study, social skills such as compromise, graciously winning or losing a game, conversation skills, eye contact, understanding nonverbal cues, and learning to identify and express oneself's feelings as well as understanding others, were all included as improvement goals of the program. A typical group therapy setting for these students involved about a 1-hour session begining with some free-form discussions and then leading up to more unstructured activities like drawing, and group activities where the students share their work. This allows a setting where students can explore a “sharing space”, which gives the therapists an opportunity to observe students and identify where the students might be experiencing sensory overload, as well as engage in coaching behavior for the students (e.g., initiating play and brainstorming activities).
The results of this study demonstrated that a combination of group therapy and art therapy allow for improvements in behavior skills such as cooperation and assertion, as well as a decrease in problem behaviors such as internalization and hyperactivity. Some limitations of this study were that all participants were within the same socioeconomic group (middle-class and upper-middle-class), suggesting they might be more prone or apt towards benefiting from low-complexity interventions and limits the generalizability of the study. In spite of those limitations, this study still demonstrates the possibility for behavioral improvements gained from art therapy, which in turn can translate into improved health and educational outcomes, further suggesting this is an efficacious course of research for developing ASD interventions in an educational setting.
Epp, K. M. (2008). Outcome-based evaluation of a social skills program using art therapy and group therapy for children on the autism spectrum. Children & Schools, 30(1), 27-36.
Alter-Muri, S. B. (2017). Art education and art therapy strategies for autism spectrum disorder students. Art Education, 70(5), 20-25.