The Development of a Resource Website to Support Underserved Caregivers of Children Diagnosed with Autism Spectrum Disorder (ASD)
Nancy Le
Citations
Abstract
Background Autism is a neurotype or natural variation of human development characterized by motor challenges, communication challenges, repetitive behaviors and or traits, and presence of specific interests (Bhat, 2020). According to previous research, increased parent education on available services can facilitate holistic autism care for Autistic children (Lindly et al., 2022). There is an existing issue with underserved families experiencing barriers and delays to seeking services for their Autistic children due to low health literacy, which is related to language barriers and lack of access to resources (Lindly et al., 2022; Stahmer et al., 2019).
Objective The purpose of this capstone project is to develop a resource website curated for underserved parents and or caregivers of Autistic children through provision of accessible, evidence-based knowledge and resources on Autism in order to better support their Autistic child(ren) by adopting a strengths-based and neurodiversity affirming approach.
ACOTE Area ACOTE Areas that are relevant to this capstone project are as follows: (1) Program Development and Evaluation and (2) Education. The primary ACOTE area is the program development of a resource website.
Methods The resource website, ASD Nest (https://www.asdnest.com/), was developed using a variety of sources that included the following: evidence-based literature, knowledge and information from Autistic individuals and self-advocates, observations of occupational therapy (OT) services for Autistic children in the clinic setting, observations of Autistic students in a non-traditional neurodiversity affirming private school, and information from educational videos, podcasts, and books. Pediatric therapists from All About Kids Therapy Services (AAKTS), a pediatric outpatient clinic based in Lawrenceville, GA, volunteered to participate in informal interviews to assess the usefulness, accuracy, aesthetic, and user-friendliness of the resource website after it’s official launch.
Results ASD Nest empowers underserved parents and or caregivers through provision of content knowledge and compilation of various resources on the Autistic experience as additional support to aid families in navigating this new process. Parents and or caregivers are the experts of their child(ren) and gain access to more information and tools on the Autism diagnosis through ASD Nest to better support their Autistic child(ren). The main program outputs of ASD Nest are content knowledge, Autism services, schooling, financial resources, and additional resources. The main website feature is the translation feature, which offers English, Spanish, Vietnamese, and Mandarin translations of all contents of the resource website.
Conclusions and Relevance ASD Nest yielded an overall positive impact in that it provides easily accessible information related to the Autism diagnosis all on one resource website. Parents, pediatric therapists, and educators learned to adopt a strengths-based and neurodiversity affirming approach when supporting and celebrating each Autistic child’s unique differences and needs.
