Autism Spectrum Disorder in Rural Georgia: Education and Resources

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PROJECT SUMMARY Autism spectrum disorder (ASD) is a condition characterized by atypical social communication, rigid thinking, and repetitive behavior that is becoming increasingly prevalent, with 1 in every 54 children meeting the diagnostic criteria. ASD signs and symptoms can vary broadly in their presentation, from relatively mild impairments to symptoms severe enough that they prevent individuals with ASD from living independently. Social support and early intervention therapies however can significantly ameliorate the severity of several ASD symptoms. Notably, the younger children are when therapies and interventions are begun, the more effective they will ultimately be. While children can be reliably diagnosed with ASD at as young as 18 months, the average age at time of diagnosis is 4.5 years which means that children with ASD often miss therapeutic opportunities for lack of a diagnoses. Delayed diagnoses are especially common in children from rural communities. Research that investigated possible causes for delayed ASD diagnoses in rural communities found lack of parental knowledge about ASD, hesitancy among clinicians to diagnose young children with ASD, and a lack of knowledge regarding steps to take to have a child tested for ASD to be significant factors. In order to address ASD-related disparities in rural communities, we created a webpage dedicated to helping families and individuals effected by ASD navigate the diagnostic process. Our webpage directs users to ASD “on-boarding’ organizations, and also has resources for finding early intervention therapy centers near their home communities, provides links to financial resources, and links to community based support organizations. We would like to expand our webpage into an online ASD ToolKit that will be reviewed by rural families who have a child with ASD. Our ToolKit will also give families opportunities to direct content creation by soliciting families’ input through user feedback questions and focus groups. The goal of the ASD ToolKit is to create an easy to use guide for living with and managing ASD in rural Georgia that has been shaped insights from families affected by ASD. We will also create an online course about ASD diagnosis and resources for rural physicians that will be informed by input from families affected by ASD. We will invite feedback from our targeted physicians though user feedback questions and an ASD resources quiz. Ultimately, we will use the physician input we receive on the course to develop a continuing medical education (CME) program that will be available through Project ECHO.