Julianna Hickey
Pronouns: she/her/hers
Research Mentor(s): Haylie Miller
Research Mentor School/College/Department: University of Michigan / Kinesiology
Program: UROP
Session: Session 5 (2:40pm – 3:30pm)
Authors: Julianna Hickey, Mithra Arun, Isabel Munoz Orozco, Annabel Luna-Smith, Geetje Duron, Nicholas E. Fears, Haylie Miller
Abstract
Hispanic vs. Non-Hispanic Awareness of Motor Symptoms and Resources in Autism Motor symptoms are not evaluated as part of the standard practice for diagnosing autism, despite prior research indicating that autistic people have clinically-significant movement differences. There is knowledge that Developmental Coordination Disorder (DCD), a condition characterized by impaired motor development, commonly co-occurs with autism, and may offer some insight into the motor symptoms of autism. Additionally, there is limited knowledge of Hispanic families’ experiences with accessing autism diagnoses and resources. There is some research suggesting that Hispanic families are vulnerable to disparities in the timeliness with which they receive a diagnosis, which could indicate that various other obstacles in the diagnostic and/or therapeutic processes disproportionately affect Hispanic families. The primary objectives of this study were to evaluate whether Hispanic families face more barriers compared to non-Hispanic families during the diagnostic process of autism and beyond, including a lack of awareness of motor symptoms present in autism and difficulty in obtaining resources. We interviewed 53 families (11 Hispanic and 42 non-Hispanic), discussing individual diagnostic processes, experiences with finding resources and support, and knowledge/recognition of visuomotor symptoms in autism. Interviews are being transcribed and qualitatively analyzed using thematic analysis to determine common themes and experiences. Preliminary data suggests that although caregivers were aware of the motor symptoms of autism, they didn’t realize that the symptoms their children presented were linked to autism. Participants also weren’t made aware of the functional implications of these symptoms by clinicians, including increased risk of falls or injuries. Motor symptoms observed by caregivers during early development included poor handwriting, coordination, and posture — families reported that clinicians largely dismissed these and other motor concerns. Preliminary findings also indicate that resources are primarily discovered through community organizations (Facebook, etc.) rather than via clinician recommendation during the diagnostic process. This suggests the need for more effective communication between clinician and family. Most families also reported that they expect Hispanic families to experience more barriers to accessing resources than non-Hispanic families, suggesting a general community awareness of the potential biases encountered during interactions with healthcare professionals. If these trends remain prominent at the conclusion of our qualitative analysis, it could indicate that clinicians and healthcare professionals do not adequately explain the motor symptoms of autism to the families they treat. Perhaps, a systematic change to the diagnostic process for autism that improves resource access and includes a formal evaluation of motor symptoms is required to address these issues.
