Strategies for Parents to Support Medical Professionals in Providing Care for Children with Autism Spectrum Disorder Megan F. Rehard, BA, MHS Candidate Research Supervisor: Ashleigh Ohmes Boyd, MHS, CCC-SLP Department of Communication Science and Disorders, University of Missouri MU Leadership Education in Neurodevelopmental Disabilities (LEND) Program Background Information Important Areas to Address in the MCP Promoting a Positive Experience: Strategies for Everyone Always try to communicate with the child Keep communication simple and literal Keep number of overall commands to a minimum Work with the parent/HCP to help with patient communication Augment communication with visual schedules and instruction Do not insist on eye contact Do not separate from familiar caretakers, objects, or set routines Introduce changes gradually Give child time to process information Avoid saying “no” and limit talking when child is exhibiting negative behaviors Use specific rules and post where child can read them Gain access to a quiet environment if possible Use role-playing when introducing new people, medical tools, and procedures Avoid stress triggers if possible Use books/videos about visiting the doctor and the hospital Explain procedures step-by-step and give rewards for each step Provide positive reinforcement and tangible rewards Behavioral challenges arise when exposed to unfamiliar settings (e.g., hospital) Understanding the behavior may lead to effective intervention Collaboration between family and health care providers (HCPs) is crucial Families possess essential information that can positively contribute to the care process Communication: How does the child express wants and needs? State your child’s main form of communication (e.g., verbal communication, signs, gestures, communication tools) Emphasize that communication should be clear, concrete, and pre-sented in simple sentences Indicate how your child typically expresses pain (e.g., crying or screaming, self-injury or aggression, or with spoken language) Social Interactions: How can HCPs interact best with the child? List your child’s strengths, favorites, and interests; recommend that HCPs draw on these during interactions Suggest that the HCP explain procedures step-by-step, allow child to first inspect instruments, and/or model exam on a familiar adult Recommend the use of distracters such as games, music, videos Describe avoidance behaviors or attention seeking behaviors Sensory/Behavioral: What can be done to prevent or lessen the child’s distress? List any sensory processing differences (e.g., bright light, loud sounds, big crowds, certain textures associated with touch) Specify whether child will be comfortable with or tolerant of wearing medical garb (e.g., hospital gown or bracelet) State common antecedents (i.e., triggers) to behaviors Request to wait in a quiet area, away from the waiting room Rationale for Investigation What We Know What We Don’t Know Those with ASD have almost 13 times more annual outpatient visits than children without ASD Children with ASD are 20% more likely to be hospitalized for injuries Co-morbidities, in addition to ASD, raise the number of visits and time spent during visits Children with ASD have more anxiety and behavioral challenges than children without ASD; these behaviors stress parents, families, and health care providers The benefits of family-developed medical care plans for children with ASD are not well known Specific criterion and objectives of care plans and their implementation methods are not well understood Caregivers may not realize that information they can provide is valuable to health care professionals and the health care planning process Medical Care Plan (MCP): A medical care plan is an advocacy tool that is used to document specific techniques to facilitate a healthcare visit. It characterizes the needs of a patient as a first step to improve a healthcare encounter by listing information that is pertinent to the individual, such as the following: Potential Barriers to Care Details regarding your child’s communicative, sensory, and behavioral differences that may affect the treatment process Family-Provided Care Management Tools Summary of your child’s strengths and interests Strategies for interacting with your child Suggestions for managing challenging behaviors Family-Driven Goals for Care Family indicates what constitutes a successful outcome (e.g., leave hospital well treated and avoided use of anesthetics, overall positive experience, or child’s needs were addressed to the best of the facility’s capabilities) Summary Providing specific information to HCPs in the areas of communication, social skills, and sensory differences is helpful for the development of an appropriate medical care plan Parents and caregivers can have this information ready in the form of a written medical action plan when the need arises to contribute to a more efficient and less distressing healthcare encounter Preparing and using such information can aid in the management of challenging behaviors, the interactions between caregivers, their child, and the HCPs, and thus improve the quality and timeliness of care Predominant Challenging Behaviors in Medical Settings Behaviors are caused by significant communication differences, unfamiliarity of people and setting, anxiety, wait times, sensory issues, and being overwhelmed Non-compliance Sensory defensiveness Hyperactivity Self-injury Sources Broder-Fingerts, S., Ferrone, C. F., Giauque, A., & Connors, S. L. (2014). Residents’ knowledge and comfort with caring for children with autism spectrum disorder. Clinical Pediatrics, 53(14), 1390-1392. Bultas, M. W., Johnson, N. L., Burkett, K., & Reinhold, J. (2016). Translating research to practice for children with autism spectrum disorders: Part 2. Journal of Pediatric Health Care, 30(1), 27-37. Johnson, N. L., & Rodriquez, D. (2013). Children with autism spectrum disorder at the pediatric hospital: A systematic review of the literature. Pediatric Nursing, 39(3), 131-141. Kopecky, K., Broder-Fingert, S., Iannuzzi, D., & Connors, S. (2013). The needs of hospitalized patients with autism spectrum disorders: A parent survey. Clinical Pediatrics, 52(7), 652-660. Nicholas, D. B., Zwaigenbaum, L., Muskat, B., Craig, W.R., Newton, A. S., Cohen-Silver, J., … Kilmer, C. (2016). Toward practice advancement in emergency care for children with autism spectrum disorder. Pediatrics, 137(s2), 205-211. Trenago, M. K., & Cheak-Zamora, N.C. (2012). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6, 1023-1031. “This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number #T73MC00022, grant title Missouri LEND. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.”