A Book Designed for Children and Caregivers to Explain Autism Spectrum Disorder and Ease Related Anxiety
Cover design front and back
Overview
Pursuing a master’s degree in Biomedical Visualization at the University of Illinois at Chicago (UIC), part of the requirements for the degree is project research. My research project resulted in the creation of the book, Charlie and Friends, designed to increase understanding of autism symptoms and provide comfort through a joint reading. The book bridges a gap in joint engagement often observed between children with autism spectrum disorder and parent/caregiver, providing a vehicle to understand the diagnosis and an opportunity for shared reading and social interaction through discussion and activity sections at the end of each chapter. Learning goals were established for child and adult audiences, while the content and design choices were based on literary research and feedback from parents/caregivers of children (ages 8-12) with autism. Adobe Photoshop and InDesign were used for design, typesetting, and layout. To purchase the book: Amazon.com/Charlie-and-Friends
Writer and Illustrator: Laura Sheehy, MS
Guest Editor: Jamie Robash
Research Advisor: Kristin Mount, MAMS
Defense Committee: Leah Lebowicz, MS, EdD, CMI; Karen Bucher, MS, CMI
Content Experts: Dr. Edwin H. Cook, Jr., Olivia Ganguzza
Research Question
How can symptoms of autism spectrum disorder be used to inform the creation of a book that addresses challenges children with autism may face, increases understanding, and provides comfort to both children and family and caregivers?
Autism Spectrum Disorder
Autism is a neurodevelopmental disorder resulting in symptoms of reduced verbal and non-verbal communication, decreased shared attention, as well as marked social deficits (Lyall et al., 2017). In 2020, the Centers for Disease Control and Prevention reported that, in 2016, one in 54 children in the U.S. under the age of eight was diagnosed with ASD. Anxiety is common comorbidity affecting 50–80% of children on the spectrum (Kerns et al., 2017), while also affecting families and caregivers. Books based on learning theories and in-depth understanding of ASD are needed by children and caregivers of children with ASD. Input and anecdotal information from families and caregivers of children on the ASD spectrum was relied upon during the creation of Charlie and Friends, designed to be enjoyed together.
Butterflies used in the book symbolizing anxiety
Study Design
The study began with an information-gathering stage, including a review of books, websites, and scholarly articles. A data collection stage followed during which parents and caregivers of individuals with ASD in the approximate age range of eight to 12 answered multiple-choice, Likert scale, and open-ended questions regarding reading preferences of children with ASD through the Qualtrics platform. The survey was distributed through the Developmental Disabilities Family Clinic (DDFC) and Autism TAP Training Center at UIC. In addition, content expert Dr. Cook distributed to a network of parent/caregiver members of the Midwest Autism Consortium and further through their Facebook group for parents of children with disabilities. Inspiration was gleaned from both content expert, Dr. Cook, and content contributor, Olivia Ganguzza, reflecting social story and “cueing” concepts through a preparatory map.
Book Design
Each activity section includes discussion questions, vocabulary words, and an imaginative drawing or writing activity. Each is color coordinated and incorporates the intentional repetition of book characters.
A subtle color palette was chosen to reduce visual stimulation, based on research suggesting soft greens, blues, and pale pinks induce a feeling of calm. Animals and pets were introduced as key characters a source of comfort as well as a device for readers to explore body language and non-verbal communication. Images of nature, trees, grass, butterflies, and animals were included to reduce stress while reading. A page directed to the parent or caregiver that encouraged guided reading is included at the beginning of the book, and additional resources are provided at the end. Learning goals are included for both adult and child to keep in mind when reading. Optional activity pages at the ends of each main chapter include discussion questions, imaginative drawing (or writing), and related vocabulary lists. These sections were included based on the proven uses of visual aids in learning, memory, and deep understanding of complex topics. Discussion questions are included based on theories of guided reading presented by Scholastic. The questions are intended to prompt in-depth discussion between the child to increase engagement, joint attention, emotional reciprocity, and increase areas of social deficits often associated with symptoms experienced by children with autism. The text incorporates personal pronouns, as well as “internal state terms,” depicting different perspectives and mental states to deepen the emotional understanding of oneself and others. It is also written in the storyline that the book illustrations are the product of the main character, Charlie’s retelling of life accounts and memories.
