Michelle Badejo, CCLS
CHILDREN’S HOSPITAL OF PHILADELPHIA, PHILADELPHIA, PA
Children who are nonverbal can be a vulnerable population in the health care environment. Child life specialists can play a significant role in providing quality communication, advocating for more diverse modes of communication, and striving for positive health care experiences for all children. Since communication includes much more than speech alone, it is helpful to have a greater knowledge base about alternative ways to communicate with children. The following article includes some resources to consider when working with children who are nonverbal. While children may be nonspeaking for a multitude of reasons, the resources found in this article will mainly focus on nonverbal learning disorders such as Autism Spectrum Disorder (ASD) but could be applied to other nonverbal patients as well.
Books
■ Stewart, K. (2007). Helping a child with nonverbal learning disorder or Asperger’s Syndrome: A parent’s guide (2nd ed.). New Harbinger Publications Inc.
This book is an introduction for parents or professionals working with children who have nonverbal learning disorders. It offers specific strategies for intervening and helping children to cope with challenges such as communication and social skills.
■Crissey, P. (2018). Beyond words: Using paralanguage to communicate effectively. AAPC Publishing.
Facial expressions, body language, and tone of voice are all part of communication and sometimes referred to as paralanguage. This book for professionals offers an overview of paralanguage as well as curriculum and activities to help professionals teaching and working with children who are nonverbal.
Journal Articles
■ Riosa, P., Muskat, B., Nicholas, D., Roberts, W., Stoddart, K., & Zwaigenbaum, L. (2014). Autism comes to the hospital: Perspectives of child life specialists. https://www.researchgate. net/publication/268143636_Autism_Comes_to_the_Hospital_ Perspectives_of_Child_Life_Specialists
In this article, child life specialists have been recognized as valuable health care professionals who work with children who have ASD. Child life specialist were found to possess a variety of useful and appropriate skills when working with this population. These skills include rapport building, proactive communication, and patient advocacy.
■Batool, A., Jaehoon L., Devender, B., Youngmin, K., & Griffin-Shirley, N. (2019). Practitioners’ perceptions of the picture exchange communication system for children with Autism. Disability and Rehabilitation. https://www.tandfonline.com/doi/full/10.1080/096 38288.2019.1620878
Practitioners report both confidence and success while using the picture exchange communication system (PECS) to improve communication when working with children with ASD; however, it is noted they expressed that PECS was time consuming.
■Liddle, M., Birkett, K., Bonjour, A., Risma, K. (2018). A Collaborative Approach to Improving Health Care for Children with Developmental Disabilities. Pediatrics. https://pediatrics.aappublications.org/.
This article discusses “adaptive care plans” (ACP), and how child life specialists may use them to create partnership between caregivers and the healthcare team. The goal of an ACP is to provide a more proactive and positive health care experience for children with developmental disabilities.
Downloadable Resources
■The National Child Traumatic Stress Network. (2004). Facts on traumatic stress and children with developmental disabilities.https://www.nctsn.org/resources/facts-traumatic-stress-and-childrendevelopmental-disabilities
Statistical information about the incidence of traumatic experiences for children with developmental disabilities and special considerations for therapeutic interventions when working with these children.
■ Autism Canada. (2020). Physician handbook. https://autismcanada.org/resources/physician-handbook/
A guide useful to any health care professional working with children who have a nonverbal learning disorder. Especially helpful are the tip sheets about hospital visits for children with ASD and learning disorders beginning on page 31.
■AssistiveWare B.V. (2020). Quick communication boards. https://www.assistiveware.com/learn-aac/quick-communication-boardsutm_source=website&utm_medium=pdf&utm_campaign=communicationboards
Printable communication boards that may be used on the go or when tablets
are not available.
■Autism Speaks Inc. (2020). ATN/AIR-P Parent’s Guide to Blood Draws. https://www.autismspeaks.org/tool-kit/atnair-p-parents-guide-blooddraws
This guide is a resource for health care professionals working with children who have ASD. It offers strategies and information to manage pain, provide distraction, and use visual cues.
■Vanderbilt Kennedy Center (2011). Visual Supports and Autism Spectrum Disorders. https://vkc.vumc.org/assets/files/resources/visualsupports.pdf
This guide is a resource around the topic of using visual supports for patients who have ASD. It offers background on what visual supports are, why they are important, how to use them, and additional resources on ASD. More visual supports for medical professionals from Vanderbilt Kennedy Center can be found at: https://vkc.mc.vanderbilt.edu/vkc/triad/services/visual/
Websites
■ Autism Canada. (2020). Other Therapies. https://autismcanada.org/living-with-autism/treatments/related/
In addition to information about living with ASD, at autismcanada.org you will find an overview about the positive benefits of complementary therapies such as music, art, and recreation when working with individuals who have ASD.
■AssitiveWare B.V. (2020). Learn AAC. https://www.assistiveware.com/learn-aac
AssitiveWare.com is a website dedicated to augmentative and alternative communication (AAC) resources. Here, professionals can learn more about AAC, how it decreases vulnerability for nonspeaking individuals, and how to use AAC in medical setting.
Apps
■ AssistiveWare. (2020). Proloquo2go (Version 7.2.5) [iOS] https://apps.apple.com/us/app/proloquo2go/id308368164?mt=8
Proloquo2go is an augmentative and alternative communication app that allows nonverbal children to communicate needs and create sentences by tapping on symbols. Proloquo2go can be helpful when working with nonspeaking individuals who have ASD, Cerebral Palsy, or speech impediments such as dysarthria. It is customizable and may be used with both younger and older individuals.
■ Good Karma Applications, Inc. First Then Visual Schedule HD. (Version2.27). [iOS] https://apps.apple.com/us/app/ftvs-hd-first-thenvisual/id624035410?ls=1
Users of this app may create customizable daily schedules that are accompanied by illustrations. Video may also be added to each event in the schedule to demonstrate the specific steps involved in each task. Illustrations and visual aids make this app a meaningful way to communicate with both nonverbal children and verbal children alike.
Social Stories
■ ABA Educational Resources. (2020). Social Stories. https://www.abaresources.com/social-stories/
Social Stories are short, simple, and illustrated scenarios that may be used to exchange information with someone who has a nonverbal learning disorder, such as ASD. Similar to prep books, social stories can be personalized to include a specific place or individual(s). They use visual supports to show a step by step sequence of events and may be reviewed numerous times prior to hospital visits and during the visit as needed. They can be used to describe events, activities, expectations, and social norms. There are several free social story guides and other resources listed at abaresources.com.
■University of Rochester Medical Center (2020). Developmental & Behavioral Pediatrics: Social Stories. https://www.urmc.rochester.edu/childrens-hospital/developmental-disabilities/services/visualsupports.
aspx
Golisano Children’s Hospital at the University of Rochester Medical Center has a variety of online social story examples available, using PECS symbols as the visual aids.
■Rady Children’s Hospital – San Diego (2020). Autism Discovery Institute: Social Stories. https://www.rchsd.org/programs-services/autism-discovery-institute/hospital-visit-tips/social-stories/
Rady Children’s Hospital provides several sample social stories for specific procedures, as well as a template to customize your social story. Rady Children’s Hospital includes social stories for EEGs, pre-op, radiology, and more.
Other Resources
■ Therapy in a Bin. (2020). Stages Language Builder: Emotion Cards. https://www.therapyinabin.com/products/stages-language-builderemotion-cards/
Help children identify and communicate emotions with this set of 80 illustrated cards. Featuring women and men from various cultural backgrounds depicting five basic emotions – happy, sad, angry, surprised, and disgusted, these cards may be used when working with nonspeaking children to help communicate what they are feeling.
■ American Sign Language University (2015). ASL first 100 signs.http://www.lifeprint.com/asl101/pages-layout/concepts.htm
For individuals who communicate primarily through sign language, it can be a comforting gesture when a caregiver uses sign language to communicate with them. While a medical interpreter should always be sought, learning a few signs may demonstrate willingness to care and aid in building rapport. This video demonstrates 100 common signs that children may use to communicate with their caregiver. Also included is a practice activity/test. In addition to these basic words, you can also use the side bar to learn how to sign other helpful words like “hospital” and “doctor”.
For children who have ASD, sensory issues and difficulty communicating needs only adds to the stressors of the hospital environment (Autism Speaks Autism Treatment Network, 2018). Unfamiliar situations may cause high levels of anxiety and stress for a child with ASD that might lead to challenging behaviors (Myles & Hudson, 2008). Child life specialists can help provide a more positive health care experience for children who have ASD by taking time to understand the child’s unique needs and communication preferences (Myles & Hudson, 2008). This can be done by working with caregivers to discover what communication, sensory, or safety needs are most appropriate for their child, and communicating these needs to the multidisciplinary team (Autism Speaks Autism Treatment Network, 2018).
Michelle Badejo is a child life specialist at the Children’s Hospital of Philadelphia. Prior to becoming a child life specialist, Michelle worked as a pediatric hospice and respite nurse. Combining both nursing and child life experience, Michelle continues to be an advocate for children’s health and well-being. Michelle can be reached by email at badejom@email.chop.edu for any inquiries about this article.
References:
Autism Speaks Autism Treatment Network. (2018). ATN@Work: Personalizing hospital care for children with autism. https://www.autismspeaks.org/science-blog/atnwork-personalizing-hospital-care-children-autism
Myles, B., & Hudson, J. (2008). Working with children with ASD: Tips for medical staff. https://researchautism.org/working-with-children-withasd-tips-for-medical-staff/