Mary Ann Gill, MEd, CCLS
Child Life Specialist
Monroe Carell Jr. Children’s Hospital at Vanderbilt
Using inclusive and affirming language surrounding disability. Language is rapidly evolving; the words that many of us learned in school to describe autism and other disabilities may not reflect the language preferred by the disabled community today. For example, many self-advocates are reclaiming identity-first language, choosing to describe themselves proudly as “autistic people” rather than “people with autism” (Taboas et al., 2023). Groups like the American Psychological Association (APA) and National Institute of Health (NIH) suggest using a mix of person-first and identity-first language until you know whether the individual or group you are speaking about has a clear preference (APA, 2021; Wooldridge, 2023). Personally, I default to identity-first language in my personal conversations but ask individual patients and families what they prefer during clinical care. Additionally, many autistic people find labels such as “high-functioning/low-functioning” or “mild/moderate/severe” to be unhelpful and even harmful (Kaap & Ne’eman, 2020). Instead, you may hear people describe varied levels of “support needs,” which can fluctuate between different environments or phases in an individual’s life. Of course, not all autistic or otherwise disabled people agree on language. I feel safest around colleagues who are open to adapting the language they use based on both current trends and individual preferences. Consider whether the language you are using for day-to-day conversations, interview questions, assignments, and chart notes would make an autistic person feel welcome and respected.
Identifying common conversational scripts. I am constantly analyzing the patterns of neurotypical conversations to improve my masking abilities. As a visual thinker who finds comfort in repetition, I found it helpful to create scripts for common procedural preparations. When my spring 2020 internship was interrupted by the onset of the COVID-19 pandemic, I spent some of my down time writing out detailed verbal scripts. I created different variations for age/developmental stage, including information to address common questions and misconceptions for each stage. I would not suggest that our job is completely formulaic or that we should rely on a script during clinical interventions; one of my favorite things about kids is that they are constantly surprising me with new questions and reactions. However, I think many of us could identify some common phrases and conversational patterns that we hear ourselves repeating multiple times per day, and it helped me to see those in written form. These days, I can still see my script in my head when I’m preparing a child for surgery or an IV start.
Providing access to calming sensory environments. One morning during my first internship rotation, I was involved in a tough bereavement in the PICU. I lasted about two more hours in clinical care before a meltdown took over. Autistic people can experience meltdowns in different ways. For me, this looked like a burst of uncontrolled tears, an unrelenting loop of negative self-talk in my mind, and a diminished ability to vocally communicate. My rotation supervisor let me sit for a while in her office, lit only by a strand of twinkle lights. I listened to quiet instrumental music and slowly felt myself return to a calm baseline. Later in the semester, the leadership team set up a self-care “spa” in our sensory room to kick off Child Life Month celebrations, and my co-intern and I got to sign up for a time to sit in the room and relax together. I often hear my colleagues talk about better ways to meet our patients’ sensory needs, but I love working with people who encourage me to meet my own as well. These days, I’m grateful for my two wonderful officemates who share my aversion to fluorescent lighting and my passion for collecting the latest and greatest fidget toys.
Creating resources for visual learning. While there is no universal learning style for autistic people, many of us do benefit from having information written down or illustrated. I was able to let my rotation supervisors know that this was an important way for me to learn. I took primary responsibility for this process, but I always appreciated when my supervisors helped me create visual resources. One printed a “face sheet” for me with headshots, names, and titles of various staff on the unit, which I used as a helpful quick reference when trying to decide who to seek out with a question or request. Another assigned me to build a model pancreas from loose parts. The hands-on, visual process helped me better understand what was happening inside our patients’ bodies while also preparing me to deliver high quality, developmentally appropriate diabetes education. Today, when I use a photo prep book, teaching vein, or sample central line for preparation, I see how visual resources can benefit not only children but also their adult caregivers. My visual thinking has inspired me to add new educational resources to my team’s collection. For example, when preparing children and families for their first port access, I started placing toothpaste and Tegaderm on the back of my hand to model the proper application of EMLA cream. My teammates and I have seen an increase in patients coming in with their numbing cream applied properly compared to when we were using verbal preparation alone.
Breaking the ice and sharing rapport with medical staff. I currently see patients on three different inpatient “pods” and a busy outpatient clinic. I spend a lot of mental energy trying to learn the unique personalities and communication styles of each staff member – e.g., figuring out which nurses like to slow down and chitchat versus which ones want me to cut to the chase when I need something. The rotations that students go through are relatively short, so it was helpful when my preceptors shared their rapport with unit staff and gave me specific advice about how best to interact with each person. When I started each rotation, I appreciated my supervisors initiating and modeling interactions with different staff on the unit. As a student, this helped me work through the whole process more quickly and easily. As a Certified Child Life Specialist, I have drawn on my past supervisors’ examples to successfully collaborate with a multidisciplinary team of diverse personalities.
Giving clear expectations for performance and evaluation. At the end of my first internship rotation, my supervisor and I both filled out the same form to evaluate my performance, then met to compare answers. The answer scale went from 1 to 6, with 6 representing independent performance. I spent the last week or two of that rotation operating independently on the unit, so I gave myself 4s, 5s, and 6s on some of the items. As we met, my supervisor explained that she used the scale differently, viewing the highest score for someone halfway through their internship as a 3. Although our answers were still relatively comparable, I spent the rest of the evaluation panicking about my failure to follow these previously unexplained rules. I have since learned to be kinder to myself and to ask specific questions until I have a clear understanding of what is expected. Many autistic people value clear, direct, and literal communication (Wilson & Bishop, 2021); supervisors should apply this when communicating expectations for students.
Offering multiple ways to participate in class. Seminar classes are my social anxiety nightmare. I am slow to process auditory information and struggle to keep up with large group conversations. I learned a few seminar survival tactics, including showing up with detailed notes and offering my opinion near the beginning of class before the conversation topic veered too far from what I had prepared for. But I truly thrived in classes with more varied methods of participation: “pair and share” questions, small group work, and even online discussion boards for pre-class and post-class processing. My current department has historically made decisions via large group, spoken, free-for-all conversations. I’m thankful for my colleagues who have been open to workshopping new participation methods, which we hope will be more inclusive of neurodivergent and other marginalized voices.
As you read this article, you may have reflected that many of these recommendations could benefit any child life student, autistic or not. The principle of universal design for learning (UDL) encourages educators to support diverse groups of learners by adopting a flexible teaching style and offering a variety of instructional methods to all (Bernacchio & Mullen, 2007; CAST, 2018). By offering multiple means of engagement, representation, action, and expression for all students, educators will naturally create a more inclusive and supportive environment for neurodivergent learners (CAST, 2018). Koller (2016) also points out that UDL is a helpful framework for offering healthcare education to pediatric patients. UDL can and should be applied to education of adult healthcare students, and our professional colleagues have discussed the use of UDL in educating diverse cohorts of nursing and occupational therapy students (Coffman & Draper, 2022; Davis et al., 2022; Murphy et al., 2020). The child life field would benefit from engagement in similar conversations as we seek to recruit and support a more diverse pool of emerging professionals.
Every Certified Child Life Specialist starts off as a student. As a field, we cannot solve our lack of diversity until we improve our support for students from underrepresented groups. In exploring ways to meet the needs of autistic or otherwise neurodivergent child life students, ongoing research will certainly be helpful in building more empirical support for the above suggestions. However, for student supervisors and educators, the time to act is now. Professionals from related fields, disabled child life specialists, and students themselves have plenty to teach us about how to increase our support for this population. It’s time to start listening.
Bernacchio, C., & Mullen, M. (2007). Universal design for learning. Psychiatric Rehabilitation Journal, 31(2), 167-169.
Coffman, S., & Draper, C. (2022). Universal design for learning in higher education: A concept analysis. Teaching and Learning in Nursing, 17, 36-41.
Davis, D., McLaughlin, M. K., & Anderson, K. M. (2021). Universal design for learning: A framework for blended learning in nursing education. Nurse Educator, 47(3), 133-138.
Kapp, S.K., & Ne’eman, A. (2020). Lobbying autism’s diagnostic revision in the DSM-5. In: Kapp, S. (Ed.), Autistic community and the neurodiversity movement, pp. 167-194. Palgrave Macmillan, Singapore.
Koller, D. (2016). ‘Kids need to talk too’: Inclusive practices for children’s healthcare education and participation. Journal of Clinical Nursing, 26, 2657-2668.
Murphy, L., Panczykowski, H., Fleury, L., & Sudano, B. (2020). Implementation of universal design for learning in occupational therapy education. Occupational Therapy in Health Care, 34(4), 291-306.
Taboas, A., Doepke, K., & Zimmerman, C. (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 27(2), 565-570.