Mary Ann Gill, MEd, CCLS
Vanderbilt University Medical Center
April is Autism Awareness and Acceptance Month. As a late-diagnosed autistic adult and a Certified Child Life Specialist (CCLS), I have a dual perspective on the experiences of autistic individuals in the healthcare system. I believe that people of all neurotypes can become successful child life professionals and that neurodiversity adds great value to our field.
I am sharing these stories to illustrate how my lived experience as an autistic person has helped me provide better care to neurodivergent patients and families. This is not to say that non-autistic child life professionals cannot gain the knowledge and skills necessary to provide more neurodiversity affirming care. Learning from resources created by autistic self-advocates - like this blog post! - is a great place to start.
Please note that my use of identity-first language here reflects my own preference and the preference of many other autistic people (Taboas et al., 2023). Some children and caregivers may prefer person-first language. When working with an individual child and family, you can assess and use the language they prefer.
Fellow Self-Advocate
During an April dental appointment, I complimented a 12-year-old patient’s shirt. The patient responded by noting that he was purposefully wearing red rather than blue that day as a symbol for autism awareness. (Check out #RedInstead for more on this movement.) In explaining his reason, the patient mentioned “I Am Autism,” an ableist ad that was briefly aired by Autism Speaks in 2009. I first came across this appalling video on an autistic self-advocate's social media page. The patient and I took turns reciting lines from the ad, laughing as we competed to see who could shock the dental hygienist most. “I am autism. I work faster than pediatric AIDS, cancer, and diabetes combined.” “If you’re happily married, I will make sure that your marriage fails!” This conversation helped me build quick rapport and encourage the patient’s self-advocacy skills. Over time, I was able to fade out support as the patient grew confident at verbalizing his own needs during appointments.
Tuning In to Sensory Details
Once, I was called to support a nonspeaking autistic 5-year-old for an IV placement. When I walked into the room, I immediately noticed the bright, buzzing fluorescent light overhead. I spoke to the nurse performing the procedure, who agreed to switch to a softer light over the bed.
No family members were present during the procedure. A second nurse was at the bedside to stabilize the patient’s arm. Intermittently, that nurse would rub the patient’s forehead in an attempt to soothe him. I know soothing touch can be effective for patients of all neurotypes, but I also know that autistic people are more likely to experience allodynia, sensitivity to light touch (Vaughan et al., 2020). Personally, my allodynia can be triggered by repeated touch to the same area of my skin - like having my forehead rubbed. The patient was appropriately upset throughout the procedure, but I started to notice increased crying and tensing specifically during the times the nurse was rubbing his forehead. I gently pointed this out and asked if we could limit unnecessary touch for the remainder of the procedure. We focused on non-tactile support strategies, and the IV placement was completed quickly and safely.
Leaning In to Special Interests
Upon meeting a 17-year-old with a new chronic diagnosis, I asked all the get-to-know-you questions I would typically ask to a teenager. The patient gave short, one-word answers in response. I offered various activities for normalization, but the patient shared that she preferred to play a particular game on her gaming laptop. As I asked more specific questions about the game, the patient’s eyes lit up and she began to talk at length.
Many autistic people become experts in areas of specialized, focused interest (Nowell et al., 2020). While small talk may not be our strong suit, we can talk at length about our interests, and there’s nothing like meeting someone who shares - or at least shows excitement about - one of our interests.
I started to reserve the first 20-30 minutes of each visit just to listen to the patient talk about the game. When I wanted to change the topic of conversation to offer preparation, diagnosis education, or emotional support, I would first ask permission to interrupt, and assure her I wanted to keep learning about the game afterward. Our communication blossomed; the patient appeared more relaxed and open to discussing her experience of illness. We even used the occasional gaming metaphor to process stressful medical events.
Resources for Ongoing Learning
If you are a fellow autistic child life professional or student, I hope you feel seen, accepted, and celebrated this month! If you are a child life professional who plays a role in student selection and/or staff hiring, I hope my stories have helped encourage you to build a neurodiverse team. Below I will list a few of my favorite resources for ongoing learning so you can continue to promote autism acceptance all year round.
- Unmasking Autism by Devon Price - my favorite book on autism, especially helpful for late diagnosed autistics and the people who work and live with them
- Demystifying Disability: What to Know, What to Say, and How to be an Ally by Emily Ladau - my favorite book on disability in general, offers helpful explanations for trends in the disability community such as the growing preference for identity first language
- Autistic Self Advocacy Network - a nonprofit autism advocacy organization run by and for autistic people, offers helpful resources like the Healthcare Transition Toolkit for adolescents and young adults
- Autistic Women and Nonbinary Network - another autistic-led advoacy organization offering great resources, published the book Sincerely, Your Autistic Child
- Learn Play Thrive - resources and networking for neurodiversity affirming therapists, created by an occupational therapist but often relevant to other disciplines
- Ask an Autistic - a Facebook group where you can ask questions about autism and get answers from autistic people themselves
References
Nowell, K. P., Bernardin, C. J., Brown, C., & Kanne, S. (2020). Characterization of special interests in autism spectrum disorder: A brief review and pilot study using the Special Interests Survey. Journal of Autism and Developmental Disorders, 51, 2711-2724. doi:10.1007/s10803-020-04743-6
Taboas, A., Doepke, K., & Zimmerman, C. (2023). Short report: Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 27(2), 565-570. doi:10.1177/13623613221130845
Vaughan, S., McGlone, F., Poole, H., & Moore, D. J. (2020). A quantitative sensory testing approach to pain in autism spectrum disorders. Journal of Autism and Developmental Disorders, 50, 1607–1620. doi:10.1007/s10803-019-03918-0