Tending To Patients Walking On The Autism Spectrum

Prior to graduating from fellowship, I decided to reflect on the strengths and weaknesses of both my medical education and post-graduate training. One of those identified weaknesses was understanding, treating, and effectively communicating with individuals on the spectrum of autism in a clinical or surgical setting. I recently treated a teenage patient with autism for a chronic ingrown toenail of the great toe. The amount of communication and comfort necessary prior to performing the procedure took greater than 90 minutes. I would admit I felt significant discouragement and frustration during the consultation, but the neglected ingrown toenail was extremely painful and required my immediate attention. At that moment, I realized it was not my patient’s fault that I could not effectively convey the importance of removing this painful toenail deformity. However, I was not adequately equipped with the knowledge to handle this patient population throughout my training. I do not recall one lecture or continuing education course that addressed treating patients with autism. Fortunately, I was able to remove the offending nail border, and the patient was very appreciative.

In order to begin to address this challenge, in this month’s Forum, I invited a longtime friend and colleague, Elena Marte, Ed.S., a rising educational expert with a specialization in education for individuals with special needs. Marte will provide insight into her personal experience, management advice, and common pitfalls health care providers encounter when communicating with patients on the spectrum.

Insights From An Educational Expert On A Unique Patient Population

The unnerving but necessary task of scheduling a doctor’s appointment for an individual with special needs has greatly impacted me. As I share these experiences, I’m grateful to have the perspective of a parent of two children with autism and a sibling to an adult brother with autism and epilepsy. Through the years, my parents encountered various specialist physicians with my brother, each with their own understanding of how to approach a non-verbal adult with special needs and behavioral issues. With each doctor’s visit proving as unexpected as the next, I could not help but wish there was a standard care pathway for individuals like my brother. My parents’ experiences did not wholly resonate until I became a parent in the same situation. It’s truly a shared fear among families with an individual with special needs that their loved one will be hurt or in pain, without a way to express themselves. Additionally, there is guilt that follows if challenging behaviors and frustrations arise during a consultation because of their inability to communicate effectively.

However, health care provider interactions with a patient on the spectrum can improve by using research-based methods to communicate, which may decrease frustrations or behaviors that can disrupt a consultation. Recommendations to put into practice include:

• using emotion charts to inquire about feelings throughout the visit;

• body-part visuals for the patient to point to locations of pain;

• task analysis sequences of simple procedures (ie giving an injection, putting on an adhesive bandage) to visually explain the process in small increments; and

• requesting the caregiver bring a highly preferred item belonging to the individual to provide comfort or incentivize the doctor’s visit.

Additionally, various studies show that integrating technology (ie tablets, multi-message devices, and/or artificial intelligence) with voice output prompts and models would prove highly effective for the individual to communicate effectively.^1,2

These strategies during patient visits may not seem ideal. However, they can significantly improve doctor/patient relations for these special individuals if implemented consistently. The positive interactions my brother and children have had with a few of their health care providers that demonstrated such a level of understanding are proof. By discussing research-based evidence to support individuals on the spectrum during doctor visits, I believe there will be more awareness of creating sustainable practices with the outcome in mind of enhancing the experience for all participants.

Dr. Johnson’s Final Thoughts

I would like to express gratitude for Marte’s commentary on a subject for which, prior to my recent clinical encounter, I thought I was prepared and knowledgeable. It is my intention that her voice as both a professional and a caregiver resonates with providers across the globe to be more proactive in preparation for appointments with our patients that walk on the spectrum. 

Dr. Johnson is a Clinical Assistant Professor in the Division of Metabolism, Endocrinology & Diabetes-Podiatry (MEND) at the University of Michigan in Ann Arbor.

Elena Marte, Ed.S., is currently a doctoral candidate in Special Education at Florida International University in Miami.

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1. Aresti-Bartolome N, Garcia-Zapirain B. Technologies as support tools for persons with autistic spectrum disorder: a systematic review. Int J Environ Res Public Health. 2014;11(8):7767-7802.

2. Ploog BO, Scharf A, Nelson D, Brooks PJ. Use of computer-assisted technologies (CAT) to enhance social, communicative, and language development in children with autism spectrum disorders. J Autism Dev Disord. 2013;43:301–322.