Improving Healthcare Encounters of Patients with Autism Spectrum Disorder: Setting the Stage

               Admit it – not many people like going to the doctors. As much as our medical career-bound selves would love to say that everyone is excited for nurses to poke them with needles and for doctors to use all kinds of instruments to look in their ears, throats, and eyes to determine what’s going wrong or right with their bodies; this isn’t true for everyone. It can, in many ways, be an uncomfortable and even stressful experience for patients. As a result, we realize as students that it takes good communication and empathy in order to make a patient feel safe and at ease in your exam room.

                I know, this information is nothing new. But now take this seemingly uncomfortable scenario that say, you as a patient can be imagining when you go to get care, and add the setback of having difficulty communicating your thoughts and feelings. Maybe the noise in the waiting room is overwhelming, the lights in the exam room are too bright, and the unexpected comings and goings of nurses and other staff are just too disorderly and unpredictable for you to make sense of. Maybe the procedures done during the physical exam are foreign and take you by surprise. Maybe you miss certain cues that your nurse or doctor is trying to give you with what they say and how they say it.

                Yes, “maybes” like this can seem endless, but these experiences are frequently the reality for those diagnosed with Autism Spectrum Disorder. As described by the DSM V, Autism Spectrum Disorder (ASD) is a continuous spectrum of disorders involving persistent deficits in social communication and interaction. Additionally, individuals often experience restricted, repetitive patterns of behavior, interests, or activities that can be so pervasive that they can interfere with daily functioning.¹ Furthermore, many individuals on the spectrum (though not all) also are frequently found to have co-occurring intellectual disability and sensory sensitivities,^2,3 which can make healthcare encounters all the more traumatic for the individual.  

This is the point that should cause our ears as budding health professionals to perk up. “Traumatic for the individual”? But I thought I was helping? How can we help these patients if our encounters can feel so stressful to them? Although these questions are difficult to answer, together, we will make the attempt through this blog series. Specifically, in this series we will breakdown the healthcare encounter into parts and identify where barriers to care can manifest for these patients, and identify strategies that we as future medical providers can use in order to better communicate with our patients and allow them to feel safe and cared for.

Additionally, it should be noted that this series will focus on the care of those with ASD and coinciding intellectual disability and sensory sensitivities. This focus will allow us to be equipped by the end of this series with a toolbox of strategies that we can use with patients of varying diagnoses, sensitivities, and abilities; so that we may be able to connect with and effectively provide for many different individuals as we progress in our careers in medicine.

                                                                                                                    Alexis Matarangas, DUCOM 2019

REFERENCES

1. Association, A.P. Autism Spectrum Disorder in Diagnostic and Statistical Manual of Disorders 50 (2013).
2. Intellectual Disability and Stigma: Stepping Out from the Margins, (Palgrace Macmillan, London, GB, 2016)
3. Giarelli E, N.R., Turchi R, Hardie TL, Pagano R, Yuan C. Sensory Stimuli as Obstacles to Emergency Care for Children with Autism Spectrum Disorder. Advanced Nursing Journal 36, 145-163 (2014).