It goes without saying that enduring a hospitalization can rattle even the most grounded of persons. For most people, the uncertainty of illness combined with the expense are enough to create an anxiety diagnosis on top of whatever else is going on. The loss of routine, favorite foods, pleasurable activities and socialization only add to the challenge of a hospital stay. The patient with a comorbid high-functioning Autistic Spectrum Disorder (ASD) faces all these things as well, but through a slightly different lens. As medical professionals, the adaptability of a healthcare professional in caring for a patient with high functioning ASD can make a significant difference in his or her ability to adjust to the rigors of a hospital stay and heal.
Generalized Typical Presentation of ASD
Individuals with high functioning ASD, formerly known as Asperger’s Syndrome, as a generalization, process social endeavors differently than “neuro-typical” people. As the name implies, there is a “spectrum” component to this disorder, making generalizing both difficult and potentially harmful. A consistency with most people diagnosed with ASD is an inflexibility to routine changes. Naturally, this creates an automatically tense atmosphere for the patient whose entire world has been altered by the schedule of the hospital versus that of their own world, which often has been created to decrease stress and optimize their talents and tastes.
While the hospital’s schedule will differ from the patient’s, its predictability can eventually enhance the patient’s coping, particularly during longer stays. If the patient knows when to expect medications, vital signs, therapy and physician visits, even in a generalized way, it lowers anxiety and increases their coping. Try hard to maintain as strict of a schedule as possible with an ASD patient, for their sake and for your own.
Socializing with a high functioning patient with ASD
Patients with ASD do have social needs and crave interaction. However, they also have intense interests that can consume them even in the most disruptive of places. While he or she may appreciate the predictability of the hospital schedule, they may struggle with changing caregivers and any lack of consistency, both in processes and in the level of interaction desired by the caregiver. Take the patient’s cues quite literally; subtlety will likely not be on the menu. If they are not openly conversant, pleasantly do your tasks and allow them to retreat inside themselves. This is more a sign of comfort with you than dislike of you.
Interruptions in thoughts, activities or even television shows can trigger hostility or anxious reactions that may seem shocking and out of proportion. It may be helpful to find out from the patient directly how they like their day to go and seek their input on the schedule for the day. Writing this on the white board and sticking to it can go a long way to reducing the likelihood that your patient is stressed. Recognize that changing shifts and varying caregivers will be a huge stress for this patient. Bedside report, formal good-byes and introductions while going over the patient’s preferences can ease the strain for them, as well as for the oncoming shift.
Sensitivity to Sensory Input
It is possible your patient with high functioning ASD may struggle with the sounds, smells, tastes and tactile input that comes with a hospitalization. They may find it challenging to tolerate the ID band on their wrist. Some may find the linens of the hospital disruptive on their skin. Others may struggle when the IV pump beeps, or even from the soft, barely perceptible sound the pump makes as the gears move to deliver medication at the proper drip rate. The taste or scent of medications, cleaning supplies or even you (perfume or lotions anyone?) can cause this patient a great deal of stress and possible acting out due to overstimulation.
Accommodate the patient however is reasonable. A family member bringing sheets from home or their own pillow may help. Activities that keep them engaged and able to “check out” from their surroundings can help a great deal. For children, often small motor activities are enticing and helpful - video games, Legos, building blocks, arts and crafts, even being allowed to decorate their room can all help them cope with a world that makes little sense and offers little comfort while in the hospital. Adults may enjoy similar activities and certainly can be capable of speaking with you about what might make their stay easier for them.
While an individual with high functioning ASD can be a challenge, they can also be your easiest patient. They tend to be rule followers, if they understand the rules, and tend to hold others to the same standards they hold for themselves. Frequently they are the opposite of needy once they understand and participate in the organization of the day to day and hour to hour rhythms of their stay. Offer social contact and refrain from taking lack of eye contact or in-depth conversations personally. This patient may, if they like you, perseverate on a favorite topic that can make it difficult to retreat from their room to attend to other tasks, but these monologues will make them feel heard and understood, even if you have to cut them short. Offer as much as you can reasonably give and seek their input; most know their quirks well and are happy to share them with you. Recognize the beautiful world that lies in the brain of a patient with high functioning ASD and you will be most of the way toward giving them a good stay and yourself a fulfilling shift.