Diversity, Equity & Inclusion: Caring for Patients With Autism

My son is 29 years old and living with autism. It’s been challenging as a parent to raise him in a world that doesn’t always understand or accommodate his unique needs. Frustrations with the local education system inspired my wife and I to open Lionsgate Academy, a charter school in the Minneapolis-St. Paul area for teenagers on the autistic spectrum. My personal experience as a father as well as my career as a surgeon led me to consider the medical care individuals living with autism receive, and I realized there is very little known about how to optimize the surgical experience for neurodivergent patients. It requires plenty of planning and focusing on making each phase of care as comfortable as possible for the patient, the family and the caregivers.

There is a wide spectrum of autism spectrum disorder (ASD) presentations. You might deal directly with patients themselves or coordinate their care with the counsel of a loved one or family member to better understand which stimuli may be either soothing or disturbing. Patients with autism often rely on routines and consistency to remain emotionally regulated. They might have abnormal sensitivities to the sights and sounds of surgery — the smell of antiseptics, the bright surgical lights and the beeping of monitors. You can imagine how the sensory experiences of the surgical encounter, as well as the introduction of new and unfamiliar healthcare providers, can cause them to feel frustrated or anxious. It’s helpful to walk through the perioperative pathway, from pre-op to PACU, and envision how patients with autism might respond to the journey.

Allow for plenty of time to develop a care plan for these patients, who might need more in-depth communication about the guidelines they must follow before and after their surgery to achieve optimal outcomes. Consider scheduling procedures as the first case of the day to reduce the length of stay and limit deviation from their normal life routines. Invite patients and their caregivers to tour your facility, meet the care team and familiarize themselves with the environment. Telling patients stories about the care they will receive can also be an effective strategy for helping them prepare for the operation.

One of the challenges with autism is its large spectrum of severity, making it difficult to establish standardized guidelines of care. That’s also why it’s important to learn as much as possible about individual patients. Consider talking to their special education teacher, behavioral therapist or primary care physician to better understand their specific needs. Use pre-op assessments to identify a patient’s triggers for anxiety and maladaptive behaviors, as well as calming mechanisms. It’s important to understand the underlying causes of their behaviors instead of focusing on managing the behaviors themselves. Try to determine how much information about the surgical experience you should share to allay their fears of the unknown without causing undue worry.

You can find out this information by asking patients or their caregivers open-ended questions such as, “What can we do to make the surgical process more comfortable?” Share the feedback you receive with the entire care team and document the specific needs of individual patients in their medical record. When planning for the next day’s cases, flag procedures involving patients with autism and notify the perioperative team during the morning huddle of the extra care they will require.

Whenever possible, assign specific staff members to care for their ASD patients for the duration of their stay. This consistency can help them feel less anxious. Most patients do best in quiet, calm and peaceful environments. Admit them to a private pre-op bay — hang a “Do Not Disturb” sign outside the space — dim the lights and limit the stimuli.

Performing spot checks of vital signs instead of constant monitoring could reduce the patient’s level of anxiety. Administering pre-op medications can be a challenge. Perform the task in a calm environment and employ strategies and methods the patient or their caregiver uses at home. These might include mixing the medications with favorite drinks or using specific methods of administration such as an oral syringe.

Selecting the proper analgesics and anxiolytics is also important. For example, midazolam’s rapid onset, short duration and minimal side effects make it the preferred pre-op anesthetic for ASD patients. It can be given orally to calm patients before IV starts and mixed with Dr. Pepper to mask its bitter taste. 

Although some providers believe patients with autism don’t experience the same level of post-op pain as neurotypical individuals, they’re just as reactive to painful stimuli but express their discomfort in different ways and are less likely to report it. Pain scales such as the Child Facial Coding System can be helpful, but it’s often best to rely on parents or caregivers — who know the patient’s subtle signs of discomfort such as grimacing or shaking — to gauge their level of post-op pain. Also make sure the pain medications prescribed after surgery don’t have the potential to interact with other medications the patient is taking.