A Plan for Patients With Autism Spectrum Disorder

An inside look at the many benefits of a comprehensive special accommodations program for ASD.

For patients with autism spectrum disorder (ASD), visiting a surgical facility can be a harrowing experience. When that happens, the patient and their family can be unduly stressed and traumatized, and the event could foster a negative opinion of health care in the patient that could negatively impact their quality of life down the road.

Five years ago, Amanda Whippey, MD, FRCPC, a pediatric anesthesiologist with Hamilton (Ont.) Health Sciences and assistant clinical professor at McMaster University, coauthored an article in these pages that described her facility’s special accommodations program for children with ASD. Dr. Whippey says the program is now applied in varying degrees for all pediatric surgery patients in her health system.

“When we started the special accommodations program, it was directed to a particular group of patients — patients with ASD who required quite a bit of support and intervention,” she says. “Since that time, our special accommodations program is integrated into our practice as a standard of care. It’s become part of our standard order set. Not every child requires everything, but it’s been nice to see how the team has gotten on board with doing things that make the perioperative process easier for a lot of kids, particularly our kids with autism.”

The program’s key elements are tailored for children with ASD, but also could prove helpful to keep in mind when treating adult patients with ASD. “We have been called over the past five years to help with autistic adults, with things like environmental modification or pre-medications or creating a plan,” says Dr. Whippey.

What does the special accommodations program entail? Here are its numerous key components:

• Perform a preoperative evaluation. Dr. Whippey says an in-person preoperative assessment is the most important step to prepare for patients with ASD, not just to gather information about the patient, their needs and their triggers, but also to get a preview of how they will react when visiting your facility. “It’s a bit of a litmus test,” she says. “There is nothing quite as useful as being able to bring the patient into an environment that’s not an operative environment, but it’s still outside of their daily routine. You can assess a lot of things you really can’t over the phone.” For some patients, however, these in-person preprocedural visits are a huge stressor that can be counterproductive, she notes. “My preference is to see patients in person, but we have had families that literally cannot get the patient out of the car, so we end up doing the pre-op assessment in the parking lot,” says Dr. Whippey. “You can also still get an awful lot of information just talking with families and caregivers over the phone.”

The preoperative assessment can uncover crucial information to help plan for the patient’s arrival on the day of surgery. “We want to know things like how severe their ASD is, whether there’s a component of anxiety, whether there’s been a history of traumatic hospital interactions or treatment noncompliance,” she says. “We want to know the patient’s communication style, whether they’re verbal or minimally interactive, what communication devices they may use. Sensory processing is really important for kids with autism, so we want to learn whether they have trouble with loud noises, lighting, touch and transitions, and what their coping strategies are, whether that’s distraction, motivators or parental presence and support. Then we’ll make an induction plan.

“The biggest thing for an ambulatory center is a preoperative conversation with the parents or caregivers,” adds Dr. Whippey. “If your center doesn’t do in-person pre-op visits, an over-the-phone interview will still give you a lot of information, but it does need to be prior to the day-of — at least a week ahead would be great. Sometimes I see patients the day prior, which is not optimal if you need to arrange for home sedation, for example. It can be done, but it’s rushed. If you can speak with parents or family a week before, you can talk about work they can do at home to make the day-of a little bit easier.” Assessing the day of surgery, she says, will not work with patients with autism. “If you’re just seeing someone through the door day-of, you’ve kind of missed the boat,” says Dr. Whippey. “When people show up and there’s not a good plan in place, it’s very hard to go in cold and have everything run smoothly.”

• Prescribe at-home preprocedural sedation for certain patients. Dr. Whippey’s program instructs parents or caregivers to administer a medication like lorazepam to some patients before they leave home for the surgical facility. “Sometimes patients will escalate before I even visit them just by getting out of their daily routine and coming to the hospital,” says Dr. Whippey. “If someone is at a ‘10’ in terms of their agitation and anxiety when they arrive, trying to provide some premedication or deescalate that situation is very challenging and often requires much higher doses of those medications at the hospital. We found that giving some pre-sedation or some relaxing medications at home prevents that escalation on arrival to the hospital, and then our drugs are much more effective or potentially not needed. Lorazepam is safe to be given at home, and it can be ordered by the family doctor, pediatrician or sometimes our staff as preprocedural sedation.”

• Schedule patients with ASD as the morning’s first case. This helps minimize NPO and wait times, disruption to the patient’s timetables and routines, and the noise and activity level the patient will walk into. “For example, earlier in the day, there may not be people in the recovery bays,” notes Dr. Whippey. “A flexible admissions process has been really helpful for kids with autism.” Other providers and staff should be aware that the patient has ASD or sensory processing issues.

• Avoid use of name bands, allergy bands and other invasive actions. “These create more stress than probably most things,” says Dr. Whippey. “It’s a little thing, but something people don’t think about.” In that preoperative vein, she also suggests avoiding gowns and instead allowing patients to wear their own clothing after induction, taking vitals only when indicated, reducing as much visual and aural noise as possible from the patient’s surroundings (or using a quiet room if available) to minimize sensory input, and employing visual storyboards to help with communication.

“One thing we’re trialing right now is virtual reality devices for kids with autism to help block out the chaos,” adds Dr. Whippey. “Sometimes we’re not able to control the perioperative or external environment as much as we would like, and some kids prefer to have more distraction to drown out the noise.”

• Modify the OR. Dr. Whippey’s program calls for several simple modifications to the OR in advance of the arrival of a patient with ASD, specifically dimming the lights, placing drapes over all equipment, appropriately tailoring the type of anesthetic induction to the individual patient and limiting OR traffic. In some cases, the presence of caregivers in the OR might be required.

• Expedite the discharge process when appropriate. Being in the recovery room is often very challenging for kids with autism.

“The great thing about many of our interventions is that most of them don’t cost anything,” says Dr. Whippey. “But it does require some planning and forethought.” She notes that while surgical facilities are heavily process-driven, often those processes should be modified to best accommodate patients with ASD. “Maybe things don’t get done in the usual order. Maybe you don’t have the patient move room to room, and instead staff move to the patient so the patient can stay seated and quiet.

Maybe caregivers stay with the patient through the induction process, which may not be the norm at your ambulatory center. Maybe the premedication program requires training of the nursing staff, extra meds to be present, the expertise of the anesthesiologist. If you don’t already have a premedication program, that would be a longer-term goal, but a lot of things can be changed just by slightly modifying the environment.”

Dr. Whippey says providers in her system are now much more aware of the special needs of patients with ASD. “Through in-services and just seeing the results of the program, everyone on our staff is now quite comfortable dealing with the majority of our neurodivergent patients,” she says. “Everyone has rounds and hallway discussions.”

She says the rest of the surgical industry has made progress on this issue as well over the last five years. “Thankfully, there has been a lot more attention paid to how we deal with children with autism,” says Dr. Whippey. “For example, the Society for Pediatric Anesthesia now has a special interest group looking at children with special needs and behavioral challenges. Every major pediatric anesthesia conference I’ve attended in the last five years has had a talk on special accommodations or treatment of patients with autism or neurodivergence, which is fantastic. On a very high level, there are groups of people getting together talking about these issues. Five years ago, that was not the case. It’s very much more at the forefront now.

“At the same time, do I feel every site has the support and means to do all these things? Probably not,” she says. “At pediatric hospitals, it’s something people are very aware about and have the skills and the resources to do. Children with autism showing up to general community hospitals, for example, probably have a harder time.” OSM

Five Years of DEI

What We’ve Covered So Far

Over the past five years, Outpatient Surgery Magazine has made the conscious effort to highlight diversity, equity and inclusion in the healthcare industry with a regular DEI column and an annual cover story on the subject. Here’s a look at our coverage leading up to this year:

• 2020: In our inaugural DEI issue, we featured several surgical professionals who shared their personal experiences of racism and hope for a more inclusive future.

• 2021: Our June issue featured 12 pages of DEI content starting with a powerful essay by Ariel August, MD, titled “The Power of Embracing Labels: I’m sharing my experiences as a gay, Black, female surgeon to advance diversity in surgery.”

• 2022: Our editorial team reported five stories of various healthcare workers overcoming daunting odds to provide standout care to patients.

• 2023: We dedicated the entirety of DEI section to a profile of one remarkable surgeon and chief diversity officer, Jennifer H. Mieres, MD, FACC, MASCNC, FAHA, and her employer Northwell Health’s decade-plus record of prioritizing DEI.

—Outpatient Surgery Editors