Children with autism spectrum disorder (ASD) have an increased rate of hospital contact and are likely to require sedation and anesthesia for surgeries, procedures, and imaging tests. Lee et al. has demonstrated that children with autism were about two to three times more likely to experience an injury that needs medical attention. These hospital encounters create a stressful environment for patients with autism due to their need for a routine and inability to adapt to a quickly changing environment. Additionally, patients with autism are at an increased risk of adverse events occurring during hospitalizations. These adverse events, as described by Taghizadeh and colleagues, are more likely to occur if there is a failure to consider a child’s routine, special interest, sensory sensitivities, and level of understanding. Preparation, understanding, and knowledge by the patient, parents, and care staff helps facilitate a smooth transition and ultimately a beneficial outcome.
Preparation for Anesthesia
Surgery is a stressful time for any patient, but especially those with ASD as they may be overwhelmed due to the numerous new people they will meet, the new experiences of sights and sounds, and the inability to verbally communicate. Therefore, it is important to prepare early for the encounter. In his article entitled “In the Doctor’s Office: A Parent Perspective,” Mills discusses how social stories can help facilitate a successful experience by decreasing surprises through visual desensitization. The stories often include simple, reassuring descriptions and photos of different places the patient may visit while at the hospital, whom they might meet and what might happen. These social stories can be tailored with specifics by the facility that will be taking care of the child.
Another valuable preparation step is the development of an individualized coping plan. Swartz and colleagues have shown an individualized plan is helpful in the perioperative management of children with ASD and that knowledge of the severity level may be helpful in determining the need for preoperative sedation. During the preoperative phone call, it is important to identify the patient’s cognitive level, methods of communication, interests, stressors/triggers for maladaptive behavior, sensory challenges, as well as previous medical encounters and how they do with transitions. From this information, the team can modify the experience to best accommodate the child’s needs and avoid potential triggers and warning signs of overload. As the child’s advocate, parents can be proactive in requesting sensory friendly resources and a quieter environment. A sensory-adapted environment can help to reduce anxiety and improve compliance with medical situations. Many pediatric facilities have child life specialist who may help throughout the perioperative care. If the facility does not typically take care of ASD patients, it is important to bring coping and distraction objects. Additionally, it is helpful to discuss with staff how they can better provide care for the patient.
During the preoperative phone call, it is important to discuss if there is a flexible admission process. For example, is priority timing given to ASD patients, so they do not have to wait all day for their surgery or procedure? Is it possible to decrease the wait time prior to the start of surgery? Can other imaging studies, lab work, and/or tests be accomplished during the same anesthetic?
Day of Procedure
Elliott and colleagues have shown that children experience higher preoperative anxiety if they have a diagnosis of ASD. Additionally, they found more parents of children with autism said they would need a premedication as compared to parents of typically developing youth. During the preoperative discussion with the anesthesia team, they may suggest taking doses of home medications prior to arrival to the hospital to ease the transition to the perioperative setting.
There are several sedative type medications that may be given depending on the child and their behavioral needs. These may include midazolam (Versed), ketamine, or dexmedetomidine (Precedex); which may be given via oral, nasal, or intramuscular injection. It is important for the providers to know what medications the patient is on at home and if any adverse reactions happened in the past to determine the best medication, if needed, and route of administration. Arnold et al. found patients with ASD were less likely to receive a standard premedication; however, they were significantly more likely to receive a nonstandard premedication – most commonly intramuscular ketamine. Sometimes, a combination of medications may be necessary in rapidly escalating maladaptive behaviors for the safety of the patient and staff.
Depending on a facility’s policies and procedures, a pediatric surgical patient will either undergo general anesthesia via an inhalation mask prior to intravenous line placement or have an intravenous line placed prior to the operating room. Depending on many patient factors including patient age, weight, and comorbidities, a decision is made as to when the intravenous line will be placed. At pediatric-specific facilities, the intravenous line is typically inserted after inhalational induction, unless it would be deemed unsafe to do so. With proper preparation and the assistance of guardians, intravenous placement may be quick and benign.
Discussion with the anesthesia team regarding anti-emetics and effective analgesia depending on the procedure is necessary. With knowledge of many patients’ oral aversions, effective control of risk of nausea and emesis is imperative. Typically, patients will receive prophylaxis medications as well as intraoperative hydration to decrease the risk of nausea postoperatively. Taghizadeh and colleagues found it’s hard to distinguish between pain, nausea, anxiety, or emergence delirium in patients with ASD as they regain consciousness. Valuable information for recovery room staff is understanding a patient’s typical response and expression to pain. Arnold et al. suggests that patients with ASD were 50% less likely to complain of pain, and likely to have similar postoperative pain experiences to patients without ASD. Vlassakova recommends the use of the FLACC (Face, Legs, Activity, Cry, Consolability) scale to assess pain. A multimodal approach for adequate analgesia may consist of acetaminophen, anti-inflammatories, opioid medications, and possibly regional anesthesia. Depending on the surgery, regional anesthesia will help numb the operative location for several hours after the procedure. Additionally, the use of familial terms and simplistic language is beneficial in the recovery process. Typically, patients with ASD are best served by early removal of intravenous cannula and by allowing them to recover in a quiet room with parents and comfort items present.
The perioperative environment poses challenges for children with autism due to changes in their daily routines, sensitives to sensory input, and communication difficulties. Parents of children with autism are the experts and best advocates for the care their child receives during the procedure. Patients with autism require more consideration in the perioperative process to include priority scheduling, decreased wait times, sensory accommodations, and early discharge.
Sean Antosh, MD, is a board-certified pediatric anesthesiologist at Dayton Children’s Hospital in Dayton, Ohio. He has clinical interests in improving the perioperative experience and care of children with Autism Spectrum Disorders. Recently, he has developed dedicated sensory adaptive environments in the perioperative environment at Dayton Children’s. He may be contacted at: firstname.lastname@example.org for further questions or information.
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Elliott, AB, Holley, AL, Ross, AC, Soleta, AO, Koh, JL. A prospective study comparing perioperative anxiety and posthospital behavior in children with autism spectrum disorder vs typically developing children undergoing outpatient surgery. Pediatr Anesth. 2018; 28: 142– 148.
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