By Jeanie Davis

A hospital’s strange sounds, sights, and people can be overwhelming for a child with autism. But a case manager who watches for behavioral cues — and listens carefully to parents — can help that child cope more easily, says Caroline Cortezia, MS, CCLS, supervisor of Child Life Services at UCSF Benioff Children’s Hospital. She works with children from birth through teens, often following them into adulthood. The types of behaviors she encounters range from ADHD to anxiety, to the more intense autism spectrum disorder (ASD).

“Autism is the most difficult behavioral disorder that professionals have to deal with,” says Cortezia. She emphasizes that not all children on the spectrum suffer from a mental illness like schizophrenia, bipolar disorder, or depression. “But when there is a mental illness on top of the autism, that’s the most difficult.”

The trend toward openly discussing these disorders resulted in more resources. It is easier to find placement and support, she adds.

These patients present to the hospital for reasons outside these disorders. For example, a child with autism also may suffer a comorbidity like seizure disorder or gastric disorder, she explains.

“They may become combative and aggressive due to the anxiety and their inability to communicate,” says Cortezia. “They may have trouble expressing how they feel, so they may act out physically or display self-injurious behaviors.”

As a child life specialist, she is called to help a patient to cope in the hospital setting. But, too often, the situation has escalated — and the child is displaying undesirable and unsafe behaviors, she explains. Her goal is to help case managers and other staff recognize signs of ASD, and provide tips to help calm the child and prevent escalation.

Because there are limited psychiatric units for children and adolescents with ASD, most admissions are to general child and adolescent psychiatric units. Staff may have limited experience with ASD children, and may not be prepared.

She believes a psychiatric unit is not the best placement for patient with autism, as the environment typically is too “sterile,” says Cortezia. “If they don’t have a mental illness, a psych unit will be difficult for them. They’re used to a routine, repetitiveness. If all their privileges are taken away, this will escalate their behavior.”

However, there are difficulties placing a patient with autism in a general unit. The child’s rigid routines and preferences will be disrupted, so any attempts at treatment will not be effective, she explains.

Cortezia advises helping parents plan:

• Provide all admissions forms early so they can be completed before hospitalization;

• Let the parents and child know what tests and procedures will be performed;

• Encourage parents to create a “social story” for the child, or provide caregivers with a social story they can use.

A social story can help familiarize children with the hospital environment. The story is comprised of words and pictures designed to help patients with autism know how to handle each situation. The picture book also helps them gain better understanding about how others feel, and why they should respond with a specific behavior.

The social story incorporates details to which the child easily relates, such as sequence of events, sensations they may encounter, length of events, and how to respond to their new environment.

“In a social story, you break down the scenario for the patient so they know what to expect,” says Cortezia. “When you come in from the garage entrance, this is what the hallways look like, here’s what the machine looks like, here are the sounds to expect, here’s what the staff will do. This helps them know what behaviors are expected from them.”

Take the young patient into a quiet room or space when they arrive. This will acclimate him or her to the hospital setting before entering a hospital room, Cortezia says. “Have the patient’s preferred music and a preferred item waiting for them. That calm environment will be a signal they need to match their behavior and remain calm.”

Parents and caregivers are ultimate experts, she says. “We don’t always listen to them, but using the techniques they already know that work with the child can really help in the moment.”

For example, the mom may suggest giving the child an item that reinforces the desired behavior, such as a food item, before a procedure. The nurse may resist, believing food is not appropriate. “But if the mom says the child is calm, and the patient does not have calorie or food restrictions, why would we not do something that will keep them calm?”

Cortezia advises hospital staff to find the trigger for any behavior, then figure out how to change the situation. “It’s easier to prevent a meltdown by handling it while it’s happening,” she says. “Because at that point, the patient is in such a heightened level of stress that they’re not reasonable anymore.”

Think about it: “If I’m the trigger, what is it that I’m doing? What can I change about the situation?” are questions to ask yourself, she says.

Focus on one behavior at a time, Cortezia adds. “Perhaps every time you walk into the room, the child starts screaming. You’re not there to give medication, but to coordinate care. But the child starts disrupting your conversation with the mother. You have to think about this: Is it something that I’m doing that causes this child to scream and interrupt the conversation? Could I ask the mom to step outside to talk instead?”

“Often, the behavior can be stimulant-induced, caused by white coats, the noise of machinery, or any repeated noises in the environment,” Cortezia says. “Even within an ED’s trauma room, you can bring down your speaking tone, and eliminate as much harsh stimuli as possible, which can help the patient adapt to that chaotic environment.”

If possible, eliminate continuous monitoring or take vitals less often, which will eliminate some of the touching, she adds. “Lower the volume on a monitor that keeps going off. Avoid changing to a hospital gown if possible,” she advises. “Use a calm and soft voice — anything you can do that allows for the patient to warm up to you. The patient may not make eye contact, but that’s OK.”

The child’s frustration can be caused by a trigger. “For example, if we have to keep the patient NPO [nothing by mouth] for an extended period, that may cause behavioral problems,” says Cortezia. “Because the child doesn’t have the ability to communicate their desire to eat or drink, they may resort to extreme behavior to get your attention.”

Or, the reaction may be caused by necessary treatment. “Let’s say we are putting a tourniquet on an 8-year-old’s arm. The child may start kicking and screaming because it causes an undesirable sensation. Their behavior allows for them to do what they want to avoid that sensation,” Cortezia explains. “The behavior can also be the side effect from a drug — causing delirium, hallucinations, or aggressive behaviors.”

The earlier the behavior is de-escalated, the better, Cortezia advises. “Seek the support of a specialist in anticipation of behaviors. It’s better to address the behavior as soon as it starts rather than to let it escalate.”

Some patients with autism will benefit from pharmaceutical interventions to help them stay calm. But, generally, it is best to focus on controlling the child’s environment and the staff’s interactions.

“We’re not here to change the child — just to make sure they get medical care,” says Cortezia. “Why not do these things that help them with that? As professionals, we need to focus on getting our medical tasks done, and then refer to professionals who can help further.”

When talking to a child with autism:

• Use concrete terms;

• Use a calm voice and low tone;

• If the child questions why everyone is calm, say “why not be calm? There’s no reason for us not to be calm”;

• Ask the child why he or she is not calm. If he or she says, “I’m scared,” say “I’ve been scared. I feel scared sometimes when you raise your hand at me. But you can also be calm when you’re scared.”

This starts a whole new type of conversation, says Cortezia. “It can help them stay calm, because we’re not shoving them into a room, and invading their space. We’re helping them stay calm.”

Set up patients for success when they leave the hospital, she says. “When you’re setting up a clinic follow-up visit, anticipate what the patient will need for that visit. If they have trouble sleeping because of disturbed sleep cycles, and they’re awake most of the night, make the appointment for a time that works with their sleep cycles. Think about this child’s needs, and plan the visit accordingly.”