Recovery room nurse seeks advice on comforting kids with autism

April 29, 2016

While every patient with autism is unique, our expert has general advice on making the day of surgery more autism-friendly

I am a recovery room nurse, and this week we had a little boy waking up from anesthesia, who was also autistic. We quickly had his parents come in to help comfort him. I want to find information on how we can best help children who have autism when they’re waking up from anesthesia in the recovery room and share it with my colleagues. What’s helpful? What’s not? Help appreciated!

This week’s Got Questions answer is by Susan Scully, a board certified operating room nurse and team leader in the perioperative complex at the Children's Hospital of Philadelphia (CHOP). CHOP is one of 14 centers in the Autism Speaks Autism Treatment Network.

Editor’s note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.

Thank you for your question. I’m sure you appreciate that there’s no simple or universal answer to what works best when a pediatric patient with autism emerges from anesthesia.

Each person with autism has different needs, emotional triggers and coping skills. So it’s important to customize de-escalation techniques, communication systems and rewards for each child.

The best way to care for these patients is with advanced planning. This starts with the parents or other caregivers. They know their child best. 

A questionnaire for parents

I suggest developing a list of standardized questions to ask parents and other caregivers. An ideal time to ask these questions is during a pre-surgical appointment or phone call.

Ideally, you and your colleagues will develop such a questionnaire in close consultation with an autism specialist to ensure that it best fits your recovery room and your hospital’s unique parameters.

However, I can offer some general questions for you to consider. For example:

  • What are the child’s special interests? What does he or she like to do?
  • What does the child dislike? Does he or she have any phobias?
  • How does the child like to communicate? Is he verbal? Does he communicate better with an assisted communication device or pictures?  
  • What is the best way to convey information to the child? Again, does he respond better to visually presented information versus spoken directions?
  • What is the best way for us to gather information from this patient? For example, what’s the best way to find out what he wants or what might be distressing him?
  • Does the child struggle with challenging behaviors such as aggression, biting or temper tantrums? 
  • If so, what triggers these behaviors? 
  • What’s the best way to prevent or de-escalate these behaviors?
  • What special comfort items work best with your child? (Encourage the parents to bring them to the hospital and have them ready when you call them into the recovery room.)
  • What other information do you (the parent) feel is important for the staff to keep in mind? (Try to honor all requests.)

Let the questionnaire be the basis of discussions with the patient and his or her parents or other caregiver. In this way, you can have a suitable plan ready for the day of surgery. 

General tips autism-sensitive care

Again I want to emphasize that every patient’s care plan will be different. Here are some general tips to keep in mind for patients who have autism:

  • Make sure that the parents or other caregivers understand you need them to be immediately available when the child comes out of surgery.
  • Many people who have autism are unnerved by the flicker of fluorescent lights – especially overhead lights. So it can help to have the patient wake up in a dim (not pitch-dark) room or alcove.
  • Many patients who have autism find the pressure of a weighted blanket to be calming. 
  • Try to mute nearby monitors and alarms. A quiet, calm environment is best
  • Keep instructions simple. Use “stop” instead of “no.” Tell the patient what you want him or her to do, instead of what not to do.
  • Many people with autism have a tendency to take things quite literally. So take care with your choice of words and use flexible terms such as “usually” and “probably” if you’re not sure of something.
  • We avoid using the phrase “put to sleep” as a child with autism might associate that with putting an animal to sleep, rather than the induction of anesthesia.
  • Tell the patient what you are going to do – even if the patient doesn’t appear to be paying attention.
  • Allow a little extra time for the patient to process what you said and then respond. This is important. Many people with autism take much longer than the “neuro-typical” patient to process and respond.
  • Use the least amount of restraint for as little time as possible – and only if restraint is necessary.
  • Allow “stimming,” or self-calming repetitive behaviors such as hand flapping.
  • Try to minimize the number of different staff people working with the child. If possible, allow the patient’s pre-operative nurse to take care of the patient postoperatively. 
  • Hold conversations with the parents or other caregivers out of the patient’s earshot. This, too, relates to processing issues. While overhearing a conversation, the patient with autism may process only part of the conversation, possibly leading to fear-provoking misinterpretation. After you finish talking out of earshot, allow the parent or other caregiver to relay the appropriate message, if any, to the patient.

Developing a social story

Many people with autism benefit from some advance familiarity with new places and procedures. And many tend to best process information that’s presented visually. I highly recommend the use of illustrated social stories to help hospital patients with autism become familiar with the places and procedures they will experience on the day of surgery.

The Autism Discovery Institute of San Diego’s Rady Children’s Hospital has developed a number of sample social stories for procedures such as the pre-op exam. (See sample page below.) The social story is illustrated with step-by-step photos of a child going through procedures at the hospital. You might consider using the institute’s “create your own social story template” for creating a customized social story for your recovery room and/or hospital.

A social story about the recovery period would include photos of the unit and the procedures that will happen on the day of surgery.

If possible, make the social story available to the families several days if not weeks prior to surgery. This gives the patient plenty of time to mentally prepare. I also recommend having the social story available in the waiting room for families who may not have used it beforehand. Encourage them to use it with their child.

Keep yet another copy of the social story in the recovery room. You can use it to help the child follow along the steps of what is happening.

Consider offering a pre-surgery tour
If possible, it would be wonderful if you could offer children and families an actual tour of the pre-op area and recovery room prior to the day of surgery. Consider it as something to offer on a case-by-case basis, with the help of your hospital’s child-life specialist..

Finally, I want to mention a wonderful resource recently published in a special ATN/AIR-P supplement to the journal Pediatrics. Our ATN/AIRP clinicians developed guidelines for easing in-patient hospital stays for children and teens who have autism. 

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