Patients with Autism and COVID-19 Present Unique Challenges for Healthcare Providers, Especially in the Emergency Room

The recent Coronavirus Pandemic has increased stress created uncertain times for all of us but let’s not forget the 1:59 children who are diagnosed with autism and other cognitive disorders every year.  Families of children with autism learn early how to anticipate and manage a crisis.   But when the crisis involves emergency medical services or a trip to a hospital emergency room, it often takes a well-informed treatment team and caregivers to keep the situation under control.  The sights, sounds, smells, and accelerated pace of hospital emergency services can overwhelm the senses of an individual with autism. The following suggestions are prepared for emergency treatment teams, hospital clinicians, and the families of individuals with autism.

Distressed Kid
Communication: Remember Communication is Not Only Verbal
  • Expect minimal eye contact.
  • If your facility is certified in autism, immediately notify the caregivers when they arrive
  • Move slowly to the patient’s level to communicate.
  • Give praise and encouragement.
  • Use calming body language and give the patient extra personal space.
  • Whenever possible, prepare the team to work from the floor, the caregiver’s lap, or wherever the individual feels comfortable.
  • Use a quiet, calm voice and minimize words and touch.
  • Speak slowly in simple, non-medical phrases and pause between requests.
  • Using a neutral tone of voice, tell the caregiver and child everything the medical team is going to do right before they do it.
  • Allow extra time for responses.
  • Allow individuals to touch and hold equipment whenever possible.
  • If the patient is a child, use a toy doll, stuffed animal, or pictures to demonstrate a medical procedure whenever possible.
  • If the patient is an adult, remember the individual may not be able to understand direct questions or give informed consent for treatment.  
Involve the Caregiver: Let Them Be Your Guide to Success
  • Encourage caregivers to help redirect, reassure, and restore calm to an escalating situation.
  • Assess responses to pain; many children may either have a low or high tolerance to pain and may not feel typical sensations to heat or cold.
  • Always ask about the child’s primary form of communication.
  • If the child is nonverbal, make sure they have a method of communication familiar to them, such as a paper and pencil, pictures, gestures, or a communication device.
  • Ask the caregiver what has worked in the past while at medical visits.
  • Ask about sensory sensitivities to light, sound, touch, taste, and smell.
  • Be aware that some children will be attracted to shiny objects and may reach for or grab medical instruments.
  • Inquire about previous emergency situations and what worked to decrease the anxiety and maximize patient experience.
  • Remember, parents of children with autism are under tremendous stress in daily life; monitor the parents’ stress levels and respect individual methods of coping. 
Decrease Wait Time: Length of Initial Wait Time is #1 Indicator for Patient Experience
  • Recognize that just entering a noisy, crowded waiting room may trigger acute anxiety and challenging behaviors in children with autism. Accompany the primary caregiver and child to a quiet room for initial assessment and registration.
  • If the triage nurse determines the child will need to wait to see a physician, provide a quiet place, whenever possible.
  • Assess the child and perform procedures as soon as possible, to reduce or eliminate wait time.
  • If transporting a child to another area in the hospital, allow a primary caregiver to accompany the child.
  • Utilize hospital resources; some ER departments employ a play therapist whose job it is to help put young patients at ease to reduce anxiety or distract child’s attention during a procedure. 
Environment: Modified When Needed
  • Monitor the patient continuously for signs of overstimulation.
  • Move the child and caregiver to a private exam and treatment area, if possible.
  • Dim overhead lighting, if necessary.
  • Replace paper gowns and paper covering on the exam table with cloth.
  • Anticipate resistance if the child needs to be in a reclined position.
  • Set up a facilities audit by a certified expert to learn best practices throughout the industry. ibcces.org
  • Be aware that there may be a fight-or-flight response to any emergency situation. Arrange the exam room and treatment area to help motivate the child to stay in the room.
Hospital Workers
Be Positive and Upbeat: Reinforce Cooperative Behavior
  • Provide rewards through praise and encouragement for all cooperative behaviors.
  • Ignore behaviors that appear different (unusual body movements, unexpected vocalizations, inappropriate words or comments).
  • Use pictures to redirect attention and to show what will happen and what is expected.
  • When senses are overloaded and anxiety escalates, an individual with autism may respond with aggressive behaviors toward others, hospital equipment, or themselves. Make sure your staff is trained and certified to handle these situations.
Be Prepared, Be Proactive: Start Before the Patient Arrives
  • Notify the treatment team to be prepared, and to gently and quietly assist as needed.
  • Invest in ongoing training for your staff. Nothing will prepare your facilities better than professional training and certification.
  • Increase caregiver confidence by including information on your website about your autism programs, and certifications.
  • Clearly communicate the location of quiet spaces and sensory accommodations that are available.

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