A practical guide for health professionals to meet the needs of individuals with Autism Spectrum Disorders.
Understanding Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) is a lifelong neurological disability that affects a person’s ability to communicate, understand language, and socially interact with others. The first signs of ASD usually appear as developmental delays before age three.
Every person with ASD is different. However, there are some common characteristics of individuals with ASD that may occur:
• Difficulty using and understanding language.
• Difficulty using social skills and navigating social situations.
• Over or under sensitivity to sound, sight, taste, touch, smell or internal sensations.
• Repetitive behaviors such as spinning or lining up objects, moving or talking in a repetitive way, or echoing other people’s speech.
• Difficulty with changes to surroundings or routines.
• Challenging behaviors such as aggression or self-injury and difficulty regulating emotions.
What Healthcare Providers Need to Know About Patients with Autism Spectrum Disorder
Caregivers of individuals with ASD learn early how to anticipate and manage a crisis. But when the crisis involves emergency medical services or a trip to an 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 emergency services can overwhelm the senses of an individual with ASD. The following suggestions are prepared for emergency treatment teams, hospital clinicians, and the caregivers of individuals with ASD.
Decrease Wait Time, Whenever Possible
• Recognize that simply entering a noisy, crowded waiting room may trigger acute anxiety and challenging behaviors in individuals with ASD; accompany the primary caregiver and individual to a quiet room for initial assessment and registration.
• If the triage nurse determines the individual will need to wait to see a physician, provide a quiet place, whenever possible.
• Assess and perform procedures as soon as possible to reduce or eliminate wait time.
• If transporting to another area in the hospital, allow a primary caregiver to accompany the individual.
• Utilize hospital resources; some ER departments employ a Child Life Specialist whose job it is to help put young patients at ease, to reduce anxiety or distract an individual’s attention during a procedure.
Treatment Team: Let the Caregiver Be Your Guide to Success
• Always ask about the individual’s primary form of communication.
• If unable to speak, make sure the individual has as 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 during medical visits.
• Ask about sensitivities to light, sound, touch, and smell.
• Assess response to pain; many individuals may either have a low or high tolerance to pain and may not feel typical sensations of heat or cold.
• Be aware that some individuals will be attracted to shiny or novel objects and may reach for or grab medical instruments.
• Inquire about previous emergency situations and what worked to decrease anxiety and calm the individual. If the individual has a special interest, talking about this may help the individual to feel more at ease.
• Remember, caregivers of children with autism are under tremendous stress in daily life; monitor the caregivers’ stress levels and respect individual methods of coping
Modify the Physical Environment
• Move individual and caregiver to a private exam and treatment area, if possible.
• Dim overhead lighting if necessary.
• Replace paper gowns and paper covering on exam table with cloth.
• Anticipate resistance if the individual needs to be in a reclined position.
• 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 individual to stay in the room
• Monitor the patient continuously for signs of overstimulation.
Model a Caring Attitude for the Treatment Team
• 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 patient 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 patient everything the medical team is going to do right before they do it.
• Allow extra time for response.
• Expect minimal eye contact.
• Allow the patient 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.
Reinforce Cooperative Behavior
• Provide rewards through praise and encouragement for all cooperative behavior.
• 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.
Be Prepared, Be Proactive
• When senses are overloaded and anxiety escalates, an individual with ASD may respond with aggressive behaviors toward others, hospital equipment, or themselves.
• Behavior can include prolonged screaming, biting, scratching, dropping to the floor, dropping to the floor, and kicking, etc.
• Encourage caregivers to help redirect, reassure and restore calm to an escalating situation.
• Notify the treatment team to be prepared, and to gently and quietly assist as needed.