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ASERT has compiled resources for those with autism and those who care for people with autism relating to the current COVID-19 outbreak.
The ACT for Autism training module introduces emergency department personnel to the unique characteristics and needs of people with an Autism Spectrum Disorder.
Understanding the relationship between an increased state of anxiety or stress and the characteristics of autism can enhance the successful delivery of service by emergency department personnel and avoid escalation of unwanted behavior and compromised care.
Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition including impairments in social interactions, difficulty with communication, impairments in response to
sensory stimuli and repetitive, stereotyped behaviors. It is estimated that up to 1% of the
general population may be affected by ASD . Whether better diagnostic techniques or an
actual rise in incidence, the prevalence of ASD is rising and healthcare settings are seeing an
increase in these individuals seeking care (Venkat, Jauch, Russell, Crist, & Ferrell, 2012).
The first generation of people to be formally diagnosed are now in their 50s (Morton-Cooper,
2004). Morton-Cooper (2004) suggests that although we are accustomed to hearing of the
condition in relation to children, as a disorder becoming obvious in later life and in old age,
cases of autism could go unrecognized. Staff who have worked in emergency departments are
quite often confronted by distressed and aggressive patients exhibiting challenging behaviors
and who may find it difficult to communicate their needs effectively. “It stands to reason that
at least some of these will be patients with autism, diagnosed or otherwise. Common sense
also suggests that a proportion of the elderly mentally ill in the general population are also
likely to be people with undiagnosed autism who have battled through life without the
appropriate understanding and support and who remain psychologically, emotionally and
perhaps physically damaged as a result.” (Morton-Cooper, 2004, p.17).
A needs survey conducted by the Pennsylvania Department of Public Welfare, Bureau of
Autism (2011) identified barriers and limitations to accessing healthcare for individuals with
autism. Families and caregivers reported facing difficulty finding providers who understand
autism and have the training required to address the needs of an individual with autism. This is
particularly difficult for adults with autism because adult providers often do not have the tools
or training to provide services to individuals with autism. The results also indicated unwanted
outcomes when accessing health care services. “Over half of caregivers of adults reported
dissatisfaction with discharge planning, inclusion in treatment planning, and quality of
treatment. Caregivers in all age groups report the most dissatisfaction with discharge planning
(43% to 65%)” (Bureau of Autism, 2011).
The rising prevalence of ASD, the aging population of those diagnosed or undiagnosed with
ASD and the limited training and understanding of ASD by general healthcare providers,
indicates the need for more concerted and hands-on-hand training for service providers to
address behaviors that may accompany autism and ongoing support to address these problems
in their practice (Bureau of Autism, 2011).
According to the Center for Disease Control and Prevention (2012), Autism Spectrum
Disorder (ASD) is a neurodevelopmental disorder. Individuals with an ASD demonstrate
significant social, communication, sensory and behavioral challenges. ASD is a neurological
disorder, which causes people with an ASD to interpret information differently than other
The fact that ASD is a “spectrum disorder” means that each person is affected differently and
may demonstrate a range of abilities and disabilities from very mild to severe. People with
ASD share some similar characteristics, such as problems with social interaction, sensory and
behavioral excesses and communication difficulties.
“It is estimated that 1 in 88 children in the United States have an Autism Spectrum
Disorder” (CDC, 2012). Autism occurs across all ethnic, racial, and socioeconomic
populations. Both males and females are affected; however, autism is 5 times more likely to
occur in males than in females” (CDC, 2012).
Individuals with autism cannot be identified by their physical appearance. They look the same
as anyone else. They are identified by their behavior, and, because autism is a spectrum disorder, it presents differently in each individual. What works for one individual with autism may not work for another (Rzucidlo, 2005-07).
Although no two individuals with autism are alike, all persons with autism exhibit difficulty with communication, sensory processing, and social and adaptive behavior skills with varying degrees from mild to severe. Each of these three defining characteristics are inter-related, and it is often very difficult to separate the effects of one or the other on how that person will react
in any given situation. Therefore, it is important to understand what you may observe, why it
may be occurring and how the person with autism may react.
A person with autism:
A person with autism:
A person with autism:
Understanding the unique characteristics of a person with autism is the first and most critical
step in providing the successful delivery of services.
The cognitive skills of a person with autism are often different. For example, these individuals
may have a poor understanding of cause and effect and have little concept of consequences
(Rzucidlo, 2005). They have a literal, restricted and rigid pattern of thinking. They often have
a limited perspective of situations or circumstances and tend to view things as right or wrong,
yes or no, black or white. They have an obsessive desire for routine and repetition. They also
have a tendency to over select irrelevant environmental stimuli (Webber & Scheuermann,
2008). For example, they may fixate on or stare at an object in the room — a badge, earrings,
buttons (Rzucidlo, 2005).
Emergency department personnel should be aware of the following in caring for patients with
ASD in the acute care setting:
Not every person with autism will display all of the commonly defined behaviors all of the time
or to the same degree. However, in times of increased anxiety, these behaviors will become
more pronounced. Emergency situations increase the likelihood that the person with autism
will be exposed to loud and unfamiliar sights, sounds, people, and events all leading to
increased anxiety. It is important for emergency personnel to take the necessary steps to
reduce anxiety and increase understanding so that emergency services can be carried out
more efficiently and effectively.
There will be times where the protocol below is simply not feasible due to constraints of time
and medical necessity. In those cases, pharmacologic and physical restraints may be necessary
to effectively treat the patient. The use of benzodiazepines or ketamine is preferred due to
their safety profile and rapid effect. In contrast, physical restraints may exacerbate ASD patient
anxiety and result in agitation. If physical restraint is required, wrapping the individual tightly in a blanket is preferable to individual arm and leg restraints. Blankets have a softer texture and may provide both temperature and tactile stimuli that are pleasing in this patient population. Commonly used arm and leg restraints are likely to increase agitation by the nature of their materials and by separating the limbs from the body in a position not allowing the ASD patient to use gestures that are of comfort (e.g., hand flapping, rocking). Discussion with the
caregiver can be critical to identifying a means of restraint that will be least disruptive to the
patient and their care.
ACT (Assess, Communicate and Treat) provides a framework for response from healthcare
providers. ACT takes a triangulated approach. The first is to “assess both the environment
and best approach or communication mode to gain as much information as possible”, the
second is to “communicate to gain history, examine and evaluate the individual” and finally, “treat using care and consideration of the individual’s unique characteristics”.
Following the ACT framework when responding to emergency situations may help the interaction have a more positive outcome.
The emergency department is by nature a very over stimulating environment with an onslaught of sounds, smells, bright lighting, loud or rapid talking and is often overcrowded. An environment such as this may prove difficult for a person with an ASD to integrate and process this barrage of sensory stimuli increasing their level of anxiety. Triaging the patient in a quieter space is likely to be more effective.
Listen to the two mothers as they describe their child’s experience.
A person with an ASD may find sights, sounds, and smells to be over-stimulating. The sensory stimuli tolerated by most people are often overpowering and may even be perceived as painful to the person with an ASD. The clutter of equipment may entice the person to grab or touch equipment or materials and could present a safety hazard.
Experience the view of the over stimulating environment and listen to the mother describe how her daughter responds to a cluttered examination room.
A person with an ASD has difficulty understanding what is going on around him or her when a new situation arises. He or she may have trouble reading social cues and knowing how to respond. Raised and loud voices can increase the level of anxiety in a person with an ASD. Rapid or excessive talking only adds to his or her confusion and raises the person’s sense of panic. More than one person talking to him or her may add to the confusion and anxiety. It is best to establish a “one voice” approach.
In a typical emergency room there are multiple people surrounding the patient and talking with each other. This can be extremely over-stimulating.
Language and communication difficulties are a signature characteristic of ASD. A person with an ASD not only has difficulty expressing him or herself but also may have trouble understanding what others are saying. A person with an ASD interprets language literally and struggles with language that is abstract, sayings that are figures of speech, and idioms or jokes.
The ability to use language varies among individuals. Some people with an ASD speak quite well, others are non-verbal and still others may echo or parrot what is said to them. Echolalic speech can include words or phrases they have heard and can be immediately repeated or delayed in repetition.
Some individuals use pictures, gestures, sign language, written words or a communication device to express themselves and to understand what is being asked or told to them.
Listen to the parents describe the communication impairments that their children experience and how that impacts the emergency department experience.
Language deficits and cognitive levels can inhibit the ability of the person to provide accurate and comprehensive information. It is important to ask the person with an ASD for the needed information; however, if the person is unable to articulate the information, a caregiver can provide more detailed information.
Listen as the parents describe why it is important to include the patient in the communication loop and how important the caregiver is in the communication process when gaining important information.
The inability to understand the social world or read social cues may impair the ability of the person with an ASD to understand the intent of others. Quick or rapid movement
towards the person with an ASD may cause the person to exhibit the fight or flight response. Therefore, a slow and calm approach is necessary.
If at all possible, use the person’s first name and assure him or her that you are there to help. The person may not observe the social cues that indicate your intent to help. Simply stating this is often necessary.
A mother describes how she felt when the doctor attempted to hurry her son and rapidly asked him multiple questions resulting in a less than favorable outcome.
Emergency situations often lead to a sense of urgency. An increased sense of urgency is often accompanied by raised voices with rapid speech. Because a person with an ASD may take longer to process or understand information, raised voices reflecting urgency increases anxiety and decreases the ability to process the information. A person with an ASD will often escalate when voices are raised or agitated.
The parents describe the importance of using a quiet and calm voice.
When more than one person is giving directions, talking at the same time or to each other, this increases the likelihood that the person with an ASD will have difficulty processing the information. Taking a “one voice” approach and gaining the trust and understanding of the person can aid in decreasing anxiety and increasing compliance.
A mother and a young man with an ASD describe the difficulty when trying to understand and process information.
Both sensory issues and social skill deficits play a role in the response of a person with an ASD to touch, be held or restrained. Most people with an ASD do not like to be
touched and find it unpleasant or painful. It is always best to allow the person to control the level of the touch. Preparing the person in advance for the need to touch, hold or restrain him/her is essential. Approaching him or her slowly and demonstrating what you are going to do helps the person with an ASD understand and gives a sense of control.
The doctor takes his time, allows the patient to process information and does not attempt to touch the young man without preparing him first.
People with an ASD often struggle with open-ended questions that have no one correct answer. “Wh” questions such as who, what, when, where, and why require more complex processing of the information and are often confusing. Using statements or questions that require a simple “yes” or “no” answer will make it easier for the person to respond. For example, “When did the pain start?” requires complex processing. The person may not understand if you want an exact date or time and/or circumstances surrounding the start of the pain. A better way to gain this information might be to use a series of “yes” or “no” statements or questions such as “Did you have the pain yesterday?”, “Did you have the pain before you ate breakfast?” or “Did you have the pain when you woke up?” Visual supports for communication such as a visual pain scale can also be useful.
The nurse asks simple direct questions and uses visual supports such as a pain scale.
Once escalated, a person with an ASD requires more time than most people to regain his or her composure and become calm. It is always best to take the necessary preliminary steps to avoid the person escalating in his or her behavior. In the event that the person has escalated, it is important to step back and allow the person time to calm. Excessive talking to the person once they are escalated does not help the person calm. It is best to back away and keep your composure.
Once calm, the person may still require added response time as they process the information.
A mother describes how her daughter’s behavior escalated and the difficulty that this presented in the examination process.
A person with an ASD may find the taste or smell of medications offensive. Using the pediatric suspension of the medication may be helpful. The materials used to examine or treat the person may be cold or abrasive. If at all possible, warm the equipment and use less abrasive materials. For example, using a soft collar or parallel towel rolls versus a hard collar for cervical immobilization may be more acceptable to the person.
The nurse allowed the patient to touch the equipment that she was using. The patient was able to feel the texture and temperature of the equipment.
Equipment and materials encountered in the emergency department are often new to the person with an ASD. He or she may fear or believe that the use of such materials will be painful. It is important to explain or describe the material or equipment and let him or her touch it if possible. It is also important to be honest with the person and tell him or her if it is or is not going to hurt. If it is going to hurt, tell him or her about the level of discomfort. For example, “You will feel a pinch.” “It will only pinch for a second.”
The doctor takes his time, allows the patient to process information and does not attempt to touch the young man without preparing him first. He encourages him to touch the stethoscope before using it.
The x-ray technologists explain the equipment and assure the patient that it will not hurt.
The language impairment of a person with an ASD makes it more difficult to understand what it is that he or she needs to do. People with autism are concrete, visual thinkers. Abstract or more complex sentences are often confusing. Keeping directions simple, one step at a time and using a visual (picture) or demonstration on a caregiver increases understanding and the likelihood that the person will comply.
The nurse models taking a blood pressure, temperature and pulse ox meter on the caregiver first.
Sometimes a person with an ASD will pick at or try to remove bandages. Covering the bandage with a non-threatening sticker or image may help to prevent the person from removing the bandage.
According to the Diagnostic and Statistical Manual of Mental Disorders, (2013), Autism Spectrum Disorder (ASD) is a neurodevelopmental disability. ASD is classified as a neurological disorder, which causes people with an ASD to interpret information differently than others. People with an ASD demonstrate significant social, communication and behavioral challenges. Because autism is a spectrum disorder, each individual is unique. No two individuals with autism are alike; however, all persons with autism exhibit difficulty with communication, sensory processing, and social and adaptive behavior skills with varying degrees from mild to severe. Each of these three defining characteristics are inter-related, and it is often very difficult to separate the effects of one or the other on how that person will react in any given situation. Therefore, persons with autism are especially susceptible to systems failure during emergency situations.
Everyone from the intake coordinator to the treating physician will influence the quality of the emergency department experience, making their skills critical to the successful and safe resolution of the medical situation.
Each person on a hospital staff is trained to use best practice protocols in the response to an emergency (Autism Speaks, n.d.). Understanding the relationship between an increased state of anxiety or stress and the characteristics of autism can enhance the successful delivery of service by emergency department personnel and avoid behavioral escalation or compromised care.
The purpose of this instrument is to allow individuals with autism spectrum disorder, their families and their caregivers to inform emergency department health care providers on the nature of their condition and how best to manage their acute ailments in this setting. Provide as much detail as possible in response to the questions to allow the emergency department staff to optimize the care of you or your loved one in this setting.
Date of Birth
Emergency Contact(s) and Number
Primary Care Provider and Number
Communication Ability (e.g., Non-Verbal, Repetition, Fluent) and Use of Communication Devices/Apps
Social Interaction (e.g., Avoids Interaction, Interacts with Assistance)
Behavioral Patterns (e.g., Agitated, Calm)
Dietary Patterns (e.g., Favored Foods, Timing and Normal Amounts of Oral Intake)
Vaccination History (e.g., All Scheduled Vaccines, Particular Refused Vaccines)
Menstrual History (e.g., Date of First Period, Pattern and Nature of Menses – irregular, heavy)
Other Medical Conditions (e.g., Seizures, Constipation, Depression, Dental
Precautions: Advanced Directive
Self-Mutilating Behavior, Pica, Aggression, Property Destruction, Trauma History
Home Medications and Other Therapies
Comfort (transitional) Object
Are there specific environmental factors that might agitate this individual (e.g., cold, bright lights, textures)?
Are there specific communication techniques that might agitate this individual (e.g., direct eye contact, loud or simultaneous voices, specific words or phrases)?
How does this individual communicate yes and no (e.g., typical words, gestures)?
How does this individual express pain (e.g., verbally, crying, self-mutilating behavior, excessive rituals)?
How does this individual express frustration/anger or indicate agitation (e.g., flapping of arms, repeating words or phrases)?
What is the best way to communicate with this individual (e.g., verbally, pictures, via communication device, written)?
Does this individual use or respond to a particular technique to remain calm (e.g., swaying, command to bring hands together, sensory items)?
Does this individual respond to a particular distraction technique at time of stress or in previous medical situations (e.g., music, photos, books, use of a communication device)?
Can this individual swallow pills?
Is there a particular flavor in oral intake that this individual likes or dislikes?
What medications, if any, has this individual received that has worked well for providing sedation or pain management (e.g., morphine, lorazepam)?
What medications, if any, has this individual received that should be avoided when providing sedation or pain management (e.g., fentanyl, midazolam)?
Any other advice to the health care provider for treating this individual in the emergency department (e.g., keep voice in a low volume, avoid multiple health care providers, use yes and no questions, avoid removing a comforting object)?
American Psychiatric Association, (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing, Inc.
Autism Speaks. (n.d.). Hospital emergency staff, Retrieved from http://www.autismspeaks.org/ family-services/autism-safety-project/first responders/hospital-staff
Bureau of Autism Services, Pennsylvania Department of Public Welfare. (2011). Pennsylvania
Autism Needs Assessment: A Survey of Individuals and Families Living with Autism: Barriers
and Limitations to Accessing Services. Retrieved from http://www.paautism.org/Portals/0/
Bureau of Autism Services, Pennsylvania Department of Public Welfare. (2011). Pennsylvania
Autism Needs Assessment: A Survey of Individuals and Families Living with Autism:
Unwanted Outcomes-Police Contact & Urgent Hospital Care. Retrieved from http:// www.paautism.org/Portals/0/Docs/Needs%20Assess_UnwantedOutcomes_Sept%202011.pdf.
Cannata, W. (2003). Autism 101 for fire and rescue. Retrieved from SPEAK Unlimited Inc. at
Center for Disease Control and Prevention, (2010). Autism Spectrum Disorders: Data and
Statistics. Retrieved on April 14, 2013 from http://www.cdc.gov/ncbddd/autism/ data.html
Davis, L. A. (2005). People with Intellectual Disabilities in the Criminal Justice System: Victims & Suspects. The Arc. Retrieved on February 20, 2009 from www.thearc.org/
Davis, B. & Goldband Schunick, W. (2002). Dangerous Encounters: Avoiding perilous situations with Autism. London: Jessica Kingsley Publishers.
Homeland Security Grant Program (HSGP) Training Information System. Responder Training
Development Center – Training and Exercise. Retrieved on December 4, 2009 from https://www.firstrespondertraining.gov/odp_webforms/
Morton-Cooper, A. (2004). Health Care and Autistic Spectrum. Philadelphia, PA: Jessica Kingsley Publishers. Retrieved from http://site.ebrary.com/lib/indianauniv/Doc? id=10064431&ppg=17
Mortenson, L. (2008). Local EMTs give training on assisting the disabled. Edison, NJ: Sentinel. Middlesex County College. Retrieved on February 20, 2009 from http:// www.middlesexcc.edu/
Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact:
Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). Minneapolis Folis:
University of Minnesota, Institute on Community Integration. Retrieved on February from the (http://ici.umn.edu/products/impact/201/default.html).
Rzucidlo, S. F. (2005-07). Autism 101 for EMS practitioners. Retrieved from SPEAK Unlimited
Inc. at http://www.papremisealert.com/id71.html.
Rzucidlo, S. F. (2005-07). Autism 101 for police officers. Retrieved from SPEAK Unlimited
Inc. at http://www.papremisealert.com/id70.html.
Venkat, A., Jauch, E., Russell, W.S., Crist, C.R., & Ferrell, R. (2012). Care of the patient with
an autism spectrum disorder by the general physician. Postgraduate Medical Journal. doi:10.1136/postgradmedj-2011-130727.
Webber, J. & Scheuermann, B. (2008). Educating students with autism. Austin, TX: Pro-Ed.
The link below provides access to the ACT training video that corresponds with the training manual and materials.
|Tools to Support Emergency Room Personnel||ACT Training Manual||Download file: Tools to Support Emergency Room Personnel|
|Tools to Support Emergency Room Personnel||Assessing Patients with Autism Spectrum Disorder in the Emergency Department||Download file: Tools to Support Emergency Room Personnel|
|Tools to Support Emergency Room Personnel||Instrument to Prepare for Acute Care of the Individual with Autism Spectrum Disorder in the Emergency Department||Download file: Tools to Support Emergency Room Personnel|
This information was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT). For more information, please contact ASERT at 877-231-4244 or info@PAautism.org. ASERT is funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.