Tools to Support Emergency Room Personnel

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).

• Participants will be able to identify the characteristics of people with autism.
• Participants will recognize how and why the characteristic behaviors of autism can manifest
  during an emergency or stressful situation.
• Participants will understand the ACT response when dealing with individuals with autism
  during an emergency or stressful situation.
• Participants will be able to use information from this training to apply appropriate
  response protocols in the delivery of care.
• Participants will complete a competency test at the end of the module

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
people.

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).

Defining Characteristics

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:

• Can be verbal, non-verbal, or echolalic. The person may be able to use verbal language or they may be completely nonverbal. They may repeat something you said or a phrase they have heard over and over and over again. This is referred to as echolalia. Echolalia can be calming to the individual and should not be interpreted as rude or mimicking. Because the person with autism may lack the verbal skills to generate the words necessary to meaningfully communicate their wants or needs, echolalia may serve as an attempt to communicate with you.
• May appear deaf or refuse to respond. The person may lack an awareness of the environment. They appear disinterested in others and seem oblivious to what is happening with others (Webber & Scheuermann, 2008).
• May have difficulty in expressing needs.
• May use words, gestures, signs, pictures or a communication device. The person may use an alternative way to communicate. These alternatives could incorporate the use of no technology (sign language and picture cards) or some type of communication device.
• May have difficulty understanding language and may interpret everything literally.
• May interpret or respond according to what they have seen or heard in prior personal experiences or on television.
• May have difficulty understanding complex sentences.
• May have difficulty understanding questions other than “yes or no” questions.
• May have difficulty following directions, especially multi-step directions.
• May avoid eye contact.

A person with autism:

• May be insensitive to pain. Some individuals with autism do not have a normal range of sensations and may not feel the cold, heat, or pain in a typical manner. Therefore, they may not seek help. In fact, they may fail to acknowledge pain in spite of significant pathology being present. They may show an unusual pain response that could include laughter, humming, singing and removing of clothing (Cannata, 2003).
• Does not want to be touched or cuddled. Unwanted touch could escalate the person’s behavior or cause them to lash out with aggressive behavior.
• May exhibit an inappropriate behavioral response to sounds or sights. They can be oversensitive and may respond with increased anxiety, increased repetitive behavior and bolting from the area.

A person with autism:

• May prefer to be alone.
• May have no real fear or a lack of awareness of danger. Individuals with autism often have a general lack of awareness of the potential dangers in the environment. This could result in placing themselves further into harm’s way. Individuals with autism are strongly attracted to water and shining objects. They may grab, touch or place in mouth equipment and/or other dangerous objects. The use of a simple command such as “quiet hands” and model of hands folded together may prevent unwanted consequences of potential dangers.
• May laugh or giggle inappropriately.
• May have difficulty interacting with others.
• May insist on sameness or routine.
• May spin objects or self.
• May exhibit sustained, intense tantrums. Tantrums can be more intense and longer in duration than typical. It takes a person with autism much longer than normal to de-escalate and recover from a tantrum. Once a person with autism is engaged in a tantrum, it is important to remain calm, talk in a quiet voice, do not restrain but maintain the safety of the individual and others.
• May have an inappropriate attachment to objects. The object often brings comfort to the individual. Do not attempt to take the object from the individual unless it interferes with the safety of the person or others. Trying to take the object away will increase anxiety and may cause the individual to act out aggressively.
• May engage in repetitive behaviors such as hand flapping, rocking, jumping, finger flicking, or talking to one’s self.
• These behaviors are calming to the individual, even if it doesn’t appear calming. If these behaviors are NOT presenting as a danger to themselves or others, it is in your best interest not to interfere. Allow the behaviors to continue as long as the individual is safe and it is safe for others. Trying to stop the behaviors will increase anxiety and may cause the individual to act out aggressively (Cannata, 2003, p 1).

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:

• Forty percent (40%) of individuals with autism will develop epilepsy or some other
  seizure disorder by the end of adolescence. Consider the possibility of a seizure
  when dealing with an individual with autism when a patient presents with altered
  mental status (Rzucidlo, 2005). Management of the ASD patient with a seizure or
  multiple seizures is similar to the non-ASD patient (Venkat et al., 2012).
• Expect the unexpected. Children with autism may ingest something non–edible
  (PICA tendencies) or get into something without their parents realizing it. Look for
  less obvious causality and inspect carefully for other injuries (Rzucidlo, 2005).
• Many individuals with autism have a poorly developed upper trunk area, which puts
  them at greater risk for positional asphyxiation. Steps should be taken to prevent
  that from happening, including frequent change of position and not keeping them
  face down. This is especially important when considering restraint (Rzucidlo, 2005).
• Common causes of agitation in this patient population include gastrointestinal
  ailments (e.g., constipation), sleep disorders (e.g., insomnia), dental pain, menstrual
  pain and occult trauma, including to the head, arms and eyes (corneal foreign bodies
  and abrasions). Careful historical and physical exam evaluation of these areas is
  critical to management of the agitated ASD patient (Venkat et al., 2012).
• Patients with ASD may be receiving alternative therapies, including gluten and casein free diets and chelation regimens, and may not have received routine immunizations due to caregiver belief in their benefit and harm, respectively. Respectful inquiry by emergency department personnel of this history may reveal the cause of acute illness in this patient population. For example, patients with ASD who are receiving specialized diets may be at risk for constipation as a cause of acute behavioral change. Similarly, patients who have not received routine immunizations may be at risk for uncommon infectious diseases (Venkat et al., 2012).
• Catatonia is a medical emergency that requires immediate diagnosis and management in the ASD patient. Up to 17% of ASD adolescents and adults can present with this condition that is defined by decreased speech or mobility, freezing during actions, posturing, staring, negativism or echophenomena—”shut down syndrome”. Initial evaluation includes a careful history and physical examination to rule out other possible diagnoses and the use of the lorazepam challenge test where 1mg of intravenous lorazepam is given to the patient with monitoring for symptomatic improvement. If there is no response, a second dose may be given. If catatonia is confirmed, inpatient hospitalization is required for further lorazepam treatment or electroconvulsive therapy (Venkat et al., 2012).

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.

• Provide a family support person who has training in ASD to accompany the primary caregiver and the patient to a quiet area of the ED for registration and prepare for the evaluation
• Whenever possible decrease wait times.
• Adapt the ED environment. Entering a noisy, crowded waiting room may trigger acute anxiety and challenging behaviors in individuals with ASD.
• Quickly determine the patient’s level of communication and mode of communication (verbal, visual, pointing, pictures (PECS), iPad, modeling, etc.)
• Do not force eye contact.
• Use a neutral tone of voice, speak slowly, and wait for a response.
• Obtain information from the staff or caregiver on interventions that were successful in prior visits to
  the emergency department.
• Ask about sensory sensitivity (auditory, visual, tactile, olfactory, vestibular, and proprioceptive)
• Use play items or interest areas (dolls, stuffed animals, pictures, internet) to show or demonstrate any medical
  procedures.
• Provide verbal praise, encouragement and rewards when possible.
• Have available nonpharmacological interventions (i.e., de-escalation “toolbox” with activities and interest areas to decrease acute agitation and prevent meltdowns)
• If transporting the patient to another area in the hospital, allow a primary caregiver to accompany the patient.
• Utilize hospital resources if available (OT, PT, Communication Specialist, Teacher/Therapist) to help reduce anxiety or distract the patient’s attention during a
  procedure.
• Intervene using a least restrictive treatment model. Refrain from using restraints (physical, mechanical or chemical) as a first line intervention to control challenging behavior.

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”.

Assess the environment and best approach or communication mode to gain as much information as possible:

• Prepare a quiet examination room
• Minimize sensory stimuli such as clutter, loud equipment, bright or fluorescent lighting
• Minimize personnel to only the essential
• Determine the best way to approach or communicate with the individual
• Gain as much information as possible from both the patient and the caregiver

Communicate to gain history, examine and evaluate the individual:

• Approach the individual slowly and calmly keeping some distance between you and the
  patient
• Use the person’s first name and assure that you are there to help
• Talk in a quiet and calm voice
• Try to establish a rapport no matter how urgent the situation
• Do not attempt to touch, grab or restrain without preparing the individual first, if possible
• Before examining, tell the individual what you are going to do or want him/her to do
• Ask simple “yes” or “no” questions
• Avoid questions or sentences that require complex responses
• Allow the person time to calm down and added time for them to process and respond

Treat using care and consideration of the individual’s unique characteristics:

• Consider sensory issues such as medication taste or smell, textures and temperature of treatment materials
• Show all materials prior to using them and let the patient touch them if possible
• Model the intervention on the caregiver
• Cover splints or bandages with non-threatening images for pediatric or adolescent patients with ASD

Following the ACT framework when responding to emergency situations may help the interaction have a more positive outcome.

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.

Information to Provide:

Name

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

Allergies

Sleep Patternn

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 https://www.autismspeaks.org/hospital-emergency-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
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