Helping Patients with Autism and Their Families Navigate Emergency Visits

Chris’s family traveled more than an hour, with Chris kicking and screaming in the back seat, to make their fourth trip to an emergency department (ED) in as many months. A school provider in their town had told them that by going to this ED, the family might get the help they needed. They felt it was a long shot based on prior experiences but held out some hope. Chris is diagnosed with an autism spectrum disorder (ASD).

One of his restricted interests is a love of ambulances, which helped him to calm quickly upon arriving at the ED. In the past he always de-escalated by the time the family arrived in the ED, so they were sent home without resources, irrespective of the seriousness of the behavioral episode they described. It initially seemed this fourth visit would be the same. The family was directed to a quiet room, and Chris promptly began bouncing happily on a sensory ball watching ambulances drive by.

To the family’s surprise, the attending physician listened intently to their concerns for Chris and even asked the family what could be done to help Chris be more comfortable as they talked. The family felt heard. Although Chris was not admitted for inpatient care, the family left with outpatient appointments that connected them to needed services and Chris ultimately obtained the help he’d needed for many months.

AUTISM SPECTRUM DISORDER INCIDENCE AND ED UTILIZATION

The likelihood of seeing individuals with autism in the ED continues to climb. In 2018, the CDC estimated that 1 in 59 children have been identified with ASD, a 15% increase in prevalence since 2016. Incidence of autism has been on the rise over the years and, while causes remain largely unknown, genetic predisposition, environmental triggers, and increased sensitivity of diagnostic measurement are thought to be factors. Autism occurs across all racial, ethnic, and socioeconomic groups, is 4x more common in boys, and commonly co-occurs with other developmental, psychiatric, genetic, neurologic, and chromosomal differences. Approximately 44% of individuals with autism have average to above average intelligence.

Research has demonstrated that individuals with ASD have increased rates of health care utilization and frequently report unmet healthcare needs. Additionally, families often express frustration over the unmet need for comprehensive services, including access and navigation of medical care due to behavioral challenges or lack of knowledgeable providers and, as a result, may avoid routine healthcare visits. ED utilization data demonstrates both adolescents and adults are more likely to access care in the ED than non-ASD population. This is even more likely for those who live in rural areas.

Additionally, research suggests that patients with ASD have suboptimal experiences in the ED. A survey of adults with ASD and no intellectual disability regarding ED experiences found that most were somewhat dissatisfied with the care they received in the ED. Another study of caregivers indicated that a quarter of people with ASD experience restrictive measures during ED visits including physical or medical restraint.

In our experience, it is not uncommon that children in behavioral crisis have underlying medical conditions that are identifiable and treatable with appropriate medical care. Behavioral escalation may be overestimated as a primary reason people with ASD come to the ED.

A chart review conducted in 2014 indicated that only 10% of patients with ASD presented to the ED for a primary complaint of behavioral concerns. Studies have also shown that children with ASD were 9x more likely to receive care in the ED due to psychiatric crisis than those without ASD. It is important to recognize that externalizing behaviors, such as aggression or self-injury, that prompt these visits are sometimes found to be associated with physical as handouts or pain scales. As with all patients, walk them through procedures prior to initiation to ensure understanding and have the patient re-tell medical instructions to check comprehension.

A quarter of individuals on the autism spectrum do not develop functional verbal communication. For individuals who have significant communication challenges, it is necessary to engage caregivers to understand the person’s needs and obtain information about the presenting concern. Providers should identify the patient’s primary communication method and their language comprehension. Patients with ASD who are nonverbal or have low verbal skills may use picture cards, electronic sound generating devices, sign language, or letter boards for communication. When asking about language comprehension, consider asking how much the individual understands and if they are able to demonstrate knowledge of body parts or respond to questions about where pain or discomfort is experienced? If so, how do they communicate what they know?

Irrespective of the patient with ASD’s communication skills, it is important to always assume competence and understanding. Avoid saying things that you would not want the patient to hear or things that you would expect to cause anxiety. A patient with ASD who is not able to communicate verbally may still understand and respond to what is said by others in the room. It is important to speak directly to the person with ASD unless the caregiver indicates that doing so would cause distress.

Communication skills can be mixed in a person with autism. Malachi presented to the ED, accompanied by his mother, with agitation. Malachi is a nonverbal adolescent with significant self-stimulatory behavior at baseline. As the provider and caregiver discussed potential causes, Malachi was intrusive to the discussion. His mother brought out the letter board he uses to communicate and asked him what he needed. Malachi said, “This medication makes me drool and people think I’m stupid.”

Many people might consider Malachi incapable of comprehending conversations, but he was aware of what was being said and made a valuable contribution to the medical encounter when given the opportunity.

Providers Can Learn About the Person with ASD’s Needs Through Asking Four Crucial Questions:

1. What are the person with ASD’s baseline behavior and functioning?

2. How does the person with ASD communicate and understand the communication of others?

3. What triggers stress or anxiety for the person with ASD?

4. What helps the person with ASD cope with stress or anxiety?

SENSORY AND TRIGGERS

Individuals with ASD process sensory information differently than their neurotypical counterparts, a difference that has been added as a key domain in the most recent revision of diagnostic criteria. Sensory processing involves how the brain perceives and responds to external and internal stimuli and can manifest in several ways. Some individuals are very sensitive to sensory input and may become over aroused and overstimulated easily. These individuals may have a negative response to touch, sounds, or smells that increases anxiety and distress.

On the contrary, others seek certain types of sensory input and may do so obsessively or to self-soothe. For example, one individual may seek deep pressure and, if the need is not adequately met, they may push until caregivers restrain them. In other sensory seeking situations, an individual may be fascinated with screaming and elope from their room to seek the source of a crying child down the hall. Most individuals with ASD have mixed sensory responses, meaning they may seek some types of input while being averse to other types.

This makes management more challenging. Negative effects of overwhelming or anxiety provoking situations can result in increased sensitivity to sensory input and slow language processing and problem solving in the general population. Imagine the impact for an individual with ASD who already has sensory sensitivities and communication challenges. Overstimulation coupled with challenges with communication and unknown expectations of a new environment can easily increase the risk of behavioral outbursts. Individuals with ASD are prone to challenges with transitions, adjusting to new environments, and understanding complex processes and concepts of time. The ED environment includes all these factors, increasing the potential for stress or anxiety during the visit.

Sensory differences also impact how individuals with ASD respond to pain. It is common for parents to report a very high pain threshold in their children with ASD; however, once that threshold is reached, the reaction can be extreme and include severe tantrums, aggression, and self-injury.

Challenges with communication often make it difficult for individuals with ASD to reliably communicate pain. For these reasons, we often advocate for proactive pain management in conditions known to be uncomfortable. Waiting for theindividual with ASD to indicate pain may result in an unsafe situation and more challenging pain management.

SUPPORT AND ACCOMMODATIONS TO ENHANCE COPING

With knowledge of resources available in the ED and the patient’s triggers and communication style, providers can arrange for appropriate supports to help the patient cope and facilitate a successful encounter. The provision of appropriate supports for patients and families with ASD is associated with higher patient compliance with the encounter, increased safety, and improved system flow, as well as increased satisfaction for both provider and patient.

The best way to know what supports are needed is to ask the patient and caregiver how they have been successful in past medical encounters and what could make the present encounter run smoothly.

Studies have described negative and sometimes traumatizing experiences in the ED for individuals with ASD when the triggers of an individual are not recognized and addressed while providing care. Managing the environment is one of the most effective ways providers can enhance patient coping by reducing triggers.

The best way to understand individual triggers is to discuss sensory challenges with caregivers or with the individual as part of the initial encounter. When a person with ASD is entering the ED, helpful strategies include reducing wait times in the waiting room, dimming harsh overhead lights, expediting to a room location away from high traffic and excessive noise, clearing the room of unnecessary items, access to services such as Child Life and social work, TV/movies, music, toys, rearranging the room to allow for movement, etc.

Behavioral escalation can be prevented if individuals with high risk of escalation are given priority in triage. Consolidate care to reduce disruptions and reduce transitions when possible. Prior to any procedure or transition, it is important to ask, “How do you think this will go?” and “How might we make it go better?” Walk caregivers or individuals through the procedure step-by-step and problem solve the best way to approach care prior to initiating it.

Other helpful strategies include use of visual supports, for example, a schedule with icons that tells the patient what is coming next or adapted pain scales. This should always include breaks from care and activities to help increase motivation.

Gathering and documenting information about communication style, triggers, coping strategies, and baseline for use with all staff and providers interacting with the patient and caregivers can significantly improve care. This information can be sought as soon as a diagnosis of autism is known. There are available tools to structure the gathering of this information, such as the Autism Care Questionnaire (Carter et al., 2017) or the Instrument to Prepare for AcuteCare of the Individual with Autism Spectrum Disorder in the Emergency Department (Venkat et al., 2016). In addition, some organizations develop their own tools. If the information can be stored in the medical record, this will ease assessment for future visits.

During the encounter, interactions can be enhanced by utilizing the information gathered to support the individual through the necessary evaluations and procedures. Adapted care strategies include explaining or modeling procedures before performing them, changing the way questions are asked, allowing extra time for the patient to process and respond to questions, offering comfort items, and allowing the patient to engage in safe coping behaviors such as movement breaks, pacing the room, or interacting with preferred items. It can also be helpful to give the patient information about what is coming next and to allow them to understand when they will be able to go home.

UTILIZING STRATEGIES IN THE ED SYSTEM

While these strategies may appear straightforward, their application can be challenging given the varied presentation of patients on the autism spectrum and the chaotic nature of the ED setting. Studies have suggested formal training as a possible mechanism to improve staff confidence in working with people on the autism spectrum and to improve provider and patient experience. In some areas, ED staff have been able to obtain training through colleagues from local assessment and treatment clinics serving people with ASD. Because the stress and anxiety of medical encounters can trigger unsafe behavior in some patients with ASD, staff will also benefit from training about how to support behavioral de-escalation, personal safety, and safe physical management. There are numerous professional training models for non-violent physical management of unsafe behavior, such as Crisis Prevention Institute or Therapeutic Crisis Intervention that aim to keep both patients and staff safe. Protective Services professionals can also play a key role in supporting staff when an unsafe behavioral escalation occurs, however, a show of force approach is likely to escalate rather than de-escalate the situation.

Protective Services professionals may also benefit from first responder training geared towards understanding individuals with ASD. For patients who use PRN medication, it is best practice for the medication to be administered at early signs of escalation rather than after serious behavior is observed. Additionally, it is not uncommon for individuals with autism, especially the pediatric population, to have paradoxical reactions to medications.

It is helpful to work with pharmacists or psychiatrists who are knowledgeable about potential PRN medications for this population. Some ED’s have developed algorithms for PRN use with individuals with ASD and trained all of their providers to improve consistency.

Caring for individuals with ASD in the complex ED environment is no easy task, however, given the increasing incidence of autism and the challenges of access to appropriate community resources, these encounters are likely to continue to soar. There is a growing trend for emergency departments to begin to address these challenges using quality improvement methodology and current research. Some institutions have utilized parent input to improve processes and systems. Emergency departments are encouraged to walk through their system from entry to discharge, looking at processes through the lens of a person with autism and their family to determine where to start improvement efforts.

Staff and patient safety initiatives have also been drivers of this work. Environmental management, education of healthcare providers to increase knowledge and comfort, as well as strategies for partnering with the family for both understanding and providing care are key components to most improvement efforts. Additionally, families report significant benefits when they are connected with appropriate follow-up care to prevent future emergency room visits. This may include referrals to primary care physicians knowledgeable in ASD, as well as behavioral and psychiatric treatment providers and other medical specialists. Individual providers who work well with this population can be hailed as heroes to an individual family, however, we are charged to improve care at a system level so that all patients with ASD, their families, and the staff will experience improved safety, interactions, and outcomes.