AS A NEW NURSE and a mother, I expected my two roles to collide at times. Skinned knees and sleepless nights that come with the mom territory can have added meaning to a nurse. One day, my two roles not only collided but became permanently intertwined.
My son, who was diagnosed with autism spectrum disorder (ASD) at the age of 2½ years, was completely traumatized during a routine venipuncture for blood specimens at the age of 12. The staff didn't listen to me about how best to communicate with my son; instead, they rushed through the process, which overstimulated him and exacerbated his resistant behavior. This paved the way to avoidable difficulties for many venipunctures to come.
At that “lightbulb” moment, when I observed a lack of understanding about how to treat a patient with ASD, I also recognized a gap in information about caring for these patients. This realization led me to look for a path to improve the care of patients with ASD in the ED.
My research revealed that patients with ASD are likely to use the ED more often than the general population. Davignon et al. report that children with ASD are more likely to have frequent medical encounters than children with typical development.1 I found only limited information about the modifications needed to effectively manage the behavior of patients with ASD, and such advice is generally aimed at only one aspect of adaptation, such as reducing stimulation or using toys to help calm the patient.
This article presents multiple techniques to help ED personnel and healthcare professionals in outpatient settings deal with some of the unique challenges associated with caring for patients with ASD. Although the advice is geared toward younger pediatric patients, many of the approaches could be adapted for adolescents and adults with ASD. Keep in mind that increased aggression and behavioral disintegration in patients with ASD who are less verbal is often a communicative act, and the likelihood of pain or an acute medical condition must be investigated.2
Because of the increasing prevalence of ASD and the growing use of the ED by patients with ASD, healthcare professionals are increasingly likely to encounter patients with ASD. A dramatic increase in the prevalence of ASD has been reported over the past decades.3,4 The CDC's Autism and Developmental Disabilities Monitoring Network reports that for the surveillance year 2000 (birth year, 1992), the prevalence of ASD was 6.7 children per 1,000, or approximately 1 in 150 children. When compared with the data found during the surveillance year 2012 (birth year, 2004) when the prevalence of ASD was 14.6 children per 1,000 or about 1 in 68 children, a dramatic increase in the prevalence of ASD can be seen.5
ASD is a neurodevelopmental disability associated with intellectual disability.6 Vaz indicates that 26% of learning disabled individuals are admitted to the hospital every year compared with 14% of the general population, and Hunt reports that children with ASD are 20% more likely to be treated in a hospital than children without ASD.7,11 Although many reasons account for this difference, behavioral issues that escalate into crises cause many visits. Tint found 54% of ED visits were related to episodes of physical or verbal aggression.8
Challenging clinical characteristics
Many widely varying clinical characteristics are associated with ASD. To be diagnosed with ASD, a person must have impairments in social communication and social interaction as well as repetitive and restrictive patterns of behavior, interests, and activities.9 (See Summarizing the diagnostic criteria.)
Many people with ASD have challenging behaviors, which often include verbal and physical aggression. These situations can be a source of distress for parents, teachers, and other caregivers, and they can precipitate a visit to the ED. Aggression and behavioral changes may be how the nonverbal patient is trying to communicate pain or distress. One study examined 39 ED visits by patients with ASD and found that 30 of these visits were related to a psychiatric crisis, with the remaining 9 related to medical issues.8
Hunt and the Kennedy Krieger Institute agree that children with ASD are more likely to have an ED visit with a psychiatric component than children without ASD.7,10 In one study, ED visits by children with ASD were nine times more likely to be related to psychiatric issues then those by children without an ASD diagnosis.10
Children with ASD have a wide range of verbal and intellectual capabilities. While many interact well with others, some have limited communication skills and can't articulate their symptoms.11 Other common clinical manifestations include overreacting or underreacting to sensory stimulation, avoiding eye contact, and having difficulty recognizing social cues.9 Clinicians who fail to understand these characteristics in patients with ASD may misunderstand these patients and respond inappropriately.
ASD is a chronic disorder requiring a comprehensive, individualized approach. The treatment, which targets the chief symptoms with behavioral and educational interventions, should be modified over time as patient needs change. Some patients may be helped with pharmacotherapy for coexisting medical or psychiatric disorders.12
Barriers to care
I believe that the two main causes for suboptimal care for patients with ASD are clinicians' lack of education in recognizing and understanding ASD and their lack of training in strategies and tools that can help to deliver quality care. Tint suggests that clinicians may not have the training and skills to understand patients with ASD, which can leave them feeling uncomfortable with or resistant to caring for these patients.8
Davignon et al. found that healthcare providers who weren't prepared to care for patients with ASD may inadvertently trigger their anxiety, increasing the risk of escalating inappropriate behaviors.1 Based on my conversations with many new nurses, I believe that the problem begins with some nursing programs, which may stress that special populations may need to be managed differently without providing education specific to ASD. Many hospitals also fail to provide education and training in this area.
Certain practices can make the patient with ASD more comfortable and therefore more cooperative when the patient's acuity allows. Parents will be relieved to see that staff have made special efforts to make their loved ones comfortable, and staff will have more tools in their arsenal to properly care for this challenging population. I developed the acronym SCRAMBLE, which can be used to help clinicians remember the practices detailed here. (See SCRAMBLE to care for patients with ASD.)
Include the parents in patient care. Good communication with parents or other caregivers can help to ensure a successful ED visit. Nurses should listen to patients' parents or caregivers because their knowledge of the child's behavior and how best to address it is critical to providing optimal nursing care. Vaz points out that parents have a vital role in gaining their child's cooperation because they know the child's specific sensitivities, such as being sensitive to bright lights or too much noise; communication methods; and a specific reward system.11 Autism New Jersey recommends asking families certain questions to help meet patients' needs.13 (See Tailor care with these questions.)
Don't rush. If the patient's situation isn't life-threatening, slow down. Many activities are too fast-paced for patients with ASD. Staff in a crowded ED may be rushed. When dealing with patients with ASD, take a breath and allow extra time for interviews, assessments, and interventions.11,14,15
Avoid complex questions. Keep questions simple and specific. For example, you might ask, “Does your arm hurt?” instead of “Point to where it hurts” or “Tell me where it hurts.”14 In this example, you're simply determining that the patient's pain affects the arm, rather than asking the patient to acknowledge pain and then indicate its location. Use one-step questions instead of trying to ask a few things at once. An example of this would be, “Does your throat hurt?” Then, “Does your ear hurt?” followed by, “Does you head hurt?” instead of saying, “Do you have head, throat, or ear pain?”
Take some rest periods. Allow time for frequent breaks. Patients with ASD can easily become overwhelmed, but taking breaks can mitigate this effect. For example, perform a few steps of your assessment, such as auscultating breath sounds, then let the patient have a break, or even take a short walk if necessary. Try the same approach for treatments, breaking them down into smaller steps and allowing frequent breaks. Although this may seem more time consuming, the cooperation gained may save time in the end.15,16
Limit sensory stimuli. The ED environment is filled with noise, bright lights, and fast-paced activity. Giarelli studied the sensory stimuli in the ED setting, including visual stimuli such as the intensity and sources of light and visual clutter, and noise stimuli and its source.17 This and similar studies recommend that patients with ASD be taken straight to triage from the waiting room whenever possible. If that's not possible, try to find a quiet place for the patient to wait.11,14,15,18,19
Other efforts to control stimuli include simple measures such as dimming the lights and closing the door.7,11,14 Shutting off equipment, phones, and intercoms that aren't in use are other easy ways to minimize sensory stimuli.19,20
Whether patients with ASD are verbal or nonverbal, they'll have many communication issues. At the outset of the ED visit, ask the parents or caregivers if alternate communication methods need to be used.16 Pictures, sign language, tablets, smartphones, and social stories can all be used to enhance communications.
The use of visual communication systems such as picture cards and timelines is well established.21 Because many schools employ these strategies, patients may already be familiar with them.
Pictures can be used to communicate many things, such as procedures to be performed (for example, a stethoscope on chest), symptoms (sore throat, belly pain), location (exam room, X-ray, waiting room), personnel (physician, nurse, technician), and pain intensity level.21
The picture cards can be organized sequentially to show a timeline. For example, patients with a head injury may see a picture of a waiting room, nurse, physician, computed tomography scanner, medication cup, and home. This linear sequence shows patients the order of events from start to finish.21
The picture cards can be created with printed computer images and then laminated. The pictures can also be put on a keyring, ready for use.
Vaz developed 150 symbols for use in healthcare. Her work has been received well by many parents, who found the symbols easy to use and endorsed their use.21 Vaz explains that although these symbols were developed for children, they could be used by adults with communication and language difficulties.21 Using the picture cards and sequencing is well documented for use with patients with ASD.1,7,15,16,19
Using tablets and smart phones can also aid in communication.16 Many free applications (apps) are devoted to nonverbal individuals. These can be accessed by typing “communication apps for nonverbal” into a smartphone or tablet app store. If possible, the ED could acquire a tablet with a break-resistant cover to facilitate communication.
Using social stories can help prepare patients for many aspects of their care. Social stories are a learning tool created as a means of improving social skills for people of all ages who have ASD. They support appropriate social interaction by describing a situation with applicable social cues and perspectives, and then suggesting an appropriate response.22
Stories can be created about exams, procedures, tests, or treatments to help patients become acclimated to their surroundings and forthcoming procedures.19 Patients may have a certain comfort level with social stories because they're frequently used in schools to introduce new and potentially troubling situations.
Exams and treatments can be challenging for these patients. Before performing procedures, nurses need to explain them in simple terms and demonstrate what will be done. Nurses should move slowly and explain why they need to touch the patient for assessments or treatments.19 For more information on helping children with ASD deal with procedures, see Additional Resources at the end of this article.
To reduce patients' anxiety, nurses may elect to let patients hold and examine the equipment. Another exam technique is to build trust with patients by demonstrating the procedure on parents or caregivers first.20 If child life specialists are available at the hospital, enlisting their help can also be useful.
The number of staff involved in the care of patients with ASD should be kept to a minimum. Exposure to people they don't know may contribute to escalating behaviors.11,19
Some EDs now keep a box of toys to help patients with ASD calm themselves. One ED developed sensory boxes that contained such items as squeeze balls and pinwheels to aid relaxation. Luthra also recommends using sensory toys to help patients with ASD calm themselves.15
As a matter of safety, the child's developmental level and physical and mental abilities should be considered in toy selection. To maximize infection control, the items in the sensory box should be considered gifts to take home. If the child brought a favorite toy from home, allow him or her to keep it as long as it doesn't compromise treatment or infection control.
Luthra reports that some hospitals designate a specific room for patients with ASD so that healthcare providers will know in advance that they'll probably need to adapt their approach.15 When a specific room couldn't be designated for patients with ASD, one hospital's solution was to place the multicolored puzzle piece (known as a symbol for autism) on the door of a room having patients with ASD to alert the staff of the need for modifications.
Patience pays off
My advice, as an ED nurse and the mother of a person with ASD, is to remain calm. These patients can be challenging and require special care. The acronym SCRAMBLE can help nurses remember what to do when caring for a patient with ASD. Not every element of SCRAMBLE needs to be used in every situation. But by using SCRAMBLE as a guide, my son's nurse and I helped resolve his issue with venipuncture.
An ED nurse named Kate took a special interest in helping him. We planned that my son would come to the ED for his next venipuncture. In the following days, I created a social story about going to the ED for blood work and how he should respond. The next Sunday morning, we arrived to find the ED waiting room unexpectedly full and noisy. At intake, Kate was called as she'd requested, and she came to triage him herself. She took her time with him, let him touch the equipment, and obtained each vital sign from me prior to obtaining it from my son. She also performed medication reconciliation. Triage was accomplished without any issues.
Kate then took us to a quieter waiting area. She left and came back with the equipment and paperwork needed. Next she brought in a technician to assist. She introduced him to my son as her friend and had him sit across the room and talk to my son about the Titanic, one of his favorite topics, during the procedure.
Kate began each step by explaining what would happen and how it might feel. The procedure was performed without incident, and afterwards I took my son out for ice cream—a well-deserved reward.
Seven of the eight elements of SCRAMBLE were used to create a successful situation, some more than once. Can you identify them? (The box of toys wasn't needed because the technician was discussing one of my son's favorite topics.) Since then, my son has had venipuncture with the only negative result being the cost of ice cream!
As efforts to make EDs more ASD friendly move forward, training and techniques will continue to be developed. Until these become part of the culture of emergency medicine, the information presented in this article can help nurses care for these challenging patients safely and effectively.
Summarizing the diagnostic criteria6
The American Psychiatric Association's Diagnostic and Statistical Manual, Fifth Edition (DSM-5), provides standardized criteria to assist in the diagnosis of ASD. The criteria for the diagnosis for ASD are summarized as follows:
- Persistent deficits in social communication and social interaction across multiple contexts.
- Restricted, repetitive patterns of behavior, interests, or activities.
- Symptoms must be present in the early developmental period.
- Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
- These disturbances aren't better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and ASD frequently co-occur; to make comorbid diagnoses of ASD and intellectual disability, social communication should be below that expected for general developmental level.
For more detailed information about the criteria for diagnosing ASD, please visit https://www.cdc.gov/ncbddd/autism/hcp-dsm.html.
SCRAMBLE to care for patients with ASD
The acronym SCRAMBLE, developed by the author, can be used to remember recommended practice improvements.
- Sensory management that reduces stimuli
- Communications that are kept simple and direct
- Reduced or limited number of staff involved in care
- Allowing for extra time
- Medication reconciliation
- Box of sensory toys
- Exam and treatment modifications.
Tailor care with these questions13
- What's the best way to communicate with your loved ones? Do they use an alternative method of communication? If they use a device, do they have it with them?
- How do they respond to strangers? Would it help if a specific family member remained with them during any testing or evaluations?
- What's typical behavior for them?
- Do they have sensory issues, such as sensitivity to bright lights, sounds, or textures?
- What helps calm them? What helps motivate them to follow directions?
- Do the patients ever elope or wander?
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