BY AVA HUNT
In recent years, Autism Spectrum Disorder (ASD) has been at the center of one media frenzy after another. Although far less data exist about the prevalence of ASD outside of the United States, the rising prevalence of autism, the apocryphal allegations that autism could be caused by vaccines, and the increased portrayal of autistic characters in film and television in the United States have all contributed to a rising public awareness, or a rising public panic, about ASD. However, despite the media hype, most Americans have little knowledge of what life is actually like for autistic individuals and even fewer have any understanding of the difficulties they face on a day-to-day basis. Even simple acts, such as seeking medical care in a time of illness or injury, can pose unique challenges for people with ASD.
As I stood outside Room 3, I couldn’t help but feel slightly troubled. After a summer working in the Pediatric Emergency Room (PED) at Yale New Haven Hospital, I had become accustomed to many upsetting sights. However, I never quite got used to the sight of a child in four-point restraints. The staff member sitting outside the door adjusted her purple uniform polo shirt and glanced at me resolutely. I got the hint and finished my duties before returning to the nurse’s station. When I got there, the attending pediatricians were talking about the boy in Room 3. They seemed frustrated. Everything should have been ready for him to be admitted to one of the pediatric inpatient psychiatric facilities, but they had hit a bit of a roadblock on transport.
“Every time we try to remove the restraints, even just one of them, he starts hitting himself again,” a resident was saying.
“It’s illegal to transport someone in restraints,” one of the attending physicians said. “If we can’t remove the restraints, we’re going to have to sedate him before he can be admitted.” He sighed. “Sometimes I really wonder whether that’s actually any better for the kid. It’s kind of a lesser of two evils.”
As I listened, I couldn’t help but wonder the same thing. Yale New Haven Hospital has formal policies for the use of restraints, but individual decisions about specific patients remain quite subjective and difficult.1 In my time working in the PED, I only saw two children in four-point restraints, and both were presented in the ED with severe aggressive or self-harming behaviors. Both had been previously diagnosed with Autism Spectrum Disorder (ASD). There are many times when restraints are necessary for a patient’s safety as well as for the safety of the staff attempting to treat them. However, I could not help but question whether there might be more that the PED could do to mitigate such extreme situations and avoid having to resort to drastic measures. Although staffed by an incredibly talented group of doctors and nurses, it seemed that the PED was not conducive for children with ASD. Were there other approaches and better options available?
The use of patient restraints in hospital settings is an accepted practice in hospital emergency rooms when patients pose a danger to themselves or others. The American College of Emergency Physicians (ACEP) has endorsed principles to guide hospitals and health care practitioners in their use and state laws regulate many aspects of the practice, including their use with children.2 These protocols seek to balance an individual’s rights to refuse care and to maintain freedom of movement against the interests of the hospital to protect its staff, the public, and patients against harm, even if self-inflicted. In every instance, physical restraints of all forms, including seclusion or the use of psychopharmacologic agents, are last resort interventions applied only after a careful assessment. That being said, there is no discounting the emotional impact that physical restraints have on all involved and the importance of minimizing the frequency or their use.
For most people, children and adults alike, the emergency department of a hospital is an overwhelming, and often intimidating environment. The pace is incessant. Countless staff members in a rainbow of pastel-colored scrubs are always on their feet, scurrying from room to room in response to a seemingly incomprehensible clamor of beepers and pagers. Monitors flash and ping with no obvious pattern or rhythm and there always seem to be numerous conversations going on at once. To make matters worse, many patients are experiencing discomfort that can range from dizziness and nausea to intense and unremitting pain. It is a lot for anyone to handle.
Now, imagine what the emergency department experience must be like for a child with ASD. Distracting visual and auditory stimuli can cause children with ASD to become confused, distressed, or even fearful and anxious. Staff members who move too quickly can overwhelm a child and even the seemingly simple act of entering a crowded, noisy waiting room can trigger difficult behaviors. This sensory overload and anxiety can cause a child to become aggressive towards hospital staff and equipment or to engage in self-injury.3 Non-verbal or mostly nonverbal children can also have trouble communicating what is wrong or how much pain they are in. Many individuals with ASD have trouble identifying emotions on the basis of facial expressions. Thus the commonly-used Wong-Baker FACES pain reading scale is not particularly effective for autistic patients, making it difficult for clinicians to understand what an autistic child is experiencing or how much pain relief they might need.4 Since the hospital staff is usually not informed of the arrival of a patient with ASD in advance, providers sometimes react inappropriately to a child’s behavior, even exhibiting fearfulness, pity, or embarrassment.
Environmental factors aside, while in the ED, children with ASD are frequently subject to potentially distressing procedures. A study on emergency department outcomes for individuals with ASD found that restraints were used in about 53% of psychiatric and behavioral emergency department visits. This is an upsettingly high number considering that the majority of emergency department visits of children with ASD recorded in the study were the result of episodes of physical or verbal aggression (54%) or self-harm and/or suicidal behavior (13%).5 That finding is even more striking when considered in the broader context of restraint use among all pediatric emergency visits. A wider study on the use of restraints among all pediatric patients regardless of ASD diagnosis found that 6.8% of the total number of pediatric psychiatric patients were restrained either physically or chemically.6 There has been a good deal of push back in recent years against the use of restraints in schools and group homes as a common source of abuse that has, in some cases, resulted in injury or even death, and there is a clear consensus that they should never be used as a form of discipline. Although restraints may be necessary in some emergency situations, they are often highly distressing and even traumatic to children.
That being said, the challenging behaviors associated with ASD that manifest themselves in a healthcare setting can at times make it difficult for health care practitioners to perform their jobs. Children with ASD can have trouble generalizing learned social skills to new healthcare providers in an unfamiliar setting such as an emergency department. That disconnect can create anxiety and cause them to act out. Noncompliance, hyperactivity, sensory defensiveness, and self-injury are among the most commonly triggered behaviors that occur in these settings. All can prove challenging to deal with unless health care providers have a plan in place for managing them. Despite these difficulties associated with emergency department visits, children with ASD are far more likely to visit the emergency department than their peers without ASD. About 9% of children with ASD visit an emergency room in any given year compared to 7% of non-autistic children. Overall, children with ASD are 20% more likely to be treated in a hospital setting than children without an ASD diagnosis.7
There are many reasons why this may be the case. On a fundamental level, the higher rate of hospitalizations may be partially attributable to the nature of ASD as a disorder. The injury treatment rate for children with ASD is significantly higher statistically than the rate for children without a disability. Children with autism and Pervasive Developmental Disorder (PDD) experience 7.6 times higher treatment rates for poisoning, 2.5 times higher treatment rates for upper limb injuries, 3 times higher treatment rates for fractures, and statistically significantly higher treatment rates for self-inflicted injuries and suicide attempts.7 Additionally, 80% of children with ASD have at least one comorbid psychiatric disorder. Partially as a result of this higher rate of mental illness, children with ASD are nine times more like to have a psychiatry-related ED visit than children without ASD, most often for externalizing behavior problems or psychotic disorders.8
A lack of sufficient access to outpatient services also contributes to this increased rate of hospital visits. A recent study of pediatric emergency department visits for children both with and without ASD implied that around one third (34.4%) of pediatric emergency department visits could be deemed either somewhat or very inappropriate. Therefore, it can be argued that many children who come to the emergency room could easily be treated in an outpatient context.9 However, for children with ASD, there are few adequate outpatient services available.
Community mental health services in particular have come under fire from parents who view their care as ineffective and are frustrated by the lack of training on the part of staff members, as well as their children’s slow progress. A study of therapists working in community mental health services in California revealed that, although children with ASD make up about 21% of their caseload, many therapists feel they lack adequate clinical preparation to work with autistic children and have found their typical treatment strategies to be ineffective.10 Preliminary study results have indicated that community therapists who have received ongoing training in ASD are more successful in reducing their client’s problem behaviors. However, although community therapists are highly motivated to receive more training in ASD diagnosis and common behavior problems, many do not have access to sufficient training programs.10
The higher rate of emergency department visits may also be financially motivated. ASD is not a reimbursable diagnosis for mental health care among many private insurance plans, making it even more difficult for children with ASD to afford adequate outpatient mental healthcare.8 As a result, children with ASD have a higher utilization and cost of healthcare than children without ASD, with an average annual hospitalization cost two times greater in comparison.11 In the same way that uninsured parents are more likely to bring their children to an emergency department rather than to a general practitioner, parents of children with ASD who are unable to obtain coverage through their insurance plans may be more likely to frequent emergency departments than outpatient services when their children are in need of a psychiatric help.
Given the demonstrated need for emergency services for children with ASD, there has recently been a push to make more emergency departments more “autism-friendly.” Some hospitals have begun to institute more extensive training for staff members on how best to relate to children with ASD, while others have made environmental modifications to the emergency department itself in order to make it a more ASD-friendly space. Even in the absence of specific policy changes, providers in many EDs around the country have begun to adopt simple, common sense accommodations to ease the ED experience for children with ASD. For example, procedures can be explained to a child before they are performed or can be demonstrated on a parent or staff member to build trust between the child and the provider and avoid the stress of unexpected or unusual sensations. A child can be taken directly to triage to avoid a crowded waiting room and then placed in a quiet area with the lights dimmed to avoid sensory overload. The number of staff members who interact with the child can be minimized to lessen the discomfort caused by large groups of unfamiliar faces.
Alternatives to specialized equipment can be created using easily accessible items. For example, if a weighted blanket is not available, a lead apron of the type typically used for x-rays can be substituted to calm a distressed autistic child.3 For children with communication difficulties who do not carry their own visual communication systems, emergency departments can easily create their own communication boards with clipart images of medical devices and procedures. Whether or not such steps effectively address the many challenges hospitals face when treating children with ASD is yet to be seen, but it is difficult to deny that there are still many potential areas for improvement. However, the recent initiatives provide some hope that perhaps there is a better way. It is impossible to know whether the story of the child I saw in four-point restraints in the YNHH PED could have had a happier ending. However, it is still encouraging to imagine a world in which more children with ASD have positive PED experiences and where more stories have happy endings.
Ava Hunt is a senior in Ezra Stiles College majoring in Molecular, Cellular, and Developmental Biology. She can be contacted at firstname.lastname@example.org.
- Medical Staff Education. Use of Restraints: Yale-New Haven Hospital.
- Physical Restraint, Medication and Seclusion of Persons Receiving Care, Education or Supervision in an Institution or Facility, 814e C.F.R.
- Giarelli, E., & Gardner, M. (2012). Nursing of Autism Spectrum Disorder: Evidence-Based Integrated Care across the Lifespan. New York: Springer Publishing Company.
- Bechtel, T. (2014). Considerations for EMS Response to Autistic Patients. from http://www.emsworld.com/
- Tint, A., Robinson, S., & Lunsky, Y. (2011). Emergency Department Assessment and Outcomes in Individuals with Autism Spectrum Disorders. Journal on Developmental Disabilities, 17(2), 56-59.
- Dorfman, D. H., & Mehta, S. D. (2006). Restraint Use for Psychiatric Patients in the Pediatric Emergency Department. Pediatric Emergency Care, 22(1), 7-12.
- McDermott, S., Zhou, L., & Mann, J. (2008). Injury Treatment among Children with Autism or Pervasive Developmental Disorder. Journal of Autism and Developmental Disorders, 38(4).
- Kalb, L. G., Stuart, E. A., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric-Related Emergency Department Visits Among Children With an Autism Spectrum Disorder. Pediatric Emergency Care, 28(12), 1269–1276.
- Soto, E. C., Frederickson, A. M., Trivedi, H., Le, A., Eugene, M. C., Shekher, M., . . . Correll, C. U. (2009). Frequency and Correlates of Inappropriate Pediatric Psychiatric Emergency Room Visits. The Journal of Clinical Psychiatry, 70(8), 1164–1177.
- Brookman-Frazee, L., Drahota, A., Stadnick, N., & Palinkas, L. A. (2012). Therapist Perspectives on Community Mental Health Services for Children with Autism Spectrum Disorders. Administration and Policy in Mental Health and Mental Health Services Research, 39(5), 365-373.
- Croen, L. A., Najjar, D. V., Ray, G. T., Lotspeich, L., & Bernal, P. (2006). A Comparison of Health Care Utilization and Costs of Children With and Without Autism Spectrum Disorders in a Large Group-Model Health Plan. Pediatrics, 18(4).