Urgent message: As the number of patients with autism spectrum disorders continues to increase, it is important that urgent care providers proactively educate themselves about how best to provide acute care for these individuals.
ELIZABETH MANGONE and JOHN SHUFELDT, MD, JD, MBA, FACEP
A 14-year-old autistic male presents with both parents. The patient is non-verbal and hypersensitive to touch. The parents state that he was stung by a bee and seems to be having respiratory distress because he is drooling more than normal. As the patient is ushered through the waiting area and into an examination room, his anxiety mounts. His repetitive movements of hand flapping and rocking increase along with indistinguishable scripting that reaches an alarming pitch. The staff takes a step back to assess the situation while the parents calm their son.
Adjustments to the typical urgent care protocol are required to treat an autistic patient. Assessing the source and level of pain is delayed by the need to first determine where the patient falls on the autism spectrum. Awareness of autism signs and behaviors aids physicians and urgent care staff in diagnosing and treating a patient’s acute illness, independent of the developmental disorder.
Understanding the autism spectrum
Autism Spectrum Disorder (ASD) is now the fastest growing developmental disorder in the United States.1 A 2014 Centers for Disease Control and Prevention report estimates that about 1 in 68 children exhibit ASD.2 ASD is defined as a neurodevelopmental condition with difficulties in social interaction, verbal and non-verbal communication, and repetitive behaviors. The spectrum includes five pervasive developmental disorders with the following characteristics3:
- Classic autism: Presentation before age 4, poor eye contact, language delay, social deficits, resistance to change, prone to seizures.
- Asperger syndrome: Deficits in appropriate speech and communicative development, stereotype behaviors, expansive memories, extreme interest in a particular subject, development of normal language and cognition
- Rett syndrome (affects only females): Developmental regression after age 6 months, microcephaly, loss of motor skills
- Childhood Disintegrative Disorder: Developmental regression after age 3 years, severe functional impairment, loss of social and language skills
- Pervasive Developmental Disorder-not otherwise specified (less severe version of classic autism): Impairment in social interaction, communication, or repetitive stereotype behavior
Characteristics of ASD raise barriers to efficient, acute treatment by health care professionals in the urgent care setting. Currently, a paucity of resources are available that outline and evaluate accommodating strategies for patients with ASD in inpatient, outpatient, and emergency situations.4 As the number of ASD diagnoses increases, steps to provide optimal care for this challenging patient population focus on education, communication, and treatment.
Barriers to Assessment
The multidimensional nature of ASD and the non-specialist provider’s limited knowledge of the disorder hinder the quality of care for patients with ASD who have acute medical conditions. Characteristically, ASD features deficits in communication, presence of repetitive behaviors, and hyper/hypoactive sensitivity to environmental stimuli.5 Each category is unique to an individual patient with ASD’s behavior and ability level. As the saying goes in the autism community, “If you’ve met one person with autism, you’ve met one person with autism.” In addition, the common absence of social reciprocity is exhibited in a variety of ways, from silence/withdrawal to excessive echolalia or violent outbursts.
Adding to these difficulties, challenges inherent to urgent care medicine create problematic stresses for patients with ASD: rushed visits, focus on a single patient complaint, and incomplete patient history. A comprehensive clinical assessment is limited due to the increased anxiety about the novel situation. Patients with autism prefer a familiar routine and environment. Varying combinations of these barriers increase the difficulty of diagnosing and treating their acute illness in the urgent care setting.
With the escalating growth in diagnoses and the current aging ASD population, an increased awareness of the disorder’s features aids a broader range of health care professionals in appropriately accommodating these patients. Medical providers more effectively treat this population when armed with an understanding of underlying characteristics of autism as well as the medical issues that patients with ASD might present with in an urgent care center. Preliminary research points to a non-exclusive list that focuses on possible acute illnesses including gastrointestinal conditions, seizures, associated psychiatric disorders, catatonia, and self- injurious behaviors.5
Widespread implementation of effective training materials can increase urgent care providers’ knowledge about and comfort with caring for patients with ASD. Two recently implemented resources outline protocols to help doctors treat ASD patients. The Assess Communicate
Treat (ACT) plan for Autism, developed by Pennsylvania physicians, is changing patient treatment in Pennsylvania emergency rooms (ACT).6 The plan includes a training manual and DVD for emergency medicine clinicians that familiarizes them with common autism behaviors and recommends accommodations. Similarly, Massachusetts General Hospital’s Acute Care Plan for Autism aids physicians and medical staff in assisting patients with ASD through a questionnaire completed before the emergency experience (Acute Care Plan). Both systems advise medical staff in the way to properly treat patients with ASD by first recognizing the behaviors of autism and second, diagnosing the acute illness. Providing health care professionals with the tools to understand ASD is a step towards offering better patient care and improving the urgent care experience.
Communication is the key to improving assessment and treatment of the population with ASD. Information on baseline behavior, degree of sociability, dietary habits, and communication ability is vital for medical professionals who interact with patients with ASD.4 The central part of this information sharing relies on communication between the caregiver and urgent care staff. Communication of preferences to the entire staff helps provide consistency of care throughout the visit.
To establish optimal treatment conditions for the patient, the following actions establish a baseline of communication2:
- Obtain patient history from caregiver.
- Avoid multipart questions.
- Use questions that require only a “yes” or “no.”
- Know the individual’s method of communication.
- Use a Visual Communication System.
- Develop a method to assess pain.
Patients with ASD who enter the urgent care environment present with a variety of acute illnesses and are best assessed when an effective communication method is developed. Equally important, caregiver information provides physicians with the ability to identify certain exhibited behaviors that are not maladaptive, but rather, those characterized by the spectrum.
Treatment of patients with ASD in the urgent care setting requires adjustments to the typical protocol and level of care. Clinical standards of urgent care medical treatment change constantly. The advances in quality of care provide a new emphasis on specialized treatment for the developmentally disabled. Steps to better accommodate this population subsequently lead to a decreased incidence of hospital visits and discrepancies in care.
In offering treatment to patients with ASD, additional accommodations are required to decrease anxiety and limit overstimulation. The first step is established through offering the best environment. A quiet room equipped with familiar distractions for the pediatric or adult patient reduces overstimulation. Smaller steps and break periods between treatments keep patients on task.5 Modeling and allowing patients to see and touch instruments and materials used during the physical examination and treatment aids in systematic desensitization. Many of these modifications begin with communication. Though some individuals with ASD lack reciprocal communication, they process spoken language. The physician and medical staff should outline their actions to the patient before performing any exam. In doing so, physicians are advised to use a calm voice and minimize touch. Rewards can be implemented to reinforce positive behaviors. Treating a patient with ASD requires additional time and effort to compensate for the sensory processing difficulty exhibited as a component of the disorder.
Each patient, adult or child, labeled as developmentally disabled presents a unique set of characteristics that demand a higher quality of care. As the population of patients with ASD increases, a move to raise awareness and provide educational materials for health care professionals is required to properly treat these patients in the urgent care setting. Steps to provide quality of care for patients with ASD begin with physician awareness of the disorder’s characteristics, specialized methods of communication and novel approaches to treatment.
As a first-line resource to treat acute illnesses, professionals in urgent care centers are best able to help the population with ASD by learning more about the disorder and making accommodations for these patients.
- Turning Pointe Autism Foundation. The Fastest Growing Developmental Disability in the United States. Available at http://www.turningpointeautismfoundation.org/autism-facts-the-fastest-growing-developmental-disability-in-the-united-states/. Accessed June 1, 2014.
- Baio J. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years. M MWR. 2014;63(SS02);1-21.
- Autism Spectrum Disorders Health Center. WebMD. Available at http://www.webmd.com/ brain/autism/development-disorder. Accessed July 1, 2014.
- McGonigle J, Migyanka J, Glor-Scheib S, et al. Development and Evaluation of Educational Materials for Prehospital and Emergency Department Personnel on the Care of Patients with Autism Spectrum Disorder. J Autism Dev Disord. 2014;44(5):1252-1259.
- Crist RC, Farrell R, Jauch E, Russell S, Venkat A. Care of the Patient with an Autism Spectrum Disorder by the General Physician. Postgrad Med J. 2012;88(1042):472-481.
- Murray D. Training in Autism Friendly Protocols Help to Improve ER Care. Autism Speaks Website.Available at http://www.autismspeaks.org/news/news-item/training-autism-friendly-protocols-help-improveer-care. Accessed June 1, 2014.