An Emergency Department (ED) is undoubtedly one of the most complex and chaotic places on earth where every individual can visit, regardless of age, gender, socioeconomic status, and existing conditions. Patients with autism may also visit EDs with any medical complaints. So, as Emergency Medicine physicians, what can we do to provide them the best health care possible? Of course, there is no limit to what we can individually do to help them, but it may be a good start to think about our EDs’ conditions and find the ways to improve them to serve ALL patients best.
The Word “Autism” is derived from Greek autos (“self”) and -ισμός (-ismós) (“-ism”) and was used for the first time by psychiatrist Eugen Bleuler in 1908. He used it to describe a schizophrenic patient who had withdrawn into his own world. Until the 1970s, many scientists confused autism with mental retardation and psychosis and blamed the parents for their lack of parental skills. “A morbid self-admiration and withdrawal within the self” was the definition of Autism in this time period. In the 1970s Autism correctly described at last as “conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication” and autism and schizophrenia were recognized as completely different conditions. Treatment modalities in autism have undergone a dramatic shift with the help of this level of awareness – from pain and punishment to behavioral therapies.
In 2013, the American Psychiatric Association merged four distinct autism diagnoses (autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger syndrome) into one diagnosis: Autism spectrum disorder (ASD). (1)
The fact that individuals with autism experience various difficulties in communication may cause them and their relatives to be “labeled” and encounter many problems throughout their lives, from education to transportation, from neighborhood relations to social life. It has been shown in various studies that families of individuals with autism are exposed to high levels of stress.
The general view and attitude of society are included in a wide spectrum of negative behaviors such as pitying, excluding, avoiding, and harming the individual with autism.
Why It’s Important to Be Cautious?
The average number of ED visits is nearly 30 percent higher for children with ASD, and their experience is generally far from good. In a comprehensive literature review, it was found that young patients (aged 0-17 years) with ASD were up to 30 times more likely to present to the ED, were likely to have repeat visits, and more likely to be admitted to the hospital. (2)
Caregivers of children with ASD are more likely to report “difficulty utilizing services, lack of shared decision making and care coordination, and adverse family impact”. (3)
Because of language and learning problems, children with ASD may have difficulty understanding hospital procedures and medical tests, which can increase their already high-stress levels. In addition, ED personnel often do not have enough knowledge about the special needs of patients with ASD. (4)
Early mortality is markedly increased in ASD due to a multitude of medical conditions. This is particularly important in ASD as it may indicate insufficient awareness of comorbid diseases, misdiagnosis, and mistreatment in the health system, in addition to the increased susceptibility to various diseases.
In a population-based cohort study, it was shown that the risk of death due to all diseases examined increased compared to the normal population. (5) In another study, all major psychiatric disorders, immune system disorders, nearly all medical conditions (including epilepsy, obesity, dyslipidemia, hypertension, and diabetes), suicide attempt and rarer conditions such as stroke and Parkinson’s was found to be significantly more common among adults with autism. (6)
These results indicate that physicians working in all medical specialties should have a better level of knowledge about ASD.
Remember These Words: See – Hear – Feel – Speak
There are many recommendations in various sources regarding the clinical approach to patients with ASD in the ED (7-10). In this article, I will be content with introducing a highly memorable 4-step system, which was developed by Samet and Luterman in order to facilitate patient-centered encounters with pediatric patients with ASD: (11)
Before examining a patient with ASD presenting to your ED, immediately think of these words: See – Hear – Feel – Speak.
Step 1: See – Remove non-essential visual stimuli. Dim the lights if possible, or try to place the patient in a dimmer room in the ED. Eliminate flickering lights like old fluorescents and avoid fluorescent lighting altogether if possible. Move active flashing lights or monitors out of the patient’s direct visual field.
Step 2: Hear- Remove excessive auditory stimuli before interacting. Turn off any unnecessary alarms or beeps from devices in the room, mute the TV, and move the patient to the least noisy room in the ED, if possible.
Step 3: Feel- Ask both the patient and care providers if they have any textures, which they find calming or agitating. Patients with ASD may have specific tactile stimuli they find soothing or aggravating.
Step 4: Speak – Say aloud in simple language to the patient everything you are doing before and as you are doing it. Ideally, speak directly in front of the patient’s plain view, because they may have difficulty with localizing the sounds.
It is possible to provide better healthcare to individuals with ASD through better training of health workers and structural changes to the EDs.
In this long journey to perfection, the first step could be increasing our awareness.
Because they deserve the best.
- Autism Speaks, What Is Autism?, Accessed June 4, 2021, https://www.autismspeaks.org/what-autism
- Lytle S, Hunt A, Moratschek S, Hall-Mennes M, Sajatovic M. Youth With Autism Spectrum Disorder in the Emergency Department. J Clin Psychiatry. Published online June 27, 2018. doi:10.4088/jcp.17r11506
- IBCCES . Autism and the Emergency Department (ED): Why it’s Important. IBCCES. Published June 5, 2020. Accessed April 4, 2021. https://ibcces.org/blog/2020/06/05/autism-and-the-emergency-department-ed-why-its-important/
- When a Psychiatric Crisis Hits: Children with Autism in the Emergency Room. SPARK. Accessed April 4, 2021. https://sparkforautism.org/discover_article/when-a-psychiatric-crisis-hits-children-with-autism-in-the-emergency-room/
- Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. Br J Psychiatry. Published online March 2016:232-238. doi:10.1192/bjp.bp.114.160192
- Croen LA, Zerbo O, Qian Y, et al. The health status of adults on the autism spectrum. Autism. Published online April 24, 2015:814-823. doi:10.1177/1362361315577517
- Taylor K, Cadman E, Burkitt S, Langseth A. G338(P) Improving the emergency department experience for children with autism, and their families. In: Association of Paediatric Emergency Medicine. BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health; 2018. doi:10.1136/archdischild-2018-rcpch.328
- Kirsch SF, Meryash DL, González-Arévalo B. Determinants of Parent Satisfaction with Emergency or Urgent Care When the Patient Has Autism. J Dev Behav Pediatr. Published online June 2018:365-375. doi:10.1097/dbp.0000000000000573
- Giarelli E, Nocera R, Turchi R, Hardie TL, Pagano R, Yuan C. Sensory Stimuli as Obstacles to Emergency Care for Children With Autism Spectrum Disorder. Advanced Emergency Nursing Journal. Published online April 2014:145-163. doi:10.1097/tme.0000000000000013
- Nicholas DB, Muskat B, Zwaigenbaum L, et al. Patient- and Family-Centered Care in the Emergency Department for Children With Autism. Pediatrics. Published online April 2020:S93-S98. doi:10.1542/peds.2019-1895l
- Samet D, Luterman S. See-Hear-Feel-Speak. Pediatric Emergency Care. Published online February 2019:157-159. doi:10.1097/pec.0000000000001734