Children with Autism Spectrum Disorder (ASD) are a patient population that faces unique challenges in the emergency department.
ASD is characterized by deficits in sensory processing as well as impairments in communication and social interaction.1 This combination, particularly in a fast-paced ED setting, creates difficulty, especially when considering these patients often have a preference for routine and predictability.2 This is increasingly important for the ED provider to be aware of, as the number of children with ASD has risen in the last decade, with approximately 1 out of 54 children now carrying the diagnosis.3 Additionally, youth with ASD are up to 30 times more likely to come to the ED than youth without ASD.4 In addition, pediatric patients with ASD have an almost four-times higher odds of unmet healthcare needs than children without ASD.5 Therefore, it is critically important for ED providers to be aware of best practices in caring for this population.
Working with Family
It is important to note that no two children who carry a diagnosis of ASD are the same. This disorder is characterized by a wide degree of variability.1 Many children do not require deviation in routine practice, as long as the provider is knowledgeable of why and how they communicate differently.4 Other children may have very complex medical or social needs, requiring active measures to promote optimal care. Therefore, healthcare practitioners should rely on family guidance to find the best strategies for interacting with their child. In general, it is important to create as secluded of an environment as possible.6 Use single rooms if they are available and attempt to limit excess noise. When possible, try to limit the number of individuals entering the room to the minimum required. Use appropriate signage on the door of the room to encourage all staff to check-in with the patient’s primary nurse prior to entering. This ensures everyone is oriented regarding best practices for making the patient comfortable. It is important to consider that communication may be difficult. Whenever possible, set aside ample time to answer questions and attempt to spend uninterrupted time with your patient.4
While it is always important to explain to children what you are doing, this is especially true when working with patients with ASD. Use concrete language wherever possible with discrete choices between two things, rather than open ended choices or commands. Always attempt to make a thorough plan in advance, breaking things into small steps.6 Many children with ASD struggle with unpredictability and not knowing what is coming often builds anxiety and discomfort. Work with family members to make a plan for what to do during waiting intervals and be realistic about the time course of a visit whenever possible.
It has been shown that individuals with autism have similar thresholds for pain response as compared to the general population.7 However, patients with ASD have been shown to have difficulty describing and grading pain, so it is advised to assess pain as simply present or absent.6 Parents may also be aware of behaviors that occur when the child experiences pain. As with any vulnerable population, it is also important to fully assess for the presence of abuse or trauma. When possible, validated screening questions should be used, and a thorough physical exam should be conducted as indicated.8 Always express a high degree of empathy for behavioral challenges and work to employ creative solutions for individual needs. For example, if a patient becomes overwhelmed by stimuli, consider dimming the lights, allowing sunglasses or noise-cancelling headphones.6 If a patient is being admitted, be mindful that patients may prefer to wear their own clothing or have strong food preferences. As above, continue to work with family and ancillary staff to be accommodating where possible.
There are several conditions that are often comorbid with ASD. These include seizures, pica, gastrointestinal complaints, migraines, asthma, allergies, sleep disturbances and metabolic disorders.9 As such, it is important for the clinician to have a high degree of suspicion for these conditions. The most common comorbidity seen in autism is attention-deficit/hyperactivity disorder (ADHD), which has been shown to co-occur in as many as 50% of patients with ASD.10 Social anxiety, specific phobias, obsessive compulsive disorder (OCD), and oppositional defiant disorder (ODD) also occur at rates that are significantly higher than that of the general population.11 The prevalence of epilepsy in all children is estimated to be about 2-3%, but approximately 14% of children with autism are reported to have a seizure disorder.10 A high degree of suspicion should particularly be employed in individuals with concurrent intellectual disability (ID), as it has been shown that the prevalence of epilepsy is approximately 22% in this population, versus 8% in subjects with ASD without ID.12 Sleep disturbances are also incredibly common, with some studies reporting up to 77% of children with ASD having trouble with sleep.11
Children with ASD may be on a number of psychotropic medications.13,14 Both risperidone and aripiprazole have been approved for the treatment of irritability in ASD by the US Food and Drug Administration. Methylphenidate and atomoxetine are also commonly used for comorbid ADHD. Always perform a thorough medication reconciliation and be mindful of possible interactions. There is also evidence that children with ASD can be particularly sensitive to medications and side effects.15 It is important to carefully monitor for medication reactions, especially when using sedatives.
Establishing a Diagnosis of ASD
Methods of receiving a formal diagnosis of autism spectrum disorder include neurodevelopmental testing through the school system as well as through outpatient neuropsychiatry, child psychiatry, or neurodevelopmental specialists. It is important to recognize that the healthcare system is often one of the first places where autistic traits are noticed.16 Early signs can include impaired eye-contact, lack of imitation or pretend play, and slowed verbal and nonverbal communication development.2 Emergency physicians should encourage expedited follow-up with primary care providers for assessments and further referrals. Make sure parents are aware of the need for referrals if applicable; possibly including neurodevelopmental specialists, hearing assessments and outpatient support programs. Early intervention and socialization programs have been shown to be effective in improving core autism symptoms long-term.17 Unfortunately, these resources vary widely between locations of practice. As much as possible, please be aware of the landscape in your own community to provide your patients with the best available access to services.
- Rajendran G, Mitchell P. Cognitive theories of autism. Dev Rev. 2007;27(2):224-260.
- Seltzer MM, Krauss MW, Shattuck PT, Orsmond G, Swe A, Lord C. The Symptoms of Autism Spectrum Disorders in Adolescence and Adulthood. J Autism Dev Disord. 2003;33(6):565-581.
- Maenner MJ, Shaw KA, Baio J, et al. Prevalence of autism spectrum disorder among children aged 8 Years-Autism and developmental disabilities monitoring network, 11 Sites, United States, 2016. MMWR Surveill Summ. 2020;69(4):1-12.
- Lytle S, Hunt A, Moratschek S, Hall-Mennes M, Sajatovic M. Youth with autism spectrum disorder in the emergency department. J Clin Psychiatry. 2018;79(3).
- Karpur A, Lello A, Frazier T, Dixon PJ, Shih AJ. Health Disparities among Children with Autism Spectrum Disorders: Analysis of the National Survey of Children’s Health 2016. J Autism Dev Disord. 2019;49(4):1652-1664.
- T. Gabrielsen, PhD; J. Miller, PhD; E. Friedlaender M. Clinical Pathway for the Approach to Managing Behaviors in Children with Autism Spectrum Disorder (ASD)/Developmental Disorders. Children’s Hospital of Philadelphia Clinical Pathways. https://www.chop.edu/clinical-pathway/autism-spectrum-disorder-developmental-disorders-clinical-pathway. Published 2018. Accessed October 12, 2020.
- Moore DJ. Acute pain experience in individuals with autism spectrum disorders: A review. Autism. 2015;19(4):387-399.
- Zolotor AJ, Runyan DK, Dunne MP, et al. ISPCAN Child Abuse Screening Tool Children’s Version (ICAST-C): Instrument development and multi-national pilot testing. Child Abus Negl. 2009;33(11):833-841.
- Muskens JB, Velders FP, Staal WG. Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: a systematic review. Eur Child Adolesc Psychiatry. 2017;26(9):1093-1103.
- Matson JL, Nebel-Schwalm MS. Comorbid psychopathology with autism spectrum disorder in children: An overview. Res Dev Disabil. 2007;28(4):341-352.
- Mannion A, Leader G. Comorbidity in autism spectrum disorder: A literature review. Res Autism Spectr Disord. 2013;7(12):1595-1616.
- Amiet C, Gourfinkel-An I, Bouzamondo A, et al. Epilepsy in Autism is Associated with Intellectual Disability and Gender: Evidence from a Meta-Analysis. Biol Psychiatry. 2008;64(7):577-582.
- Goel R, Hong JS, Findling RL, Ji NY. An update on pharmacotherapy of autism spectrum disorder in children and adolescents. Int Rev Psychiatry. 2018;30(1):78-95.
- Mandell DS, Morales KH, Marcus SC, Stahmer AC, Doshi J, Polsky DE. Psychotropic medication use among medicaid-enrolled children with autism spectrum disorders. Pediatrics. 2008;121(3):e441-8.
- McPheeters ML, Warren Z, Sathe N, et al. A systematic review of medical treatments for children with autism spectrum disorders. Pediatrics. 2011;127(5):e1312-21.
- Baird G, Douglas HR, Murphy MS. Recognising and diagnosing autism in children and young people: Summary of NICE guidance. BMJ. 2011;343(7829).
- Estes A, Munson J, Rogers SJ, Greenson J, Winter J, Dawson G. Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder. J Am Acad Child Adolesc Psychiatry. 2015;54(7):580-587.