Autism spectrum disorder (ASD) is a developmental disability with increasing prevalence in the United States. The CDC estimates 1 in 59 children have ASD and is 4 times more common in boys than girls. The changing landscape makes is difficult to know true rates of healthcare utilization, but individuals and families impacted by ASD often receive a range of services and work with many providers. It is common for parents/caregivers to seek support from social workers, case managers, psychiatrists and pediatricians/primary care providers. Individuals with ASD can exhibit various forms of agitation, including, aggression towards loved ones, self-harm, pacing, increased rates of repetitive movements, handing flapping and other behaviors. When times are tough, it can be challenging for them and their families to know where to turn, but often they will seek out medical providers. There are several key interventions to offer them.
First, it is important to investigate medical causes of physical discomfort or distress. Medical co-morbidities are common among individuals with ASD and may present with acute change in behaviors. Common causes for agitation include GI upset, constipation and dental pain among others. Abrupt onset of behaviors over the past several weeks or less, particularly if there is no known trigger, can be sign that there is medical cause. Most often, if the medical illness is treated behaviors will resolve or return to baseline.
Second, help families prepare for emergency situations. Often, parents/caregivers will know intuitively how to coach providers to interact more effectively with their ASD-impacted family member, by sharing information on sensory needs, preferred interests, preferred foods, particular fears, preferred communication style. Guiding families to streamline this information into a one-page information sheet can improve access to quality care.
Third, therapeutic and behavioral interventions can be effective at decreasing behaviors. Applied Behavioral Analysis (ABA) and behavioral consultation are two commonly used and available modalities. These interventions help clarify underlying causes, and aim to change behavior patterns. They can be accessed through local Regional Center branches and medical insurance, but there are other avenues. For individuals receiving school services, the team at school can assess and create a behavior plan as part of the IEP process. The most effective way to help families access care is to encourage them to seek out these services, connect them with knowledgeable case managers or social workers, and / or use consultation with SmartCare. To help with family expectations, it is important to educate families that these approaches take weeks to months to show benefits.
Fourth, comorbid psychiatric illnesses are common, and for youth impacted with ASD, they can lead to aggression and agitation. Consider whether anxiety or depression are playing a role, and seek out psychiatric consultation.
Fifth, medication management does have a role in decreasing agitation and aggression. Pharmacological interventions are appropriate when medical causes have been rule out, and behaviors are persistent. If behaviors are dangerous or severe, we may recommend medications more readily. The FDA has approved Risperidone (5years-adult) and Aripiprazole (6 years-adult) for management of irritability and aggression in ASD. These medications have been shown to be effective, but require metabolic monitoring, even if low doses are used. To use either, use the principle of “start low” and check fasting lipids, with CMP and CBC every 3-4 months, with monthly weights. The FDA gives guidelines on dosing strategies, but often lower doses, such as 0.5 mg of risperidone (Risperdal) and 1 mg of aripriprazole (Abilify) may be effective. In addition, Guanfacine (1-4 mg / day, BID dosing) and Clonidine (0.05 – 0.2 mg/day, BID or TID dosing) can help. These medications do not require regular blood tests, but blood pressure must be followed.
Dealing with aggression and agitation can be overwhelming for patients, families and providers. We can help families by providing medical evaluation, empowering parents to bring their voice into medical care, optimizing behavioral interventions, considering psychiatric components, and in select cases, using psychopharmacology. Consultation with psychiatrists and developmental behavioral pediatrics is also an option and SmartCare can guide providers to access this.
Iannuzzi, D. A., & Cheng, E. R. (2015). Brief Report : Emergency Department Utilization by Individuals with Autism, 1096–1102. https://doi.org/10.1007/s10803-014-2251-2
Kalb, L., EA, S., 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 8p. https://doi.org/10.1097/PEC.0b013e3182767d96
McGonigle, J. J., Venkat, A., Beresford, C., Campbell, T. P., & Gabriels, R. L. (2014). Management of Agitation in Individuals with Autism Spectrum Disorders in the Emergency Department. Child and Adolescent Psychiatric Clinics of North America, 23(1), 83–95. https://doi.org/10.1016/j.chc.2013.08.003
McGonigle, J. J., Migyanka, J. M., Glor-Scheib, S. J., Cramer, R., Fratangeli, J. J., Hegde, G. G., … Venkat, A. (2014). Development and evaluation of educational materials for pre-hospital and emergency department personnel on the care of patients with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44(5), 1252–1259. https://doi.org/10.1007/s10803-013-1962-0
Nicholas, D. B., Zwaigenbaum, L., Muskat, B., Craig, W. R., Newton, A. S., Kilmer, C., … Cohen-Silver, J. (2016). Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder. Social Work in Health Care, 55(6), 409–426. https://doi.org/10.1080/00981389.2016.1178679
Venkat, A., Migyanka, J. M., Cramer, R., & McGonigle, J. J. (2016). An Instrument to Prepare for Acute Care of the Individual with Autism Spectrum Disorder in the Emergency Department. Journal of Autism and Developmental Disorders, 46(7), 2565–2569. https://doi.org/10.1007/s10803-016-2778-5
Liu, G., Pearl, A. M., Kong, L., Leslie, D. L., & Murray, M. J. (2017). Erratum to: A Profile on Emergency Department Utilization in Adolescents and Young Adults with Autism Spectrum Disorders (Journal of Autism and Developmental Disorders, (2017), 47, 2, (347-358), 10.1007/s10803-016-2953-8). Journal of Autism and Developmental Disorders, 47(8), 2637. https://doi.org/10.1007/s10803-017-3100-x
Bauman, M. L. (2010). Medical Comorbidities in Autism : Challenges to Diagnosis and Treatment, 7(July), 320–327.
Buie, A. T., Campbell, D. B., Hyman, S. L., & Jirapinyo, P. (2015). Evaluation , Diagnosis , and Treatment of Gastrointestinal Disorders in Individuals With ASDs : A Consensus Report, 125(January 2010).
Centers for Disease Control and Prevention Morbidity and Mortality Weekly Report. (2014). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network , 11 Sites , United States , 2010, 63(2).
Clarke, C. (2015). Case Report Autism Spectrum Disorder and Amplified Pain, 2015.
Guinchat, V., Cravero, C., Diaz, L., Périsse, D., Xavier, J., Amiet, C., … Consoli, A. (2015). Acute behavioral crises in psychiatric inpatients with autism spectrum disorder (ASD): recognition of concomitant medical or non-ASD psychiatric conditions predicts enhanced improvement. Research in Developmental Disabilities, 38, 242–55. doi:10.1016/j.ridd.2014.12.020
Furuta, G. T., Williams, K., Kooros, K., Kaul, A., Panzer, R., Coury, D. L., & Fuchs, G. (2012). Management of constipation in children and adolescents with autism spectrum disorders. Pediatrics, 130 Suppl 2, S98–105. doi:10.1542/peds.2012-0900H
Gurney, J. G., Mcpheeters, M. L., & Davis, M. M. (2015). Parental Report of Health Conditions and Health Care Use Among Children With and Without Autism, 160, 825–830.
Kielinen, M., Rantala, H., Timonen, E., Linna, S.-L., & Moilanen, I. (2004). Associated medical disorders and disabilities in children with autistic disorder: a population-based study. Autism : The International Journal of Research and Practice, 8(1), 49–60. doi:10.1177/1362361304040638
Kohane, I. S., McMurry, A., Weber, G., MacFadden, D., Rappaport, L., Kunkel, L., … Churchill, S. (2012). The co-morbidity burden of children and young adults with autism spectrum disorders. PloS One, 7(4), e33224. doi:10.1371/journal.pone.0033224
Kuddo, T., & Nelson, K. B. (2003). How common are gastrointestinal disorders in children with autism ?, 339–343.
Levy, S. E., Giarelli, E., Lee, L., Schieve, L. A., Kirby, R. S., Cunniff, C., … Rice, C. E. (2010). Autism Spectrum Disorder and Co-occurring Developmental , Psychiatric , and Medical Conditions Among Children in Multiple Populations of the United States, 31(4), 267–275.
McElhanon, B. O., McCracken, C., Karpen, S., & Sharp, W. G. (2014). Gastrointestinal symptoms in autism spectrum disorder: a meta-analysis. Pediatrics, 133(5), 872–83. doi:10.1542/peds.2013-3995
Muskat, B., Burnham Riosa, P., Nicholas, D. B., Roberts, W., Stoddart, K. P., & Zwaigenbaum, L. (2015). Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals. Autism : The International Journal of Research and Practice, 19(4), 482–90. doi:10.1177/1362361314531341
Sakai, C., Miller, K., Brussa, A. K., Otr, L., Macpherson, C., & Augustyn, M. (n.d.). Challenges of Autism in the Inpatient Setting, 82–84.
Scarpinato, N., Bradley, J., Kurbjun, K., Bateman, X., Holtzer, B., & Ely, B. (2010). Caring for the child with an autism spectrum disorder in the acute care setting. Journal for Specialists in Pediatric Nursing : JSPN, 15(3), 244–54. doi:10.1111/j.1744-6155.2010.00244.x