First responders are by definition available and on call twenty-four hours a day to provide emergency services ranging from medical to safety and protection needs. In most cases these encounters are brief, intense and are paired with stressful episodes including medical emergency, fire or other life threats. These encounters must be managed well and require expert intervention on the part of first responders to quickly provide assistance. These encounters intensify when a child or adult with Autism (ASD) is involved. First responders, including police, fire and Emergency Medical Services (EMS) can benefit from guidance regarding the needs of this population.
The literature regarding this topic is sparse at best. A review indicates that first responders need more training in this topic as well as other disabilities (Good, 2011; White, 2012). A child or adult diagnosed with ASD is seven times more likely to need emergency medical services as compared with a typically developing comparison group (McDermont, Zhou & Mann 2008). Mims (2008) classifies this population as “high risk” in terms of medical and emergency care needs. The literature highlights higher risk in terms of such emergency situations as elopement, wandering (Law & Anderson, 2011) and drowning (Myers, 2012). Greater research into techniques that positively support those with ASD during emergencies is needed for training purposes and effective intervention (Kupietz, ND).
ASD is defined by social communication impairments and the presence of restricted and repetitive patterns of behavior (American Psychiatric Association, 2013) paired with atypical responses to sensory stimuli. A person with this diagnosis may react very differently to the stimulation and demands of an emergency situation. These issues set the stage for challenging behaviors. A person with ASD may have limited communication skills impacting their ability to respond to commands, provide information about their internal states or resulting in behaviors that increase risk such as running or aggression to self and others. Sensory stimuli in the form of lights and sirens may be misinterpreted by the person as threatening or aversive. The presence of strangers dressed in unfamiliar clothing with equipment that invades personal space can be a trigger for behavior. Tactile defensiveness (dislike of being touched or touching things) can create tremendous barriers to a physical exam or to the use of equipment designed to obtain vital signs.
Behaviors can create tremendous risk to all involved and should be addressed by both through prevention and response tactics. Prevention is the first line of defense followed by using strategies that meet the unique needs associated with ASD. Resources will be provided for more specific supports, training and information available for first responders and families.
Prevention Tactics
The first priority is to provide high quality training in the basic aspects of ASD to all first responders during initial ongoing training. This content needs to highlight the unique learning and behavioral needs of those with ASDs including specific tactics that can be used to quickly interpret and respond to behaviors. Training should emphasize the incredible variability of this population as well as the need for partnership with families and caregivers. Training should focus on the core impairment areas of ASDs as they pertain to the demands of an emergency situation. First responders need to understand that children and adults with ASD may not respond to commands, may struggle with the sensory aspects of the situation, will not be good reporters of symptoms, may not comply with medical examinations and might run away from supports. They also need to be prepared for aggression and to interpret this as a probable communication breakdown rather than an intentional act.
Familiarity with EMS agencies is a viable prevention tool. For example, a child with ASD may be prone to running/eloping from her home. This child may not react in a typical manner to interactions with strangers nor respond to commands to stop, come here or to get into an unfamiliar vehicle. Preventative supports in the home include making sure there are door locks and alarms as well as instructional methods to teach replacement behaviors. Parents can also address this behavior by making their local EMS agencies (e.g. police and fire) aware of the situation and making a face to face visit. Personnel should be made aware of the child’s unique communication, behavioral and sensory needs and any other limitations. Introductions in advance of emergency situations can go a long way to increasing the effectiveness of a possible intervention.
Emergency situations can cause the most rational of adults to struggle with remaining calm and organized. The parent or caregiver may be distracted with the responsibilities of comforting the person with ASD and less able to provide history to the EMS provider. Parents and caregivers might consider making a “quick guide” to keep by the door that includes pertinent medical information, insurance numbers and basic visual systems that can support communication. All household members should be aware of the location of this guide for quick access it in the event of an emergency.
Intervention Tactics
First responders can make multiple changes to their approach and responses to address communication, sensory and resultant behavioral needs. Sensory responses are an issue in ASD and warrant certain adjustments to the typical response pattern. First responders may consider decreasing the amount of lights and sirens on approach to the scene. They should limit the number of personnel who enter a home and consider a “two at a time” approach if possible. A person with ASD may retreat in fear based upon presence of strangers. Limiting the number of strangers as well as devices and noise can help in these situations.
Sensory reactions (hypo or hyper, depending on the person) may influence the responder’s ability to effectively use equipment and/or to touch the person during a physical examination. The responder should ask the parent or caregiver to assist whenever possible during an intervention. Effective techniques include starting the examination in a distal to proximal fashion (Rzucidlo, 2003) and modeling what is going to be done with the caregiver or parent first. Other techniques might include using a doll to demonstrate what you are going to do (e.g. checking heart rate) before attempting to use this on the person. Caregivers and parents can help responders to understand what kinds of touch are likely to be met with tactile defensiveness and can demonstrate effective strategies. Carefully explain, in very simple language, what you are doing if it involves touch or the use of equipment on the person’s body. Overall fear of the unfamiliar can be addressed by allowing the child or adult to have a favorite comfort object, to retreat (if safe and feasible) to a familiar area or to sit with a familiar person. Emergency situations such as fires or car accidents may require different response methods and are beyond the scope of this particular article.
Communication difficulties can be dealt with during situations by relying on parents or caregivers if available and following their lead. Responders must remember that a person with ASD may very not respond to commands the first time and will need processing time as well as possible augmentative systems. The team should delegate one person to be the main communicator in any situation. This person should speak calmly and avoid the tendency to repeat or raise their voice to gain compliance or a response. Providing a few extra seconds of wait time to process language is critical. Use a “talk, wait, repeat” model when asking questions or providing basic commands. Repeating of questions or commands should be paired with a visual, action or model on a caregiver or other safe person. The language should be kept as literal as possible, while avoiding the use of humor or sarcasm, as these are often misinterpreted by persons with ASD. Eye contact may be fleeting, avoidant or otherwise impaired. Demanding eye contact may result in less compliance and more refusals. Encourage the person to look at the responder by using a favorite object or other item and bringing it to their eye level. Do not insist on “look at me” during an examination.
The person with ASD may require transport in a vehicle to obtain further intervention. The unfamiliarity of the vehicle paired with strangers, lights and other sensory influx may trigger stress reactions leading to refusal behavior. Encourage the caregiver or parent to be the model for any action including, for example, the use of a backboard, neck brace or other immobilizing device. The action of a familiar adult “doing it first” may change the level of compliance with the actual person. Physical interventions may lead to increased refusal and aggression. In these situations the first responder should limit conversation and verbal input to one person who speaks calmly, literally and provides visuals whenever possible. Recognition of these events as frightening and unpredictable can contribute to the prevention of frustration and impatience on the part of the first responder.
Resources
Behaviors that are emitted by individuals with ASDs during emergencies can be unpredictable, frightening and difficult for all involved. There are a number of resources available that are openly accessible for any interested party. For example, the National Fire Protection Association (www.nfpa.org/disabilities) has a web page dedicated to providing information about emergency response issues. In 2010 this organization released an interactive social story specifically designed to address the unique needs of children with ASD in response to smoke alarms entitled “I Know My Fire Safety Plan” (NFPA, 2010). This book can be personalized to the individual child and interacts with electronic platforms. Autism Speaks (www.autismspeaks.org) has a basic information page dedicated to best practices in an emergency situation. Their list of “Quick Facts for EMS” provides concise and helpful strategies (www.autismspeaks.org/family-services/autism-safety-project/first-responders/emergency-services). Training, prevention and intervention strategies can all assist to create a more positive experience for those with ASDs and the first responders who provide emergency assistance.
Summary
Training is a vital component of the first responder’s ongoing professional development and should include a focus on the variability of ASDs as well as the general needs that encompass the definition of this disorder. Ongoing research into best practices during emergencies is needed along with a continued focus on training for all providers. Emergency situations for children and adults with ASDs require a special focus on prevention through building familiarity as well as intervention that considers the core impairment areas.
References
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders. (5th ed.). Arlington, VA: American Psychiatric Publishing.
Good, D. (2011). Autism Spectrum Disorder: A fire/EMS challenge. Fire Engineering, 164 (3), 42-51.
Kupietz, K. (ND). Best practices for Autism during emergencies. Retrieved from: http://www.usfa.fema.gov/pdf/efop/efo46708.pdf.
McDermont, S., Zhou, L. & Mann, J. (2008). Injury treatment among children with Autism or Pervasive Developmental Disorder. Journal of Autism and Developmental Disorders, 38(4), 626-633.
Mims, T. (2008). Seeing an invisible disability: Autism spectrum disorder awareness training for firefighters in Tuscaloosa, Alabama. National Fire Academy EFO Paper.
Law, P. & Anderson, C. (2011). IAN research report: Elopement and wandering. Retrieved from: http://iancommunity.org/cs/ian_research_reports/ian_research_report_elopement.
Myers, S. (2012). Review of mortality in autism drowning. Association for Science in Autism Treatment. Retrieved from: http://asatonline.org/resources/articles/mortality.htm.
National Fire Prevention Association (2010). I Know My Fire Safety Plan. http://www.nfpa.org/press-room/news-releases/2010/nfpa-releases-interactive-fire-safety-storybook-for-children-with-autism-spectrum-disorder Retrieved from www.nfpa.org.
Rzucidlo (2003). Autism 101 for EMS practitioners. Retrieved from: http://www.paemsc.org/assets/files/Autism%20101%20for%20EMS%20Practitioners.pdf
Quick Guide for Emergencies (ND). https://www.autismspeaks.org/family-services/autism-safety-project/first-responders/emergency-services. Retrieved from www.autismspeaks.org.
Stelter, L. (2013). First responders, take note: CDC reports 1:50 children has Autism. Firehouse, 38 (8), 101-107.
White, B. (2012). Autism awareness for the fire service. Minnesota Fire Chief. January/February, 30-32.
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