The rise in the diagnosis of autism spectrum disorder will mean a rise in first responders and medical professionals interacting with autistic individuals during emergency situations. This makes it essential for communities and healthcare facilities to prepare and train their personnel in how to prevent emergencies as well as approach and care for the autistic patient during emergency situations. It is also important for communities to plan their systems in order to accommodate autistic citizens in the case of mass emergency events.
Autistic individuals are more susceptible to getting injured and being in an emergency situation. A 2017 study (Guan et. al) identified individuals with a diagnosis of autism who died between 1999 and 2014 by screening causes of death and compared this to typical individuals. Researchers found that individuals with autism appeared to be at a substantially higher risk of death from injury as compared to their typical counterparts. The study also found that drowning is the most common cause of injury-related deaths in autistic children. This can be explained by the propensity to wandering in the autistic child and the attraction to water. Because of these risks, pediatric medical providers need to be extra vigilant when providing anticipatory guidance, related to injury, as they are counseling families with autistic family members. Learn-to swim classes by a reputable swim center, such as the YMCA, should focus on teaching the child to swim as well as water safety techniques. Pediatric providers should also ask about wandering habits and counsel about extra supervision, GPS trackers, and fencing. Counseling regarding community awareness is also essential. Informing trusted neighbors and local emergency services about a child’s propensity to wandering as well as providing recent photos and information is very useful if a child ever wanders and gets lost.
Tips to Prevent and Prepare for Wandering Emergencies
The National Autism Society recommends the following tips to prevent and prepare for wandering emergencies in autistic individuals:
- Secure home, outdoor gates, garage door,
- Use simple window/door alarms, baby monitors,
- Identify and address triggers,
- Teach safety/coping techniques and pursue forms of communication
- Enroll in swim classes
- Provide a safe-space “escape” alternative, such as a tent or quiet nook within the home,
- Secure wearable identification and/or locative technology,
- Alert relatives, school and neighbors,
- Alert local first responders
- Create an emergency plan, and
- Stay extra vigilant during transitions, parties, vacations, new moves, visits, and noise/stress/commotion.
Five Steps for First Responders to Support Autistic Individuals
If an emergency should occur involving an autistic individual, it is essential that first responders are given the training on how to effectively and therapeutically approach these situations. The American Military University (Kranick) has outlined five steps on how first responders can adapt their response when interacting with autistic patients during an emergency situation. He encourages first responders to:
- Educate themselves on autism,
- Know the signs of autism,
- Conduct training,
- Adjust their response, and
- Reach out to their community.
The signs of autism may vary between individuals, and this is especially evident in an emergency situation. For example, one autistic individual may run from a loud siren while another may be attracted to the loud noise. Since many autistic individuals have an affinity towards water, even when they cannot swim, it is important that emergency personnel remember to search bodies of water first when searching for a missing autistic individual. Autistic individuals may also hide instead of seeking help and may not respond verbally when called, therefore emergency responders must always check all areas even if they do not hear calls for help. Communicating directly with an autistic person may be difficult and many autistic individuals may understand what a person is saying but are unable to communicate in return. First responders should speak clearly and directly so that directions can be understood, and assistive technology should be used when applicable. Autistic individuals may also have high thresholds of pain which may mask serious medical issues. Therefore, adjusting testing and the physical exam to account for this is essential in properly diagnosing and caring for autistic patients.
Emergency personnel must always adjust their response to match the needs of their patient, and this is especially true when treating autistic patients. Working with a parent or caretaker is especially helpful as they may best understand what can calm or upset their loved one. Additionally, primary care doctors listing techniques that can calm their patient in their electronic record can be very helpful for Emergency Room staff if that record is shared.
First responders can minimize dysregulating stimulation by limiting the number of people around the patient, reducing the sound of sirens and lights, and creating a safe space by marking off an area. Minimizing physical contact is also helpful and a slow physical exam starting with the extremities and working towards the trunk tends to help build trust and comfort.
Mass emergency and emergency preparedness plans need to plan for accommodating the autistic person in every community. Given that schools receive public funding to ensure that all people receive the benefits of emergency response planning, there has been advocacy for autistic students to have individualized emergency support plans embedded in their Individualized Education Plan (IEP) at school (Kwolek et. al, 2021). Families should also prepare themselves with an emergency preparedness kit that is easy to access and retrieve. Autism Speaks has created a list of what should be included in an emergency preparedness kit. This includes the following items: a flashlight, batteries, first aid kit, medications (at least 3 day supply), medical ID for your loved one, list of triggers for your child, names/numbers of doctors and therapists, names and serial numbers of medical equipment, complete medical record, familiar items that bring comfort (IPAD, charging cables), assistive talking devices, emergency info sheet (include best way to communicate with your child), child’s IEP, earplugs, earphones, duct tape (mark an area in a shelter), service dog supplies/food if applicable.
Communities should also plan to accommodate for autistic individuals when conducting disaster preparedness planning. Shelters should take into account that autistic individuals may need some personal space to feel more able to cope in a stressful environment with many people. The accommodations should be equipped with multiple electrical outlets so that assistive communication devices can be charged. Some individuals may need earplugs/earphones to cancel out the noise of a large shelter. Systems should also be in place to prevent wandering. Items such as door/window locks and secure safety fencing around any pools and other bodies of water should be in place. Service animals should be allowed into any shelter area and accommodations with food and water for the animal should also be in place.
Finally, all plans involving first responder, medical, and community responses must involve a representative from the autistic community. Their lived experience is going to provide the knowledge and perspective to create an effective and comprehensive emergency plan.
Carrin E. Schottler-Thal, MD, is the Associate Professor of Pediatrics at Albany Medical College. She can be contacted at (518) 262-5180 by phone or by email at schottc@amc.edu.
