When 1 in 36 children in the United States today have an autism diagnosis, it isn’t a matter of if first responders will encounter patients with autism, but a when. People with autism may react differently to the overwhelming stimuli an emergency situation presents, may not be cooperative or be overwhelmed by medical examinations, or may react unusually to pain. This can create a confusing or traumatic situation for all involved, including first responders and parents as well as the patient.
Autism is a neurological condition that causes social communication differences, challenges with social skills, repetitive behaviors and restricted interests. It is a spectrum disorder, which means that the characteristics of autism fall on a spectrum ranging from severe to mild. People who are diagnosed with level 1 autism are considered to need minimal support in everyday functioning while people who have level 3 autism need significant support and possible 24-hour care or one-to-one aides. However, not everyone with autism will experience every sign or symptom. Some will have many and some will have few, with most people with autism falling somewhere in between.
People with autism may have difficulty understanding and interpreting social cues, exhibit sensory overwhelm and sensitivities, and have unique ways of processing information. We must recognize and accommodate these differences to ensure effective communication and avoid escalating potentially stressful situations. People with autism also have higher-than-average mortality rates, often from accidental death such as drowning or being hit by a car, or from medical causes, in particular epilepsy.1
Communication
Keeping communication simple and straightforward is very important. Here are a few points to keep in mind.
Use clear language. When communicating with a person who has autism, first responders should use clear and concise language. This is not the time to use euphemisms or sarcasm. Many people with autism are very literal, black-and-white thinkers and may not understand idioms. Ask, “Is your mom diabetic,” instead of, “Does your mom have problems with her blood sugar?”
Use simple words or visual aids. A communication board or Picture Exchange Communication System (PECS) may facilitate effective communication. Also, be patient, as many people with autism will need more time to process verbal information. They may need extra time and space to process and respond to questions or instructions. Be mindful of the tone of your voice; do not yell as that may escalate the situation and increase sensory issues, but speak in a moderate tone and with authority, but not demanding. Many people with autism struggle with demands and this may increase negative behaviors.
Explain everything you are doing. This applies even if the patient is nonverbal or low verbal and you think that they may not understand. People can often understand much more language than they can speak. Whenever possible, show what you need to do instead of telling. For example, perform a blood pressure or pulse check on a family member to demonstrate what you will be doing to the patient. Finally, remember to use caregivers, such as parents and teachers. They are the experts on what is the best way to communicate with the person with autism.
Be aware of sensory stimuli. Many people with autism also have sensory processing disorder and struggle with overwhelming sensory stimuli. Limiting personnel to the minimum needed for safety may help to reduce overwhelm, as will turning off lights and sirens. Carrying a kit of sensory-friendly items, such as noise-cancelling headphones, stress balls, whiteboards, fidget toys and stuffed animals may also help to reduce sensory overwhelm and lessen unwanted behaviors. If you have a sensory kit, use it to build rapport with the patient and assist them in reducing overwhelming sensory stimuli.
Talk to the patient about their interests. Consider asking the patient or the caregivers what their interests are, as many people with autism will have a specific interest they will want to talk about. It may be anything from Pokémon to ancient dog breeds. Use that interest to engage in conversation and build rapport. The person may be happy to tell you about their interests, even if it is something you know nothing about.
Keep safety in mind. Safety is always the top concern when a situation becomes escalated. There might be times when the first responder may need to retreat from a scene for safety reasons and wait for it to be secured. Other times, verbal de-escalation may be appropriate.
Establish rapport. Start by attempting to create rapport with the patient, particularly by using the person’s special interests. Keep yourself calm and remain professional; avoid overreacting to challenging statements or loud outbursts.
Always remember that the patient with autism may need extra time to process information, especially verbal information, and allow them that time to process and make decisions. Stay empathetic, repeating information to make sure that you understand and keep yourself neutral; don’t make judgmental statements. However, if someone is having a meltdown or an outburst where they are neurologically overwhelmed and lashing out physically or verbally, forcing them to engage can actually worsen the episode. Allow caregivers to assist the person to re-regulate their nervous system or simply give space, provided that everyone is safe.
Assessment Techniques
When performing a medical or trauma assessment of a patient with autism, special care should be taken.
Seek out a quiet space. Consider moving the patient to a quieter environment and reduce lighting if that is overwhelming to the patient. If the patient is displaying repetitive behaviors like hand flapping or rocking back and forth, only interrupt if necessary for safety reasons.
Do not invade the patient’s space. Build rapport and engage the patient from a distance if possible. Remember that many patients with autism will have sensory needs. Ask permission before touching the patient. Some patients with autism will become upset with physical touch so approach the situation carefully. Explain everything as you go, and allow the patient choices whenever possible. For instance, “This blood pressure cuff may become tight on your arm; let me know if it hurts too much. Which arm would you like me to put it on?”
Think before you speak. Be careful saying, “take” a pulse or a blood pressure, as the patient may not understand and think you are literally taking something away from them. Use “measure” or “count” instead. Perform exams distally to proximally, introducing the patient to your touch and gaining their trust as you go.
Always do a thorough assessment. Many people with autism will not have a normal range of sensations and may not feel pain, heat or cold as first responders would expect. There may be an unusual response to pain, like laughing, humming, removing clothing, or extreme vocalizing. Some people may even not acknowledge the pain altogether, despite the presence of a significant injury or illness. A complete assessment will ensure that all injuries or illnesses are found and can be treated.
Wandering
Of particular concern to first responders is the high rate of elopement, or wandering, among the autism population. This is when a person with autism leaves a safe, supervised area such as home or school without the knowledge of the caregivers. In one large study, 46% of parents reported that their child with autism over the age of four years old had wandered away at least one.2
The reported dangers were primarily drowning and getting hit by a car. Many people with autism have an impaired sense of danger and will wander in front of a car or fall into a river or pool. First responders, when searching for a missing person with autism, should consider requesting additional manpower, conducting visual searches, and focusing their search on places the person has been within the last 24 hours.3
Community Outreach
First responder agencies may be interested in proactively reaching out to their community and inviting special needs individuals to interact with them. Some people with developmental disabilities may fear first responders with their loud sounds, bright lights, strange uniforms, and unusual demands.
Community outreach can reduce some of that fear and increase familiarity for both first responders and the people they serve. Many places are doing “touch-a-truck” events where children can come explore large trucks, including firetrucks, ambulances and police cars as well as tow trucks and delivery vehicles. While these are wonderful events, many families who have children with autism may actually avoid these due to large crowds, red lights and sirens, as all of that can increase sensory overwhelm.
Agencies may want to consider hosting a sensory-friendly touch-a-truck event that limits the number of people at one time, perhaps through ticketing and increasing the length of the event, as well as limiting the use of lights and sirens. First-responder agencies should also utilize their social media presence to invite families of developmentally disabled children to interact with members of the department. This interaction will allow individuals with autism to familiarize themselves with first responders. It will also allow us as first responders to learn about the needs within the community we serve.
For transporting ambulance companies, consider creating a picture book of frequented hospitals, ER rooms and even ER staff, with consent. Many people with autism are visual communicators, and seeing pictures will help to reduce anxiety.
Transport Considerations
Always remember that your patient may be suffering from sensory overload, which can be both physically and emotionally painful. If possible, reduce the use of lights and sirens. Offer noise-cancelling headphones if equipped or a whiteboard to write or draw on during transport. Allow a familiar adult to ride if appropriate and per your agency policies. This may be a parent but also might be a social worker, teacher, or community worker.
If the person is aggressive or self-injurious, follow your scope of practice and local protocols for chemical restraint. This is not used for sedation purposes, but a way to keep the patient and the first responder safe during transport. Physical restraints should be used as a last resort, as they will increase the fight-or-flight response and continue to escalate and add to the patient’s sensory overwhelm.
If physical restraints must be used, always watch the patient’s airway very carefully, as many people with developmental disabilities have poorly developed trunk muscles creating an increased risk of positional asphyxia. Finally, be sure to communicate with the receiving hospital that you have a patient with autism and will need a quiet, private room if possible.
Conclusion
People who have autism deserve our respect, compassion, and the best care we can give, just like any other patient we have. Taking the time to learn about autism and communication strategies can help us to reduce the emotional trauma that an interaction with first responders can cause as well as safely get the person to definitive care.
References
- Mouridsen SE, Bronnum-Hansen H, Rich B, Isager T. Mortality and causes of death in autism spectrum disorders: an update. Autism. 2008; 12:403–14. bit.ly/49crRDX.
- Rice, C. E., Zablotsky, B., Avila, R. M., Colpe, L. J., Schieve, L. A., Pringle, B., & Blumberg, S. J. (2016). Reported wandering behavior among children with autism spectrum disorder and/or intellectual disability. The Journal of Pediatrics, 174. bit.ly/3VjjrHe.
- Anderson C, Law JK, Daniels A, Rice C, Mandell DS, Hagopian L, et al. Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics. 2012; 130:870–7. bit.ly/43jHibQ.
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