In the past, the term ‘autistic’ had been used to describe both an individual and the disorder. ‘Individual with autism’ is now becoming the more commonly accepted description. Autism is considered by many as a trait of a person, rather than the whole identity of the person.
In 2010, 71 875 firefighters were injured in the line of duty, 13 355 of them being non-fire emergency situations. The number of non-fire emergencies increased by a substantial 247% due in large part to an increase in the number of medical aid incidents (Karter and Molis, 2011). Our goal is to prevent as many injuries as possible. We train to prevent line-of-duty injuries, but one possible source of danger that might be overlooked is an emergency situation involving an individual with autism. A first responder is seven times more likely to come in contact with an individual with autism than the average person (New York State Office for People with Developmental Disabilities, 2012), so a good understanding of the condition and how that might impact on an emergency situation is imperative, for the safety of the individual as well as the first responder.
Knowing that an emergency situation involves an individual with autism is an important factor to consider, from the dispatcher to the first responders on scene. When the dispatcher includes ‘the individual has autism’, what would your reaction be? Is autism something you just hear about or are you prepared for a situation that will be unique and unpredictable?
First, to understand how to properly interact in an emergency situation with an individual with autism, it may help to know a little about the disorder. In the US, approximately 1–110 children are born with some level of autism (Centers for Disease Control and Prevention, 2010). In the UK, a recent study at Cambridge University led by Professor Simon Baron-Cohen shows the rate could be as high as 1–60, with an even higher rate in boys (Reid, 2009).
Autism is a lifelong developmental disability and is part of the autism spectrum; it affects people in very different ways, allowing some people to live relatively ‘normal’ lives while others will require specialist support for life. With autism, brain function is affected, interfering with reasoning, communication, and social interaction. Approximately 25% of individuals with autism have epilepsy as well (National Institute of Neurological Disorders and Stroke (NINDS), 2011). For some individuals with autism, it is like going into a sports bar with all the TVs on and noise everywhere. Instead of hearing one TV, they hear all of them at once and cannot focus on one TV, making direct communication difficult or even impossible.
Recognising autism
With no outward physical markers of the condition, a firefighter or emergency medical technician/paramedic (EMT) might not be able to tell if the individual has autism right away. There are many characteristics and each person may only display a few of them. The best way to diagnose autism is to observe behaviours. Traits that you may experience when an individual has some level of autism may include hand flapping, repetition of what is said (also known as echolalia), lining up objects, pacing back and forth, avoiding eye contact, rocking, spinning, jumping or bouncing, limited, delayed or no language, and high pain threshold; ‘I get hurt. I'm ok.’ (Hornstein, 2009). This can create challenges for the first responder. Also look for signs that an individual with autism may be present on the scene, such as Autism Awareness stickers in the windows or magnets on a vehicle, even ID bracelets on the individual.
Information and communication are paramount and should start from the call to 911. When a caller provides the dispatcher with details that the individual involved has autism, this should become a pertinent part of the dispatch. Parents may be reluctant at times to give information about their autistic child. Asking the caller if there is anything we should know about the individual that will help us better manage the emergency situation, may yield helpful information. Dispatchers relaying information should alert the first responder before they arrive on scene that the individual has autism. As a dispatcher, you should note the address and the fact that an autistic individual resides there in the response system, so the information is readily available for possible future emergency calls. First responders armed with the proper knowledge going into the situation can greatly improve the outcome of their emergency response.
Responding to an emergency
As a first responder when you are first made aware a situation involves an individual with autism, arrive if possible, on scene without the use of sirens or flashing lights. Sound and light sensitivity is common in autism and may trigger a seizure or cause the individual to shut down or hide, making the situation worse.
A parent or caregiver of an individual with autism plays an important part in any emergency situation involving that person and this should not be underestimated. There are key questions you could ask a parent or caregiver such as ‘Is the individual verbal or non-verbal? How does the individual react under stress? What usually works to calm them down? Where might the individual hide if they are scared or want to be left alone?’. Knowing the answers to these questions can save you valuable time by letting you know what to expect and what approach to take. However, given the varying severity of the condition, individuals with autism may live entirely independently so professional judgement is required to assess each situation individually and act accordingly.
There is a possibility that children and adults with autism could hide in a fire situation. Your search should include any tight, out-of-the-way place you would least expect to find someone. Many individuals with autism find comfort in tight or closed in areas. On finding the individual, the first responder should speak slowly with clear directions. A good rule of thumb is to wait at least 10 seconds for a response. Sometimes rephrasing the question may help. Instead of ‘What is your address?’ you should ask ‘Where do you live?’, or instead of ‘Are you in pain?’ ask ‘Where do you hurt?’. Talking louder, getting upset, or using force may cause the individual to stop communicating or possibly to shut down all together.
Bringing the proper tools can help expedite the situation. Some individuals with autism can be prone to wandering, or as it is called by many, elopement. By necessity families may lock exterior and interior doors. You may find windows locked or nailed shut. The glass in windows is sometimes replaced with unbreakable Plexiglas or other materials to hinder potential wandering by an individual with autism (Cannata, 2007).
Some individuals with autism may be sensitive to touch, while others may not feel the cold, heat or pain in a way the most people do. They may fail to express any pain even with apparent injuries being present. This could cause injuries to be overlooked. Signs that the individual may be in some sort of pain may include laughter, humming or singing and removing their clothes. Watching for these signs and doing a complete evaluation could help you find an otherwise unnoticed injury (Cannata, 2007).
If individuals get over-stressed or frustrated, they may shut down or have a total meltdown. One common misconception is that a meltdown is an everyday temper tantrum. During a meltdown, individuals with autism are not able to process how their actions and behaviors will affect others. The individual may scream, kick, bite, swear and throw things, so being aware of this possibility is essential (Kelble, 2010).
Properly dealing with the individual's meltdown will greatly improve the outcome of the situation. First and foremost, try lowering your voice or even be quiet and let the situation play itself out. Back up and give the individual space. Open the palms of your hands and put your arms to your side. Last, be quietly reassuring without any threat of consequences.
Complications
Restraining the individual may become an issue and should only be used as a last and final resort.If calming techniques don't work or there is no time, explain exactly what you are doing and then do it. Restrain the individual with as many people as you can. This will make the situation safer for you and the individual (Hornstein, 2010). If a situation arises and you have to quickly move an individual with autism, put their arms by their sides and wrap them in a blanket. The close tight quarters will give them a secure feeling and may help eliminate a meltdown during the rescue. This will also protect the first responder from thrashing if the individual is trying to escape from the situation he or she is in (Cannata, 2007). Proper restraining position is face up.
It was mentioned earlier that approximately 25–30% of individuals with autism develop epilepsy or other seizure disorders in their adolescence. This means that the potential for seizures should always be expected, and basic training skills should be adhered to: remove any dangerous objects that a patient may hit during movement; protect the head from hitting anything hard, such as the floor; place the patient on their side to allow saliva/drool to ‘drain’. If the seizure continues, and you are appropriately trained, use medication to stop the seizure.
When transporting an individual with autism to the hospital, allow a primary carer to accompany the individual. Communicate with the hospital before arrival; request a quiet, isolated room for the patient and let them know the individual has autism; when possible turn lights and sounds off to minimize sensory overload.
Due to the difficulties people with autism have with social imagination, their understanding of the concept of danger may put them at further risk of injury; not comprehending danger, individuals may run out into traffic or back into a place they were just rescued from.
Individuals with autism running out of the house unattended (called elopement) is a serious issue. Drowning, as well as prolonged exposure remain top causes of death in the autism population. While there has been no official tracking of wandering-related incidents involving individuals diagnosed with autism, in an online poll conducted by the National Autism Association (NAA) in 2007, 92% of parent respondents said their children with autism have a tendency to wander away from safe environments (Autism Speaks, 2012). Because individuals with autism have no real fear of danger, they may also go to a favourite place that they know, wander into traffic or along railways, or attempt to enter nearby homes.
Working with children and young adults with autism
One way to introduce children with autism to first responders is to have a field trip to the fire station; liaising with local schools or parents to set this up. Before the children arrive there are some set-up issues you may want to consider to best avoid chances of a sencory overload and anything that might cause distress to the children. Use natural lighting when possible; leave station doors open and turn down radios and paging alerts; have a fire truck, police car, ambulance, and other emergency service vehicles available at the station.
When teachers, parents or carers arrive, have them fill out a form about the children including their address. This information can be forwarded to your local dispatch. They can mark the address in their system with a note that an individual at this address has autism. Instruct teachers, parent or carers what their role is in an emergency situation.
Give the child or children the opportunity to explore the real representations of emergency vehicles in person during safe periods of time. Avoid using lights and sirens where possible.
The skills you learned on how to effectively communicate and interact with an individual with autism will come into play. Be patient; ask simple direct questions; no slang; be ready to wait up to 10 seconds for a response; don't always expect direct eye contact. If you get no response to a question, try re-phrasing it.
Help and guide the child through exploring the various components of the vehicles. Avoid slamming cab and compartment doors. Demonstrate possible emergency scenarios within this ‘safe’ situation.
Let them experience a firefighter in full gear. The uniform or turn-out gear can be distracting and might seem frightening to some individuals. Recognising and learning that the person behind the uniform or safety equipment is a friend may help when they are approached by the first responder in an emergency situation. Be careful not to let low air alarms on your self caontained breathing apparatus (SCBA) go off or for air to escape. These loud and unexpected sounds can cause discomfort or a possible sensory overload to an individual with autism (Daniel and Sokol, 2012).
Summary
In closing, being ready and knowing how to handle these situations is the only thing you can do when interacting with an individual with autism. We invite all first responders to take the pre-test at www.Prevent-Educate.org to see just how prepared you really are. Remember, their lives are in your hands.