Understanding autism

Editor’s Note: Ben Wilson, captain of fire prevention at the Surrey Fire Service in British Columbia, is the father of a child with autism. He wrote this article in hopes of raising awareness of the issue amongst those in the fire service. Wilson has been developing and delivering autism awareness training to first responders in Western Canada since 2015. He co-founded the First Responder Advisory Committee at the Canucks Autism Network.

Imagine you are responding to a motor vehicle accident. Upon arrival, the driver is unresponsive. Witnesses report that a passenger exited the vehicle and was seen walking down the highway.

You spot the passenger, a 20-something male. He appears to be standing in traffic, waving his hands and rocking back and forth, mumbling to himself. When you ask him if he needs help, he ignores you. You notice blood running freely from a large laceration on his scalp. When you attempt to assist him, he screams and tries to run from the scene.

This patient could be suffering from a traumatic head injury. He could be intoxicated. He could be suffering from hypoglycemia. Or, it could be something else.

Autism Spectrum Disorder (ASD), commonly referred to as autism, is a complex neuro developmental disorder characterized by difficulties in social interaction, verbal and nonverbal communication, and restricted and repetitive behaviour. The most recent data from the Public Health Agency of Canada in 2015 shows that one in 66 children are diagnosed with autism.

Here are the statistics:

• Boys are four times more likely to be diagnosed with autism than girls (Public Health Agency of Canada, 2015).
• 40 per cent of children with autism do not speak (www.nationalautismassociation.org)
• 25 per cent of individuals with autism are nonverbal (www.canucksautism.ca)
• 49 per cent of children with autism wander from a safe environment (www.nationalautismassociation.org)
• Between 2009 and 2011, accidental drowning accounted for 91 per cent of deaths in children with autism, subsequent to wandering (CDC, 2012)
• Autism has a large impact in our communities, as one in 17 grandparents have a grandchild with autism
• A first responder is seven times more likely to come into contact with an individual with autism than the average person (Sokol, J.M., 2011)

Autism is an invisible disorder. There aren’t any recognizable physical traits to alert firefighters that a person may have autism. There are many associated disorders that may accompany autism such as seizure disorders, pica, sleeping disorders, sensory processing disorders, and ADD, ODD, ADHD, etc.

Autism is a vast spectrum and individuals with autism, just like neurotypical individuals, have different strengths and weaknesses. As Dr. Stephen Shore said, it is important to remember, “If you’ve met a person with autism, you’ve met one person with autism.”

The following are some characteristics of autism.

• Deficits in social-emotional reciprocity: Individuals with autism will have difficulty maintaining back and forth conversation and exhibit reduced interests and emotions. A great example of this behaviour is Jim Parsons’s character, Sheldon Cooper, from The Big Bang Theory.
• Deficits in nonverbal communicative behaviours: Individuals with autism may not understand body language, facial expressions, sarcasm, etc.
• Deficits in speech, ranging from no speech to typical speech: Individuals with autism may have difficulties in speech, but it doesn’t mean that they cannot communicate through other mediums such as a pen and paper, sign language, or a speech-aid like an iPad.
• Excessive adherence to routines, ritualized patterns and excessive resistance to change: Individuals with autism may experience stress when their schedule changes or when something is new.
• Highly restricted and fixated interests: Individuals with autism may have strong attachments to specific objects, very strong “special interests,” or difficulty changing topics.
• Hyper-reactivity or hypo-reactivity to sensory input: Individuals with autism may have adverse responses to lights, sounds, textures, smells, pain, etc.
• Self-harming behaviour: Individuals with autism may exhibit self-harming behaviour such as head banging, punching and biting as a coping mechanism to manage stress or sensory overload.

In the fire service, one of our primary functions is patient care. Unfortunately, our foundational training does not provide us with the skills or knowledge to deliver the best care that we can to a person with autism. In fact, it is arguable that our protocols are counterproductive and will likely escalate the behaviours of the individual and negatively impact the outcome of the incident. As firefighters, we need the tools to deliver care while managing the different needs of a person with autism in an effective, efficient, and compassionate manner.

Firefighters should implement the following key strategies when responding to an incident involving a person with autism.

• Listen to the parents and caregivers: They know the individual best. If appropriate, administer and direct patient care through them, especially hands-on interaction.
• Reduce sensory inputs: Evaluate the scene, eliminate unnecessary stimuli such as flashing lights, sirens, noisy diesel engines, and people. Reduce the number of first responders caring for the patient to a minimum. Move the patient to a quiet and isolated space such as bedroom or back of an ambulance. Wrapping the patient in a blanket may reduce stress and increase a sense of security.
• Front-loading: Tell the patient exactly what you are going to do and how it’s going to feel before you do it.
• Redirection: Focusing on a patient’s interests can help calm and distract the individual from a situation that is causing stress.
• Take your time: An incident involving a person with autism is going to require more time to resolve. Be patient and be empathetic. You may have to take breaks. If you rush the incident or force patient care, the situation will escalate.
• Search: If you are involved in a search for a person with autism, search the most dangerous places first. Search nearby water sources first, then railway tracks/major roadways and known runaway locations. In the home, there is likely a familiar place the individual retreats to.

If a person is alone and his or her behaviour is atypical, be on the lookout for the characteristics of autism. Look for a medic alert bracelet or jewelry that is shaped like a puzzle piece, which is the international symbol of autism. Some homes may have a puzzle-shaped sticker on the front to alert firefighters that a person with autism resides in the residence. In motor vehicle incidents you may be able to locate alert information on seatbelts or car seats.

An individual with autism may have an escalated episode as a result of stress related to an emergency incident. The behaviour will be similar to a fight-or-flight response. The individual will try to run away or, if confined, will lash out physically. For firefighters, it is important to monitor and manage the stress level of the patient to prevent an escalated episode from occurring.

Individuals with autism can have under-developed trunk muscles and be subject to positional asphyxiation if left lying face down. This often occurs during police incidents when an individual is handcuffed. During any incident, ensure the individuals who are unconscious or detained are left in the recovery position.

The Canucks Autism Network has developed a free autism awareness training program for first responders available at https://elearn.canucksautism.ca. It’s approximately one hour long, perfect for night training, available online, and can easily be distributed to all members. Additional resources are also available at https://www.canucksautism.ca/awareness-training/first-responders/.

Another great resource is the Big Red Safety Tool Kit developed by the National Autism Association and is available at no cost from www.nationalautismassociation.org. It may be beneficial to keep a copy of this resource on fire apparatus.

April is Autism Awareness Month. Firefighters can engage with the autism organizations in your community, such as the Canucks Autism Network, as the organization may have resources to assist you, or can direct you to an organization that does. Champion autism awareness training in your fire department. We can be better. Engage in dialogue with colleagues about autism. And, organize a fire department open house for persons with autism and dispel the mystery about autism for members in your organization. As an added benefit, familiarization with the local fire department can alleviate a significant amount of stress that a person with autism may experience during an emergency incident.

Ben Wilson has 14 years of experience in the fire service in suppression, training, public education, prevention and investigation. If you have any questions or are interested in providing awareness training about autism to your department, contact Ben at benlwilson@gmail.com.