Higher Education for the fire service: dealing with autism

On March 20, 2013, the U.S. Centers for Disease Control and Prevention (CDC) released a report stating that one in 50 (more than 1 million) U.S. schoolchildren are diagnosed with autism spectrum disorder (ASD). This is up substantially from a previous report, which found one in 88 U.S. children having ASD. While there remains some debate whether this higher occurrence rate is the result of more children having autism or is caused by changes in reporting methods, it is clear that autism is an increasingly common disorder throughout the country.

And first responders must take note.

Emergency responders must educate themselves about this disorder and learn how to adjust their response to situations that involve an autistic individual, said Dr. Kevin Kupietz, adjunct professor of Emergency and Disaster Management at American Military University in Manassas, VA, and a volunteer firefighter with the Roanoke Rapids Fire Department in North Carolina.

As part of his enrollment in the U.S. Fire Administration (USFA) Executive Fire Officer (EFO) program, Kupietz conducted an in-depth research project on best practices for emergency response to incidents involving autistic individuals. He found that statistically, an autistic individual is seven times more likely to need the service of emergency responders than a non-autistic individual. Therefore, as the number of autistic children and adults increases in the U.S., the greater the likelihood is that first responders will encounter an autistic individual during an emergency situation. Responders must understand the wide-ranging spectrum of the disorder and the best methods for responding to such incidents.

Kupietz’s goal with this research paper was to answer two primary questions:

1. What is being done in fire departments to prepare responders?

2. What are the best practices when dealing with autistic individuals in emergencies?

Kupietz, however, found there was almost no existing research focused on autism and emergency response. He began his research by surveying three groups of people: fire department personnel about their department’s effort helping autistic children, healthcare professionals who treated autistic children and parents and caregivers of autistic children. Kupietz included the results from these surveys, as well as recommended best practices for first responders and departments, in a research paper titled, “Best Practices for Autism During Emergencies.” (You can read the full paper at http://www.usfa.fema.gov/pdf/efop/efo46708.pdf; for a detailed list of recommended best practices, see the paper’s Appendix H.)

What is ASD?

According to the CDC, ASD is a set of complex neurodevelopment disorders. Children who have ASD display mild to severe impairments in social interaction and communication along with restricted, repetitive and stereotyped patterns of behaviors, interests and activities. During his research, Kupietz found that the majority of first responders had not received specific training about autism.

“There’s not enough information about specific disorders,” Kupietz said. “We put it all in a nutshell and treat them all the same and that could cause more issues in the long run than if we can learn about the different aspects of disorders, whether it’s down syndrome or autism or Alzheimer’s. There are different techniques for each one of them.”

Autism is an especially difficult disorder to train first responders about because the spectrum of ability differs greatly from individual to individual. For example, one autistic child may run away at the sound of a loud siren, whereas another autistic child may be attracted to the loud noise, he said. Similarly, there have been numerous cases of autistic children running back into a burning building because the scene outside is interpreted as too chaotic.

Common tendencies of autistic individuals

While it is difficult to generalize autistic behavior, there are a few commonly cited tendencies. One is an affinity for water, even when children cannot swim. Studies have found that autistic children are at a higher risk of drowning than non-autistic children. Many children are fearless when it comes to water and have little regard for the temperature or the depth. Kupietz cited several cases in his paper where autistic children had drowned.

Also, many autistic children tend to wander. Those children are at high risk of injury from their environment. Efforts to locate children who have wandered are further impeded by the fact that many will continue hiding, will not seek help and do not respond verbally when they hear calls from a search party. Some of the parents Kupietz interviewed said they had to install deadbolts on interior doors of their homes in order to keep their children from wandering.

Communication challenges

Whenever possible, first responders should work directly with a parent or caregiver to learn how to best interact with the child. Many autistic children will only respond to their caregivers and are often frightened by unfamiliar people.

Communicating directly with an autistic child can be extremely difficult and frustrating for first responders. Many autistic children communicate visually rather than verbally. Many can understand what a person is saying, but are unable to communicate in return.

Kupietz emphasized that even if it appears that an autistic child is not paying attention (many do not make eye contact) or if they do not seem to understand, first responders should continue communicating by speaking clearly and slowly and using literal, direct language. It is also important for first responders to remain calm, be patient and use soft, calming tones. Responders should also provide the individual plenty of time to process information and answer.

Making adjustments to response

In general, first responders should minimize their physical contact with an autistic individual and be aware that many have sensory issues where even common things, like the application of bandages, may cause distress. If a physical exam is necessary, Kupietz recommends responders start at extremities and work toward the trunk and head to gain the trust of an individual. Using a favorite toy or item can also provide comfort during such interactions. It is also important to note that many autistic individuals have higher than normal thresholds for pain, which can mask serious medical issues, Kupietz found.

For various reasons, many autistic individuals have underdeveloped chest muscles, so if they are restrained or held in place too long, they can suffer from mechanical asphyxiation. Kupietz warns that first responders should not underestimate the strength or determination of autistic children. Often, the more they are restrained, the harder they fight because they do not understand the situation.

Responders should minimize stimulation as much as possible at a scene and limit the use of sirens, horns and lights as well as reduce the number of responders present. If an autistic child needs to be taken to a shelter, first responders should do their best to provide the child with his or her own space. Even marking off an area with chairs can help the child establish such boundaries. Headphones can also help the child remain calm during chaotic or loud situations.

One of the most enlightening aspects of Kupietz’s research (and something he plans to focus on in future research projects) resulted from his direct interviews with parents of autistic children. Every parent he interviewed was unaware that they could bring their child to the firehouse and introduce them to firefighters. It is important to familiarize autistic children with first responders. Showing them response equipment, letting them see firefighters in full gear and talking to them about what firefighters do, can help familiarize them with an emergency response. Taking the time to do this could potentially alleviate the newness and fear during an emergency situation and help an autistic child feel more comfortable with responders.

How technology can help

One of the biggest issues is getting autistic individuals to respond appropriately to an emergency situation. For example, many autistic children are frightened by traditional fire alarms and rather than exit a building, will choose to hide. During his research, Kupietz interviewed several parents who had installed alarm systems capable of recording the parent’s voice. This recording not only alerted the child to a situation, but also instructed them how to respond and react.

To address the wandering issue, many parents equipped autistic children with GPS devices to help locate them. Parents also used jewelry, temporary tattoos, cards or tags stitched in clothing to alert others that the child is autistic.

The bottom line: do not ignore autism

The recent CDC report demonstrates that autism is a disorder that is not diminishing. Department leadership must take appropriate action to educate first responders about how to best respond to an emergency situation involving an autistic individual. Using best practice guidelines and the information found in Kupietz’s research paper can help departments be proactive about their response to situations involving autistic individuals before the situation arises.

The report by the CDC’s National Center for Health Statistics, “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011-2012,” is available at http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf.