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Fire departments are urged to educate first responders about how to best respond to an emergency situation involving an autistic individual.
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 researched 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.
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?
Kupietz found almost no existing research focused on autism and emergency response. He began his research by surveying three groups: fire department personnel, healthcare professionals who treated autistic children and parents and caregivers of autistic children. Kupietz included the survey results and recommended best practices for first responders in a paper titled, “Best Practices for Autism During Emergencies.” (You can read the paper at http://www.usfa.fema.gov/pdf/efop/efo46708.pdf; for a list of recommended best practices, see 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...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, but another may be attracted to the loud noise, he said.
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. Also, many autistic children wander. Efforts to locate them may be impeded by the fact that many will hide or not respond verbally when they hear calls from searchers.
Communicating directly with an autistic child can be difficult and frustrating for first responders. Many autistic children communicate visually rather than verbally. Many understand what a person is saying, but cannot answer.
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 to remain calm, be patient and use soft, calming tones.
In general, first responders should minimize physical contact with an autistic individual and be aware that many have sensory issues. 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.
One of the most enlightening aspects of Kupietz’s research resulted from interviews with parents of autistic children. None knew that they could bring children to a 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.
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 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.