You are dispatched for a domestic dispute and instructed to stage until law enforcement secures the scene, as this is an individual known to have behavioral issues associated with autism.
Once the scene is clear, you enter the home and notice locks high above an adult’s arm reach on all the doors, which seems like a fire hazard.
A 13-year-old male is in his underwear, bleeding from his arm after breaking a glass door during an argument with his mother. The boy is pacing to and fro.
An officer decides to restrain the boy so your team can provide care, but he only becomes more agitated and aggressive. He ends up breaking away from the officer and runs out the broken door.
Defining the Need
Compared to children without special needs, children with special needs are more likely to come into contact with first responders, more at risk for injury and more likely to be victims of violence.1 Autism spectrum disorder (ASD) is a specific diagnosis for children with special needs that requires in-depth consideration because the social and behavioral challenges these children demonstrate put them at increased risk for injury and abuse.2
The CDC reports that one in 68 children is now diagnosed with ASD; in 2000 that rate was one in 150.3 Taking these numbers into consideration, it becomes clear that first responders need to have training about special-needs individuals and the specific needs of individuals with ASD.
It is critical that first responders understand that depression and anxiety often manifest as anger and aggression in men and boys.2 Males experiencing a crisis may become aggressive and angry during times of high stress and distress, meaning there is an increased risk for injurious behaviors toward themselves and others.
Reports of negative encounters between first responders and individuals with autism have been in the news recently. Better understanding of the influences that impact negative encounters with individuals with autism in emergency situations can provide responders with the perspective needed to handle these calls safely for everyone.
First, the general population is constantly aging, meaning a 5-year-old with ASD is going to become a 21-year-old with ASD. If a young child on the autism spectrum does not receive the support services required to increase functional independence and social awareness, they have the potential to become an aggressive young adult who does not appear to have a physical disability, which increases the risk for conflict within society.
Second, it is important to understand that ASD and other mental health disorders do not cause individuals to commit heinous and violent crimes. All underlying conditions and risks (both environmental and biological) should be identified prior to attributing violent behavior to a specific diagnosis. An individual who is predisposed to mental health disorders through genetic makeup is more at risk of falling into self-destructive, self-medicating and risk-taking behaviors than an individual who has no family history of mental health disorders.
However, an individual who lacks genetic risk factors but grows up in an abusive and unsafe environment may demonstrate similar self-destructive, self-medicating and risk-taking behaviors to escape their psychological environmental stressors. Overall, increased knowledge among first responders about individuals with ASD and other mental illnesses may help decrease the occurrence of negative encounters.
Designing a Program
To address the needs identified above, leaders in Shenandoah County, Va., in 2009 initiated an educational program for first responders interacting with individuals with autism. Shenandoah County is a rural community that relies on both paid and volunteer fire and rescue services.
Individuals who participated in the educational training were provided with pre- and post-surveys to determine their level of comfort working with individuals with autism and assess basic knowledge regarding the characteristics of the diagnosis. See a portion of the pre-survey in Table 1.
Following the initial training program, it became apparent that varying participant background education levels were a significant barrier. Some first responders had only high school educations, while others had master’s degrees.
Some individuals came to the class with a strong understanding of autism, while others were not as familiar with the diagnosis. The first responder autism training program was then modified to ensure a basic understanding at all levels of education for both fire and rescue personnel.
The instructor-driven program included the following components:
General characteristics of the autism spectrum, including no real fear of danger; inappropriate laughing or giggling; not responding to his or her name; over- or undersensitivity to pain; may dislike physical touch; may avoid eye contact; echoing words and phrases; insisting on keeping routine/keeping things the same; challenges expressing needs; using gestures as opposed to words; difficulty interacting with others; preferring to be alone.
How characteristics of ASD can increase the danger of an emergency situation: An individual who has no fear of danger may not realize safety limits, an individual who does not make eye contact may be perceived as avoiding something, and an individual who echoes words and phrases may be perceived as mimicking. Issues with social interactions and communication challenges that are part of autism can create a barrier for providing care during an emergency.
Knowledge that autism is a spectrum disorder, meaning no two individuals will present the same characteristics. Every individual will demonstrate specific characteristics that may have more of an impact on function than others. Being a spectrum means some individuals will be highly independent while others depend totally on caregivers.
Providing an understanding that the home environment of an individual with ASD—what parents go through to keep kids safe—isn’t always the safest option. Parents do the best they can to keep children safe; however, at times a first responder may see locks on exit doors that children cannot open in the home of a child who wanders—this would be a major safety concern and requires parent education to improve safety.
First responders may be the key to helping parents connect with social and support services that can help improve safety within their environment.
Steps to provide care while meeting needs of an individual with ASD. First responders may need to demonstrate what they’re going to do on another individual to help someone with autism understand what’s going to happen. Use of words such as take should be limited, as individuals with autism are quite literal and may believe something will be taken from them. Allowing caregivers to remain with the individual as long as possible may also help prevent increased behaviors and improve communication.
Understanding risks for elopement and being drawn to water. Many individuals with autism will run when faced with a challenge or uncomfortable situation. Many children with autism have little fear of water but often lack the ability to swim, putting them at risk for drowning.
Understanding how to best de-escalate a situation and keep a crisis from becoming confrontational while still providing care. Sometimes individuals on the spectrum will go into a behavioral mode that does not allow for de-escalation; these individuals may need to be provided space to experience their behaviors and ensure the safety of others. Although it may take time for the individual to calm, fatigue will set in, and the individual will then be able to be approached safely. Allowing individuals on the spectrum time to process the information/instructions provided will help prevent increased behaviors, as will allowing them to perform behaviors they find calming—for example, rocking, humming or hand motions. Permitting an individual to look away and not make eye contact will also help reduce stress and anxiety with the situation, along with allowing caregivers or an important object/toy to remain with the individual.
How to help families connect with first responders before an emergency occurs. Encourage families to send an updated information page to the dispatch center with a recent picture, any allergies, likes and dislikes, and if they know they have a child prone to elopement. Also encourage the use of GPS tracking devices for individuals who are an elopement risk.
Opportunities for community outreach. Encourage families to attend National Night Out and other community events where individuals with autism might be provided the opportunity to meet first responders and see equipment outside an emergency situation.
The original phase of this 2009 study focused on learned content with a pretest (including true/false, multiple-choice and problem-based learning questions) to demonstrate general knowledge about autism. Following completion of the presentation, participants were then provided the same questions in a post-test to assess any changes in the number of correct responses. In addition, participants were asked to rate their level of comfort with the diagnosis of ASD using a Likert scale (0–10, with 0 being very uncomfortable and 10 being very comfortable with the diagnosis) in both the pre- and post-tests. Summary test results collected from 50 participants (fire and rescue personnel from Shenandoah County) are in Table 2.
While the results were not statistically significant due to the limited number of participants, the difference between pre- and post-test responses demonstrated a general improvement in knowledge and increase in responders’ comfort with the diagnosis of ASD. Although the sample was limited to individuals from one county and included both paid and volunteer staff, the gain in reported level of comfort and reduction in the number of incorrect questions demonstrates the benefits of training for first responders.
The Second Phase
Over a number of years, students from Shenandoah University have continued to assist in research around implementing this program to fire and rescue agencies to better identify learning needs and gaps within the program.
The second phase of the study, looking to measure changes in training participant empathy, was conducted in 2010 and 2011. It sought to identify an increase in knowledge measured through a pre- and post-test composed of multiple-choice, true/false and problem-based questions.
This phase of the study also looked at self-perceived empathy using a Likert scale (0–10 ranking) to allow participants to rate their own level of empathy for individuals with the ASD diagnosis. The third aspect investigated by the study was also participants’ self-perceived ability to identify an individual with autism, which was again measured using a Likert scale. The final measurement assessed was self-perceived ability to successfully perform job duties during a call for someone with autism. Participants demonstrated an increase in perceived confidence in this ability.
Participants in this second phase of the study included 45 paid fire and rescue personnel from Shenandoah County. Thirty-five participants were male and 10 were female. As with Phase I, the educational background of participants ranged from high school diploma to master’s degree.
The results for the second phase of the study looking at change scores can be found in Table 3.
This study also considered changes in scores pre- and post-test. Although the generalizability of this research is limited due to the small sample size and because the study was limited to one county agency, the results demonstrate an increase in all target areas, including increased knowledge about autism, self-reported empathy, self-perceived ability to identify characteristics of autism and self-perceived confidence to perform job duties following completion of the training program. The results of this study then opened the door for a third study to identify ways to improve first responder interaction with individuals with ASD during emergency situations.
The Third Phase
In 2011 and 2012, a third study phase was conducted to determine whether adding role-play to the education training program would increase change scores demonstrating knowledge gained and improve understanding about individuals with autism.
First responders from Shenandoah County participated in the autism education course and were provided a pretest, an immediate post-test and a three-week follow-up post-test. Approximately half of the 23 participants were excused after the training program to take the post-test, while the other half took part in a role-play activity followed by a post-test.
The role-play activity involved an injured child with autism, a frantic parent and a three-person rescue team. Individuals from the class played the first responders, mother and child, and the remaining individuals in the class were in the audience and provided input into decision-making. As the results in Table 4 indicate, adding role-play did not result in a significant increase in change scores in relation to participant assessment scores.
As this was only one sample, it is impossible to make generalizations regarding this data. Further study is warranted to determine the true impact of role-play on adult learning for first responders in relation to this specific educational program. The unique job conditions and duties of fire and rescue personnel must be considered when designing and implementing an educational program.
The use of didactic instruction from a structured lecture demonstrates the ability to increase the comfort level of fire and rescue personnel in assisting individuals with ASD. However, further study is warranted to better understand which teaching techniques provide the most beneficial learning experiences.
Consider again the scenario at the beginning of this article. Had officers allowed the boy to continue to pace, he would likely have been able to self-regulate through calming techniques and reduce his anxiety to a level where care could be provided. Looking even deeper, the officers might have found that the 13-year-old did not want to get dressed because the tag in the shirt his mother wanted him to wear was bothering him.
Although this seems like a major overreaction to the outside observer, had the officers understood the patient’s triggers and calming techniques, they likely could have avoided this individual’s elopement.
Xiang H, Stallones L, Chen G, et al. Nonfatal injuries among U.S. children with disabling conditions. Am J Public Health, 2005 Nov; 95(11): 1,970–5.
Sinclair SA, Xiang H. Injuries among U.S. children with different types of disabilities. Am J Public Health, 2008 Aug; 98(8): 1,510–6.
Centers for Disease Control and Prevention. Autism Spectrum Disorder (ASD): Data & Statistics. http://www.startribune.com/paramedic-dies-when-ambulance-hits-stalled-semi-on-i-694/450238853/.
Table 1: First Responder Autism Education Program Pre-Survey Excerpt
True/false questions—circle correct response
1. You can tell someone has autism by looking at them.
2. There is a genetic test for diagnosing autism.
3. Individuals with autism often don’t understand danger or death, and some have decreased pain sensation.
4. There is a cure for autism.
5. Autism is a spectrum of disorders, and no two individuals with autism will have the same level of function.
6. Only children have autism.
7. Only males have autism.
8. Autism only affects Caucasians.
Multiple-choice question—circle all that apply
Circle the traits of autism/autistic tendencies:
Limited eye contact
Decreased communication skills
Poor social skills
Upset by change
Likes high places
Poor impulse control
Poor safety awareness
Needs a schedule
Dislikes loud noise
Reacts to light
Dislikes food textures
Doesn’t respond to name
Doesn’t respond when spoken to
Multiple-choice question—select the single best answer
You are called to the scene of a neighborhood disturbance. You arrive on location and find a 9-year-old boy who is not wearing any clothes and running back and forth across the street. You call out to the child to see if he needs help, and he ignores you. What should you do?
a) Call out louder.
b) Slowly approach the child, get to where he can see you and wait for him to look at you.
c) Wait a moment and give the child a chance to respond.
d) Tell the child he’s going to be in trouble if he doesn’t stop running.
Opinion questions—please rate the following statements
If you were called to an incident and told it involved a child with autism, how would rate your comfort level? Mark on the scale below where you believe you would rate yourself.
[0 = very uncomfortable, not sure what to expect; 10 = very comfortable, no concerns]
Table 2: Phase I Study Results
Measured Component Score
Number of incorrect questions pretest 3.28
Number of incorrect questions post-test 1.82
Level of comfort pretest 4.41
Level of comfort post-test 6.67
Table 3: Phase II Study Results
Measured Component Score
Pretest number correct 22.91
Post-test number correct 24.02
Pretest empathy, self-reported rating 3.78
Post-test empathy, self-reported rating 6.96
Pretest self-perceived ability to identify characteristics of autism 5.09
Post-test self-perceived ability to identify characteristics of autism 6.91
Pretest confidence, self-rated ability to perform job duties 5.98
Post-test confidence, self-rated ability to perform job duties 7.31
Table 4: Phase III Study Results
Measured Component Score
Pretest control group assessment score 367
Pretest role-play group assessment score 331
Post-test control group assessment score 464
Post-test role-play group assessment score 425
Overall increase, control group 97
Overall increase, role-play group 94
Alicia Lutman, OTD, MS, OTR/L, ATC, is an associate professor in the Division of Occupational Therapy at Shenandoah University in Winchester, Va. She has been educating first responders about providing care for individuals with autism and mental health conditions during emergency situations since 2009.