BY DWIGHT GOOD
Last fall, my wife, a resource teacher, began working toward her autism credential. Night after night, she shared fascinating information with me about autism on her long drive home from school. It was like being in class but without the homework. As the days wore on, I began to realize that everything I knew about autism I had learned in about a month. Working at a busy fire station, I began to notice things about certain people and certain houses. These things had previously escaped my attention, or I had chalked them up to human oddity. Now, suddenly, they had meaning and significance. I began to modify the way I approached certain people and how I handled certain calls. I applied new information to familiar situations and saw some definite benefits. I also was developing the idea that our field personnel might benefit from some training on the subject. Here’s what I learned along the way.
STATS ON AUTISM SPECTRUM DISORDER (ASD)
This disorder affects one in nine families in California. It has an annual growth rate of more than 12 percent. The population of adults with ASD will triple in the next decade.1-2 The shift away from institutionalization means that many people with ASD will transition into independent living after their 18th birthday.3 We are about to see the largest adult population of people with ASD in history, and the emergency services sector is generally unprepared for the special needs and challenges that this group will present.
Statistically speaking, people with ASD have seven times more contact with emergency services responders than the average person.4 Because ASD has no associated physical characteristics, emergency responders often attribute the inappropriate behavior or underdeveloped communications skills of these patients to drug use or poor parenting. (3)5
A textbook definition of autism would include phrases like “neurological disorder characterized by severe and pervasive deficits in social skills and communication, restricted patterns of behavior, attention deficits, and often, mental retardation” and “signs include self-injurious behaviors, aggressiveness, hyperactivity, and compulsive ritualistic behavior.”6
There are three general categories of ASD:7
Autistic Disorder (also called “classic” autism): This is what most people think of when they hear the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability. (7)
Asperger Syndrome: These individuals usually have milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability. (7)
Pervasive Developmental Disorder– Not Otherwise Specified (PDD-NOS, also called “atypical autism”): Some people who meet some of the criteria for autistic disorder or Asperger syndrome may be diagnosed with PDD-NOS. The symptoms are usually fewer and milder than those for autistic disorder. They might cause only social and communication challenges, for example. (7)
People with ASD may have extremely high pain thresholds, avoid physical contact, respond inappropriately to loud noises, and fail to recognize dangerous situations. These tendencies place people with ASD at a much higher-than-average risk of death or injury. Further, these patients may be unaware of their injuries or unable to communicate effectively, and they may fight or flee from rescuers.8
FIRE SERVICE-RELATED CHALLENGES
Smoke Alarms
A third of families with children with ASD included in one study reported that smoke alarm activations caused sensory overload issues for their children. Another third believed that their child would not respond to a sounding smoke alarm. Nearly half were concerned that their child would hide instead of move toward safety during a fire. A quarter were concerned that their child would flee and continue to run. Roughly half of the families did not have a home fire escape plan in place; less than a third of those who did reported that they practiced the plan at least annually.9
Children with ASD often have increased sensitivities to auditory, tactile, and visual stimuli.10 These heightened sensitivities place them under constant stress, which complicates matters for them during crises.11-12 Overstimulation is a significant problem for children with ASD.13
Pain or stress may lead the person with ASD to try to escape or dart around without any particular direction and misdirected aggression. They may talk to themselves, talk loudly, rock or focus on a particular part of the body, and engage in self-injurious behavior or attention-seeking behavior or tantrums. None of these activities are conducive to self-preservation. (11)14
Locks/Forcible Entry
In one study, 70 percent of parents caring for a child with ASD reported that they could not leave their child home alone; almost three-quarters of the respondents reported that they use alternative locking and latching devices on doors and windows to prevent their child from escaping. (9) This is a significant concern for the majority of families caring for a child with ASD.15 Forcible entry is often necessary in structure fires where people with ASD live or are cared for, and these occupants are likely to hide from rescuers or become combative in situations where they must be moved quickly.16
Medical Care
A survey of families and caregivers of people with ASD I conducted revealed that most interactions between families and children with ASD and emergency services workers involved emergency medical care. Complaints included the repeated questioning of a nonverbal patient and the general impatience demonstrated by emergency services workers. Concerns about extreme sensitivity to sound and fear of new surroundings were also raised. Emergency services workers were urged to include the parents and caregivers in the delivery of services. One parent cautioned that children with ASD will often become more anxious if people around them are impatient or frustrated.
I have found that most parents and caregivers of people with ASD are extremely protective of their charge. Preventing unnecessary stress on the person with ASD seems to be in the best interests of all involved; emergency services workers generally benefit by including these parents and caregivers in their interactions with the person with ASD. I believe these parents and caregivers generally make a concerted effort to avoid calling 911 to minimize the stress on their charge.
Sending in responders who have not been trained in ASD to mitigate emergencies involving people with ASD creates potential problems in the areas of responder safety, civilian safety, and good old-fashioned customer service. (16) Recognizing stress in the person with ASD is essential to managing the situation. (11)
The Americans with Disabilities Act (ADA) provides a few more good reasons for educating our emergency services workers in the special needs of people with disabilities. A basic principle of the ADA is that people with disabilities must be provided with an equally effective opportunity to participate in, or benefit from, a public entity’s aids, benefits, and services.
SERVICES’ TRAINING AND EDUCATION
Autism qualifies as a “physical or mental impairment that substantially limits one or more major life functions.” There are pockets of knowledge out there about autism in the emergency services arena. Several states and local jurisdictions have adopted some type of standardized training for their emergency responders; however, although there are lots of bright ideas, there are plenty of duplicated efforts, and there is no standardization. Every police officer, firefighter, and EMT should be trained to the awareness level on the special needs of people with ASD.
Several groups and parties across the United States offer training programs that make emergency responders aware of the signs and behavioral risks associated with ASD and provide effective approaches for working with these patients. Most of these programs are offered for a fee. This can be a problem today when the operating budgets of most emergency services agencies have been decreased, some quite dramatically, in response to the recent economic downturn, leaving little room for new expenditures in training.
The simplest way to reach all of these responders would be to add a module to the basic medical and first aid training curriculum. The curriculum should also be included as an option for continuing education (CE) credits for emergency medical technicians and paramedics. This is important information, and the most effective way to get it out to those in the field would be to make sure that the education is free and the information is widely accessible. Educating emergency responders on the signs, behavioral risks, and special needs associated with ASD will reduce the risk of negative experiences between families and children with autism and emergency services workers.
PUBLIC EDUCATION
A teacher at a school for students with disabilities ranging from mild to severe prepared her students for a simple school fire drill. For six weeks, she walked her students through the process an average of 20 minutes a day, every day. For severely disabled children, any disruption to the classroom routine can trigger anxiety and stress responses that last for hours or days. She presented the fire drill as a “special fire drill field trip.” The students were told that a “loud noise and a flashing light” would tell them when it was time to leave. They were to go to her desk and take a “fire ticket,” (a yellow slip of paper) and assemble at the door for their “special fire drill field trip.” Despite the significant amount of preparation, the students were able to carry out a fire drill successfully only with assistance, and the teacher said she did not believe they would be able to do so without assistance.17
I observed a fire drill at the same school. Because of an alarm system malfunction, the teachers were notified only by radio. Even without the horns and strobes, the majority of students had some difficulty evacuating. The most severely disabled students were visibly upset by the disruption and needed one-on-one assistance from school staff. According to staff members, many of these students would be unable to resume normal school activities at least for the remainder of the day.18
Prior to and following the fire drill, I conducted a series of fire safety presentations at the same school. In each presentation, I introduced myself as a firefighter, explained the job of a firefighter, and donned full structural turnout gear and self-contained breathing apparatus. In each class, one or two students were apparently disturbed by the odor of my structural turnout gear, which was clean but not new. A few students were so overwhelmed by the sights, sounds, smells, and disruption that they simply tuned out during the presentation. I made a conscious effort to speak and move slowly during the presentations and to explain what to expect before each step of the demonstration. Feedback from staff at the school indicated that this slow, deliberate method was highly desirable, although the lessons would have to be repeated frequently if they were to have any lasting effect. (17)
My observations during this visit supported the opinions offered in earlier meetings with the staff of the Special Education Department and Challenged Family Resource Center. Staff members emphasized that life safety lessons would have to be delivered in small increments and repeated frequently if they were to be effective. For example, the fire safety presentations I delivered would have to be repeated at least once a month to reduce students’ anxiety levels and foster real learning.19
There is very little information available on the effectiveness of programs for children with ASD. Their special learning disabilities are not addressed by traditional fire and life safety education programs. It is difficult for these children to generalize fire and life safety skills; the experts recommend that a combination of instruction, modeling, feedback, and reinforcement be used in the instructional approach.20 Our fire and life safety educators must work with the experts in austim to develop effective programs for this audience.
Almost two-thirds of the respondents in one study on families with children with ASD believed that visual aids or pictures were the most effective means of teaching fire safety; another third preferred videos. (9) Subject matter experts disagree with these approaches. Although video modeling can be used to teach specific skills or behaviors to children with ASD, the research does not indicate that the students will be able to apply the lessons learned in one application to actual events that differ from the scenarios or examples taught. (20)
Social stories and visual reminders are commonly used to teach children with ASD new concepts and skills, including fire safety (e.g., smoke alarms, fire drills), and visual reminders (e.g., a “do not touch the oven” sign) are often used to help the children remember what they are supposed to do or not do.21-22 (20)
The National Fire Protection Association offers the free social story “I Know My Fire Safety Plan” on its Web site. It was designed to teach children with ASD what to do when a smoke alarm sounds.23 I shared the link with the teachers and specialists I met during this project, and the feedback was highly favorable.
Fire and life safety educators must team up with local experts to ensure that the messages delivered are consistent, appropriate, and complementary. These messages must also be delivered to the families in their homes and perhaps frequently. Although this approach requires more effort than most of our public education programs, it also presents the greatest potential for reducing death, injury, and illness rates among members of a high-risk group. I recommend recruiting local advocates and parent volunteers from the autism community to help.
Members of this public education team should be carefully selected, and curriculum, lesson plans, format, and lesson delivery should be developed through partnerships with subject matter experts. The approach must be holistic: It will be necessary to involve family members and caregivers; address all aspects of life; and ensure that the messages received are consistent, complementary, and frequent.
PREVENTION
One-third of the respondents to the study of families of children with ASD reported using traditional audible smoke detectors in their homes, roughly a fifth reported using a digital voice message type of detector, and a few were using vibrating or shaker smoke alarms. (9) These figures are believable: Our campaign to get smoke alarms into residential dwellings has been largely successful. What interested me in this study was the mention of alternative alarm-notification devices. Hearing sensitivity appears to be a common concern for people with ASD.
In recognition of the concerns over hearing sensitivity, some suggest supplying children with ASD with earplugs to use during fire drills or with some tactile object that they can use to distract/comfort themselves as they carry out the fire escape plan.24 Others suggest modifying the audible alarms used in school fire drills to reduce the trauma or even removing these children from the classroom prior to scheduled fire drills.25 The use of fire tickets I described earlier appears to provide the tactile distraction recommended by McGowan and is the method I favor. Because the students do not get their fire tickets until the fire alarm sounds, we have not removed the element of surprise. Perhaps this approach should be incorporated into our Exit Drills in the Home (EDITH) presentations to the families of children with ASD.
In a Code Interpretation letter on the subject, the California State Fire Marshal’s Office26 defers the acceptance of alternative warning devices—such as those used in hospitals—to the authority having jurisdiction (AHJ). Some are recommending alternatives to the traditional audible smoke alarm for use in the autistic community; motion-type devices (e.g., shakers, buzzers, etc.) seem to be popular. (9) There are several good studies on the effectiveness of audible smoke alarms in waking children,27-28 and a few manufacturers are marketing special adaptive warning devices for the hearing impaired, but I was not able to find any studies on the effectiveness of these alternative alarm notification devices in children with ASD.
If such a device is used, it should be used in conjunction with traditional audible devices (located in other parts of the structure) or wired into a remote fire alarm monitoring station. Without research data, the AHJ may have difficulty determining what acceptable alternative means of notification might be. This issue is exacerbated by the use of alternative locks and latching devices in the home, and it demands attention.
Fire and building code professionals must work with families and caregivers of people with ASD to ensure that the risks of alternative locking and latching devices used to prevent escape are offset by installed fire alarm systems. These professionals must also familiarize themselves with the alternative notification devices desired by families and caregivers of people with ASD and work with advocacy groups to ensure that acceptable alternative means are identified and adopted for use in the built environment. Further research is needed to determine the effectiveness of alternative fire alarm notification devices for people with ASD.
References
1. ScienceDaily. (2009, January 11). California’s autism increase not due to better counting, diagnosis. Retrieved March 27, 2010, from Science News: http://www.sciencedaily.com/releases/2009/01/090108095429.htm.
2. Vismara, L. A. (2009, May 21). The demographics of autism in California: Overview and current status.Retrieved March 27, 2010, from http://www.commissions.leg.state.mn.us/asd/AutismCA.pdf.
3. Olejnik, L. (2004, June). Understanding autism: How to appropriately & safely approach, assess & manage autistic patients. JEMS , 56-61.
4. Martin, A. & Mims, T. (2009, April). Autism awareness for responders. Fire Engineering, 56-58.
5. Pinto, A. (2001). Physician, father of a child with ASD. (M. Nordberg, Interviewer). In Loyacono, T. (2001, June). Treating patients with autism. EMS, 78-83.
6. Schreibman, L. & Koegel, R. (2005). Training for parents of children with autism. In E. &. Hibbs, Psychosocial treatments for child and adolescent disorders: Empirically based strategies for clinical practice (pp. 600-624). Washington, D.C.: American Psychological Association.
7. Centers for Disease Control and Prevention (2010). Facts about ASDs. Retrieved November 22, 2010 from http://www.cdc.gov/ncbddd/autism/facts.html.
8. Davis, B. & Schunick, W. (2002). Dangerous encounters – Avoiding perilous situations with autism: A streetwise guide for all emergency responders, retailers, and parents. Philadelphia: Jessica Kingsley.
9. Russell, R. (2009). Fire prevention criteria on which to base an autism protection program. Emmitsburg, MD: National Fire Academy.
10. Murphy, P. C. (2008, July 8). Breaking down barriers: How EMS providers can communicate with autistic patients.Retrieved March 22, 2010, from EMSResponder.com: http://www.emsresponder.com/article/article.jsp?id=3232&siteSection=12.
11. Lawlis, F. (2010). The autism answer: Finding the compass through the current of chaos and destructive paths. Retrieved April 23, 2010, from MindBodySeries: https://www.mindbodyplan.com/autism/securemember/signup.php.
12. Ortiz, G. (2009, December 29). FIRE/EMS – Intractions with autistic patients. (Retrieved March 26, 2010, from Grappler’s Quest: http://www.grapplersquest.com/forums/fireems-interactions-autistic-patients.
13. Hergenrader, D, executive director, interview, 2010, May 18 and Hergenrader, S, chief executive, interview, 2010, May 18.
14. Cannata, W. (2007). Autism 101 for fire and rescue personnel. Retrieved March 26, 2010, from Autism Spectrum Disorder Foundation: http://www.autismspectrumdisorderfoundation.org/emergencypersonnel.html.
15. Autism Speaks. (2008). First 100 days kit. Retrieved March 27, 2010, from Autism Speaks: http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf.
16. Loyacono, T. (2001, June). Treating patients with autism. EMS, 78-83.
17. Title II Technical assistance manual. (n.d.). Retrieved from Americans with Disabilities Act: http://www.ada.gov/taman2.html#II-1.2000/.
18. Rzucidlo, S. & Cannata, W. (2007). Autism 101 for fire and rescue personnel.Retrieved March 26, 2010, from The Autism Spectrum Disorder Foundation: http://www.autismlink.com/pages/emergency_firerescue/.
19. Donnelly, N. (2010, April 16, May 18). Preschool Special Day Class Teacher. (D. Good, Interviewer); Gallegos, N. (2010, May 18). Early Start Family Resource Center Coordinator. (D. Good, Interviewer); Jones, L. A. (2010, May 18). Program specialist. (D. Good, Interviewer); Malang, S. (2010, April 18, May 18). Program Director. (D. Good, Interviewer).
20. Coston, S. (2010, April 14). Assistant Superintendent, Special Education Staff, Merced County Office of Education. (D. Good, Interviewer); Huffman, C. (2010, April 14). Program Coordinator. (D. Good, Interviewer); Rehling, J. (2010, April 14). Director, Challenged Family Resource Center. (D. Good, Interviewer);. Rivera, E. (2010, April 20). Education specialist. (D. Good, Interviewer); Teixeira, L. (2010, April 14). Behavior Analyist. (D. Good, Interviewer).
21. Crumrine, D. (2006). Teaching safety skills to children with Autism Spectrum Disorders: A comparison of strategies. Wichita: Wichita State University.
22. Autism Society of America. (2008, September 11). Safety in the home. Retrieved May 26, 2010, from Autism Society of America: http://www.autism-society.org/site/PageServer?pagename=life_fam_safety.
23. National Fire Protection Association. (2010). Autism. Retrieved May 18, 2010, from National Fire Protection Association: http://www.nfpa.org/itemDetail.asp?categoryID=4672&URL=Safety%20Information/For%20Consumers/People%20with%20disabilities/Autism/.
24 Morris, B. (n.d.). Social stories. Retrieved March 26, 2010, from Autism Spectrum Disorders: fact sheet: http://www.autism-help.org/communication-social-stories-autism.htm.
25. McGowan, T. (2009, August 26). Autism: Autism and fire drills.Retrieved May 26, 2010, from AllExperts: http://en.allexperts.com/q/Autism-1010/2009/8/Autism-fire-drills.htm.
26. California State Fire Marshal. (2007, March 29). Designated autism classrooms: Fire alarm strobes/speakers. Retrieved April 7, 2010, from Code intrepretations: http://osfm.fire.ca.gov/codeinterpretation/pdf/2006/06_098.pdf.
27. Grandin, T. (1998, January). Frequently asked questions about autism.Retrieved March 26, 2010, from Autism Research Institute: http://www.autism.com/autism/grandinfaq.htm.
28. Bruck, D. R. (2004). The effectiveness of different alarms in waking sleeping children.Melbourne, Australia: School of Psychology, Victoria University.
29 . Smith, G. S. (2006). Comparison of a personalized parent voice smoke alarm with a conventional residential tone smoke alarm for awakening children.Elk Grove Village, Il: American Academy of Pediatrics.
DWIGHT GOOD began his fire service career as a volunteer firefighter for the Mariposa County (CA) Fire Department. He is a fire apparatus engineer for Cal Fire in the Madera, Mariposa, Merced Ranger Unit. He has a bachelor’s degree from Empire State College and a master’s degree in science from Grand Canyon University.
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