While safety is important to everyone, it is a major concern among many people with autism spectrum disorder (ASD) as the complex communication, social, sensory and behavioral challenges associated with ASD may place people with this disorder at increased risk of injury or death. Indeed, research indicates that nearly half of children with ASD have eloped from a safe place with 26% having gone missing long enough to cause concern and be in danger of drowning or being injured by a vehicle. Yet, only half of parents of children with ASD report receiving guidance on preventing or addressing elopement behaviors (Anderson, Law, Daniels, et al., 2012). While the disorder is felt to not affect life expectancy, Danish researchers found that the ASD mortality rate may be twice as high as the general population (Mouridsen, Bronnum-Hansen, Rich, et al., 2008). Shavelle and colleagues (2001) found that accidents from suffocation or drowning may contribute to elevated death rates among people with ASD. People with ASD may also experience other safety concerns such as increased risk of victimization due to bullying or harassment (Carter, 2009), sexual abuse (Sullivan & Knutson, 2000), or injury resulting from restraint or seclusion (Kutz, 2009).
Some common reasons for ASD-related emergency calls include events where the person has escaped from a caregiver, home or school; wandered to an unsafe place including attempting to enter nearby buildings; caregiver actions being misinterpreted; a person with unusual behavior being interpreted as suspicious, threatening or on drugs; rearranging store materials being interpreted as shoplifting; or when a person displays escalating behaviors and the caller is unaware of the autism (Debbault & Legacy, 2004). It should be noted that accuracy of statistics regarding safety issues and people with ASD may be in question since data recorded in emergencies may not include whether a perpetrator or victim has a disability such as ASD. Clinical use of the medical diagnostic code for wandering (V40.31) is one way to promote appropriate treatment planning and accuracy of tracking data.
Characteristics of ASD and Relationship to Safety
ASD may impact safety in a myriad of ways. Social communication deficits associated with the disorder may affect the ability of the person to effectively communicate concerns or understand verbal directions. Nonverbal communication including body language and tone may be misunderstood. For example, commands such as “stop” or “look out” may be misinterpreted, resulting in reduced response to community officials and emergency warnings. Social challenges may impact recognition of harassment or bullying and effective handling of such situations. Restricted interests and repetitive behaviors may also place a person with ASD at increased risk. For example, a person with ASD may be drawn to water or fire. The person may also consider a place or object comforting and not recognize that their “safe place” has become hazardous. Insistence on sameness may lead to meltdowns and increase in physical aggression or self-injurious behaviors during transitions between tasks or when routines are changed. Sensory issues may lead a person with ASD to be hyper-sensitive to temperature, pain, sound, light, texture, or crowds. This may result in challenging behavior as an attempt to avoid the stimuli. Hypo-sensitivity may result in seeking out stimuli as demonstrated by reduced sensation of pain, recognition of injury or ability to gauge rough from gentle touch. Co-morbid conditions that affect some people with ASD may further impact on safety. For example, cognitive impairment may affect ability to recognize safety risks and to follow directions. Motor difficulties may reduce balance and coordination, placing the person at increased risk of injury. Feeding issues may affect regulation of pace or amount of food, resulting in choking or vomiting. Pica may also be a concern. Seizure disorders may increase risk of injury or death. Sleep difficulties common among those with ASD may result in the person with ASD being awake and unsupervised when others in the residence are asleep. Increased activity level may contribute to elopement, darting into traffic, or having difficulty remaining seated during travel.
Features often associated with emergency situations such as alarms, flashing lights, crowds, and commotion may trigger increased agitation among people with ASD. First responders may misconstrue features in the home environment such as scars from self-injurious behavior, extra security on windows and doors, and less home decorations, which may or may not indicate abuse or neglect.
In order to address this major concern, it is important that people with ASD, their families, and service providers including first responders (police, fire, emergency medical technicians, paramedics), daycare, school, therapy and healthcare workers, child protection workers, and emergency shelter staff receive training to improve safety awareness in order to prepare, prevent, and more effectively intervene.
With funding from Kohl’s Cares, Adrienne Robertiello, Autism Outreach Educator at Children’s Specialized Hospital, has created training curricula and materials to address this need.
Sample curriculum for the person with ASD may include but not be limited to:
- Circles of intimacy and body boundaries
- Recognizing community partners – Who can help and how to interact
- Recognizing, preventing, and responding to bullying
- How not to bully others
- What to do if I am harassed – How not to harass others
- Sexuality, sexual expression, and protection from abuse
- Safety workers and their roles
Sample curriculum for first responders and other service providers may include but not be limited to:
- Overview of autism spectrum disorder
- Personal, social, and societal aspects; Effects on daily life through the lifespan
- Dangerous situations; Reduced fear of danger; Unpredictable responses/behaviors
- Personal safety; Vulnerability; Challenges/adaptive methods of reporting danger/incident
- Community and citizen safety: Water dangers; appropriateness of communication/behaviors; Potential inability to seek help
- Vehicular and travel safety: Personal vehicles; pupil transportation; mass transportation; traffic control devices
- Law enforcement and criminal justice system: Minimizing confrontational encounters; Person with ASD as victim; Perpetrators with ASD; Competence and consent; Strategies to reduce incidents; Judicial system
- Neglect, abuse, bullying, exploitation: Increased risk; Misconstrued environments and behaviors; Victims/perpetrators; Red flags; Assessment and response
- Search and Rescue: Common challenges; Modified responses; Prevention; identification and response options (personal tracking devices, medical alerts, etc.)
- Crisis intervention: Understanding ASD and family dynamics; Misinterpretations of household environments; Prevention and mitigation; Response modifications/de-escalation; Restraint issues
- Emergency response and management: Preparedness; Assessment; Response; Recovery; Mitigation; Communication channels and methods; Evacuation; Shelter challenges/supports; ASD-specific emergency preparedness materials
- Community education and supports: Safety education and resources; identification and communication options (augmentative communication, medical alerts, personal tracking, etc.); 911 Identifiers; Register Ready; State autism registries; Service animals; Adaptive safety equipment
While some emergency responders have adopted online training on ASD and safety, interactive workshops may be more comprehensive and effective as they provide opportunities for direct interaction and focus on specific concerns.
Recommended specific strategies for first responders include:
- Ask basic closed-ended information questions.
- Avoid unnecessary touching or restraint.
- For crisis de-escalation, approach in quiet non-threatening manner, calm tone, reduce gestures and reduce touch; reduce sensory challenges; provide familiar objects; watch personal space; simplify language and be concrete; don’t insist on eye contact or verbal response; and recognize that self-stimulatory behaviors may be calming.
- During Search & Rescue, be aware of need to use forced entry due to extra locks; may be hiding in personal “safe place;” search areas with water first, and expand search parameters and don’t ignore dangerous places.
- Teach 911 dispatchers to recognize characteristics of ASD; use simple concrete language; ask simple questions to identify real danger(s); clarify understanding of instructions; pause to allow time to process information; and redirect conversation to stay on topic.
Practical interventions for families:
- To reduce drowning risk teach water safety; use locked fences/gates around any source of water; train lifeguards to recognize ASD; utilize safety mechanisms including alarms; notify neighbors, pool owners, and local first responders; and ensure adequate supervision during outings near water.
- For elopement challenges, use video modeling, reinforcers, and social stories to teach person to walk safely. Use special locks, personal tracking devices and security alarms. Use identification such as ASD alert card, medical alert jewelry, or iron-on garment labels; child identification kits.
- In preventing abduction and sexual exploitation, use role playing, video modeling, and practice scripts with common lures. Use social stories relating to whom to approach for help, methods of recognizing and avoiding uncomfortable and unsafe situations.
- To increase travel safety, use adaptive car seats or transport safety restraint; establish travel rules; and use social stories.
- Consider the use of service animals to help protect, calm, regulate behaviors, and prevent escape.
- Evaluate if proper use of 911 should be taught if the person does not recognize real dangers or emergencies.
Resources
Children’s Specialized Hospital has assembled free, downloadable resources for people with ASD, caregivers, and service providers. Resources include the Autism Family Safety Handbook, “911 Means Emergency” pamphlet for individuals and first responders, emergency information forms, identification cards, and more available at www.childrens-specialized.org/KohlsAutismAwareness/safety.
Additional Resources
Autism Society Safe and Sound www.autism-society.org/living-with-autism/how-the-autism-society-can-help/safe-and-sound
Autism Speaks Autism Safety Project www.autismspeaks.org/family-services/autism-safety-project
National Autism Association Autism Safety www.autismsafety.org
Jill F. Harris, PhD, is Director of Program Development and Adrienne Robertiello is Autism Educator at the Children’s Specialized Hospital. For more information, please visit www.childrens-specialized.org.
References
Anderson, C., Kaw, J.K., Daniels, A., Rice, C., Mandell, D.S., Hagopian, L. & Law, P.A. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130: 870-877.
Carter, S. (2009). Bullying of students with Asperger Syndrome. Issues in Comprehensive Pediatric Nursing, 32:145-154.
Debbault, D. & Legacy, D. (2004). Autism and law enforcement role call briefing video. Debbaut Legacy Productions, Prt St. Luice, Florida.
Mouridsen, S.E., Bronnum-Hannsen, H., Rich, B. & Isager, T. (2008). Mortality and causes of death in autism spectrum disorders: An update. Autism, 12(4): 403-414.
Shavelle, R.M., Strauss, D.J., & Pickett, J. (2001). Causes of death in autism. Journal of Autism and Developmental Disorders, 31(6): 569-576.
Sullivan. P.M. & Knutson, J. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse and Neglect. 24(100): 1257-1273.
