Frontline Initiative: DSPs Responding to Crisis

Planning for the Unexpected:
Emergency Preparedness for Individuals with Autism Spectrum Disorder (ASD)

Author(s)

Eric Ringgenberg MA, is Education Program Director at the Autism Society of Minnesota. He can be reached at eringgenberg@ausm.org.

Individuals with autism spectrum disorder (ASD), as well as their families and direct support professionals (DSPs), need to be prepared for emergencies, including fire, severe weather, injury, or encounters with first responders and law enforcement professionals. Unexpected emergencies are challenging for everyone, but there are many reasons why people with ASD may face increased challenges and difficulty navigating these situations. Recent research has shown that people with ASD are more likely than the general population to interact with law enforcement officers. Approximately 20% of youth with ASD will interact with law enforcement by the age of 21, with half of these occurring by age 15, and a quarter of those interactions leading to arrest. Similarly, over half of law enforcement officers have responded to a call involving someone with ASD within the last year. The majority reported no formal training on supporting someone with ASD. Without specific training, law enforcement officers may misinterpret behavior of individuals with ASD. However, systems and training can support law enforcement officers to identify people with ASD and build community connections to support safe, effective interactions.

smiling caucasian man with short dark hair, beard, and blue plaid shirt

Eric Riggenberg

As a highly varied, often invisible disability, the presence of ASD may not be apparent to emergency responders. Having a limited understanding of ASD and how it may impact a person can lead to misinterpretations of behavior. Sometimes people’s behavior may look like intoxication, mental illness, aggression, guilt, or suspicion. When misinterpreted, there is a greater danger of negative outcomes. Due to this, sharing pertinent information with first responders is crucial for effective response and care.

Disclosing a disability or health condition can be an important step. But communicating such information can be challenging for some people. This is especially true during times of stress. There are many ways that people can share this information. They can carry a card with personal information and give it to first responders along with identification or other materials. Another resource is the VITALS app . The VITALS app is a technology-based solution for sharing information that can inform care and response. They can create a plan and practice how they will disclose information during an emergency. This can help the person feel prepared for these situations. DSPs often play a key role in supporting people to communicate effectively. Knowing the response plan for any people you support can help tremendously in any crisis. 

DSPs often play a key role in supporting people to communicate effectively. Knowing the response plan for any people you support can help tremendously in any crisis.

Police departments can support people with ASD by opting into systems such as VITALS where available. Additional steps can promote policing that supports people with disabilities. The Cops Autism Response Education (C.A.R.E.) program was started in 2015 in the Saint Paul Police Department in Saint Paul, Minnesota . C.A.R.E. promotes ASD-specific training, de-escalation, and proactive relationship-building in the community. If an incident occurs, officers follow up with the person during a non-crisis time within a week. They are encouraged to stay in contact with the person, their family, or their DSPs. This can help them provide crisis support in the future. Programs such as C.A.R.E. can help to prevent situations from occurring, and to effectively de-escalate them when they do. They build connections between law enforcement and the ASD community. These relationships help DSPs to work more effectively with law enforcement officers if or when a crisis occurs.

At this time, ASD training for law enforcement officers is not required in most areas. Several states, including New Jersey, Florida, Pennsylvania, Minnesota, and Massachusetts have passed legislation requiring law enforcement officers to receive training specific to ASD. Similar legislation has been introduced in several additional states. As more law enforcement officers receive training specific to ASD, there are additional steps that families and DSPs can take to help people with ASD prepare for emergencies.

  • Include the person with ASD in creating these plans whenever possible.
  • When explaining directions, use positive language. Tell an individual what you want them to do and not do.
  • When you ask an individual to stop a behavior, give them a suggestion for what to do instead.
  • Teach rules and boundaries with consistent language.
  • Review emergency plans step by step. Practice with tools such as social narratives, video modeling, and visual supports.
  • At home, create a safe space for the person with ASD to go in times of stress.

Finally, use your community. Get to know your neighbors. Introduce the person with ASD to emergency responders. By creating opportunities for individuals with ASD to engage with first responders and law enforcement professionals outside of emergency situations, everyone learns about one another. This helps to promote successful interactions within our communities.