Clearinghouse provides easy-to-use preparedness resources for families and responders assisting children with ASD

In Brief

During a disaster, children with Autism Spectrum Disorder (ASD) may experience extreme difficulty seeking assistance, communicating with others, and maintaining a sense of personal safety. Extra care and attention is required to ensure their safety and well-being. With a grant from the Minnesota Department of Human Services and in cooperation with the Autism Society of Minnesota, the Minnesota Governor's Council on Developmental Disabilities compiled a clearinghouse of helpful preparedness resource for families and responders, including materials for children that have an emphasis on visual communication and skillfully introduce the concept of threats and how to respond.

Background

Autism Spectrum Disorders (ASD) are developmental disorders that can affect how children communicate, interact with other people, and perceive their environments. While the number of people with an ASD is unknown, CDC estimates that 1 in 110 children is affected. Children with ASD may have extreme difficulty communicating and experience threats to their personal safety during disasters.

Because the needs of children with ASD vary widely across the spectrum of the disorder and encompass a variety of areas, the Minnesota Governor's Council on Developmental Disabilities compiled a clearinghouse of helpful preparedness resources for families and responders. The site features communication tools, links to assistive technology and training materials, and videos that introduce children to emergency situations and appropriate response behavior.

Specific issues

  • Children with ASD may exhibit a wide range of behavior during a crisis, including fear of law enforcement and strangers, heightened sensory perception that can lead to seeking solitude, running away, and loss of communication skills owing to fear or mistrust.
  • Risk communication techniques suitable for the general population may appear threatening or confusing to a child with ASD. Similarly, children with ASD may experience altered communication skills or be unable to verbalize during a time of crisis.

The practice

With a grant from the Minnesota Department of Human Services and in cooperation with the Autism Society of Minnesota, the Minnesota Governor's Council on Developmental Disabilities compiled a clearinghouse of resources dedicated to preparing families and emergency responders for the needs of children with ASD during disasters.

The online resource, Individuals with Autism Spectrum Disorder and Emergency Planning Resources, features:

  • An overview of emergency preparedness essentials, including tools that families can use to assess risk, identify a support network, make a plan, and locate a child if he/she is missing. Resources for responders include tools that provide training on the needs of children with ASD, how to identify children who may be at risk in a particular jurisdiction, and how to communicate risk in a calm and effective manner.
  • Descriptions and pricing information for services and products that may assist in finding or communicating with a child with ASD, such as locator devices, apps, and assistive technology
  • Videos that expose children to simulated emergencies so they can form habits in response to various situations. Events modeled in the videos include running away from home, responding to a mother's injury, finding a safe place to wait during a house fire, and viewing or listening to law enforcement without fear.
  • A section called "Billy Builds a Kit" that tells a story featuring a boy who learns about preparedness and builds an emergency kit.
  • Links to online resources that may assist with communication, including boards featuring symbols that children with ASD can use during an emergency to convey pain, illness, need for assistance, and other important messages. Boards are available in English, Spanish, and Haitian Creole.

What made this practice possible?

  • Funding and project participation from the Minnesota Department of Human Services and the Autism Society of Minnesota
  • Initiative from the Minnesota Governor's Council on Developmental Disabilities to create a clearinghouse where information on emergency preparedness for children with ASD can be referenced in one trustworthy location
  • Use of resources collected from a variety of sources, including advocacy organization Autism Alert, Autism Risk and Safety Management, the Autism Society of Minnesota, FEMA, the Rehabilitation Engineering Research Center on Communication Enhancement, Ramsey County, the Temple University Institute on Disabilities, and a variety of public and private services providing technological services for children with ASD

Results

  • Selecting and organizing information on emergency preparedness for children with ASD on one site provides an easy-to-use resource for families and responders who would like to incorporate the material into their daily lives or use it as a quick reference during an emergency.
  • Many resources focus on promoting resilience among children with ASD as they respond to everyday occurrences – not just large-scale disasters. Examples include interacting with law enforcement without being frightened, learning how to respond when exposed to injury or illness, and building habits around finding a safe place and addressing household hazards.
  • Materials developed for children with ASD are often applicable to many different populations. Because they are designed in a way that makes it easy for responders to communicate without using much verbal language, the symbols can be an effective tool for anyone who responds to visual information.

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