Disaster preparedness for persons with autism

MANILA, Philippines — Last March 11, Japan was hit by a magnitude 9 earthquake and giant tsunami displacing thousands of lives, homes, and communities.

Giant Tsunami Displacing Thousands of lives, Homes

Stephen M. Shore, an adult on the autistic spectrum disorder (ASD), an international advocate and speaker on ASD, published author, and assistant professor of Special Needs Education at Adelphi University in New York, did a research on helping people with ASD during disasters.

Our Angel Talker this week, Lani David, is an accredited Philippine DAISY Network trainer who gives lectures on DAISY (Digital Accessible Information System). DAISY training includes disaster preparedness for persons with disability. Lani represented Autism Society Philippines (ASP) in the Symposium on Community-based Inclusive Information Support for Persons with Disabilities in Kyoto, Japan.

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Based on the background research of Stephen M. Shore, the Autism Research Institute website noted that many of the ideas relevant to disaster preparedness for the autism spectrum disorder (ASD) population are already being used and materials already exist that can push education and awareness.

Autism Spectrum Disorder

The Digital Accessible Information System (DAISY) compliant multimedia materials will probably be the best example of the universal design concept of information dissemination, which is accessible by everybody. DAISY is currently used as the alternative reading format for print-disabled individuals. (see sample DAISY books on http://www.daisy.org/sample-content).

Shore identified two major components of a comprehensive disaster preparedness program for people with autism:

1) The use of visual materials to alert on-the-spot responders that autism is present and that offer practical advice for helping these individuals; and

2) Advance preparedness in training for the child or adult on the spectrum in the event of a natural disaster, and education and awareness of first responders.

Ideas for on-the-spot assistance during a natural disaster

Shore stressed it is important to prepare the environment (home, room, etc) in which the child or adult may be found with visual materials aimed at identifying a person with autism and educating a potential first responder. To be effective, these materials must be understood immediately or take no more than five to ten seconds to read.

Identification and education

Sticker. The Autism Society of America (ASA) has created an easy to comprehend sticker for an almost instantaneous recognition that a person with autism is present. The universal warning symbol plus potential reactions of someone with autism are described in the sticker (find it online at www.Autism-Society.org).

Two-sided business card can share dditional information about a PWA. One side of the card shows major characteristics of autism, such as “may not understand what you say”, “may engage in repetitive behaviors”, may act upset for no apparent reason”, and “may be unable to speak or speaks with difficulty.” It also includes a special caveat to the first responder: “For law enforcement or medical emergency personnel: This individual may not understand the law, know right from wrong, or know the consequences of his or her actions.”

The other side of this card includes helpful hints for interacting with a PWA, such as: use concrete terms, aAllow time for responses, etc.

Visual schedules that depict the actions a PWA should take in the event of emergency can be posted in the home or the PWA's room. These visual instructions serve a two-fold purpose: they can help the PWA stay calm and know what to do, and alert first-responders that the child or adult may need extra time and/or assistance in order to comprehend instructions.

Picture symbols. A wide range of picture symbols to create these visual instructions are now available. “Boardmaker” contains a database of over 3,000 pictures. A variety of free symbols are available on the Internet.

Before disasters strike

Before disasters strikes

A truly effective disaster preparedness program will be proactive in providing education, awareness and preparedness of PWA and their supporters BEFORE disasters strike.

Dennis Debbaudt (author of the book, Autism, Advocates, and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with autism Spectrum Disorders) likens disaster preparation to wearing a seatbelt in an automobile.

A complete disaster preparedness program will follow a two-pronged path:

1. Education of the PWAs and their immediate family or caregivers, and

2. Education of first responders, such as policemen, firefighters, emergency medical providers, and other community members.

In conjunction with Debbaudt, ASA has produced a handy tip sheet, “Disaster Preparedness Tips for Our Families,” that is a good starting point for disaster preparedness for both PWAs and their families (find additional helpful materials at the ASA website, www.autism-society.org.)

For PWAs who have more advanced verbal and reasoning ability, there is PowerCards developed by Elisa Gagnon. PowerCards are useful for working with people with Asperger's Syndrome and high-functioning autism.

For example, suppose a child with Asperger Syndrome has a special interest in flying and wants to become a pilot. Gagnon suggests to develop a power card that incorporates a picture of a pilot the child knows and/or admires, coupled with recommendations from this pilot on what to do in the case of a severe weather alarm.

Disaster preparedness education needs to become a priority in our homes and our schools. These materials are only effective if they are used in educating PWAs, their families, and community responders. This involves everyone assuming responsibility for teaching and educating others about PWA. Even a little effort, a little education, a little awareness can easily be the difference between a life and death outcome during a disaster. Don't wait for 'someone else' to educate your child, your family, or your community. Be proactive.
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