News and Knowledge

Individuals with an autism spectrum disorder or other cognitive disability could potentially face any number of emergency situations in which they will come in contact with police, EMTs, firefighters, or other first responders. Many of them have not had any training in the signs, symptoms, and special handling of these individuals. As such, parents need to proactively prepare for emergencies that could cause injury or even the death of their child. 

These are the top 10 steps parents can take to reduce the likelihood or impact of an emergency:

1. Disclose, disclose, disclose. Get your neighbors and community involved proactively. Have a get-to-know-your-kid barbecue or party with your neighbors, so they know you are approachable and/or to explain unusual behaviors. Give them your phone number, so they can call you before calling 911, if they have a potential concern. Show them your child’s identification information bracelet, necklace, or information cards. Display autism awareness and notification safety items. (See the resources list at the end of this article for more information.) If your state has them, get an autism-related license plate. Inform neighborhood watch programs. Visit your local police and fire departments.

2. Provide 911 information sheets with your child’s photo and your contact information to neighbors and your local 911 database dispatch center or police station. You can find format sources and examples at the end of the article. A 911 flag with key dispatch data alerts first responders that your home is a “location of interest.”  Information sheets must include full name, address, phone numbers, and emergency contact persons. Other information could include:

• Current photograph and physical description including height, weight, eye and hair color, and scars or other ID marks
• Sensory, medical, or dietary issues, if any
• Inclination for elopement and any atypical behaviors or characteristics that may attract attention
• Possible compulsive activity
• Favorite attractions and locations where person may be found
• Likes, dislikes–approach and de-escalation techniques
• Method of communication, if non-verbal: iPad, sign language, or picture boards
• Identification wear, like a bracelet, necklace, information card, or identification patches sewn into clothing
• Map and address guide to nearby properties with water sources and dangerous locations highlighted
• Blueprint or drawing of home, with bedroom of individual highlighted

3. Complete a missing child packet through your local police or sheriff’s department. These packets could include a data report, photo, fingerprints, and possibly a DNA swab for you to take home.

4. If your child elopes or tends to run off, use a locator program or tracking system. The Project Lifesaver program has a good track record. It has reduced search times from hours and days to minutes. Since April 1999, it has had a 99.99 percent success rate for nearly 3,000 individuals with an average location time of less than 30 minutes. It uses proven radio technology and a specially trained search and rescue team. You will get a personalized wristband that always emits a radio tracking signal for your child to wear. When caregivers notify the local Project Lifesaver agency that the child is missing, a search and rescue team responds to the wanderer’s area and starts searching with the mobile locater tracking system.

If Project Lifesaver is not available or preferred, a number of GPS tracking and locator systems are also available (see the resource list at the end of the article). If your area is eligible, you may be able to get a free cell phone for your child through the Safelink Wireless program.

5. Put “In Case of Emergency” (ICE) contact information into your child’s cell phone, iPad, and tablet. There are other measures you can take as well, such as Plexiglas or bars on windows, mechanical locks or audible alarms on windows and doors, or video monitors. It also helps to dress the person in brightly colored shirts and coats for quicker, positive search results.

6. With summer upon us, it’s a good time to teach your child to swim or at least float.Drowning is the leading cause of accidental death for individuals with autism. Adapted swim programs in your area may be able to help.

7. If appropriate, get a photo identification card through your state’s Department of Motor Vehicles. You can also get a wallet card from the Disability Independence Group.

8. Check your zip code on the local sex offender registry, which is usually administered by the state police department.

9. Invite your school resource or safety officer to an IEP meeting, if necessary. This is particularly important if your child has a Behavior Intervention Plan (BIP) or if you have provided specific restriction instructions about restraint and seclusion.

10. If behaviors in the home become a problem, contact your local county community services board to see if it has an emergency behavioral or mental health assistance capability for individuals. If an arrest occurs, use the Arc’s Justice Advocacy Guide for help.

Resources

You can find safety resources in this list: Autism Spectrum Disorders and Public Safety Considerations References and Websites.

Scott Campbell is an active member of the autism community in Northern Virginia, serving in various leadership and volunteer roles with a number of nonprofit organizations and agencies. As the parent of a nonverbal child with autism, he is deeply concerned about safety issues for children with an autism spectrum disorder and speaks and writes frequently about safety. He has been a member of the Commonwealth of Virginia’s Public Safety Workgroup for Autism Awareness since 2010. He retired from the Army in 2013 after 31 years of active duty service.