Plan Your Response to an Autism Emergency
By Dennis Debbaudt
The past year also brought with it a predictable spate of autism related wandering. Children and adults all over the world wandered from care and into danger.
Wandering should be a cause for concern for every one of us who advocate for people with autism.
Wandering--and other risks associated with autism--should be included with every information packet offered to families who are new to the spectrum. This information can save lives.
To help ensure safety and lower risk for a child or adult with autism, parents and care providers will need to become proactive and prepare an informational handout.
Leading causes for for concern are children and adults who run away or wander from parents and care providers. Tragically, children and adults with autism are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a child or adult who has autism. Wandering can also lead to high risk field contacts with law enforcement or members of the general public.
Preparing for a wandering incident may seem extreme for some families. After all, their child or adult hasn’t wandered or bolted. Yet, for many other families, addressing wandering the first time can be the worst time. These preparations will also be invaluable before, during and after a natural or manmade emergency situation. For example, when a parent or care provider has their own medical emergency and becomes quickly incapacitated.
For many families, securing their home against chronic and dangerous wandering is the first order of preparedness. They may consult with professional security and burglar alarm, locksmiths, and home improvement companies who are familiar with 21st century technology that can help secure a home. Always keep a record of your anti-wandering efforts. You may need to prove to authorities that you are not neglectful parents or care providers.
Contacting 911 Call Centers
In the U.S., some law enforcement, fire rescue, and emergency 911 call centers are willing and able to proactively place this information into their data base. Although not every system or agency is able to provide this service, it is certainly worthy of inquiring about.
If wandering is a concern, ask your local 911 Call Center to red flag this information in their 911 computer data base. When a call comes in for response to Alzheimer’s, autism, or medically fragile families who participate--911 telecommunicators can alert the first responder before they arrive with key information that was provided. When we provide law enforcement with information before an incident occurs, we can expect better responses.
Autism groups can partner with Alzheimer’s disease advocacy organizations to approach local 911 Emergency Call Centers. Single family approaches can also be made for families in more rural areas. Remember that you are volunteering this information and privacy may be a concern. This will be your choice to make. There are model programs. Take Me Home, developed by the Pensacola, Florida Police Department is one example. Rutland, Vermont Police Department is another. Cite these examples when you make your approach. You may need to be persistent, but these are reasonable requests.
When Wandering Occurs
When a wandering incident occurs, and you are listed in a 911 special needs database, please be aware that the information is typically linked to your home--to help assist during an emergency at your home.---and may not automatically transfer to identify a person who has wandered away from home and is now out in the community.
Before searching, it will be your responsibility to call 911 and inform them that a family member is missing and needs assistance in the community. Be ready and willing to provide information about the person who is missing, either proactively or on-the-spot, to 911 telecommunicators or field officers. This can make a positive critical difference to the response to the field response.
An Autism Emergency information handout should be developed, copied and carried with you at all times--at home, in your car, purse or wallet (see model below). Also circulate this handout to family members, trusted neighbors, friends and co-workers. The handout will also come in handy if you are in an area other than your neighborhood and are approached by the police.
The Autism Society of America’s Safe and Sound initiative features autism alert stickers for homes and vehicles--and a handy form example for information that can be developed, photocopied, carried by parents, care providers or persons on the spectrum to produce or be found during an emergency--and shared proactively with law enforcement, emergency response agencies and persons that should be contacted during an emergency. Visit www.autism-society.org and type in Safe and Sound.
- Prepare and copy your Autism Emergency information handout (model below)
- Keep a copy on your refrigerator and near your phone
- If wandering has occurred, call 911 before you go off to search
- Alert the 911 telecommunicator if you are listed in the 911 Special needs directory
- If not, be prepared to share with the telecommunicator the information from your Autism Emergency information handout
- Plan and practice your response in the event of a wandering incident
- Plan a mock event and your response as you would plan and practice your response for escape from a fire in your home
- Practice the 911 call with a friend
- Keep a written record of your efforts
Autism Emergency Contact Handout Model
- Name of child or adult
- Current photograph and physical description including height, weight, eye and hair color, any scars or other identifying marks
- Names, home, cell and pager phone numbers and addresses of parents, other caregivers and emergency contact persons
- Sensory, medical, or dietary issues and requirements, if any
- Inclination for elopement and any atypical behaviors or characteristics that may attract attention
- Favorite attractions and locations where person may be found
- Likes, dislikes--approach and de-escalation techniques
- Method of communication, if non-verbal sign language, picture boards, written word
- ID wear jewelry, tags on clothes, printed handout card
- Map and address guide to nearby properties with water sources and dangerous locations highlighted
- Blueprint or drawing of home, with bedrooms of individual highlighted (Debbaudt, 2004-07)
Some type of ID wear is essential for those with autism, especially if they are non-verbal or are unable or become unable to respond to questions about their identity if they are found.
- MedicAlert style bracelet or necklace
- Joggers shoe tags
- ID information laminated card: on belt loops and belt, sewn into pants, sewn into jackets
- hang from zippers
- silk screened into undergarments
- non permanent tattoos
Bracelets, anklets, necklaces, shoe or jacket tags, ID cards, clothing labels or permanent ink ID on t-shirts or undergarments are all good options. The problem with some of these is they may be removed by the person with autism who has sensory issues. An innovative option is the use of prepared, washable tattoos that bear ID information (tattooswithapurpose.com).
If ID wear is used, first responders may not know what autism is. More specific language should be considered in addition to name, address and phone number, such as, non-verbal, sensitive to light, sound or touch, possible seizure activity, or may not seek help. (Debbaudt, 2002).
Alert Your Neighbors
The behaviors and characteristics of autism have the potential to attract attention from the public. Law enforcement professionals suggest that you reach out and get to know your neighbors.
- Decide what information to present to neighbors
- Plan a brief visit to your neighbors
- Introduce your child or adult or a photograph
- Give your neighbor a simple handout with your name, address, and phone number
- Ask them to call you immediately if they see your son or daughter outside the home
This approach may be a good way to avoid problems down the road and will let your neighbors:
- Know the reason for unusual behaviors
- Know that you are approachable
- Have the opportunity to call you before they call 911
Knowing your neighbors can lead to better social interactions for your loved ones with autism. (Debbaudt, 2004)
NOTE: This article recommends reaching out to and alerting neighbors about a child or adult. Parents have expressed their concerns about doing this. The fear, not unfounded, is stranger abductions or abuse. While these incidents can and do occur, physical and sexual abuse is oftentimes perpetrated by persons well known to the victim families.
Below is a link to information that parents can become familiar with in the area of victim selection and modes of operation of child abusers. Risks are dealt with best when we know about them.
I interviewed Ken Lanning for my 1994 booklet, Avoiding Unfortunate Situations. His advice and information is essential for every parent to know.
Authored by Kenneth V. Lanning and produced in cooperation with the FBI, the fourth edition of this book is an investigative tool for law enforcement officers and child-protection professionals handling cases of children who are sexually exploited. It provides investigative strategies, the characteristics of a pedophile, and the difficulties often encountered in cases of sexual exploitation. It introduces a typology that places sex offenders on a continuum, from preferential to situational. 160 pp.
Whether we develop an Autism Emergency Plan ourselves or use a template, what’s important is our ability, willingness and preparation to use it during an emergency.
Debbaudt, D., (2002) Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders. Jessica Kingsley Publishers. London-Philadelphia
Debbaudt, D., (2004-07) Are You Prepared for an Autism Emergency? Dennis Debbaudt¹s Autism Risk & Safety Newsletter (Original article in English. Spanish, Japanese and Mandarin Chinese translations at http://www.autismriskmanagement.com/
For further information:
Dennis Debbaudt, 2338 SE Holland Street, Port St. Lucie FL 34952