“How to Prepare for an Autism Emergency” Transcript
Hi Everyone! Dennis will be on in less than 15 minutes!
Here is some information about Dennis before we get started!
Dennis Debbaudt is the proud father of Brad, a young man who has autism. In the 1980′s,
Dennis wrote for the Detroit News and worked with network television current affairs
programs in the U.S., Canada and United Kingdom. A professional investigator and journalist
since 1977, Dennis turned his attention to autism spectrum conditions in 1987 after his son
was diagnosed with autism. His first report Avoiding Unfortunate Situations was published in
1994. He’s since authored over 30 articles, books and chapters including Autism, Advocates
and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with
Autism Spectrum Disorders for Jessica Kingsley Publishers, London UK (2002), Contact with
Individuals with Autism: Effective Resolutions for the FBI Law Enforcement Bulletin
(Debbaudt & Rothman, 2001), Patients with Autism and Other High Risks for the Journal of
Healthcare Protection Management (2009) and Autism in the Criminal Justice System (Taylor,
Mesibov & Debbaudt, 2009).
Hi, Dennis here! Over the last 20 years, as the rate of autism has increased, so have contacts with law enforcement. Autism emergencies refer to an either unexpected or sudden contact with law enforcement and first responders. Are you prepared for an autism emergency? I’m here to help.
Comment From LE SAR
I am curious from a law enforcement perspective how much a search for a missing child costs? Does the use of technology substantially decrease these costs?
There is really no telling how much a search for a missing person costs. NBC News reported statistics going back 10 years that in a 2 year period in a Southeastern state that search and rescue costs during that period were about $200,000. The use of technology does in fact reduce the costs of these searches. When the Project Lifesaver program was instituted in many parts of that state, their costs went down to about $40-50,000 a year.
I have a 3 letter acronym I use, Preparation, Alert and Response.
Preparation can mean checking your home or where you are, to see what type of low and high technology you might think about employing. Low technology can be anything like a bell on the window, high technology can be anything that creates an invisible perimeter that if someone crosses can create a serious loud alert. Other parts of preparation would mean getting to know your nearby neighbors so you can have extra eyes and ears if necessary. As well as 911 registry programs.
Alert would be when the technology is in use: bell goes off, door opens, alarm sounds, neighbor calls and tells you your child is in the lawn. Now you’ve been alerted to it. Then comes the response.
Being alert, knowing that the incident happened will be key. The sooner you know, the better the response will be.
The response can be you finding your child, I suggest calling 911 since you need all the help you can get. Technology such as Project Lifesaver, LoJACK, where you have your child registered with the program, can introduce search and rescue immediately and hone in on the tracking device.
Comment From Lisa
Hello! I have a daughter, 14, who has wandered off more than once. So far, with help from family members, we have been able to locate her and bring her home within minutes without involving the authorities. We live in a very small community. What safety measures can you suggest?
Hi Lisa. I would suggest you contact a burglar alarm company, professional locksmith or a home improvement company to get a quote about what type of technology can help you get alerted to the wandering. Even though your neighbors may be further away, you still need to be sure you are able to reach out to them immediately. You will still need to have some contact with law enforcement, because there may come a day when you do need to contact safety professionals. Do you want to be proactive or wait until it is needed? It is always going to be a family’s choice.
Comment From Guest
is law enforcement aware of the gps for children with autism in every state, city, and will an amber alert be issued for autistic children seeing it is differnt circumstances if needed?
Project Lifesaver, Lojack Safety Net and Care Track use radio frequencies, not GPS. The transmitters are on the children or the adults, they are registered so that once you are alerted to the need to find them then law enforcement does the tracking. Law enforcement officers prefer these because they are very accurate.
However, now GPS is entering the market. Anyone can purchase a GPS transmitter, but it does put a lot of pressure on families. When we get into that arena, over the past 4-5 years there are a good number of companies that are now providing GPS tracking devices and programs to track people. There are many, many out there now. As you would and should with everything in your life, kick the tires, ask the questions, make sure that you are aware of the backgrounds of these companies, their track records. A fancy website doesn’t always make a terrific product.
Comment From Guest
is there any new information about the amber alert for autistic children?
Amber alerts refer to child abductions. Where our population may be helped is in Silver alert programs, where you can still get word out but not necessarily a child abduction. Silver alert programs are used to say there is a child or adult missing or at risk. These programs are also used for older people with dementia or Alzheimer’s.
Comment From Karol
is a good idea to have one’s child registered with the nearest police department in case of any emergency. example: Finger printed and or small background information on his/her disability?)
Hi Karol. Registering your child with the police department is voluntary, but I would encourage that. There are some good programs out there that have been created by law enforcement.
Pensacola, FL police department developed the Taking Home program. Other communities are now modeling it in places such as San Diego.
In Ottowa, Canada, they have started an autism registry. They are getting feedback from police that this is working, including a report of a young man on a bus having a meltdown. Police were called, and he was on the registry. First responders were able to come in and calm him down about his favorite juice drink, video, etc. They couldn’t have known that without the program.
Registries are a great idea, but again, they are voluntary.
Comment From kelly
Do kids tend to outgrow the wandering/running behavior?
Hi Kelly. Some children do, some don’t. My son is 28, when he was a little boy you would have to have a hand on him or he would run away. Near traffic he would go into to street, near water he would jump in. By the time he was 7 or 8 years old, he had demonstrated to us that he was then able to start judging risk. It can happen, but each person with autism is different. For most children it has to be taught.
Why children wander chronically can be a mystery to parents and law enforcement. Is it natural curiosity? What is driving this dangerous behavior?
One suggestion I’ve heard was to video tape where the child was going once you find them. Video tape the route they took and where they were found. Allow the child to watch the tape, and you watch the child that watches the type. They may get really excited about something they see in the tape, which can help you figure out what they are wondering to.
Once we know what is causing it, we can put into place educational techniques in order to prevent it from reoccuring. You could address it at school or in the home.
Comment From Gail
Are there any programs in place to help educate police about autistic children and persons? When my then 3 year old autistic daughter was missing, they were the scariest moments of my life. The police were very good and checked my home first (something I hadn’t thought of in my despair) and she was found hiding in the basement. At the time I desperately wished there was an identification system I could use. Now I see there are good programs that you have mentioned. It seems to me that safety needs to be addressed across the board. Beginning with the pediatricians and possibly with the special programs children attend, including and especially Early Intervention.
Hi Gail. That is essentially what my group does. We travel everywhere into law enforcement and first responder training facilities to conduct direct training with police, 911 communicators, firemen, etc. Since I was first invited into a training room in 1995, through the efforts of the people I work with, we have caused the training of well over 100,000 police and other first responders. This sounds nice, but we still have lots more to go, just in North America.
There is usually a one time training, but we are now offering an online program, we have training videos, and we are training trainers who can pass it on in other parts of the country. 4 or 5 states are requiring this training in police academies. In the US, we have so many varied and different law enforcement agencies, large and small, local and state, federal, etc. It becomes more of a daunting task but we are making significant inroads in getting the word out.
Comment From shelda
great information thank you!
We get very positive feedback from it. The key here is that law enforcement can’t use this training if they don’t know who has autism. It is a 2 way street when the families are participating in these registry programs and reaching out to law enforcement letting them know there is an individual here, a child or adult with autism. We want to make it as easy as possible for first responders to know that this specific contact is autism-related. Building community partnerships between public safety officers and the autism community is key so that in the future these programs become more sustainable.
Comment From Kim Helmke Mitchell
Dennis, can you provide the links to the programs you referred to above? Specifically, program in Pensacola, FL, and Ottowa, CN, Thanks, Kim
HI Kim- I will provide links at the end of the session. Thanks
Comment From Suzie F.
Hi Dennis. You brought up technology. Can you speak about RF vs. GPS. I’m confused on which one to use (battery life etc)
Comment From Michael
I really appreciate the training law enforcement get on people with autism.A skill much in need.TY
Hi Suzie. RF is radio frequency, it is what you hear when you turn on a radio such as your car radio. The closer you are to the radio stations antenna, the better the signal comes in. It is line of sight basically. When RF is used, it is a very strong signal, but you have to be within a mile or two. Used in helicopters and ground vehicles and with enough alert time, it is a great technology.
GPS can be useful but it has some problems with certain terrain in the city or elsewhere that may cause interference. It also may not work in some type of power outage or storm. GPS has to go up to a satellite then come back down to a computer that would track it. It wouldn’t work without this computer. We want only the best for people with autism.
RF units currently have a battery life of about 6 weeks, but they change it every 4 weeks, and it is always on. My understanding of GPS is that it must be charged up perhaps as frequently as daily.
Comment From Karol
Are there any programs in the New York city area and have you done any police or facility training in new york and can you provide links to programs in NY.
Hi Karol. Our group worked directly with the NYPD. Back in 2008 we produced a short 8 minute film for them, an instructor’s guide and I traveled to NYPD’s academy and trained their field training officers, about 360 of them, all being responsible for field training of another 100 officers. 3 years later, they are in production of their own autism related training video for their internal use.
I would suggest you contact the NY C Police Dept and ask for more information on the topic
Comment From Megan
Are search and rescue volunteers/staff given training on how to approach an autistic child once they’ve been found? For my son, (2 1/2) I can imagine it could be pretty traumatic to be approached by a complete stranger, who doesn’t understand ASD..
Comment From Kim Helmke Mitchell
Your comment about relationship w/ police/first responders made good point: that it is a 2 way street. Perhaps some of our autism advocacy groups, local support groups can invited local police to meeting or event or camp to get to recognize certain behaviors, reactions as autistic. I have found many of the police involved my son’s (Shea) already have a working knowledge of autism; there may be a family member, their spouse or sister may teach autistic children. I have found the police, first resp. in Gwinnett County ,GA to be more than helpful when we’ve had problems and needed add’l help
Hi Megan. I have presented at search and rescue trainings, my work is cited in some of their materials. I cannot say that all of them have received training, I wish I could! I hope one day soon it will be implemented everywhere. What I can report is that 16 years ago, nobody was trained in it. We are making progress. The more help we get from families who can put us in touch with the agencies in their areas, the better off we all can be!
Search and rescue issues are currently covered in our training videos as well.
I have trained the Team Adam trainers at the National Center for Missing and Exploited Children. Hopefully word is spreading.
Comment From Michael
Is there a way parents can see some of these videos that are taught,so we understand better?
Hi Michael. This depends on where you live. Some local autism organizations may have access to the full videos. There are clips on our website where people can get a sense of what is inside those videos.
Comment From charlene
I’m in So East FL & it is overloaded with people & commercialism. My 9 yr old Aspie son – is high functioning and too friendly. He often takes off and willingly goes with others in a flash he barely knows. Lucky for us nothing has been harmful and I don’t want to over alert him.. but he flirts with disaster. Do you have any helpful videos to help him understand safety issues?
There are scenes in our Autism Fire Rescue and Emergency Medical Services that he may learn something from. You may want to watch it first before you show him. My son is high-functioning too. How you teach each child safety and risk is going to be different from the less independent child or adult.
I have also written 2 book chapters: one is in Asperger Syndrome and Adolescence on the issue of safety. The other is a book called Coming Out Asperger’s which is about disclosure to authorities. Both may be useful in reading along with your son. This information can also be a model for a safety curriculum. Some of this information is already up on our website, and on the Autism Speaks Autism Safety Project website.
Comment From shelda
yes i strongly agree all law enforcement should get training in autism and there behaviors and there thinking would be wonderful!
Comment From shelda
can you please explaine what the taking home program is?
Take Me Home was developed through the Pensacola Police Department in Florida. It uses a database that can include information from families, a current digital photograph. It can also be accessed through the on board computer in a patrol vehicle.
The New York Times reported in the last couple years that over 80% of US police patrol vehicles now have an on board computer. It can be very useful if that person were out in the community, the alert hasn’t gone off but there seems to be something different. They can go into the registry right in the vehicle and type in the physical description. It would then show only people who matched that description. You would then have photographs where you could see people that were part of this autism registry program.
Other police departments have put their own unique twists on it. In Ottawa, law enforcement officers are trained to recognize people within the registry system. The detail could be on your car, on your home, etc. that would identify you as part of the program so they could access person-specific information. The Take Me Home program is now spawning other similar successful programs.
Kim I would absolutely recommend bringing the kids to a police office, firehouse, hospital etc, where there is no threat so they can get a feel of what this is going to be like if they need to do any of it during the emergency. That is an excellent idea.
It also allows the first response police and the care providers to take to each other in a relaxed environment so they can address each other’s needs.
It is so important for first responders to be able to interact with children and adults with autism, and the reverse is true as well. We need to know what the police’s needs are as well so both parties are better prepared.
We have an Autism Emergency Contact form is on our website. It is just a template. All you need is something legible that you can pass on to people you can trust with your information. Keep them in your vehicles, at the neighbors, on your refrigerator, next to your phone, in your chid’s backpack, etc. Making it easy to find is key!
Here is an example form from the Autism Speaks Autism Safety Project website:http://www.autismsafetyproject.org/atf/cf/%7Bd7db5d5c-3f40-4d04-af93-6f2b2ee549db%7D/FS_EMERGENCYFORMS.PDF
Comment From shelda
what should be state on the emergency contact form with out this information being in the wrong hands?
Yes we do talk about the physical and behavioral characteristics at our training sessions. But not everyone is going to have these same characteristics. We show them videos so they can understand what signs of autism may be, but they also must know that not everyone with autism is going to display these traits, so you can’t rely on it as the only source. While one individual with autism may be rocking back and forth, or engaging in a similar behavior, the next one may not.
I suggest you use other signs like the Autism Speaks bumper sticker, pins, ribbons, anything else, to indicate to people in emergencies that there are special circumstances if you are unable to do/say so. Awareness tools can be hugely helpful. These “icons of autism” do alert people to the fact that somebody has autism, or suggest it at the very least.
Comment From Marcy
Are medical alert bracelets a good idea for children with Autism?
Medical alert bracelets are a great idea. I’d also like to make it clear that when it comes to safety and risk in autism, it is not just children, it is adults too.
Non-permanent tattoos with names and addresses, imprinting information into clothes or undergarments, shoe tags, tags through belt loops, medical alert jewelry, etc. are all products that may be helpful.
Comment From shelda
can you make your own emergency contact form? do you list that the child or adult is autistic?
Hi Shelda. Yes, of course you can make your own emergency contact form. The ones you find online are just templates, models, guides. You can provide as much or as little information as you choose.
The family’s take control here, it is up to all of you what you want to share, and how you want to share it.
Comment From Hello
Yes, Medic Alert has memberships for both – Kid Smart Membership (17 year and under) and Advantage Membership (18 years and older).
Managing safety should be part of the daily routine, like wearing seatbelts.
Comment From Guest
Is it possible to have a national training program and registry program for law enfocement? We are military and moving around brings so many challenges it would be nice if that part of the transition was easier since all of the medical issues consume most of my time.
In some countries, safety systems are nationalized. Here, if you live in the US probably within a 50 mile radius you would have 50-100 law enforcement agencies, another 50-100 911 call centers. It would be pretty hard to manage that, but you never know!
In terms of the military, I had a meeting last month with 2 representatives from the Department of Defense up in DC. The plan is to have a live session such as this on the internet that would go out to all military families around the world so we could discuss these programs. Military law enforcement around the country is in attendance as well at our programs.
They are showing an interest in it, which is great.
Comment From Guest
as a parent i am very concerned about the safety of my autistic child seeing he is so friendly i feel its like a big flag to abductors and pedifiles if i list he is autistic do u recomend any saftey measures on this issue?
I only know of one case where a child with autism was abducted, and it was by someone that he knew. Kenneth Lanning Jr. is a retired FBI behavioral analyst, some call them profilers. The FBI allowed him to spend his entire career focusing on child abduction and abuse. He has written about these issues for over 30 years. He has a great deal of information on the tools and flags abductors use in identifying victims. I would strongly recommend his work.
Here is a link:http://www.missingkids.com/en_US/publications/NC70.pdf
I hope all of this information today has been helpful. I thank everyone for coming out and chatting! We’ve accomplished somethings in the world of autism and safety, but there is still lots more to do.
I want everyone to stay safe, enjoy the holiday season, take those few extra minutes to sit down on a regular basis and discuss these autism risk and safety related issues.
Thank you for joining! I’m available for questions any time on my website. Enjoy the rest of your day!