The training of first responders is absolutely critical to keeping individuals with autism safe. Unfortunately, there are far too many stories of dangerous situations that arise because of a lack of communication and understanding between safety professionals such as firefighters, and individuals with autism and their families. Yesterday, NBC’s Today featured Bill Cannata, the father of a young adult with autism who has developed a program that has educated over 15,000 first responders around the country in how to handle people with autism, and as a result, saved lives. Bill was also a member of the professional advisory committee for the Autism Speaks Autism Safety Project, where he provided tips and quick facts for firefighters interacting with individuals with autism. To further these efforts, in 2011, the Autism Speaks Family Services Community Grants program provided funding for the Autism and Law Enforcement Education Coalition (ALEC), designed to help foster a deeper understanding of autism spectrum disorders by training public safety and law enforcement personnel. Autism Speaks applauds these first responder training efforts.
Safety is a critical part of all of our lives, whether we are at home or out in the community, alone or with loved ones. Being aware of our surroundings and taking precautions to stay safe is even more important for individuals with autism and their families. The Autism Safety Project is designed to provide families affected by autism with tips, information, expert advice and resources so that everyone in our community can stay out of harm’s way.
Since we have launched the updated Autism Safety Project this week we wanted to know your best tips and ideas about teaching safety to your family and friends.
By Lisa Murray-Johnson, PhD, The Ohio State University Medical Center and Ohio State University Nisonger Center
“We are grateful he’s alive.” Pat’s voice was strong, but you could still hear the heartache as she described the horrific fire that injured her son John and claimed the life of his roommate and a caregiver. “He was burned over 18 percent of his body and Fred and I knew it would be a long recovery.” As a young adult with autism and other developmental disabilities, John recovered at The Ohio State University Medical Center’s Burn Unit.
I thought I was just having lunch with my colleagues Pat Cloppert and Becky Coffey. I didn’t realize how prevalent burn injuries were among young adults, nor was I aware that Becky had cared for John. Becky Coffey, RN, CNP, is a nurse practitioner in the OSUMC Burn Unit. She said 68 percent of all burn and hot water scalds happen at home. These were the statistics from the National Burn Registry from 2001-2010, a database that records burns from such events as fires, hot water, hot objects and chemicals. The numbers were startling; as many as 450,000 people need medical treatment for burn injuries each year:
- 44 percent of burns are from flame fires.
- 33 percent of burns are from hot water scalds.
- 9 percent are from contact with hot objects.
And these are only the reported injuries. Those who treat their injuries at home without a doctor or hospital visit are not included. It underscores the enormity of the problem.
Pat Cloppert, BSFS, is an advocate and public speaker for family services and autism at The Ohio State University’s NisongerCenterfor Developmental Disabilities. Her life has been to the service of others. But that day, she was a mom. We were three health professionals who were mothers. What if that had been my child?
The Safe Signals project was born. The goal was simple: Create a tool kit with a video, workbook and vinyl clings that would serve as everyday safety reminders. Burn and scald prevention education also has the potential to reduce other household injuries and fires in the home. Diane Moyer, RN, patient education associate director, and fire fighter Jaime Sierra, a public education specialist with Columbus Division of Fire, rounded out our team.
We also needed young adults to help us with this project. It was meant to be a project by young adults, and for young adults. Pat and her colleague Jeff Siegel, MSW, social worker for Aspirations Ohio and also at theNisongerCenter, helped to coordinate young adults on the autism spectrum to join us. Together, we were each other’s teachers and students.
There are so many moments that make the Safe Signals project special: Justin Rooney, our narrator, showing his gift of voiceover work, or Alissa Mangan and Tommi Lee Gillard working to shape the dialogue of the video script so that it felt comfortable. Or the moments when Seamus McCord and Tom Robison worked through the kitchen scene finding humor in overcooked noodles for the macaroni and cheese. And Zoe Castro, our Spanish narrator, graciously helping us navigate cultural sensitivities.
We hope you find the Safe Signals toolkit helpful in looking at your own living space with a fresh perspective. Most safety behaviors take very little time and money. From our homes to yours, we wish you safe living!
- Plan out safety behaviors for each task at home. For example, use oven gloves and pan lids to protect yourself when cooking.
- Practice safety behaviors and place reminders in each room to help you.
- Set the hot water heater or boiler to 120 degrees Fahrenheit (48 degrees Celsius) to avoid burns. Always turn on the cold water first, and then add warm water.
- Create a fire escape plan. If there is a fire, get outside and then call 911. Do not go back inside. Wait for help to arrive.
- Install smoke and carbon monoxide detectors where you live. Test them each month and change the batteries every 6 months.
Note: Pat Cloppert, BSFS, contributed to this blog.
“I am a grandmother of a child with autism and I worry when my grandson comes to visit he will wander from my home; how can I make sure this doesn’t happen.”
This is a frequently asked question by family members of individuals with autism. It’s critical for families to put a safety plan in place and increase awareness of the safety risks for the individual with autism.
We would like to hear from you about what steps you took that worked to insure the safety of your family member with autism. Please share your experiences so that others may benefit. For more information visit: Autism Safety Project at: www.autismsafetyproject.org
Additional Safety and Autism resources in November’s Community Connections include; Safety and Autism, with updates to the Autism Safety Project and feature Safety in the Home Workbook and Video, a resource developed for families by Ohio State University faculty and funded by a Family Serves Community Grants. Please join us for two Facebook Live Chats scheduled, on Nov 15th at 4-5 pm EST Dennis Debbaudt, www.autismriskmanagement.com will present “How to Prepare for an Autism Emergency,” and on Nov 20th at 2 pm EST George Braddock, from Creative Housing Solutions, will present his work Housing designs.
Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!
Ensuring the safety of a person with autism is important and often difficult. People with autism are faced with a different set challenges, and one must be prepared for an emergency or crisis situation.
How do you teach your child safety? What are some ways you explain danger? Have you or your child ever been in an emergency situation?
Autism Speaks Family Services has created the Autism Safety Project, an online tool kit for individuals with autism, families, and first responders that provides information and strategies to promote safety in emergency situations.
This is a guest post by Lori McIlwain who has a son with autism.
If I could have made Connor a miniature replica of every highway exit sign in the state of North Carolina, I would have. He knows them all by heart. Realistically, I could only create a few particular favorites that he often begged to see. Driving him to those exits down Interstate 40 became the equivalent of going out for ice cream, and our days were filled with drawing one exit sign after another as he nudged green crayons into our hands asking, “Exit 93A?” “Exit 289?” “Exit 2B?” Arts and crafts were never my thing, but for two weeks leading up to his 8th birthday, I committed to a daily ritual of wood glue, green paint and rectangular slats. I remember the day he opened them — his smile grew wide and steady as they peeked out from under the tissue paper. To him, those exit signs were the best gift ever. To us, a way to keep him safe.
It wasn’t long before when I received a call from a woman explaining that our seven-year-old son was sitting in a police cruiser after being found by a random stranger. Connor had wandered from the school grounds, and although no one could say how long he was gone, it was clear he made his way through some woods and onto a side street leading to a four-lane road. A local man was on his way to the post office when he spotted him. He put Connor in his car and called the police.
Connor told the officer he was “going on an adventure to touch his favorite exit sign.” He had wandered multiple times before from multiple schools, but this was the worst yet. Although we had become the squeaky-wheel parents that insisted on close supervision and tightened security, it obviously wasn’t enough.
The replicas did what we hoped they would. In fact, the more we fueled his obsession, the more it became old hat. Even so, we weren’t about to let our guard down. After that incident, we were able to enroll Connor into our county’s Project Lifesaver program, a tracking system typically facilitated by a local sheriff’s office. We also fought for a 1:1 aide and became even more “squeaky” about school security breaches, such as fence gaps and open gates. We looked at it as a wakeup call and felt lucky to have the resources we needed.
Around that same time, another little boy went missing in Michigan. Same age. Same diagnosis. He was found dead.
I’ve never had to know what it’s like to have my child still missing after the sun goes down, or hear unbearable news that my child is gone. I don’t believe it’s right that some children have access to safety resources, and others not. To me, it wasn’t okay that an AMBER Alert could have helped that young boy, but was never issued because he wasn’t abducted. Our children are dying alone, many without a voice to call for help. Every child should be given the resources to stay alive.
There will come a day when we won’t be here to make sure Connor’s safe. Should he ever have to rely on someone else after we’re gone, my hope is that person, and the general public, has a better understanding of this issue. Until that time, we’ll continue to help Connor learn ways to keep himself safe. Who knows, maybe one day he’ll find some dusty miniature signs in the attic and ask, “Mom, what in the world are these?” “Oh, just some old exit strategy.”
A new website, AWAARE.org, has been developed to address autism-related wandering. AWAARE is a collaborative project of AutismOne, Autism Speaks, Doug Flutie Jr. Foundation, HollyRod Foundation, National Autism Association and Talk About Curing Autism.
This is a guest post by Gene Bensinger. Gene is on the Advisory Committee for the Autism Safety Project, and a parent advocate on issues affecting adults with autism.
November 22, 2005. It was just before Thanksgiving. I was reading the Chicago Tribune when a headline caught my eye: “Autistic Man Dies in Police Struggle.” The incident had taken place just two days earlier in a much sought after group home located in Des Plaines, Illinois, a fairly affluent, safe suburb of Chicago. The article went on to describe one escalation after another as police tried to subdue the young man with autism, first in his house, then in the fenced-in backyard. The police were called to the home after the young man had severely bitten a caregiver who had tried to restrain him, the reason for which we’ll never know. 30-year-old Hansel “Yusuf” Cunningham never made it home to spend time with his family that Thanksgiving that year. I thought to myself, “How in the world could this have happened?”
As the parent of a then 12-year-old son, I had an emerging understanding that my easily redirected child would soon be a physically bigger and much more visible teen. He would experience the effects that “raging hormones” deliver during puberty. He would ultimately live as an adult in a community that might appear to him a hostile environment of loud noises, confusion, and chaos. So I decided to study the issue of autism safety in detail.
I learned that safety isn’t yet the important part of the autism toolkit it needs to be for everyone in our community. Unlike so many other issues, this is one where the autism community shares widespread agreement. Let’s build some bridges and speak with one voice so that all of us can live safer lives.
As I see it, a big reason that problems escalate out of control is that the behaviors we see in the autism community on a regular basis are the exact same behaviors law enforcement, security professionals, first responders, and others like school administrators have been instructed to recognize as potentially uncooperative, hostile, or even threatening. The problem is that the “book” they used for training is wrong. The good news is that many are rewriting their “books” and getting the training they need. But there’s still a huge gap to bridge when you consider the target audience we need to reach is over 2.5 million professionals!
Rather than risk triggering a tragedy like the one highlighted above, we as a community need to teach law enforcement and others who interact with people on the spectrum to recognize some simple, basic markers, use common, easy de-escalation techniques when needed, and call for help and support from trained specialists. But it’s also not fair to put all of the responsibility on others.
I don’t think we’re doing nearly enough in the autism community to safeguard ourselves or those in our care. Everyone needs to understand and work to mitigate the main risks people with autism may face, like wandering, drowning, and becoming easy targets of crime and abuse. These risks are very real and often appear when least expected.
That’s why I am thrilled that Autism Speaks stepped forward to create the Autism Safety Project, a stand alone website that links professionals, individuals with autism, parents, teachers, judges, and others to the tools they need. If you haven’t yet visited the site, please do! Then reach out and make sure the local professionals in your community or on your team receive specialized training. If they haven’t yet, ask them to! My experience has been, after they study the issue, the answer is always, “Yes.”
This guest is post is by Phillip Hain, Executive Director, Autism Speaks Los Angeles Chapter.
Only upon reading further – about ¾ through the story – did I notice the statement that the man had autism and learning disabilities. My heart instantly sank. I felt horrible about my preconceived thoughts, and now worse because of the added circumstance. Reading the subsequent details doesn’t offer much else. The officers say they heard a noise and the victim was acting suspiciously. He quickly approached them and they claim he appeared to “pull something from his waistband,” according to a spokesperson for the police department.
This occurred just past midnight so it was dark. I don’t think we’ll ever know the real facts. Is it fair to second-guess the officers who had to make a decision in one instant? But let’s pause for a moment and think – if the officers knew just a little bit more about autism, it’s possible the outcome may have been different.
Autism Speaks developed the Autism Safety Project specifically for this purpose. It provides First Responders with information and guidelines for communicating with individuals with autism spectrum disorder in emergency situations. In addition, the Los Angeles Chapter of the Autism Society of America has developed a training program especially for the Los Angeles Police Department and implemented it over the last year, going around to their various stations to teach officers how to recognize autism.
I have a 17-year-old son with autism. He is high functioning, somewhat independent, and likes walking around town. But that doesn’t shield him from the possibility of something going wrong in a moment. I shudder to think that he could have ended being the name in the paper.
The resources are there – but they need to be implemented to be effective. We can only hope that increased training, awareness and knowledge of police, firefighters and all emergency personnel prevent such a tragedy from occurring again.