SOA You Get What You Get

Autism Tips for Emergency Responders: You Get What You Get!

A guest post by Wanda Refaely, ICE4Autism.

SOA You Get What You GetIt’s like my son used to say about the color of the popsicle he got at snack time in preschool: You get what you get! Emergency calls sometimes come in with lots of information, but most of the time they don’t. As a first responder, it’s your job to attend to whatever is thrown at you, with however much, or little, information you’re provided. This is, undoubtedly, one of the greatest challenges in the field.

Picture this: You arrive on the scene of a motor vehicle accident and the driver is unconscious. In the passenger seat is a young adult male rocking back and forth and repeating “cheeseburger, cheeseburger, cheeseburger”. You gently lean your head in and ask, “Are you OK?” The young man continues uninterrupted on his rant. “What’s your name?” you try again. “Cheeseburger” is all you get in response. You reach in and put your hand on the young man’s shoulder to calm him and he responds with a blood curdling scream.

Is the young man hurt? Has he suffered a concussion or brain injury? Can he even hear you? Maybe he doesn’t understand English? Could he be intoxicated, on drugs or is he mentally ill? Or… Maybe he has autism?

The techniques you implement and how you proceed will differ based on the response to each of these questions. In fact, how you assess the young man’s needs and condition may require an adaptation of your usual or customary protocols. But how do you know?

The best way to distinguish autism, as opposed to other possibilities, is through your powers of observation. The ability to recognizing the “signs” associated with autism is essential to responding appropriately. Though different in every person, autism is often characterized by communication differences, social challenges and unique – and often misinterpreted — behaviors.

A person with autism may exhibit repetitious behaviors – such as rocking, arm flapping or bouncing up and down; “echolalia”, the repetition of phrases or words and/or parroting back what someone has said to them; varied communication abilities which may require the use of a communication device; hyper or hypo-sensory responses including sensitivity to light, sound and touch; and an extreme pain threshold which may be unusually high or extraordinarily low. It is important to note, that autism is a spectrum disorder which means that it may be extraordinarily difficult to discern at all in some people while extremely severe in others.

All of this will all present added challenges for you, the first responder.

Getting back to our scenario, looking for the young man’s (and the driver’s) mobile devices and checking for an ICE (in case of emergency) app may be the single most productive action you take in attempting to figure out the young man’s needs. As the public’s reliance on mobile devices for everything from banking to restaurant reviews has blossomed, so has their use for safety purposes. The implementation of Bob Brotchie’s ICE concept – entering In Case of Emergency information in your cellphone — which went viral nearly a decade ago, has been broadly embraced around the world and is now highly prevalent. And, more specifically, the ICE4Autism mobile app, developed specially to address the unique needs of individuals on the autism spectrum is now used by those with autism, their families and caregivers. ICE4Autism can answer many of the pertinent questions that the driver may have been able to answer for you were she conscious: Who is the young man? Does he, in fact, have autism? How old is he? What is his blood type? Does he have any additional medical conditions? Allergies? How do you contact his emergency contacts? Are there any special instructions related to his care that would be helpful?

Proceeding with the young man’s care based on the valuable information gleaned from the ICE4Autism app is, obviously, preferred to proceeding “blindly”; but, you don’t get to choose – you get what you get.

You may need to move forward based on your observational assumption that the young man in our scenario IS on the autism spectrum. If so, turning OFF lights and sirens, for example, can dramatically reduce stress levels. Looking for and giving the young man what might be a “preferred item” may reduce his anxiety and thereby also improve his ability to respond and cooperate. Speaking in short, direct language and allowing extra time for him to respond will likely yield better results. And limiting physical contact to only the most essential preceded by an explanation of what you are about to do and what to expect are all good ideas.

Responding to a call involving a person with autism isn’t going to be a rare and unusual occurrence. The fact is that autism is the single fastest growing developmental disability in the United States today AND people on the spectrum are seven times more likely to interact with first responders. Being ready and knowing how to respond properly and safely to the unique needs and sensitivities of people with autism is now an essential part of the first responder job description because when the call comes in, you get what you get!


About Wanda Refaely

Wanda Refaely is passionate about and deeply committed to reducing the barriers to needs-conscious emergency and general care and treatment for individuals with an autism spectrum disorder. She is the founder of ICE4Autism, the ONLY autism-specific in case of emergency mobile app, and is an active contributor to the autism safety and emergency preparedness arena. Wanda’s involvement in the autism community began with her participation in the advocacy and lobbying efforts leading to the passage California’s autism insurance reform law (SB946). She continues to work as an independent consultant specializing in assisting autism treatment providers with their insurance contracting, credentialing and clinical audit needs. Wanda also volunteers as a board and executive committee member at Include Autism, a San Diego autism inclusion and education non-profit. She is a proud mom whose son has been, and continues to be, her inspiration, motivation and her greatest source of joy.

More information:

On the web:

On the App Store:

Via email:

On Twitter: @ICE4Autism

On Facebook: ICE4Autism Mobile App

ICE4Autism Home Screen

Weekly Autism Tips for Emergency Responders: ICE4Autism Interview

I’m so excited to have connected with Wanda Refaely, creator of ICE4Autism, the only Autism-Specific In Case of Emergency (ICE) App. This awesome app provides first responders and medical personnel with actionable information quickly and effectively.

For families,

it’s a fantastic way to be prepared for situations that we never think will happen but, in reality, could. Some features include:

  • How you communicate — includes a drop down menu of commonly used communication devices and languages, and a place to describe how you communicate and want to be communicated with

  • Your unique behaviors and triggers —  includes a drop down menu listing behaviors commonly associated with autism PLUS the option to enter your own details including telling first responders and medical staff how best to  respond to make YOU more comfortable

  • Important Treatment Information — describe any issues, concerns and sensitivities that could be vital to YOUR proper care and overall comfort level AND describe ways to reduce your anxiety

ICE4Autism can also send an emergency alert text message —  including your GPS location and a link to your location pinned on Google Maps — to your designated emergency contacts. Parents, spouses, caregivers and service providers can come to your side, advocate for you and help you through the ordeal.

For responders,

simply launch the ICE4Autism mobile app and you as a first responder, ER doctor, nurse or administrator have immediate access to the critical the information needed to treat the patient properly while helping to reduce what is sure to be a heightened level of anxiety.

Emergency situations are challenging for everyone. But add in sensory, communication and behavioral challenges, and an emergency can turn into a disaster for a person with Autism and the responders trying to help them.

Below is the video interview I did with Wanda, as well as the screen shots she mentioned in the broadcast. Please feel free to like and share the video, you’ll help more people be prepared for emergencies!

ICE4Autism My Autism

ICE4Autism Home Screen