It’s Simple Math: ICE + Autism = Better Care
Paramedics do amazing things every day; I know because I used to be one. They are often the first responders on the scene of a collision, fire, workplace accident or even a natural disaster. In addition to attending to the urgent medical needs of those on the scene, they are also charged with identifying their patients for notification purposes. The combination of figuring out how to treat a complete stranger properly, and how to contact their loved ones can present a host of complicated challenges.
Back in 2004, I had been using the casualties’ own mobile phones to try and ascertain who to inform. I wanted them to avoid a situation that I had personally found myself in years before – being a person who wakes up in the hospital, in pain, feeling frightened and alone. While reflecting on a serious traffic collision I had attended the previous day, I had my ‘light bulb moment;’ we needed a uniform method that both the public and first responders would adopt that would provide them with a way of accessing emergency contact information quickly – so the concept of ICE, In Case of Emergency, was born. My aim was for everyone to enter their ‘agreed upon’ emergency contact(s) information into their mobile phone by using the ICE preface thereby informing first responders of who to contact.
A few months later, in 2005, ICE went viral and I was absolutely ecstatic – both the public and the first responder communities had made giant strides in embracing the concept and fewer people were being relegated to the P/U (Patient Unknown) status. The concept that both sides, the public and the first responders, had a role to play in improving the outcomes of emergency situations took flight. As time passed, and mobile technology evolved, so did the use and implementation of ICE on mobile devices. The public’s reliance on their smartphones for everything from managing their finances to keeping their appointment calendars also led to the development of an array of ICE apps.
I am regularly approached with requests to review and assist with the development of ICE technology and recently Wanda Refaely, the founder of ICE4Autism, reached out to me. In her initial email she explained that her ICE app – the ONLY autism-specific In Case of Emergency mobile app – was specially designed to meet the unique needs of individuals with an autism spectrum disorder. She worked closely with autistic individuals and had incorporated what they deemed “essential” into the development process. I was intrigued.
It only took me a few minutes to conclude that ICE4Autism was a critical piece of the ICE jigsaw. The app contains enough, without being overwhelming, and is accessible to both user and emergency responder, be that pre-hospital or within facility. It is affordable ($1.99), intuitive, respectful – and most of all – of value. This app is a game-changer for anyone who has the potential to experience difficulties communicating their needs in the emergency scenario.
What makes ICE4Autism an “autism-specific” In Case of Emergency app?
ICE4Autism incorporates all of the basics of any good ICE mobile app including: the individual’s name, blood type, date of birth, a current photo and emergency contact information. In addition to that, Refaely placed the unique nature of autism – the fact that it is different for each person – at the core of her app. ICE4Autism enables the user (or caregiver) to input their own, specific information and to provide unique details about their needs. Though Refaely does provide sample text and ideas for what the user may wish to include, the app makes no assumptions or assertions.
Another important part in the app’s development process involved defining the most significant issues impacting a person with autism in an emergency situation. Communication differences were at the top of the list; the fear, unpredictability and chaos associated with an emergency situation can exacerbate existing communication challenges experienced by many individuals on the spectrum. ICE4Autism has an autism-specific widget, aptly labeled ‘My Autism,’ in which users enter details about how they communicate, and equally important, how they want and need to be communicated with. Having this information accessible with a simple tap on the widget can completely change – for the better – how a paramedic might interact with a frightened patient who is unable to communicate their needs directly.
The ‘My Autism’ widget also provides a platform for the user to inform emergency personnel about any unique behaviors he or she exhibits. This is of paramount importance to ensure that any self-stimulating or regulating behaviors are not misinterpreted as drug abuse or mental illness, for example, and, as a result, treated inappropriately. Information about sensory triggers and stressors, and how best to respond to them, is also part of ‘My Autism’. The simple act of informing first responders that the bright flashing lights on the emergency vehicles, for example, cause an extreme sensory response can dramatically, and positively, impact the care the person receives.
Another critical issue effecting individuals with an ASD in an emergency that Refaely addresses with ICE4Autism, is the ability to inform first responders of any comorbid diagnoses, medications and allergies. Imagine a scenario where an individual is in an accident and paramedics are unaware that he is allergic to latex. ICE4Autism has widgets for the user, to not only enter information about each of these topics, but to provide specific details about his/her reactions, dosages and responses. Again, the paramedic’s ability – and that of onwards care to access this information quickly and easily with ICE4Autism reduces the possibility of an adverse drug interaction or allergic reaction.
The ICE4Autism mobile app is relatively new, having been launched on World Autism Awareness Day earlier this year, and it has already garnered extremely favorable attention within both the autism and the first responder communities. Fran G., a San Diego mum and autism advocate, shared her take on ICE4Autist in a recent email:
“This app has made a HUGE difference in the life of my 19-year-old son with autism and in mine. Having ICE4Autism on his phone gives both of us more confidence. I know that if anything should happen he has a way of communicating his needs. And he knows that any time he feels anxious, he can send me an emergency alert and I’ll know exactly where he is. ICE4Autism is so cheap, easy to use and practical that everyone should get it!”
As a former paramedic, and in my second and current career as a counselor focused on helping people to understand themselves better and to overcome difficulties, the notion of providing individuals with easy and effective tools to improve their lives is near and dear to my heart. The ICE concept was, and remains, the cornerstone of my efforts to bridge the gap between the harsh realities of people enduring emergency situations and those doing their very best to help them. ICE4Autism is the building block in that bridge – for every individual with autism and their loved ones. I cannot stress enough, how important it is that everyone implement the ICE concept on their mobile devices. The more information first responders have about you and your unique needs, the better they will be able to care for you should the need ever arise. It is my sincere hope that you will never need it, but it is also my recommendation that ICE4Autism be a part of every autism family’s kit of “must haves.”
Bob Brotchie is the Founder of the ICE – In Case of Emergency – concept that received worldwide recognition in 2005. He is a former Senior Paramedic and has been delivering within Primary Health-Care for more than two decades. Following an award winning career – including three years as a HEMS medic, and many years as a manager and project lead – Bob retrained, and is now delivering counselling and psychotherapy services for adults and children with cognitive and behavioral needs from his private practice, Anglia Couselling, near Newmarket, Suffolk.
ICE – In Case of Emergency Website: www.incaseofemergency.org
Bob Brotchie on Twitter: @BobBrotchie (https://twitter.com/BobBrotchie)
ICE – In Case of Emergency on Facebook: https://www.facebook.com/ICEBobBrotchie
Anglia Counselling Website: http://www.angliacounselling.co.uk/
ICE4Autism Website: www.ICE4Autism.com
ICE4Autism on the App Store: https://itunes.apple.com/app/ice4autism/id969601780?mt=8
ICE4Autism on Twitter: @ICE4Autism (https://twitter.com/ICE4Autism)
ICE4Autism on Facebook: https://www.facebook.com/pages/ICE4Autism-Mobile-App/603395916458480
Contact Wanda Refaely, Founder of ICE4Autism – the ONLY autism-specific in case of emergency mobile app: wanda@ICE4Autism.com
This article was featured in Issue 38 – Keeping ASD Kids Healthy