ICE4Autism provides person-specific, actionable information for quicker more efficient and effective treatment of individuals with ASD
The successful outcome of any interaction between a subject/casualty and first responders depends, along with other variables, on the emergency response team’s rapid access to critical details about the individual. This is particularly true when the person has a unique set of needs about which the first responders may be unaware – such as those associated with autism.
Emergency response personnel are tasked with responding to ALL calls, including those involving individuals with special needs. They are expected to respond not only professionally but compassionately, an expectation that implies a seemingly allusive understanding of person-specific needs and sensitivities.
The Centers for Disease Control describes Autism Spectrum Disorder (ASD) as: “developmental disabilities that cause substantial impairments in social interaction and communication and the presence of unusual behaviors and interests”. Autism is a ‘spectrum disorder’ that affects individuals differently and to varying degrees meaning that no two people with autism are alike. Furthermore, the prevalence of autism is not affected by race, region, or socio-economic status.
Individuals with an ASD often suffer from additional co-morbid diagnoses which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more. And, in contrast to physical disabilities, in many cases without explicit knowledge or information, an onlooker will have no idea that a person has autism — and it is, therefore, often referred to as an “invisible disability”.
Since autism was first diagnosed in the U.S. its incidence has climbed from one in 10,000 to one in 68 children making it the country’s single fastest growing developmental disability. As children with autism grow up, they do not “outgrow” their autism, but rather develop, to varying degrees, an array of skills to cope with their unique communication, social and behavioral differences.
FIRST RESPONDERS AND AUTISM
Current statistics estimate that over the next 10 years half a million teens with autism will transition into adulthood. Furthermore, research has shown that individuals with autism are seven to 10 times more likely than their neurotypical peers to interact with first responders. Therefore the probability of interactions between emergency response personnel and those with autism increases with each passing day.
What does this mean in practical terms? Let us consider the following scenario:
A 9-1-1 call comes in that a young adult, 6 foot tall, 250 lb male has been involved in a vehicle vs. pedestrian accident. He is conscious but not responding to the good Samaritans’ questions.
When the first responders arrive, they start by asking the young man his name… no response. They ask him if he is in pain…No response. He becomes agitated and starts flapping his hands rapidly and repetitively.
Has the young man not heard the questions? Does he not understand English? Has the crash caused head trauma resulting in disorientation? Perhaps he is diabetic and low blood sugar is causing his confusion?
What should the first responders do? In the worst case scenario, they are left to guess, make assumptions and precede based on standard operating procedures that may, or may not, be the best course of treatment. Or, in the best case scenario, they have easy and efficient access to the information about the young man that would help them understand his needs and treat him properly.
THE ICE CONCEPT
The “ICE” — In Case of Emergency – concept is the brain-child of Bob Brotchie, a former senior paramedic and current psychotherapy counsellor. A combination of Bob’s professional experience and his own emergency incident, led to his “lightbulb” moment: a uniform method adopted by both the public and first responders for providing and accessing emergency contact information in case of emergency – ICE. The goal was for people to enter their emergency contact(s) information into their mobile phones using the ICE preface thereby informing first responders who to contact.
In 2005, only a few months after Bob first conceived of the idea, ICE went viral. It got the attention of both the general public and of the first responder community. As time passed and mobile technology evolved, so did the use and implementation of ICE on mobile devices. The public’s reliance on smartphones, along with their becoming an essential accessory to be kept on-hand at all times, yielded an array of ICE mobile apps. This 21st century implementation of the ICE concept broadened its capability and value: in addition to emergency contact information, many of the apps also store a variety of medical history, medications, allergy, insurance and other details that can help first responders in their assessment and treatment of injured, confused or unconscious patients.
Historically, first responders have looked for a wallet card or document in a subject’s wallet; now, with the advent of ICE apps, they have an additional potential resource on the person’s smartphone.
AUTISM, ICE4Autism AND THE EMERGENCY SITUATION
Easy and efficient access to specific information about an autistic person’s communication challenges and needs, their unique behaviors and triggers, sensitivities, allergies, medical information and their emergency contacts can dramatically improve the outcome of any emergency response interaction. ICE4Autism – the only autism-specific in case of emergency (ICE) mobile app – gives people on the spectrum and first responders a practical solution they’ve never had before. Instead of relying on efforts to directly communicate with the person – who may be unconscious, altered and/or have communication challenges – first responders can use ICE4Autism to quickly obtain the person-specific, actionable information they need to treat the individual appropriately.
Returning to our scenario, the ICE4Autism app could inform the responders that yes, in fact, the young man had heard their questions and did understand English, but that he needed a bit more time to process the questions and to respond. They might also learn that no, he does not have diabetes, but that he does have sensory integration dysfunction making the sirens and/or bright lights a contributing factor to his agitation and difficulty focusing. They may be informed that the repetitive hand flapping is a calming mechanism he implements and that they should allow him to continue unless there is a critical reason to make him stop. The app would also tell them how to contact the people who (most likely) know him best, can help with additional information, treatment decisions and, most importantly, can come to his side and provide him with the love and support that everyone needs and benefits from in an emergency.
To overcome the unique challenges presented by the increasing incidence of interactions between the first responder and autism communities, both parties benefit from the exploitation of newly-available 21st century tools. The broad utilization of the ICE4Autism mobile app throughout the autism community will enhance first responders’ abilities to provide needs-aware and person-specific care thereby improving outcomes and quality of care.
Emergency personnel have lauded ICE4Autism for its ease-of-use, practicality and innovation. Individuals on the spectrum have expressed their appreciation for app’s elimination of generalizations and assumptions about people with autism by enabling each person to include his/her unique and specific information. And, in awarding ICE4Autism the “Best of ICE” designation, Bob Brotchie, founder of the ICE concept, described the app as: Affordable, intuitive, respectful – and most of all – of value. ICE4Autism is a game-changer for anyone who has the potential to experience difficulties communicating their needs in the emergency scenario.”
Both first responders and members of the autism community should leverage new technologies and forward-thinking solutions to improve the outcomes of their inevitable interactions with each other. The integration of such tools will enhance the quality of care individuals with autism receive and the ability of first responders to do their jobs more effectively and efficiently.
Wanda Refaely, Founder & Chief ICE Cube:
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