Accidents happen. We all hope for the best, but being prepared for the unexpected is particularly important for people with autism. The heightened level of anxiety associated with an emergency can turn a challenging event into a nightmare, so being ready is of the utmost importance
Owing to the complex and individual nature of autism, informing a first responder or ER doctor that a patient is on the spectrum does not actually provide any concrete, actionable information. What they really need to know are the details of the specific patient’s unique needs and sensitivities.
Here is a list of 10 important “pieces of information” that will help individuals with autism get the needs-conscious, medically-sound care they deserve:
- The Basics
Basic information, including the person’s name, date of birth, blood type and a photo (for identification purposes) are essential.
These details should always be current and readily accessible in case of emergency.
- Communication Needs
The communication challenges often associated with autism can cause a significant barrier to proper treatment if EMS and ER staff are unaware of the patient’s individual needs and abilities.
How does the person communicate? Does he/she use an augmentative communication device? If yes, which one? Which language does he/she understand? Does he/she prefer sign language? Does the individual have any special instructions regarding communicating with them?
- Unique Behaviors and/or Triggers
Does the person engage in arm/hand flapping? Are they light or noise sensitive? Do they become combative when restrained? Do they have other sensory issues?
Information about the individual’s specific behaviors/triggers, what they mean and how best to respond to them constructively and with sensitivity, reduces the possibility of behavior being misconstrued. If left unexplained, an EMS or ER staff may feel the need to use restraints and/or sedation.
- Additional Treatment Information
Does he/she have an unusually high (or low) pain threshold? Does the individual respond in an unconventional way to pain? Does he/she have a fear of needles? How does he/she react in these situations and what should medical staff know about how best to help?
- Emergency Contact Information
Who should be informed that the person has been involved in an emergency? How can they be contacted?
The ability to reach emergency contacts can vastly improve the overall outcome of an emergency situation. Emergency contacts are likely to have a calming effect on the individual undergoing the emergency as well as having an intimate knowledge of the patient’s unique needs.
- Medical Conditions
Does the person have any co-morbid diagnoses? Always provide medical staff with as complete a medical picture as possible.
What medications is the patient on? What is the dosage and frequency he/she takes the medication?
Providing this information can make a huge difference in ensuring that there is no break in needed medications and that no detrimental interactions occur with any newly prescribed drugs.
Does the individual have any drug or environmental allergies? Are there foods they should avoid? What does an allergic reaction involve? What should be done in response to an allergic reaction?
Providing insurance information, even in an emergency, is a basic requirement. Readily accessible information should include: carrier, policy number, group number, name of primary insured and phone number.
- The Patient’s Regular Doctors
Who is the patient’s primary care physician? Does the person have additional providers? A psychologist? Psychiatrist? BCBA? Physical and/or occupational therapist? And how can these providers be reached? The involvement of a patient’s own doctors and providers can both improve the care they receive and reduce the patient’s anxiety.
Even in an ideal situation — which an emergency is anything but — being able to simply “come up” with these details and rattle them off without a hitch is virtually impossible, so it’s important for folks on the spectrum and their families to plan ahead.
An ICE (In Case of Emergency) Card, kept in the person’s wallet or safety pinned-inside a garment, may be a good idea. However, as the use of smartphones has become more prevalent, emergency responders are now being trained to look for an ICE (in case of emergency) mobile app on the person’s device. A new app, ICE4Autism, specially developed to address the unique needs of individual on the spectrum in emergency situations, stores all of their essential information directly on their iPhone or iPad. The app provides an easy and efficient method of providing first responders and medical staff with the information necessary to provide the patient with more needs-conscious care.
Bottom line is that accidents and emergencies will happen and they will be a challenge. But, being prepared can make a huge difference. So, take a few minutes, get your ducks in a row and be sure that you and your loved ones with autism have what you need to make getting through an emergency just a tiny bit more manageable. You’ll be glad you did!
Wanda Refaely is a San Diego-based independent consultant specializing in autism treatment provider insurance credentialing, contracting and audit preparation. She recently developed and launched ICE4Autism – the ONLY autism-specific in case of emergency mobile app – in an effort to ensure that individuals with autism receive the needs-conscious medical care they need and deserve. The app, which is compatible with iPhone, iPad and iPod Touch, takes the guess-work out of knowing how a patient communicates, what sensory issues may exacerbate an already stressful situation, how to contact emergency contacts, and what unique concerns are of particular relevance to their care. ICE4Autism also stores information about their medications, allergies, doctors and providers, and insurance. It is Wanda’s hope that reducing the current barriers between emergency medical staff and the unique and specific needs of patients with autism will result in improved quality of care through greater understanding.
This article was featured in Issue 40 – Conquering Stress