John M. Sokol, Ph.D., is Captain of the Pembroke, Illinois Fire Protection District. He is also a part of the non-profit organization Ember911, which teaches children with autism the importance of safety and how to interact with firefighters and EMTs. The site Prevent-Educate.org educates firefighters and EMS personnel on autism awareness and interaction. As part of that training, Sokol's group has explained the importance of communicating with the parent or caregiver and involving them whenever possible. The next step, and equally important, is teaching parents and caregivers how to handle an emergency situation involving their family member with autism when a first responder needs to be involved.
From Dr. Sokol:
Even before an emergency occurs, call your local emergency dispatch system. It may be possible to store information about your child's autism and special needs ahead of time. In Illinois this is mandated under the Premise Alert Program. In short, the program gives the dispatcher ability to effectively deal with special needs individuals. The ability to effectively deal with special needs individuals is enhanced with knowledge or information. The ability to identify special needs individuals, their places of employment, educational facilities, and residences are valuable resources in instances when or if an emergency response by law enforcement or fire protection personnel or both are needed. (Source: PUBLIC SAFETY (430 ILCS 132/) Illinois Premise Alert Program (PAP) Act.) Other states also have mandated this. Check with your local authorities to see if your 911 dispatch system has the capabilities, and then take the time to get this important information into the 911 system. If your local system does not have this capability, or it's not required, start a grass roots effort to get this much needed life-saving program in place!
When an emergency does occur, and you call 911, be sure to mention that the individual involved has autism. Stress the importance of this information to the dispatcher, and be sure it is included in his or her initial dispatch. Unfortunately, not all dispatchers have had autism awareness training, but more and more are.
Your call will next be dispatched to the emergency service(s) needed-EMS, police or fire. The information you provided will help the first responder evaluate the situation before arriving on-scene, including taking actions like not using lights and sirens which could potentially trigger seizures or cause the individual to hide or shutdown, thus making a bad situation worse. When the first responder arrives, be prepared to take an active part in the situation. As a parent or caregiver, you know more about the individual's habits than anyone else. In cases of structure fires or wandering, the information you provide will help the first responders with locating the individual when time is critical. Share as much information as possible, including details such as your child's appearance, favorite places, past history of wandering or hiding. Let the first responders know what calms the individual, how to approach the individual and whether the individual is verbal or non-verbal. Once the individual is found, this information can help the first responder better interact with the individual.
If at all possible and depending on the situation, accompany the first responder in the ambulance. These are stressful events for everyone involved; your presence will help calm the individual making things easier for the first responder. After the individual has been found or rescued, please help the first responders keep an eye on them. The last thing you want is for the individual to go back into the situation they were rescued from.
The ambulance ride and the emergency room can be traumatic for an individual with autism. Once again your presence will make a big difference. Remind first responders to eliminate lights and sirens if possible. Upon arriving at the emergency room, information about your child's autism should already be in place. Nevertheless, it's a good idea to remind hospital staff to give the individual a quiet room away from the noise and confusion of the ER. Once again, keep an eye on them. Do not let them wander. This may be new situation and curiosity may get the best of them, or they may go try to seek a safe place they feel comfortable.
It is important that you work with family members that have autism on what is an emergency and how to dial 911. We teach dispatchers in our training that an individual with autism's emergency may not always be everyone else's emergency and not to discourage the caller. We teach dispatchers not to dismiss these calls as a prank or someone under the influence of drugs or alcohol.
Take your family member to the local fire or police station as a family fieldtrip and let them get acclimated and comfortable with the equipment and personnel. The uniforms can be distracting and down-right scary to some individuals. Recognizing and learning that the person behind the uniform or safety equipment is a friend may help when they are approached by the first responder in an emergency situation.
Even though I have not directly quoted any article or individual, I would like to give credit to those that have worked tirelessly in this field that I have been fortunate enough to work with. Individuals like Bram Hornstein, Bill Cannata, and Dennis Debbaudt to name a few.
