The public asks a tremendous amount from our first responders. As we run away from danger, they are the ones who run in. Without hesitation they put themselves in the line of danger every day, and we as a society are forever grateful for their dedication to our welfare and to their potential sacrifice on our behalf.
We also require training for all first responders in every possible emergency scenario that they may face. Although first responders receive training on an ongoing basis, many have not received training to recognize and work appropriately with individuals on the autism spectrum. Given that there are many specialized techniques which may be necessary to utilize in a call to service which involves a person with an autism spectrum disorder (ASD), specialized training is essential.
Why is first responders’ autism training a critical part of their overall job training? Every year we lose precious children and adults due to adverse incidents which could have been avoided or greatly mitigated if first responder personnel had received the specialized training in autism spectrum disorders (ASD) that they needed.
When working in the field of autism it is easy to become sensitized to all things autism. However, the reality for the general population not personally involved with autism is that they may not even know someone identified with autism. Most of us, who even casually follow current events, have seen a news report or program about autism, but may not truly know details or specifics of the disorder or how they will be impacted by it.
One area the autism training course should cover deals with the individual on the spectrum’s attraction to water1. Like Alzheimer’s patients, some individuals with autism will wander away from their homes and caregivers. A first responder who may be called to help locate a missing child or adult must be made aware that the first line of defense should be to search for the missing person near water. This may be near a pond or stream, a neighbor’s pool or local drainage system. Every year we lose individuals on the spectrum to drowning who have wandered away. This is one of the greatest hazards faced by this population every day.
Another area where the proper training is essential is in restraint. Physical restraint is defined as one or more human beings applying their hands and/or other parts of their bodies to an individual’s body to prevent that individual’s freedom of movement. Mechanical restraint is defined as affixing any form of device to any part of another person’s body, again, to prevent that individual’s freedom of movement. This is another area where outcomes are directly related to training. Many individuals with autism have underdeveloped or poorly developed upper trunk areas. The trunk is the area around the upper torso, which includes the muscles responsible for the support of the lungs and diaphragm. Though the individual with autism may exhibit a level of strength which is outwardly powerful in response to an attempt to restrain, this may conceal the fact that this individual may still have a weak upper trunk. Here again, we lose individuals every year do to positional asphyxiation.
“Positional Asphyxia” is defined as death that occurs because the position of a person’s body disrupts the individual’s process of respiration (breathing). This may occur due to excessive or improper restraint, and it is very difficult to differentiate between the person who is resisting to escape from their restraint and the person who is frantically struggling to breathe.
A first responder may be in a situation where restraint is necessary for a safe resolution to a call to service. If a first responder must go “hands on” there are modifications that first responder should keep in mind. These include:
- Clearly stating what you are doing to the individual using simple sentences in easily understood language which is non-idiomatic
- Approach from the side
- Frequent change of position
- Frequent check of the individual’s vital signs for possible dangerous escalation, as this individual may continue to resist restraint even after being immobilized
- Do not apply pressure to the individual’s back while prone
- Most importantly, do not keep this individual face down
There is a dynamic and ever changing landscape for individuals with autism. As individuals with autism are successfully integrated into community life, the first responder will undoubtedly be called to service and face situations of direct interaction with individuals on the autism spectrum.
According to The Center for Disease Control and Prevention (CDC), the current prevalence of autism in the nation is 1 in 110. In New Jersey that statistic is 1 in 94 and it is startling and worrisome to know that in New Jersey 1 in 67 boys will be diagnosed with an autism spectrum disorder.2
The reality on the ground is that first responders of all types (police, firefighters, EMT’s and paramedics) will be on the front lines responding to calls for service which involve individuals on the autism spectrum.
Another part of first responder training which is vitally important to highlight is that, in any group of first responders, there will be those who are, or will become, parents of children with autism. In any training, it is vital to talk about the early warning signs of autism and give first responders the facts of what to look for in children. Whether we are welcoming new children into the world or we are welcoming grandchildren into our lives some of us will be caring for children with autism.
New Jersey Assemblyman Fred Scalera (D-Essex) sponsored Bill (A-1908) to establish an autism awareness training course that emergency medical technicians, police and firefighters are required to take. Scalera is also a fire chief in Nutley, New Jersey. The law sponsored by Assemblyman Scalera required Department of Health and Senior Services (DHSS) to create an autism awareness training course and curriculum. Prospective emergency medical technicians are required to complete the Office of Emergency Management (EOM) administered course prior to receiving certification. Current emergency medical technicians are required to complete a continuing education course in “autism recognition and response techniques,” as a requirement for recertification.
Bill (A-1908) was signed into law and authorized the development of a training program to assist first responders when encountering an individual with autism spectrum disorders. The online program, which is mandatory for all first responders to complete by February 2012, can be found at www.njlearn.com. The online program is an important first step, but all first responders are also encouraged to continue their learning with a face-to-face course as well. In the face-to-face presentation the first responders can ask questions to the instructor and get more comfortable with the course material.
One aspect of first responders training which cannot be overstated is the importance of community outreach. It is important for all first responders in a community to take a proactive approach to identifying the special needs of all their residents. If the first responders know in advance who is residing in their catchment area they can then be proactive in providing a safer resolution to the call to service. However, this process of outreach must go both ways. Families caring for loved ones with special needs, including autism, must be responsible partners as well and take the time to identify the special needs of your loved one to the first responders in your community. For example, if you have an eloper (someone who wanders away), have you asked the Fire Marshall to do a walk through in your home to give you suggestions on safely securing you home and property? Have you informed the fire department that you have a child or adult with special needs and detailed how they may react in an emergency situation? Have you taken your child to the police and fire station to introduce him/her to the officers to allow your child to recognize, know and trust the first responders in your community? Do the first responders know you and your family? If you have a child or adult with autism living in your home, go to the first responders and inquire whether they have taken any training courses in autism recognition and response techniques. If they have not, request that they do so.
There are many facets of first responders training which go beyond the recognition and response to emergency situations that need to be covered in any training program. Individuals with autism are not only often medically frail, but they may also be emotionally and physically vulnerable. These vulnerabilities make our loved ones amongst the most vulnerable in our society. Individuals with autism may be unduly influenced to commit an act which is unlawful as they try to please and be accepted by unscrupulous “friends.” They may not recognize their rights under the law, especially in interrogation or the administration of Miranda rights. They may want to end a situation, such as an interrogation, and falsely incriminate themselves by admitting to crimes they did not commit. There are many areas in which the first responder must be aware of regarding the unique profile of individuals on all areas of the autism spectrum. Continuing training which deals with all aspects of emergency response and law enforcement must be provided in an ongoing and comprehensive manner.
In the State of New Jersey, meaningful change happened when first responders were trained in the appropriate recognition and response techniques for individuals with ASD. This type of change is only possible when grassroots family-driven efforts are brought to bear on the legislative process. The delivery of service in a state can be affected in a thoughtful and positive manner, but only when stakeholders work together with their legislators to develop and utilize a well-defined plan and process. Success means that the entire community participates in, and benefits from, these efforts.
Whether it is an eight-year-old boy with autism in Idaho or a 22 year old adult with autism in New Jersey, one person who is disregarded, handled improperly causing injury, falsely imprisoned or even caused to die is simply one too many.
- Madeleine Goldfarb, MA is the Founder/Director of The Noah’s Ark Children’s Association and conducts First Responder’s training in Autism Spectrum Disorders throughout the State of New Jersey. Ms. Goldfarb also serves of the New Jersey governor’s Council on Research and Treatment of Autism. You may contact Ms. Goldfarb at noahsarkmail@gmail.com.
Footnotes
- Pickett J.A., Paculdo D.R., Shavelle R.M., & Strauss D.J. (2006). 1998-2002 update on – “Causes of death in autism.” Journal of Autism and Developmental Disorders, 36, 287-288.
2. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2002 Principal Investigators; Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders–autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR Surveill Summ. 2007 Feb 9; 56(1):12-28.
