Today, over 80 area public safety officials are attending the Autism Recognition Response & Risk Management Conference host by the Charlotte Police & Fire Academy.
The rate of autism spectrum disorders (ASD) has grown to one in every 110 births. Research shows that as emergency services personnel, your chances of encountering someone with autism has greatly increased. Special training has been developed in order to give you a better understanding of how to interact with children and adults who are affected by ASD. The NC Office of State Fire Marshal has partnered with the Autism Society of North Carolina and the Autism Research Institute to bring this training at a conference.
Some of the speakers at the conference will be:
Bill Cannata is a Captain with the Westwood MA. Fire Department. He is the Autism and Law Enforcement Education Coalition Coordinator (ALEC). The Autism and Law Enforcement Education Coalition, “provides training to First Responders so that they are able to recognize situations involving children and adults with Autism Spectrum Disorders (ASD).”
“The ALEC program began in 2003 as a collaborative effort of the South Norfolk County Arc Family Autism Center and the Norfolk County District Attorney’s Office. ALEC training helps foster a deeper understanding of Autism Spectrum Disorders among public safety and law enforcement personnel. Training is available for Police Officers, Firefighters, EMTs, Paramedics and Hospital Emergency Room Personnel, using curriculum and videos specific to each group. Presenters are First Responders with direct knowledge of Autism Spectrum Disorders through a family member. Because of this personal knowledge, in addition to their specific professional background, they are able to answer questions on a wide range of possible situations. The goal of ALEC training is to provide additional tools for First Responders to use in assessing the risk of a situation.”
“Dennis Debbaudt is the proud father of Brad, a young man who has autism. A professional investigator and law enforcement trainer, Dennis has authored or co-authored over 30 articles and books since 1993. He has presented at conferences sponsored by the Autism Society of America and its chapter organizations, Autism Network International, National Autism Association, Organization for Autism Research, and many additional conferences. He has trained with NYPD’s Emergency Services unit, is a cited Autism & Emergency Preparedness Subject Matter Resource at the Department of Homeland Security web site Lessons Learned Information Sharing, has consulted to ABC News 20/20 for a segment on autism and false confession, and is an adviser to the Autism Society of America.”
Kimberly S. Taylor
“Kimberly S. Taylor is very active in the community, particularly in raising awareness of autism. She is a national board member of the Autism Society of America and past chair of the Government Relations Committee. She is presently chair of the Safe and Sound Task Force of the Autism Society. She has been appointed by the speaker of the N.C. House of Representatives for three consecutive years to the N.C. Joint Legislative Committee on Autism and First Responders and travels throughout the country training first responders about recognition and response to individuals on the autism spectrum. She has been a recipient of the President’s Award from the Autism Society of North Carolina.”
As some of my followers know, I find Autism a worthy cause to be involved in. Autism presents with a variety of symptoms some of which could be associated with other issues. First responders should know what Autism patients look like to better treat them.
What is Autism?
Autism falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.” Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 100 births (Centers for Disease Control Prevention, 2007). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise. Autism (or ASD) is a wide-spectrum disorder. This means that no two people with autism will have exactly the same symptoms. As well as experiencing varying combination of symptoms, some people will have mild symptoms while others will have severe ones.
How common is Autism?
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.
Information provided from Autism Speaks website
Autism 101 for EMS Practitioners:
- Individuals with autism cannot be identified by appearance. They look the same as anyone else. They’re identified by their behavior. Autism is a spectrum disorder. It presents differently in each individual. What works for one individual with autism may not work for another.
- 50% of individuals with autism are nonverbal throughout their life span another 20% may present as nonverbal when highly stressed.
- 30 – 40% of individuals with autism will develop epilepsy or some other seizure disorder during adolescence.
- Individuals with autism have a difficult time reading facial expressions. The Wong-Baker Faces Pain Rating Scale will NOT be an accurate measurement for pain.
- You may encounter Autism by one of its many other names such as, ASD -, , - Pervasive Developmental Delay, PDD NOS- Pervasive Developmental Delay Not Otherwise Specified and of course Autism.
- Some individuals with autism do not have a normal range of sensations and may not feel the cold, heat, or pain in a typical manner. In fact they may fail to acknowledge pain in spite of significant pathology being present. They may show an unusual pain response that could include laughter, humming, singing and removing of clothing.
- Individuals with autism may engage in self stimulatory behavior such as hand flapping, finger flicking, eye blinking, string twirling, rocking, pacing, making repetitive noises or saying repetitive phrases that have no bearing on the topic of conversation. This behavior is calming to the individual, even if it doesn’t appear calming. They may repeat something you said or something they heard over and over and over again. This is called echolalia and can be calming to the individual. If these behaviors are NOT presenting as a danger to themselves or others it is in your best interest not to interfere with it. Allow THE BEHAVIORS to continue as long as the individual is safe and is safe to be around. Trying to stop the behaviors will increase anxiety and may cause the individual to act out aggressively
- Individuals with autism often have tactile sensory issues. Band-aids or other adhesive products could increase anxiety and aggression.
- When restraint is necessary, be aware that many individuals with autism have a poorly developed upper trunk area. Positional asphyxiation could occur if steps are not taken to prevent it: frequent change of position, not keeping them face down. Individuals with autism may continue to resist restraint.
- Move slowly, performing exams distal to proximal. Explain what you plan to do in advance and as you do it.
- Explain where you are going and what they may see and who might be there. This may avert unnecessary anxiety and/or outbursts or aggressions from the patient. Individuals who appear not to understand may have better receptive language, which is not entirely evident.
- Speak simply; give plenty of time for an individual with autism to respond to questions. A 3 – 4 second delay is not uncommon. Repeat your question and wait again. Use a calm voice. Be aware that some autistic persons’ use of “yes” and “no” to answer questions may be random and misleading. Try inverting your questions to validate the patient’s response.
- Expect the unexpected. Children with autism may ingest something or get into something without their parents realizing it. Look for less obvious causality and inspect carefully for other injuries.
- If possible ask a caregiver what the functional level of the individual with autism is, then treat accordingly. Stickers, stuffed animals and such which are used to calm young children may be helpful even in older patients.
- If a caretaker is present, allowing the caretaker to ask the questions involved in an exam may increase the likelihood of getting information from the person.
- Allow a caretaker to ride with the patient if possible. This will reduce anxiety and make your job less difficult.
- Don’t presume a nonverbal child or adult who seems not to be listening, can’t understand.
- Individuals who present as nonverbal may be able to write or type responses. Provide paper and pen or laptop for the best chance of getting the information that is needed.
- Attempt to perform exams in a quiet spot if at all possible, depending on the severity of injury and safety of the scene. Demonstrating what the exam will consist of on another person first may help the person with autism have a visual knowledge of what your intentions are.
- Emphasize the comfort & reassurance repeatedly
OTHER HELPFUL INFORMATION AND IDEAS
- When possible avoid use of sirens and flashing lights. Sound and light sensitivity is common in Autism.
- Alert Emergency Room (ER) personnel to upgrade triage for child or adult with autism even if injuries are relatively minor. Having the person wait for medical attention may cause avoidable disruptions in the ER. Expect the sensory stimulation of the ER room such as equipment, lighting, noises, aromas and commotion to cause a negative escalation of behavior. Upgrading triage will save valuable ER time and resources.
- If possible communicate with receiving hospitals before arrival. Request a quiet isolated area or room for the patient with autism.
- Some autistic persons will be terrified by restraint systems used in ambulance transfers. Ideally, explain and get consent from the patient or guardian before attempting to strap onto a KED or stretcher.
- An individual with autism may not respond to directives, and that can be because they don’t understand what’s being demanded of them, or even just because they’re scared– the fact that they’re scared is the only thing they will be aware of — they may not be able to process language or understand a directive when fearful.
- They may fixate on or stare at an object in the room (or on your body — a badge, earrings, buttons…)
- Whenever possible, avoid touching these individuals. Some, but not all, individuals with autism will become more agitated and possibly aggressive when touched. Tell them what you are going to do.
- Identification can often be found on individuals with autism by a Medic Alert Bracelet or necklace used in a different way. Some families may thread the ID into a shoelace, into a belt, or as a zipper pull. A business card with personal information may be in a pocket or wallet.
Compiled by Susan F. Rzucidlo with the help of professionals and families across the nation.
If you are compelled to support financially you can make a donation HERE. This link will take you to the donation page for the 2011 Walk Now for Autism Speaks. “Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.”
More information from the Autism Safety Project…
In response to an emergency, EMS workers are often the first people at the scene. As they attend to the person or people involved in the crisis, they may not be aware that the individual has an autism spectrum disorder. If this is the case, the EMS worker will need to respond in a different way, while providing the quickest and most efficient care possible. Sometimes the ability of these EMS workers to respond in an effective timely manner will save the individual’s life. Since individuals with autism spectrum disorders may respond differently to certain stimuli and medical examinations, it is crucial for EMS workers to be able to recognize certain signs that may indicate the individual is on the spectrum and alter their method of treatment accordingly.
Resources for EMS
- Autism Alliance for Local Emergency Responder Training – www.AutismAlert.org
- Avoiding Unfortunate Situations – policeandautism.cjb.net
- Select Autism Merchandise – www.SelectAutismMerchandise.com
- The Law Enforcement Awareness Network – www.leanonus.org
- The Autism and Law Enforcement Education Coalition – www.sncarc.org/alec.htm
- Autism Risk and Safety Management – www.autismriskmanagement.com
- Community and Law Enforcement Aware Response – www.clearscv.org
- Project Lifesaver – www.projectlifesaver.org
- Autism 101 for Fire and Rescue – www.autismlink.com/pages/emergency_firerescue
- Caretrak Systems – www.caretrak.com
- Autism Society of America – Information for Paramedics and Emergency Room Staff (PDF)
- Autism 101 for EMS – www.autismlink.com/pages/emergency_ems
- Disaster Prep – (PDF)
- ALEC Brochure – (PDF)
- Seeing an Invisible Disability: Autism Spectrum Disorder Awareness - (PDF)
- Fire Prevention Criteria on which to base an Autism Protection Program – (PDF)