Tag Archives: emergency responders

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5 Ways Autism Skills Can Help Emergency Responders On Scene

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The nature of my training classes unfortunately tend to focus on the struggles and deficits side of the autism spectrum, as this is the primary way for responders to quickly identify someone as autistic on the scene of a crime, fire, disaster or medical call and potentially adapt their response. In an emergency situation, being able to recognize the appropriate signs and adjust communication can be the difference between a potentially negative and positive outcome.

I tend to go a bit deeper in my weekly articles, offering more detailed techniques for de-escalating dangerous behaviors, discussing comorbid medical conditions for better patient assessment, proper protocol for handling service dogs, or explaining why people with autism are often drawn to water. What happens if we flip that proverbial coin for a minute and ask, how can someone with autism be helpful on scene?

People with autism display a wide range of intellectual abilities. Some show exceptional talents despite some functional challenges. Along with the struggles, autism can bring individual strengths along with special abilities, such as strong memory skills, math skills, three-dimensional thinking, musical ability, artistic ability, honesty, and the ability to intensely focus on an interest.

While only 10 percent of people with autism have savant syndrome (a condition in which a person with a disability such as an autism spectrum disorder demonstrates profound and prodigious capacities or abilities far in excess of what would be considered normal), many do have special abilities. These may include:

  • Calendar calculation – identifying the days of the week on which any date fell or will fall in a wide span of years
  • Memorizing large chunks of facts about specific subjects
  • Dismantling and reassembling complex machines
  • Working with computers

While verbal instructions are more challenging, people with autism do have advanced visual-spatial abilities, such as solving puzzles or matching items that display some sort of pattern.

How could these things help during an emergency call?

Autism Skill #1: Rote Memory Ability

An excellent rote memory – memorizing large amounts of material or storing huge lists of items in their minds and repeating them accurately can be a huge help when piecing together what may have happened on scene. This could be recalling details of an auto accident or trying to determine how a crime was committed.

Autism Skill #2: Details and Patterns

To piggyback on rote memory, the ability to notice small, individual details is a huge asset on any scene. While autistic individuals may not be able to see the big picture or piece together the information to determine meaning, they can not only recite details no one else may have noticed but often see a distinctive pattern in those details.

Autism Skill #3: Calculations

Some people with autism also have quick mathematical calculation skills – they’ re able to mentally add, subtract, multiply and divide large numbers at astonishing speeds. This could be helpful, again, in any line of questioning where numbers or specific times are important to the situation.

Autism Skill #4: Artistic Talent

Being masterful with expressing yourself through drawings can aid in finding out what happened on scene, especially if the person with autism is nonverbal. Even if they are able to communicate in a typical way, drawings can both relay missed details of the scene and the person’s perspective – how they experienced the situation.

Autism Skill #5: Musical Talent

How could someone’s musical talent possibly be of assistance during an emergency?

Many people with autism spectrum disorder have outstanding abilities in tone recognition; they can be highly methodical listeners and are able to access musical details more readily than others. The ability to mimic an exact sound they heard in perfect pitch – such as the order of numbers punched in a keypad – is definitely a skill that could come in handy on scene.

I know it can be challenging to communicate and interact with people with autism on scene, especially if they are experiencing sensory overwhelm from the noise and chaos of the emergency situation. But remember, autistic people are typically good-natured and honest, and almost always have a genuine desire to help. Why not welcome their skills and abilities? You may just end up with critical details that no one else was able to see!

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Emergency Responders: Why Address Sensory Issues First?

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Sensory Processing issues play a bigger role in the daily lives of those with Autism and Asperger’s than most people realize. No matter what behavior I’m addressing with my son or what I encounter on a call, I always start with reducing sensory triggers.

Years, ago, when I finally had a firm understanding of this why this works, I perpetually tried to explain it to the other adults, teachers, caretakers, and yes, even physicians in my son’s life, who insisted that my child needed to be medicated for hyperactive and impulsive behavior.

I remember waiting months to see a highly acclaimed pediatric neurologist before my son was officially diagnosed with Autism. He was four at the time. At our long-awaited appointment, we were in the waiting room for an hour and then the doctor’s office waiting for yet another hour. What four-year-old would NOT be climbing up the walls at that point?

The doctor came in and promptly spent 10 minutes with us.

“Write your name, son.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

“Ma’am, your son has ADHD, fine motor dyspraxia, ODD (Oppositional Defiant Disorder), and maybe some sensory stuff going on. Here’s your prescription for Adderall. See you in six months.”

Whoa… wha? Oppositional DEFIANT Disorder? He was FOUR! When my daughter was four I practically wanted to SELL her. (Kidding. Mostly.) Of COURSE he was hyper – we just waited TWO hours in a closed room to see this man. And what’s with the meds? No explanation of any of these “disorders”? No constructive suggestions? No support or help?

Nope.

I researched all of the labels that supposedly defined my baby boy. Yes, he was hyperactive, but the first one that really grabbed my attention was Sensory Processing Disorder. I went through checklist upon checklist and instantly started understanding my son and the world he lives in. Many of his “quirks” were a direct stress-response to how he interprets all the sensory input from his day-to-day environment.

I soon had an entire sensory evaluation done (I say “soon,” it was actually another nine-month waiting list), and then I learned so much more about how my son experiences the world around him, and how physically painful it could be.

Once I started to differentiate between “My body hurts, I’m exploding inside and need help” and “I’m being a boy and testing my boundaries” my whole world changed, and so did my son’s.

What Does This Have To Do With Responding To Calls?

I’m a big fan of Asperger Experts – two adults with Asperger’s Syndrome that have navigated their way through the roughest times of childhood and adolescence and are now helping parents and educators do the same.

They published a video called, “The Sensory Funnel.” Although they are primarily speaking to parents and therapists (or those themselves that have Asperger’s), the scientific explanation about what’s going on is invaluable. You get to hear an adult’s first-hand experience of what the world feels like and how he not only learned to cope with all his struggles but to thrive in spite of them.

For us as responders, I chose this video for you to see as an “abbreviated” plan on scene – an explanation of why it’s imperative to deal with the sensory triggers first. The video also illustrates why trying to go from the top of the funnel down will most likely not get results, especially when trying to gain compliance or diffuse a situation.

Let me know what you think!

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Autism Tips for Emergency Responders: Service Dogs on Scene

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If you have recently attended one of my Autism Training classes for emergency responders, you’ll recall a short video of a woman’s service dog that alerts to self-harm while she is having a meltdown. You can view that video here.

While I included that in my training to illustrate an adult with Asperger’s having a meltdown, someone in class brought up an excellent point: how do you, as a responder, recognize a service dog and what do you do with them on scene?

Project Chance explains that autism assistance dogs are somewhat unique. Unlike a guide dog that helps with physical tasks, autism assistance dogs mainly provide emotional support. They can also help with sensory processing issues by giving their handler a focal point, or a way to ground their sensory input when the environment is overwhelming.

Many autistic children especially have no concept of personal safety and are prone to wandering. A child may be tethered to the dog’s harness or the dog may be trained to alert to potential bolt risks.

Dogs can also be tasked-trained to use touch intervention, as well as pressure intervention and mobility assistance when repetitive or self-injurious behaviors occur.

How is a Service Dog Defined?

According to the Americans with Disabilities Act (ADA), service animals are defined as dogs that are individually trained to do work or perform tasks for people with disabilities. Service animals are working animals, not pets. The work or task a dog has been trained to provide must be directly related to the person’s disability.

Service animals must be allowed to accompany people with disabilities in all areas of a facility where the public is normally allowed to go.

The Ohio Department of Public Safety has a great downloadable trifold with tips for encountering service dogs. Here are some highlights from the brochure.

First and foremost, find out your agency’s policies on service animals! This includes how they define a service animal, information about applicable laws and how to comply with them, what to do if the handler is not in a condition to control the animal, proper movement and transport of the service animal, and veterinary facilities with whom there are established agreements for providing emergent care/boarding for service animals.

Next, you must determine if it is a family pet or a true service animal. The law permits you to ask these two questions only:

  1. Do you need the animal because of a disability?

  2. What tasks related to your disability has the animal been trained to do?

By Federal law, service animals are permitted to go wherever the public is allowed, including your ambulance. If it is not possible to keep a handler and their animal together (e.g., the handlers’ medical condition warrants transport by air or prevents the handler from controlling the animal) make sure a responsible party or someone with the handler’s permission can transport the animal safely and reunite them with their handler as soon as possible.

If the dog is being transported with the patient, load the dog last and unload it first, as this minimizes risk of injuring the animal and gives you needed space for maneuvering equipment.

If you must handle the dog, use the leash, not its harness. Use the side door of the ambulance for loading and unloading the animal; avoid open diamond plate gratings as they may injure the dog’s paws. If you need to lift the dog, put one arm behind the back legs, the other in front of the chest and gently lift. Offer to get food and any other supplies the dog may need before transporting.

Overall, try to accommodate the dog as you would a child alone with the patient. Take the dog with you and if the handler is unable to care for the dog at the hospital, attempt to notify a caretaker known to the handler for the dog, if possible.

You can download the entire helpful brochure here.

Have you encountered service dogs on scene? How did it go? Share your comments below!

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Trix Are for Kids, Autism is Not (Only)

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When I first began my Autism Training for Emergency Responders journey, my presentation focused heavily on children with autism, as that was my personal experience. This, of course, is well needed, but with 50,000 autistic teens transitioning into adults each year (with very few resources to aid that transition), my teaching has expanded immensely. Especially knowing that people with autism are seven times more likely to interact with emergency responders.

I have two teenagers – 13 and 17 – on the autism spectrum. My daily contemplations and challenges have gone from, “Please stop climbing on that thing, we’re going to get thrown out!” to, “Am I providing enough support to teach you the life skills you need as a young adult?”

Additionally, my 13 year-old is seven inches taller than me, has a mustache, and wears men’s large clothing (when he wears clothing at all). Despite his level of comprehension and response in an emergency situation, his size alone would warrant him being treated like an adult on scene, which has the potential to go downhill very quickly.

In 2000, 1 in 166 children were diagnosed with a form of autism. That figure has been climbing ever since, as we are now looking at 1 in 68 (1 in 42 boys). Here in metro Atlanta, that’s one child on every school bus. 1 in 42 boys will grow up to be 1 in 42 men.

You do not “grow out of” autism. Sure, with the right support and tools you can learn coping skills and methods to help improve your day-to-day living. But autism doesn’t magically go away when you turn 21!

The Centers for Disease Control says that the number of adults living with autism is expected to climb by about 700 percent by 2030. From 1990, when adult stats were first taken, the number of adults being diagnosed with autism has nearly tripled.

This does not even include the number of parents who, after receiving an autism diagnosis for their child, came to the realization that they, too, have autism but were never diagnosed.

Recognizing Adults with Autism On Scene

Emergencies are stressful for everyone! An adult with autism may react in ways that appear odd or threatening to a responder. It can be more challenging to identify on scene, and responders can be caught off guard if someone goes from “having it all together” to a complete autism meltdown in a short amount of time.

Remember, we always treat the patient or victim, not the diagnosis. However, here are a few common traits or behaviors that might help you recognize that your patient or victim has autism.

Body language/facial expression challenges. Neurotypical people often easily express themselves, including verbal and non-verbal methods. Adults with autism have significant challenges when it comes to interpretation and displaying types of non-verbal communication. They have trouble maintaining eye contact, interpreting facial expressions, and using motions and gestures. Remember to use direct words that have only one meaning when communicating so there is less chance for misinterpretation.

Sensory Processing challenges. Individuals with autism have either extreme or inefficient sensitivity when it comes to stimuli. While some autistic adults have learned to cope with sensory issues in their daily routines, an emergency situation will involve a ton of new smells, sounds, input, and sights, and they may be unable to process these sensory details adequately. Remember to reduce sensory triggers if at all possible (e.g., turn off lights and sirens, remove unnecessary personnel).

Empathy challenges. Adults with autism struggle with showing shared sensitivity of feelings with others and have difficulty processing others’ perspectives. On scene, this could present as if someone is “cold” or doesn’t care about the outcome of a family member, or sometimes even themselves.

It is typically taught that people with autism are incapable of employing “theory of mind,” or, in other words, unable to imagine anyone else’s thoughts and feelings. Empathy is more complicated than that. There is cognitive empathy, the ability to read other people’s feelings, but there is also affective empathy, the ability to share other people’s feelings. Just because someone with autism may not have the social/cognitive skill to read someone else’s feelings doesn’t mean they can’t feel someone else’s pain. Do not assume that a person’s inability to interpret nonverbal cues means that they don’t care and lack empathy.

Verbal challenges. Up to 40% of adults with autism never learn to speak. If they are verbal, they may have trouble maintaining a conversation, expressing their needs, or processing thoughts appropriately. Remember to look for or provide alternative communication methods if possible (pen and paper, sign language, smart devices).

Uncommon preoccupations. Many people with autism are extremely knowledgeable about certain topics, such as aviation, engineering, word origins, video games, or old movies. They may demonstrate hyper-focus on a particular area of interest, while showing complete disinterest or inability to follow along with other topics. If you are having trouble completing your patient survey or interview, try to engage the person in the topic they are preoccupied with to start the conversation rolling. Once you have gained rapport, you can gradually “fold in” the questions you need answered.

Routine challenges. Routines and rituals are very important to people with autism. They help to maintain order and predictability in their daily lives. This can be a challenge on scene, as most emergencies are not part of a schedule! You may need to swiftly remove someone from a dangerous situation or separate them from their caregiver depending on the emergency. If the scene is safe, allow them to maintain as much of their routine as possible. When you cannot, take a minute first to explain to the person what is about to happen before you act.

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Autism Tips for Emergency Responders: Autism and Violence

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My extended family doesn’t know a great deal about autism. My children and I don’t live near my mother or stepmother, and autism wasn’t even on my radar when my father passed away in 2001. The majority of information they receive about autism is what they hear in the news and any personal stories I choose to share about day to day living as a single mom with two autistic teens.

A family member recently asked me, “How bad is Justin?”

“What do you mean?” I replied.

“I saw on the news that a boy with autism got angry and bit his grandmother’s finger off. Is he violent like that? I’m worried.”

Officers frequently ask during my autism trainings if people with autism are more likely to abuse alcohol and drugs and commit violent crimes.

These are all great questions; however thanks to the media an already grossly misunderstood community is now feared and shunned as one being predisposed for violence, and even murder. Case in point, the Sandy Hook School shooting in 2012, the 20-year old shooter was diagnosed with Asperger’s Syndrome at age 13.

Did autism cause him to fatally shoot 20 children and 6 adult staff members?

No, it did not.

According to an article from Interactive Autism Network at Kennedy Krieger Institute,

“People with autism spectrum disorder (ASD) may have characteristics that could make them both more likely, and less likely, to break the law. On the one hand, they may have trouble with aggression, controlling strong emotions, and understanding other people’s perspectives. They may have challenging behaviors that could attract police attention. However, they also tend to find rules helpful, and laws are “simply social rules of a particular type” that they could be expected to follow.”

There are few case studies dealing with high-functioning autism and crime, and those in place are already biased, as the subjects studied were already in prison or a forensic hospital – they already had legal troubles. This indeed elicits a “chicken or the egg” argument, and cannot truly answer whether or not autism is a factor in violence and crimes. Studies would need to consider people throughout a community, not just those in jails, psychiatric hospitals or institutions.

It is my personal experience that most people with autism are good-natured, happy individuals that are focused on the “now” and typically like to follow rules, but are also wired to be who they are, unapologetically. There is no known evidence that autism causes violent criminal behavior.

Victims, Not Aggressors

 

The more likely scenario you will encounter? People with autism tend to be victims of crimes. Children with disabilities are about three times more likely to be the victims of abuse or neglect, and children with autism are bullied more often than other children.

Social and communication deficits may also place people with autism at a disadvantage when questioned by police. They may not be able to tell if an investigator is lying or manipulating them, resulting in potentially making a false confession. Officers that are not trained to recognize autism may also interpret lack of eye contact, vague answers are changing the subject as evidence of guilt, but these are typical autistic behaviors.

Impulses and Behavior Response

 

Autism Speaks also tells us that autism itself does not cause challenging behaviors. It is likely, however, that some of the underlying biological processes that result in autism might also result in behaviors that are outside of a person’s control—similar to how the tremors associated with Parkinson’s Disease are brought on by impulses that the person cannot direct. In addition, some behavioral responses are simply reflexes—no more of a choice than when your leg jerks upward when the doctor uses his hammer on your kneecap.

Autism aggression is less likely to result in violent behavior toward others; most often the automatic response to stressors (like emergencies) are repetitive or ritualistic – and sometimes self-injurious – behaviors that serve the purpose of self-calming.

SOA You Get What You Get

Autism Tips for Emergency Responders: You Get What You Get!

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A guest post by Wanda Refaely, ICE4Autism.

SOA You Get What You GetIt’s like my son used to say about the color of the popsicle he got at snack time in preschool: You get what you get! Emergency calls sometimes come in with lots of information, but most of the time they don’t. As a first responder, it’s your job to attend to whatever is thrown at you, with however much, or little, information you’re provided. This is, undoubtedly, one of the greatest challenges in the field.

Picture this: You arrive on the scene of a motor vehicle accident and the driver is unconscious. In the passenger seat is a young adult male rocking back and forth and repeating “cheeseburger, cheeseburger, cheeseburger”. You gently lean your head in and ask, “Are you OK?” The young man continues uninterrupted on his rant. “What’s your name?” you try again. “Cheeseburger” is all you get in response. You reach in and put your hand on the young man’s shoulder to calm him and he responds with a blood curdling scream.

Is the young man hurt? Has he suffered a concussion or brain injury? Can he even hear you? Maybe he doesn’t understand English? Could he be intoxicated, on drugs or is he mentally ill? Or… Maybe he has autism?

The techniques you implement and how you proceed will differ based on the response to each of these questions. In fact, how you assess the young man’s needs and condition may require an adaptation of your usual or customary protocols. But how do you know?

The best way to distinguish autism, as opposed to other possibilities, is through your powers of observation. The ability to recognizing the “signs” associated with autism is essential to responding appropriately. Though different in every person, autism is often characterized by communication differences, social challenges and unique – and often misinterpreted — behaviors.

A person with autism may exhibit repetitious behaviors – such as rocking, arm flapping or bouncing up and down; “echolalia”, the repetition of phrases or words and/or parroting back what someone has said to them; varied communication abilities which may require the use of a communication device; hyper or hypo-sensory responses including sensitivity to light, sound and touch; and an extreme pain threshold which may be unusually high or extraordinarily low. It is important to note, that autism is a spectrum disorder which means that it may be extraordinarily difficult to discern at all in some people while extremely severe in others.

All of this will all present added challenges for you, the first responder.

Getting back to our scenario, looking for the young man’s (and the driver’s) mobile devices and checking for an ICE (in case of emergency) app may be the single most productive action you take in attempting to figure out the young man’s needs. As the public’s reliance on mobile devices for everything from banking to restaurant reviews has blossomed, so has their use for safety purposes. The implementation of Bob Brotchie’s ICE concept – entering In Case of Emergency information in your cellphone — which went viral nearly a decade ago, has been broadly embraced around the world and is now highly prevalent. And, more specifically, the ICE4Autism mobile app, developed specially to address the unique needs of individuals on the autism spectrum is now used by those with autism, their families and caregivers. ICE4Autism can answer many of the pertinent questions that the driver may have been able to answer for you were she conscious: Who is the young man? Does he, in fact, have autism? How old is he? What is his blood type? Does he have any additional medical conditions? Allergies? How do you contact his emergency contacts? Are there any special instructions related to his care that would be helpful?

Proceeding with the young man’s care based on the valuable information gleaned from the ICE4Autism app is, obviously, preferred to proceeding “blindly”; but, you don’t get to choose – you get what you get.

You may need to move forward based on your observational assumption that the young man in our scenario IS on the autism spectrum. If so, turning OFF lights and sirens, for example, can dramatically reduce stress levels. Looking for and giving the young man what might be a “preferred item” may reduce his anxiety and thereby also improve his ability to respond and cooperate. Speaking in short, direct language and allowing extra time for him to respond will likely yield better results. And limiting physical contact to only the most essential preceded by an explanation of what you are about to do and what to expect are all good ideas.

Responding to a call involving a person with autism isn’t going to be a rare and unusual occurrence. The fact is that autism is the single fastest growing developmental disability in the United States today AND people on the spectrum are seven times more likely to interact with first responders. Being ready and knowing how to respond properly and safely to the unique needs and sensitivities of people with autism is now an essential part of the first responder job description because when the call comes in, you get what you get!

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About Wanda Refaely

Wanda Refaely is passionate about and deeply committed to reducing the barriers to needs-conscious emergency and general care and treatment for individuals with an autism spectrum disorder. She is the founder of ICE4Autism, the ONLY autism-specific in case of emergency mobile app, and is an active contributor to the autism safety and emergency preparedness arena. Wanda’s involvement in the autism community began with her participation in the advocacy and lobbying efforts leading to the passage California’s autism insurance reform law (SB946). She continues to work as an independent consultant specializing in assisting autism treatment providers with their insurance contracting, credentialing and clinical audit needs. Wanda also volunteers as a board and executive committee member at Include Autism, a San Diego autism inclusion and education non-profit. She is a proud mom whose son has been, and continues to be, her inspiration, motivation and her greatest source of joy.

More information:

On the web: www.ICE4Autism.com

On the App Store: https://itunes.apple.com/app/ice4autism/id969601780?mt=8

Via email: wanda@ICE4Autism.com

On Twitter: @ICE4Autism

On Facebook: ICE4Autism Mobile App

Autism and Temperature Regulation

Autism Tips for Emergency Responders: Temperature Regulation

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Autism and Temperature RegulationIt often takes an Act of Congress to get my son to wear a coat in the winter. I used to think it was stubbornness or laziness that drove him to his refusal. Eventually I started to realize that he simply doesn’t feel the cold.

How can that be, when the thermometer says it’s freezing outside? Sure, most of you know we live in Atlanta, so you think the point is moot, but I assure you it gets cold here. We even upon occasion get some (gasp!) snow! Like the time the entire state shut down from a mere inch or two, but I digress…

Atlanta One Inch of Snow

What’s really going on is another part of the sensory processing challenges present in individuals with autism – temperature regulation. Many people with an ASD are unable to set their internal thermometer at a comfort zone and can feel hot all the time even in cold weather or cold all the time even when it is warm. As their nervous system is on high alert and blood leaves the extremities to deliver oxygen to internal organs and muscles, many suffer poor circulation and their hands and feet are always cold.

I found out this summer that it can work both ways. I always believed that not feeling cold simply meant that my son overly warm most of the time (as evidenced by his insistence on stripping down to his boxer briefs the second we come home from an event or outing). Unfortunately, his body is unable to regulate cold AND heat, which also means that he can’t feel that he’s getting dangerously sunburned or that he’s on the verge of dehydration or even heat exhaustion.

Some children with autism have anhidrosis, which is the inability to sweat. Parents and caregivers need to take special precautions to prevent a heat emergency in these cases, such as spraying the child’s skin with water when outside, doubling up on fluids, and careful monitoring of the child’s internal temperature.

The Science Behind Temperature Regulation Issues

Research states that there is a noticeable size difference in the hypothalamus between neurotypical and ASD children. The hypothalamus is an integral part of the interoceptive sense and regulates:

  • The release of 8 major hormones by the pituitary gland
  • Body temperature
  • Food and water intake, hunger and thirst
  • Sexual behavior and reproduction
  • Daily cycles in physiological state and behavior also known as circadian rhythm
  • Mediation of emotional responses

Thermoregulation difficulties often accompany Asperger’s, SPD, Autism, ADHD, and Sensory Processing Disorders. Effective behavioral control of temperature depends on both an intact sensory-motor system and an ability to communicate perceptions.

As you respond to calls related to weather or environmental emergencies, keep in mind that your patient (or witness or perpetrator) may not experience temperatures the same way you do.

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Weekly Autism Tips for Emergency Responders: Co-existing Conditions

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Children with an autism diagnosis often have more concurrent medical and psychological or mental health conditions than their non-autistic counterparts. Because of this, they are also more likely to use EMS and healthcare services.

Learning to recognize the signs and behaviors of autism in a patient can be challenging enough; adding medical complications to the mix can further complicate the call. Approximately one third of patients with an Autism Spectrum Disorder (ASD) have seizures.

According to a guest post on AutismSpeaks.org by epidemiologist Laura Schieve, Ph.D., at the Centers for Disease Control and Prevention, her study concluded that children with autism, ADHD or other developmental delays were:

  • 8 times more likely than children without developmental disabilities to have ever had an asthma diagnosis,

    6 times more likely to have had eczema or a skin allergy during the past year,

    8 times more likely to have had a food allergy during the past year,

    2 times more likely to have had frequent severe headaches or migraines during the past year, and

    5 times more likely to have had frequent diarrhea or colitis during the past year.

    Children with autism were twice as likely as children with ADHD or other delays to have had frequent diarrhea or colitis during the past year and were seven times more likely to have experienced these gastrointestinal problems than were children without any developmental disability.

Other co-existing conditions commonly found with autism are tic disorders, like Tourette Syndrome, Attention-deficit-hyperactivity-disorder (ADHD), Obsessive/compulsive disorder (OCD), sleep disorders and mood disorders.

Obesity is another common issue, mostly due to poor trunk development, picky eating habits and decreased physical activity.

Medications, Pain Management and Field Impression

When in the field, be aware that standard dosages of medication for pain control may be ineffective for patients with autism. Be careful when relying on “outcome-based” pain management, as higher dosing may result in unintentional overdose.

Your patient with autism may also exhibit uncommon side effects or adverse reactions to routine drugs, and they may be on uncommon medications that may have interaction with drugs given in the pre-hospital setting.

Remember that it is not your job to diagnose an autism spectrum disorder or try to differentiate it from other conditions. The goal of learning to identify autism is solely to form a working impression that will help you use more appropriate assessment and treatment strategies. As always, you should treat the patient, not the diagnosis.

You should also always consider that there is a medical reason for the behavior, as stroke, brain injury, seizures and hypoglycemia may present with similar signs and behaviors. DO NOT IGNORE LIFE-THREATS just because your patient has autism or you suspect they do.

2014-12-28 11.57.09

Weekly Tips for Emergency Responders: Girls Have Autism, Too

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2014-12-28 11.57.09For nearly ten years I have been ensconced in the world of Autism. I have spent countless hours in research, created home therapies, advocated for my son, created a Blog about our journey to help other parents, and eventually birthed a training program for emergency responders. For the past few years I have trained many police and fire departments, disaster response groups, EMTs, hospital security officers and more.

At times during this path, I have come across some Autistic behaviors and traits that better describe my neurotypical daughter than my son. I quickly dismissed them as Autism, mostly because I was comparing them to the “classic” signs I see in my son and teach about. She is very verbal. She doesn’t have (many) sensory processing issues. She doesn’t seem to have gross and fine motor deficits (though neither of my children can ride a bike). She was fairly social in elementary school. She can dress herself and doesn’t need help bathing or using the bathroom. She understands sarcasm and others’ facial expressions.

Recently she approached me with comments about her social awkwardness and lack of a filter when she talks to people and wondered if she might have Asperger Syndrome (a high functioning form of Autism). We started to look at the big picture:

  • As a toddler, she lined up all her Fisher Price farm animals and each one sequentially received an equal number of rides in Farmer Brown’s tractor.
  • When she pretended to serve family members tea, it was repetitive and always in an order that she proclaimed. If someone switched places or spoke out of turn she shut down.
  • She would hide under the table or in her room if we had any kind of company at the house.
  • She walks on her toes almost 90% of the day when she’s up and around.
  • She would refuse to get out of the car if we arrived somewhere and it didn’t match the schedule or routine I first verbalized before we left.
  • She only eats four foods, and they have to be very specific types within those foods. She has gone five days without eating as a preschooler because I tried to make her try something new (“children won’t starve themselves”… uh-huh). She literally gags or throws up when trying a new food.
  • She abhors showers. Now as a teen, she takes them when she absolutely has to because she’s aware of what others think. But it’s still a struggle.
  • She won’t wear shoes anywhere unless she absolutely has to, and if she does they’re usually flip flops.
  • She missed a third of 5th grade due to social anxiety and “illness” that couldn’t be defined. By 6th grade I had to homeschool her after she completely shut down several weeks in a row during Middle School.
  • She has no interest in shopping, makeup, hairstyles, shoes, hanging out at the mall, or any other typical “girly” things.
  • She only wears comfortable loose clothing and leaves her hair down.
  • Her only friends live in the computer, except for a childhood friend she met at age 5 that sees her from time to time.
  • She HATES new stuff. A new smartphone or computer will cause her great anxiety because she likes things the way she is used to them and doesn’t do well with change.
  • She has joined multiple groups and classes and always quits after a few sessions due to social anxiety and perceived notions that everyone hates her.
  • She was diagnosed as OCD, which fits, but there are also caveats and certain missing pieces to this.
  • She wakes me up in the middle of the night citing crippling fears of random things that might suddenly go wrong and cause her to die or be injured. Once a thought like this gets into her head she can’t make it stop.

Of course there is nothing wrong with some of these behaviors, I am not making any kind of judgements… just looking at the big picture. I dismissed many of them as her being an “eclectic” child, while secretly blaming some on bad parenting: me giving her too much leeway because I’m compensating for being a single parent and having to work so much.

Then we starting doing some digging together, met with her counselor and she received an official diagnosis of Asperger Syndrome.

In Georgia, 1 in 39 boys are diagnosed with Autism, while it’s only 1 in 181 girls. Whether or not that means Autism is more prevalent in boys or that girls are not being diagnosed because it presents so differently, we don’t know right now. Either way, recognizing Autism in girls can be tricky. Here are some specific things to look for or be aware of:

  • Most often seen as just “eccentric” or “quirky”
  • More expressive than male counterparts
  • Retreat into films, books or characters
  • May be highly educated but slow to comprehend
  • May not do well with verbal instructions
  • Anxiety and fear are predominant emotions
  • Will typically shut down in social situations but can socialize in “small doses”
  • Often prefers the company of animals to humans

These traits may not ever come to play on the scene of a crime, fire, disaster or medical call, but the more you arm yourself with Autism education the better you can do a scene size up and make fast decisions. You never know when you see someone “not acting right” and something from a blog post or Spirit of Autism training class will pop for you and make a difference in the outcome of the situation.

Patient Assessment Autism

Weekly Autism Tips for Emergency Responders – Patient Assessment

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Patient Assessment AutismDuring a standard assessment in a conscious patient, we rely heavily on the patient’s communication – why EMS was called, what hurts, what happened, etc. This can become complicated when assessing a patient with Autism. Even a high-functioning, verbal Autistic patient may or may not physically feel pain. Sensory processing issues often include difficulty interpreting temperature and pain, and it’s hard to assess someone who can’t tell you what hurts!

Abnormal pain interpretation can sometimes mean a minor scrape or ache is perceived as a trauma or a major injury completely ignored. Traditional OPQRST surveys are not particularly reliable when someone has little sense of where their body ends and space begins and, most likely, what they ARE experiencing is not consistent with what you are observing on scene. Throw in communication deficits and sensory overwhelm of lights and sirens and being surrounded by strangers… patient assessment can be a sticky-wicket indeed.

The first thing you can do is try to remove sensory triggers if possible – remember that an ambulance setting can be extremely overwhelming for someone with Autism but so can the scene itself. Keep the scene as quiet and calm as you can.

Use the parent or caregiver and all the information they have to offer. Believe me when I tell you that most Autism parents have done their homework and know a great deal about their child’s challenges and medical issues. Establish a baseline behavior status to help in your assessment. I purposely did not say “baseline mental status” here because Autism is NOT a mental illness. While it is also not a behavioral issue, unfortunately we must rely on behaviors to help us identify Autism on a scene.

Remember that being touched may be perceived as pain, so do your best to engage the patient while triaging from distal to proximal. A Dollar Store slinky has done wonders for me – it distracts my patient while I get 85-90% of my assessment done before they realize what’s happening. (Don’t ever give a patient your cell phone or keys for this purpose, FYI!) Communicate what you are doing, whether they are verbal or not. A nonverbal patient can still hear and understand you. Bandages and adhesives may cause aggression due to sensory processing issues.

Assess thoroughly – look for less obvious injuries and DO expect the unexpected. Not long after I finished my first responder training, my son came running out of his room one evening screaming and raking his tongue. I quickly tried to figure out what was happening – did he bite it? Get stung or bitten by a bug he ate? Was there a toy in his mouth? In his other hand, I saw the glow-in-the-dark necklace from our earlier outing at Stone Mountain… bitten in half. The glowing liquid was all over his tongue and it was burning him. There was nothing about that in my first aid and responder manuals :) It was fine, by the way, Poison Control cleared him, but I never would have imagined looking for that kind of injury. Or the backward tumble out of the shopping cart at the grocery store, or the many times he’s wandered from school settings… but I digress.

Finally, during your assessment be aware of severe food and drug allergies as well as Pica Syndrome. Parents and caregivers are the best fountain of information, but in absence of that resource, there may be alternative IDs or apps that can provide you this valuable information in a snap.

Share your assessment tips and experiences – parents or responders – below. I love hearing from you!