Nonverbal Autism

7 Tips for Communicating with a Nonverbal Autistic Patient

Nonverbal Autism

Just because a person can’t speak doesn’t mean they have nothing to say.

Communication is a basic human need. In fact, it falls fairly predominantly in the middle of Maslow’s Hierarchy of Needs, under “Social Belonging.” The ability to communicate makes it possible to exchange opinions, thoughts and meanings, enabling us to express ourselves and show our own points of view.

Autistic people with little to no speech have the same communication needs as the rest of us! As I teach in my autism training for emergency responders course, there is a huge misconception that being a nonverbal autistic is synonymous with “low functioning” autism, or even having a low IQ. In my experience, this couldn’t be further from the truth.

Nonverbal people often have extremely vibrant imaginations, intense emotions, passionate interests and a brilliant intellect. They just have to work a little harder and more creatively to convey these things in a neurotypical society that relies on spoken words and often-misread body language.

Communication on scene

When you arrive on a scene as an emergency responder, communication with your patient is vital. Where I work, I frequently face language barriers, making it challenging to obtain key information in order to treat the patient with the right protocols and do no further harm. The situation is magnified because the patients and their family members typically don’t understand what I am asking them, nor can they communicate what they are feeling and experiencing, and what medical interventions they need from me.

That’s one advantage (and another debunked myth!) of communicating with a nonverbal person on scene – nonverbal DOES NOT EQUAL non-hearing. This is a huge plus when your patient understands what you are asking.

Knowing this, here are some tips to communicate with a nonverbal autistic on scene:

  1. Use the caregiver. Find out from the caregiver if you can: what is their primary means of communication – what kinds of body language are they familiar with? Do they clap for yes? Do they use sign language? Gestures? Most times, family members are a WEALTH of knowledge on scene when it comes to autism.
  2. Seeing eye to eye. People with autism may not give you direct eye contact, but simply sitting or kneeling so you are at the same level as your patient speaks VOLUMES in gaining rapport. Sometimes that’s all it takes to help alleviate the fear of an emergency situation, therefore helping to get the person out of defense mode and more able to communicate with you in their own way.
  3. Narrate. It may sound silly, but even if you can’t communicate with your patient and get no response whatsoever, remember THEY CAN HEAR YOU. Unless it’s a critical patient, I will always announce exactly what I’m about to do to a patient, and continue to ask questions as I’m doing it, looking for any sign of understanding in their face or body language.
  4. Offer choices. Asking a nonverbal patient, “Do you want X (and point to or hold up what you are referring to) or Y? (point to or hold up the alternative choice)” can open lines of communication and help them feel more in control of the situation. Remember, the less they feel in control of what’s happening around them, the more a complete shutdown of the nervous system is imminent.
  5. Pen and paper. Simple, simple, simple… always keep a notebook and pen in your pocket! Sometimes even adults with autism that are verbal lose their ability to communicate under distress. The opportunity to write down their needs can make the scene run safely and smoothly.
  6. The Sign Expressions Language Mini Chart for Emergencies. This mini chart includes photos, words, and phrases to help facilitate communication during an emergency, including HELP, INTERPRETER, ALLERGIES, the Alphabet (Spanish and English) and Numbers. Our trilingual sign language mini chart is pocket sized (4″ by 6″) and include many important words to use during an emergency situation by First Responders, Health Care Professionals, and many others.
  7. Phone it in. Okay, not literally, but… our smartphones have become almost necessary on scene these days. They help us with language interpretation, drug calculations, pregnancy due dates, and of course, patient reports en route to the hospital. It may be helpful to also have an app for nonverbal autistics on your phone. Here is a list of apps available through iTunes, as well as Google Play.

Over to you…

Have you encountered a nonverbal autistic child or adult on scene? What worked for you? Share by commenting below!

autism wandering

Emergency Responders: 7 Things You NEED to Know About Autism Wandering

autism wandering

As an autism mom, worry and fear can be my constant companions. My entire life can change in the blink of an eye, especially because my child wanders.

My son has been wandering since he could walk.

One particular time, he was playing with the hose in the front yard. Wearing no shirt or shoes, he didn’t have a care in the world. He loves water. Seconds earlier, I had checked on him through the kitchen window and he was fine. Then his sister went outside and they got into a small scuffle… she told him to “get lost.”

People with autism are very literal. That’s exactly what he did.

In less than two minutes he was GONE.

I activated 911 and had the whole neighborhood searching for him. 3-1/2 hours later he was found several blocks away under a bush. I shook him and hugged him and asked what on earth he was thinking! He only replied, “My sister said get lost.”

My son, now 14, is nine inches taller than me, has a mustache and wears men’s large sized clothing. While he wanders more “online” these days than out of the house, it is still challenging to keep him safe, especially if we go to public events and gatherings.

I have multiple stories of “close calls” like this. As an emergency responder, I’ve been tasked to find missing children at festivals and responded to autism-related EMS calls. If you’re a first responder, here are 7 things you need to know about wandering.

  1. It can happen in an instant. Just like my story, thousands of autism parents have literally “blinked” and had their child disappear on them. It is beyond terrifying. Know that children with autism are not being manipulative, calculating, or trying to get out of a test at school… something catches their eye, or they are experiencing sensory overwhelm, and they run.
  2. It’s more common than you think. The National Autism Association cites that 49% of autistic people are prone to wandering away from a safe environment, which is nearly four times higher than their neurotypical siblings. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers. 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering. 40% of parents have suffered sleep disruption due to fear of elopement.
  3. They are drawn to water. In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. In my Autism Training courses I teach parents and emergency responders to search water first if a person with autism goes missing. This includes rivers, pools, lakes, ponds, and even fountains. For more information on WHY they are drawn to water, read this article.
  4. They may not seek help. Don’t assume wandering is a crisis or emergency to someone with autism. They may be perfectly happy in their own little world and not seek assistance just because they are “lost.” I’ve seen cases where an autistic child was hungry, walked into a strange family’s house and sat down at the dinner table! If you ARE searching for a missing person with autism, don’t discount looking in tight spaces or odd locations simply because a reasonable person wouldn’t go there. I’ve witnessed children found between mattresses behind a dumpster and inside a hay bale.
  5. They may be nonverbal. Even if a child (or adult!) is typically verbal, under the duress of an emergency they may not be able to communicate their needs. In fact, over one-third of autistic people that wander cannot communicate their name or address. Look for alternate IDs, such as bracelets, shoelace tags, phone apps, or QR codes to help you identify someone and get their medical history and caregiver contact information stat.
  6. If there’s a reason, it probably seems trivial to you. The other night, at approximately 4 am during my shift, my ambulance was parked at a convenience store. My partner and I were standing outside, enjoying the fact that we finally got to stop for a long-awaited cup of coffee, when a 15 year-old boy walked up to us. He asked if we could call his mom and apologize for him for not doing the dishes. He said, “Please tell her I’m sorry and I want to come home.” I saw him tapping his index fingers together repeatedly (“stimming“), recognized some of his other behaviors, and immediately identified him as autistic. After some careful questions, we discovered that he failed to do the dishes 12 hours ago and was so upset that he left home. He had been wandering the streets of Atlanta and riding local trains on and off since 4 pm that afternoon. Luckily, we were able to contact his parents and they immediately came to pick him up. They both cried tears of joy that he was found safely.
  7. Parents may be afraid to call 911. The parents from the situation above had been driving around all night looking for their son. They told us that they were, “…about to call 911” when they got our phone call. As a responder, you are probably thinking, “WHY DID YOU WAIT SO LONG!” But as a parent it is scary. You want to believe they are right around the corner. You want to believe they’re hiding in the house somewhere, playing a terrible joke on you. You want to believe you can handle it yourself before getting public safety involved. There is a stigma around “losing” a child. Law enforcement doesn’t yet understand all the nuances and variables of autism. I’m not saying parents are RIGHT to think and feel this way, I’m just saying these are thoughts that go through our mind. It does not necessarily indicate abuse or neglect, so please, as a responder, consider the big picture and dig a little deeper if you are involved in a situation involving a wanderer.

For more information on autism training for emergency responders, wandering, or safety tips, contact Debi@SpiritOfAutism.org.

autism personal space

Autism: Don’t Stand So Close to Me

autism personal spacePicture this: you respond to a call for a 26 y/o male “not acting right” (that’s about the extent of information WE get from dispatch, anyway ;) ). You arrive on scene and are immediately approached by a 5’9” 230-lb male who won’t make eye contact or respond to his name. He proceeds to get too close, won’t slow down or stop on your command, and maybe even reaches out and tries to touch your arm.

As an EMS provider or law enforcement officer, this situation would immediately be perceived as an aggressive threat and could go south very fast.

Regarding body proximity, responders are often faced with the reactionary gap – the human factors formula that compares action vs. reaction – when assessing situations like this on scene. The closer an assailant is to you, the less time you have to defensively react to any aggressive behaviors or actions.

When an emergency responder experiences a threat, it takes on average .58 seconds to assess and determine if the threat is real, then an additional .56 to 1.0 seconds to make a response decision. We as providers have to fall upon one of five possible responses to threat: defend, disengage, posture, hyper-vigilance or submission. I’m sure you can figure out which one most public safety professionals embrace.

So what if the person was autistic? What if they didn’t understand where their body ends and space begins? What if body proximity, spatial awareness and proprioceptive dysfunction came into play and they had no malicious intent and no idea their actions were perceived as threatening?

Does that mean you should leave yourself unprotected or allow these behaviors on scene? Of course not. But let me explain.

There are four main categories of proxemics:

  • Intimate Distance (touching to 2 ft)
  • Personal Distance (2-4 ft)
  • Social Distance (4-12 ft)
  • Public Distance (>12 ft)

Although seemingly effortless to most people, judging the right distance to stand from someone is a complex and dynamic skill. It can depend on many factors, such as your relationship to the other person, your age, gender, emotions, and culture. Your body proximity is a form of nonverbal communication that, in turn, says a lot to another person.  Standing too close to someone can absolutely communicate aggression.

Why This Is an Issue

The Autism Genetic Resource Exchange (AGRE) compared the scores of 766 children with autism against 766 of their unaffected brothers and sisters on a questionnaire of autistic social behaviors. An overwhelming 79 percent of autistic children “were less aware of being too close and more prone to personal space invasions” than their neurotypical siblings.  Though it seemed to improve with age, it continued to affect teenagers and young adults. Those with spatial issues were more likely to:

  • Stand too close to others
  • Touch others in an unusual or inappropriate way
  • Walk in between two people who are talking
  • Be unaware they are talking too loudly or making too much noise

This behavior is often done on automatic pilot and not self-monitored.

Proprioception and Spatial Awareness

Proprioception refers to the sensory input and feedback that tells us about movement and body position. “Receptors” are located within our muscles, joints, ligaments, tendons, and connective tissues.

If this proprioceptive sense is not receiving or interpreting input correctly it is referred to as PROPRIOCEPTIVE DYSFUNCTION.

Spatial awareness is part of our overall perception. Since perception is the organization and interpretation of sensory stimuli from our environment, autistic people would need to have adequate body awareness to be able to form the relationship of their body with the stimuli and objects within that space.

My son has tremendous struggles when it comes to this. Not only does he have to constantly touch the wall when walking in public, he perpetually “hovers,” stands too close to people, touches them without invitation, and even crashes into them. This is due to his nervous system craving proprioceptive input and his inability to fully perceive where he is in relationship to his surroundings. At home, we use a hula-hoop to continually demonstrate personal space. While he has made significant progress, it is something we must address daily.

What scares me is that my son is a BIG child. His simple lack of spatial awareness might cause him to be severely injured or incapacitated if his behaviors are misinterpreted, especially during a heated situation or crisis.

What Can You Do On Scene?

If you identify someone as autistic on scene, whether by the family’s information or from the tools you learned in my autism training, try to keep this information in the back of your mind during your scene size up. Know there is a possibility of someone being a ‘space invader’ and that it might not be an aggressive or threatening action.

I am not telling you to put your guard down and allow someone into your personal space AT ALL. But awareness goes a long way. When you start putting the picture together that someone might have spatial awareness issues or proprioception dysfunction, try putting your arm out and stating, “Stay at arm’s length.” Use clear, concise phrases that have only one meaning, such as “Stop there” while holding your arm out.

The combination of the visual cue and clear commands could truly go a long way in stopping a situation from being misinterpreted and rapidly escalating out of control.

autism no eye contact

Autism Tips for Emergency Responders: No Eye Contact

autism no eye contact

image courtesy of freedigitalphotos.net

I read an awesome article on TheMighty.com that asked 16 different people on the autism spectrum to describe why making eye contact can be difficult for them. Any insights like this help me be a better parent to my autistic teens and a better educator for emergency responders.

Lack of eye contact may be considered rude or antisocial to those who don’t understand it. However, in an emergency situation that involves first responders, it can be misconstrued as evidence of guilt, non-compliance, or even altered mental status, all of which can put an emergency responder on the defensive and potentially lead to a call going downhill fast.

The Mighty asked their readers with autism who find eye contact difficult to share a description of what it’s like for them. I think some of these quotes are really helpful for emergency responders to be able to understand and identify what’s really going on when someone with autism cannot look at them. The full article can be found here, but some of my favorite descriptions are:

“It’s abstract to me and can be draining. Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded. It can disrupt any thought or speaking process I have going on and zaps my energy quickly.” — Laura Spoerl

“To me, eye contact feels like I’m being stared at, like I’m being scrutinized and judged. It makes me uncomfortable because I feel like I’m under immense pressure, and the tension builds and builds until finally I have to look away. It feels almost confrontational, which causes me a lot of anxiety.”— Emma Wozny

“It can feel like you’re standing there naked. It’s very difficult to form a coherent thought with all of this going on in your head. ” — Megan Klein

“When I make eye contact, the world around me blocks out. I can only process the immense pain and discomfort that comes to my brain. This pain goes if I look away.” — Lucy Clapham

“For me it can be a physical pain; it feels like burning with too many emotions, and I just can’t take it in all at once.” — Rosie Howard

“There’s plenty enough for us to concentrate on mid-conversation without the demand to do something which, quite frankly, feels very unnatural to many of us. You can have my eye contact, or you can have my concentration. Choose whichever one you value more.”– Chris Bonnello, from Autistic Not Weird

“Eye contact is hard for me because I am easily overwhelmed by lots of different input. When I am trying to listen, follow, or contribute to a conversation or just manage all my different sensitivities, it is easiest, most comfortable and least painful for me to not make eye contact. I listen and focus better when I am not making eye contact.” — Erin McKinney

My co-trainer at Spirit of Autism, Austin Harris, told me what it’s like for him, and how he’s learned to manage it:

“Eye contact is difficult for me because it makes me very nervous when I’m being looked at directly. It makes me feel uncomfortable in an unexplainable way. One tool I use to combat this is quick contact by looking at multiple people and objects. This works especially well for public speaking and teaching where you need to talk to the group instead of one person. What I do is I make brief contact every so often with different individuals so I am not focusing on just one person’s eyes.”

My daughter shared this with me about her experience:

“If I’m coming up on a person about to pass me, I drop my gaze immediately. If I happen to accidentally lock eyes with them, I feel a tinge of panic. What are they thinking? Are they thinking about me at all? Did I rub them the wrong way? I’d rather be invisible to them, and chances are likely that they thought nothing of it, but I remember it.

There’s something very uncomfortable about looking directly into somebody’s eyes while they’re staring at you. I don’t know what’s going on and I’m trying to evaluate the situation. And how long are you supposed to keep eye contact, anyway? If it’s too short, it may come across as dismissive; if it’s too long, it’s way too awkward. It’s a lot of processing and confusion that goes on underneath the surface in a matter of seconds, and when there are responses and replies expected of you on top of that, it gets to be overwhelming sometimes.”

I think the biggest takeaways for emergency responders when it comes to lack of eye contact are:

  1. If someone with autism isn’t looking at you directly it does not mean they aren’t listening.
  2. It can be physically painful for an autistic person to maintain eye contact with you.
  3. A person with autism may need to avoid eye contact in order to process and focus on what you’re saying to them.

Rather than demanding that someone look at you when you are speaking, it may be helpful to simply ask a person that’s not keeping eye contact with you if they are listening, if they understand you, if they can repeat back what you just said, or even if they’d prefer to communicate by writing.

image courtesy of paals.org

Autism Tips for Emergency Responders: Service Dogs on Scene

image courtesy of paals.org

image courtesy of paals.org

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!

image courtesy of freedigitalphotos.net

Weekly Autism Tips for Emergency Responders: Co-existing Conditions

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

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.

image courtesy of exciteddelirium.org

Weekly Autism Tips for Emergency Responders: Excited Delirium or Sensory Meltdown?

image courtesy of exciteddelirium.org

image courtesy of exciteddelirium.org

During my last Autism training class for law enforcement, someone brought up an excellent question immediately following the Sensory Meltdown section of my program. They commented that many of the signs and behaviors of sensory overwhelm that lead to a meltdown sound exactly like those of Excited Delirium (ExDS) and wanted to know how to tell the difference.

I absolutely LOVE getting tough questions during my training programs! It’s because of everyone’s valuable input that this training remains fluid and continually improves after each experience.

I have been researching ExDS extensively and, while sharing some signs of sensory processing issues, the outcome is very different. Michael Curtis, MD, who created a field guide to help EMS and Law Enforcement recognize ExDS, refers to the condition as a “freight train to death.”

Excited Delirium typically accompanies the use of stimulants, most commonly but not limited to cocaine and methamphetamines, as these drugs block the re-uptake of dopamine, resulting in elevation of dopamine levels in the brain. This is amplified if the person already has a pre-existing psychiatric condition that is treated with dopamine re-uptake inhibitors.

According to the JEMS website, elevated levels of dopamine cause agitation, paranoia and violent behavior. Heart rate, respiration and temperature control are also affected by dopamine levels, with elevation resulting in tachycardia, tachypnea and hyperthermia. For this reason, hyperthermia is a hallmark of excited delirium.

Look for persons partially clothed or naked, exhibiting violent, almost primal behaviors. They may appear to have “super human” strength, but in actuality merely it’s the loss of pain receptors that creates the illusion.

Excited Delirium is a MEDICAL condition, with a grim outcome once a person enters arrest. The best way to manage it is to prevent cardiac arrest. Prehospital therapy should focus on treating the increased metabolic activity and hyperthermia first.

The mnemonic “NOT A CRIME,” developed by Michael Curtis, MD, clearly sets out the signs and symptoms of ExDS:

  • N – Patient is naked and sweating from hyperthermia
  • O – Patient exhibits violence against objects, especially glass
  • T – Patient is tough and unstoppable, with superhuman strength and insensitivity to pain
  • A – Onset is acute
  • C – Patient is confused regarding time, place, purpose and perception
  • R – Patient is resistant and won’t follow commands to desist
  • I – Patient’s speech is incoherent, often with loud shouting and bizarre content
  • M – Patient exhibits mental health conditions or makes you feel uncomfortable
  • E – EMS should request early backup and rapid transport to the ED

Sensory Processing Meltdown

A sensory meltdown is when a person’s nervous system has been so bombarded by sensory input that it enters survival mode, perceiving that it is under attack. These may occur in autistic adults just as much as children.

An adult experiencing a meltdown describes the experience on SPDSupport.org:

“All sensory systems start firing! Everything pierces you like a knife! Every sound, every speck of light, every texture against your skin, and everything you can smell. It surrounds you and cuts right into you. Trapped within your skin, like a caged animal under attack, you are basically helpless. You thrash, you heave, you scream, you do whatever you can, because you are perceiving something killing you. You need to escape! Everything is hurting you, things that no one else can even believe would be affecting you. The smallest noise makes you want to claw your ears off, the slightest movement of you head might make you sick, and even the dimmest lights in the room make your eyes feel like they are bleeding.

Nothing matters anymore. You only have a few options: fight, flight, or freeze.”

Not unlike ExDS, some of these signs may present as agitation, violent behavior, resisting, tachycardia and tachypnea. If your nervous system believes you are in imminent danger, it will employ survival techniques.

There is typically no hyperthermia involved with a sensory meltdown. Additionally, once you reduce sensory triggers or remove a person from the environment, the meltdown begins to lessen. The person may begin to self-calm and use relaxation techniques in order to return to their baseline behavior.

It is always best to try and prevent meltdowns by learning to recognize the signs and behaviors leading up to them. If that cannot be achieved you want to immediately remove harmful stimuli and reduce sensory triggers. Once their nervous system begins to stabilize, you can then add positive stimuli. Tools such as deep breathing, gum chewing, handling a fidget item, redirection and distraction can all help the nervous system relax and block the stressors. It is only then that you can gain compliance or begin communicating.

SPD meltdowns are incredibly intense and often traumatic for the individual experiencing them. However, unlike ExDS, the person is aware of the way they acted during, even though they were not in control of their behaviors. There is no blackout or acute altered mental status. It is essentially a response to a nervous system overwhelm and will eventually subside. The goal is to keep the person safe and do whatever you can to reduce sensory triggers.

Recognizing a sensory meltdown is extremely helpful, but as always, DO NOT IGNORE LIFE-THREATS such as stroke, brain injury, seizures or hypoglycemia just because your patient has autism or you suspect they do.

Have you responded to a call involving excited delirium or a sensory meltdown? What were your indicators? How was it handled? Share your thoughts below or send me a confidential email with your comments! Input from the field is ALWAYS valued.

Patient Assessment Autism

Weekly Autism Tips for Emergency Responders – Patient Assessment

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!

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Help Me Illuminate the Future for Those with Autism

logo_waad-227x300As you know, I am extremely involved in the Autism community, both to support my son and in the Emergency Preparedness/Emergency Responder arena. I am blessed and honored to be training some of Georgia’s finest men and women in uniform – Law Enforcement, EMS, Fire Rescue and Disaster Responders – on how to recognize and safely interact with Autistic persons on the scene of a crime, fire, medical call or disaster. My goal is to have all of Georgia’s responders trained within the next 18 months. The Autism Society of Georgia is helping me do that by fully endorsing my training programs!

April 2 is World Autism Awareness Day. 

Please join the Autism Society of Georgia and me by helping us illuminate the future and create awareness for Autism.

For as little as $5.00 you can help us light a luminary for 1 child or adult.

There are over 150,000 children and adults in Georgia identified with Autism and we are making a difference. And, because my training programs are critical to the safety of the Autism community, the Autism Society of Georgia is giving 20% back to Spirit of Autism when you donate through my unique link so that I can continue to provide this training.

If you feel inspired to, you can click here to go to mydonation page or head over to Autism Society of Georgia’s The Future is Bright website to learn more about the campaign. From there you can choose Spirit of Autism on the right hand side by clicking my logo.

Thank you for being a part of MY community. I know you haven’t heard from me regularly in a while… I apologize! I’m almost done with Advanced EMT school and can come up for air soon : ) Now back to my IV drip conversions and drug calculations!

xoxo