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.

Justin Stim

Autism Tips for Emergency Responders: It’s Not Altered Mental Status

Justin StimI’m going to be boldly honest right now about how things are for us sometimes, because I believe it can help responders understand more about interacting with autistic individuals.

This is my son…

…Flapping his hands and banging his head because emergency vehicles passed by with lights and sirens, which also set off the neighborhood dogs

…Acting out more than usual because I recently went from a predictable day job to working 13-14 hour night shifts twice a week. Sometimes I sleep during the day on my off days and sometimes I keep “normal” hours. Our whole world has been turned upside down.

…Sporting wild and unkempt hair because haircuts are extremely painful and autism + puberty makes personal hygiene a daily battle

…Wearing no shoes outside in the middle of the winter because he doesn’t feel temperatures or pain the way we do (not for long periods of time, I assure you!)

…Donning sweatpants and a loose shirt that has been stretched and has holes in it from a new stimming habit (biting, stretching and poking holes in his clothing while wearing it when he feels anxious or stressed)

Getting closer to him reveals an odoriferous cocktail of 13 year-old boy… scents, occasionally worse due to severe GI issues and a history of bowel obstructions that make him terrified to go to the bathroom until his body forces it out.

If he were with a sitter while I was on shift, or if his older sister called 911 because he was “acting out” or “not acting right,” what would you think if you approached my son on scene based on the things I mentioned above?

A 5’9”, 220 pound THIRTEEN year-old male, outside with no shoes or winter clothes on, flapping his arms, banging his head with his hands, refusing eye contact and answering all questions with unintelligible verbal noises and repetitive phrases such as “Cheeseburger…”

Altered mental status protocol? Get the restraints ready? Probably.

My son would never intentionally hurt anyone, but if he were already in a distressed state and was suddenly surrounded by strangers with radios blaring who were starting to get frustrated and louder because he doesn’t seem to be cooperating the way they feel he should… he would most likely fight those trying to control him.

We must recognize that autism is not actually “altered mental status” because it’s not a mental illness.

It’s not a behavior problem or an excuse for noncompliance.

The CDC says it’s a complex developmental disorder and the National Autism Association says it’s a bio-neurological disability. And with 1 in 64 boys in Georgia diagnosed with autism, the likelihood that you’ll encounter it in the field increases each day.

The behaviors I described above can – on some days – be normal baseline behavior for my son. He stims and hits himself when he’s overwhelmed. He won’t shower unless I make him (or is that just a boy thing?). He won’t voluntarily use the bathroom unless I help him.

Does the knowledge that he has autism mean we as responders shouldn’t keep ourselves safe? Should we forget the restraints and be more “understanding” of his actions?

If you’ve been following my work long enough, you know I NEVER advocate ignoring your protocols or putting yourself in harm’s way. Keep yourself safe always!

But when all else checks out (blood sugar is normal, negative for narcotics or alcohol, no trauma, infection, seizure or stroke…) we’re left scratching our heads and treating someone like my son as a combative psych patient.

What kinds of questions and actions would help, assuming our safety has been established?

Of course we want to know about allergies and medical history, especially since autism often presents with numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, sensory integration dysfunction, sleeping disorders, and more.

But knowing some common signs and behaviors of autism can give you more tools and knowledge for your assessment. A different set of questions can yield very different results (and gain cooperation from the patient!). Questions for the caregiver such as:

  • Is this normal behavior for him?
  • I see him holding his ears. What sensory issues affect him the most? (Does he hear things louder than normal, do lights bother him, etc.)
  • How does he typically (and best) communicate?
  • Can we move him to a quiet area to self-calm and have 1-2 personnel only question him?
  • Can his caregiver or trusted family member stay with him to help keep him calm?
  • What helps when meltdowns occur?
  • How long do they last?
  • Is there an attachment item that would help him feel better?
  • Have there been recent changes to routines and schedules that might be causing this behavior?
  • There may be no allergies, but what about food or drug sensitivities?
  • Could he have ingested a non-food item (PICA syndrome – chalk, paint, etc.)

If there is no caregiver, try giving the person a pen and paper to write their needs or chief complaint. Even completely verbal adults with autism will quickly lose the ability to speak during meltdowns.

Also look for alternative IDs and smartphone apps that can provide critical information fast.

One of the biggest challenges we may face is when there is no diagnosis and the caregiver may not even suspect autism. That’s why I teach emergency responders how to recognize signs and behaviors of autism whether or not the patient or caregiver provides that information. Sometimes just understanding what’s going on – even if we can’t change our actions – can make a world of difference for the person experiencing distress.

image courtesy of freedigitalphotos.net

Autism Tips for Emergency Responders: Adult Meltdowns

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

Often when I begin one of my autism training classes for public safety professionals I have to quickly debunk the myth that autism is a “kid” thing. Especially when we talk about meltdowns.

Yes, I talk about the differences between a meltdown and a tantrum – which is much needed information – but meltdowns are very real occurrences for adults on the spectrum as well.

In fact, the situation can be even more complicated and dangerous when responding to a call involving an adult experiencing a meltdown, especially if they have become nonverbal in the midst of it, which is common.

Meltdowns occur most frequently in autistic children due to an overwhelming sensory environment. My co-trainer, Austin, tells me that he has developed coping methods to deal with sensory overwhelm in public places (note: the sensory issues do not go away, he’s learned to manage them or have an exit strategy). As an adult, meltdowns can also occur from sudden change, not getting understandable answers to a question or being caught off guard.

The early signs of a meltdown may include stuttering or difficulty answering questions, loss of eye contact and the ability to focus, increased stimming, and eventually a complete shutdown of speech and communication.

This is very dangerous because a person experiencing a meltdown is no longer aware of their surroundings, and they may be unable to spot danger. There is also an increased tendency to flee from the situation in attempt to retreat into safety.

Early signs are helpful to know, but the reality is, by the time we as responders are called to a scene, a meltdown will most likely be in full swing. Meltdowns typically go one of two ways: explosion or implosion. And once it starts, there’s no going back for the person experiencing it.

It’s not an emotional outburst or behavior issue, it is a physiological occurrence that must run its course. If interrupted, it will likely start all over again in a few minutes.

Approaching an adult that is unable to speak, potentially hurting themselves or others (such as head banging), trying to flee or being in an odd physical position can be very confusing to a first responder. After ruling out immediate medical threats, our tendency is to either try to apply logic to the situation or treat the person as combative and non-compliant.

As always, safety comes first! But I think understanding what meltdowns are like for those experiencing them can give us critical insight so we can help.

In an article titled “Anatomy of a Meltdown,” a woman with Asperger’s shares her experience of having a meltdown as an adult. Some of my favorite quotes from this post are:

It feels like a rubber band pulled to the snapping point.

What I don’t want to hear:

It’s okay.
(It’s not.)

You need to pull yourself together.
(I will, when I’m ready.)

Everything will be fine.
(I know.)

It feels like the end of the world. It feels like nothing will ever be right again.

Meltdowns are necessary. Cleansing. An emotional purge. A neurological reboot.

It feels like my whole body is thrumming, humming, singing, quivering. A rail just before the train arrives. A plucked string. A live wire throwing off electricity, charging the night air.

Complex speech feels impossible. There is an intense pressure in my head, suppressing the initiation of speech, suppressing the formation of language.

A shutdown is a meltdown that never reached threshold level.

Imagine running as far as you can, as fast as you can. When you stop, that feeling–the utter relief, the exhaustion, the desperate need for air, the way you gulp it in, your whole body focused on expanding and contracting your lungs–that’s what crying feels like during a meltdown.

Please don’t touch me. Don’t try to pick me up, move me, or get me to change position. Whatever position I’ve ended up in is one that’s making me feel safe.

There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The head banging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat.

This is so much more than someone having an emotional outburst or acting out because they don’t get their way.

We never know what we’re rolling up to on scene, and we must always do what is safe and makes the most sense with the information and tools we are given. Don’t forget to look for medical bracelets, autism-specific phone apps or alternate IDs… they can provide extremely helpful information!

I hope that this viewpoint is another tool for your toolbox to help recognize that a patient or victim may have autism, and that they may be amid a meltdown.

Someone experiencing a meltdown needs patience,  space and time if the situation allows it. It would be ideal to have a trusting friend or caregiver on scene to both provide pertinent information and be there for the recovery period, whether that’s on scene or en route to the hospital.

Over to you…

Have you experienced someone with autism having a meltdown? Were you able to help? Share your comments below!

 

image courtesy of http://resources1.news.com.au/

5 Ways Autism Skills Can Help Emergency Responders On Scene

image courtesy of http://resources1.news.com.au/

image courtesy of http://resources1.news.com.au/

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!

image courtesy of freedigitalphotos.net

Trix Are for Kids, Autism is Not (Only)

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

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.

image courtesy of freedigitalphotos.net

Autism Tips for Emergency Responders: Autism and Violence

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

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.