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.

SOA Inappropriate Words

Autism Tips for Emergency Responders: Inappropriate Words

SOA Inappropriate Words Ah, the art of communication. It comes so easily to most of us. But for someone with autism, even if they are completely verbal, it is a almost always a challenge.

Yesterday my son was having a really hard time regulating his emotions, so I suggested we take a leisurely walk together without the dogs. (It turns out walks are actually enjoyable when you’re not being dragged by two 100-pound huskies!) On a quiet side street, we encountered a neighbor walking her two dogs. Exchanging typical pleasantries she asked, “How are you?”

My son replied, “Bad.”

“How can you be bad? It’s a holiday! Everyone’s happy during the holidays! I’m sure you had a nice Thanksgiving,” she said.

My son looked up and said, “I’m Polish.”

“Uh… okay… well, bye?” and she slowly backed away from us, not knowing what else to say.

Two things happened here for my son that I understood perfectly but seemed extremely odd and unnerving for someone else. When he said he was bad, he was just being honest. He wasn’t feeling well before the walk, so he answered the question. He wasn’t aware that when people say “how are you” there is an unwritten rule that says you should reply with “fine, and you?” instead of saying what’s really going on.

The second, unrelated response he provided was completely inappropriate in the neighbor’s eyes. In reality, my son knew he was supposed to say something because there was a pause and silence, but he had no idea what he was expected to say. So he said the first thing that popped into his brain.

My daughter with Aspergers also has experiences with inappropriate words but in a different context. For her, someone will make a remark and she starts to panic from the stress of figuring out an appropriate reply. Often she will try to soften the awkwardness with a snarky but humorous remark that ends up sounding very suggestive – absolutely furthest from her intention!

She may also be in a gathering where people are eating and innocently recount gruesome details of a video she saw or recite what fluids came out of our dog when she had her puppies. Then she sees everyone shocked and staring at her and has no idea what she did wrong, which kicks off several levels of feeling ashamed and anxious followed by a complete shutdown.

I read today on the Everyday Aspergers Facebook page that “…the heightened anxiety of an Aspie is often a result of the act of living in a society with countless unspoken rules and expectations.” 

What does all of this mean for emergency responders?

Imagine responding to a motor vehicle accident and you approach an adult-sized teenage patient and ask his name, if anything hurts, what happened, etc. What if he answered all of your questions with the word “cheeseburger,” or, better yet, hums the theme to a Super Mario Brothers video game?

You’d immediately start thinking altered level of consciousness, head injury… after all, inappropriate words is assigned a 3 under “Best Verbal Response” on the Glasgow Coma Scale!

What if you are a police officer and ask for someone’s ID, name and where they live and you got the same responses? You might think drugs and noncompliance right off the bat.

Of course, your safety and protocols always come first! However, inappropriate words and responses may not always mean what you think.

Emergency Responder Tip #1: Always consider a medical reason first

You may know someone with autism. You may have responded to a call before where someone acted the same way and they were autistic. You may have taken my autism training class and learned to look for these signs. Even if you are told by the patient himself that he has autism, don’t immediately assume his responses are “typical autistic behaviors.” They may be, but always rule out major life threats first!

Emergency Responder Tip #2: Look for a caregiver or relative

It may be challenging to get not only medical history, allergies and other vital information from someone with autism during an emergency or crisis but simple assessment information, too! We rely on our patients to tell us where they are hurting but a person with autism may not feel the pain of a serious injury or, if they do, will not have a typical (or appropriate) response to it. Caregivers are a wealth of information, especially when it comes to determining a baseline mental and behavioral status of your patient.

Emergency Responder Tip #3: Look for an alternative ID

More and more products are becoming available to assist people with autism that may not be able to speak or advocate for themselves in an emergency. From medical bands to phone apps to QR codes on patches, IDs or tags, this information is instantly available to responders to provide critical medical history, sensory issues and other facts needed in order to best help your patient.

Emergency Responder Tip #4: Don’t try to analyze it

It is in our nature to try and “decode” or find the hidden meanings in someone’s behavior. Someone with autism may not have any rhyme or reason to what they are saying other than they heard it on a YouTube video or it’s the “phrase of the week” that they have been repeating incessantly. Trying to figure out a correlation between the inappropriate words and what is really happening with the patient will waste valuable assessment time.

Emergency Responder Tip #5: Play along if it helps

If your patient’s inappropriate words happen to be about one of their obsessions, you may be able to leverage what they’re saying into a means of gaining rapport and communicating with them. If you asked a patient if they are hurting anywhere and they reply with “Yoshi!” you may be able incorporate that into your assessment. Maybe you could ask if Yoshi is feeling hurt anywhere from the accident, or does Yoshi know what happened. Or what would Yoshi do if… questions. Maybe the other car was Wario and crashed into Yoshi. Again, this is not something to spend a lot of time on if the answers still aren’t coming, but it may be a way into someone’s world. Use your best judgement here – if you are familiar with their obsession topic and can get them talking about it in a way that’s relatable to your assessment, go for it.

Have you responded to a call that involved inappropriate responses not caused by a medical issue? How did you handle it? Share in the comments section below!

image courtesy of freedigitalphotos.net

Emergency Responders: Why Address Sensory Issues First?

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

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!