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 anxiety

Autism Anxiety: It’s Not What You Think

autism anxietyAs an emergency responder, I’m sure you’ve had “that call” a bunch of times… it comes in as heart attack or chest pain, and you drive lights and sirens to the call location only to find out your patient is simply having an anxiety attack. Sure, you do your job and tell them to take some deep breaths, you assure them they are safe, maybe even call a family member, and get a refusal. All the while in your head, you label it a BS call, or “status dramaticus.”

Of course I am not belittling or dismissing the fact that generalized anxiety disorder is real in any way; it is a recognized disorder and it affects people greatly. What I DO want to talk about it autism-related anxiety, and how it affects those who experience it.

My 18 year-old daughter has anxiety. It is a huge part of how her autism manifests. It’s taken me some time to truly understand the things she struggles with.

To be completely raw and brutally honest, there are days – even now – where it’s hard for me to put myself in her shoes. This month I’ve worked a ton of overtime shifts, operating on two hours of sleep per day if I’m lucky, and still couldn’t pay some of our bills. I’m managing a special needs household on my own and the more I work, the more I watch my “kingdom” spiral out of control as I fall behind on the day-to-day tasks that are important to our survival. So when I look over at my daughter and she’s completely melting down over something I consider a bit trivial, there is a part of me that thinks, “Really? Over this? What if she had REAL responsibilities, like a typical 18 year-old? What if she were amid choosing a college, taking exams, working, experiencing peer pressure, trying alcohol, or was in a relationship? How the hell would she handle THAT if this (minor) thing is completely destroying her right now?”

There is so much more to it than that.  

Of course, I’m human. I worry that I am coddling her or sheltering her too much. I worry that she won’t become a functioning member of society. But then I see her face a lot of her anxiety head on, with the attitude of a warrior, and I watch her make great strides overcoming some of her worst attacks without anyone telling her what to do… and I know she is where she needs to be right now. Especially with the help of my meltdown management breakthrough technique.

So what is autism anxiety? How is it different?

For one, autism anxiety is more physiological than psychological. When anxiety kicks in, it’s not necessarily triggered by stressful thoughts. Sometimes, it’s just there, like a nagging toddler that constantly follows you around and tugs at your apron strings, demanding attention. Aside from the typical rapid heart beat and dry mouth, it can cause an array of GI issues, from nausea and vomiting and diarrhea to digestion issues and acid reflux. It can manifest as joint pain, muscle aches and circulation issues, causing things like Raynaud’s disease. It can make your whole body shake uncontrollably for no logical reason whatsoever. Being in fight or flight mode long-term is very stressful on the body. Being unable to logically control it feels like pure torture.

The other day, my daughter told me it was very “loud and crowded” in her head. Like that scene in Bruce Almighty where Jim Carrey starts to hear everyone’s prayers in his head at the same time, my daughter hears all her thoughts. Only they’re not so nice. They constantly tell her she’s not okay, there are things to worry about, things to be scared of. They bring up every line of every conversation she’s had and tell her how she should have said things differently. They remind her of every embarrassing moment of every childhood event, relentlessly. It’s like a constant soundtrack in her head, and she has to learn to tune it out just to function.

That’s just the thoughts. Then the physical symptoms kick in. The nausea, the muscle cramps, the trembling… for her, it feels like she’s in a tiny glass case and can feel her anxiety climbing up her body and suffocating her. And there’s no escape. It doesn’t matter how logically I approach her fears or thoughts, she cannot control them. She can’t simply “snap out of it.” Her brain does not care if there is a real threat or not; her body reacts as if there is. And it goes downhill from there.

Eventually, if she cannot gain control over it when it’s happening, she will reach the point of complete shutdown, which can include paralysis, difficulty breathing and the loss of ability to speak. She describes this as an overload. There are so many thoughts and physical sensations hitting her simultaneously that it becomes overwhelming. In this state, if I ask her, “What’s wrong?” she feels like all of her thoughts form a huge, heavy mass and it’s just too much. She can’t name or articulate any one thing.

These are just the day-to-day experiences, not even touching on anxiety that stems from social situations and having to interact with others.

Now let’s think about at adding an emergency situation to the mix. In my autism training program for emergency responders, I talk about how it’s more difficult to identify autism in females. Autism anxiety can be a huge clue.

So what should you do on scene when you recognize this type of paralyzing anxiety in a patient with autism? How is it best handled?

Let’s start with what NOT to do:

  • DO NOT become angry or raise your voice
  • DO NOT restrain unless absolutely necessary
  • DO NOT tell someone to simply “snap out of it”
  • DO NOT say, “Use your words” to someone. As the brain escalates, the ability to be rational and articulate diminishes greatly.
  • Avoid moving someone until they calm down, unless they are in immediate danger or the current location/setting is contributing to the escalation.
  • Remove unneeded bystanders – including additional personnel
  • Do NOT turn it into a power struggle

What SHOULD you do?

All efforts should be made to prevent a meltdown if possible. Remember, you are not “giving in” to negative behavior; you are literally throwing a lifeline to someone who is unraveling neurologically

  • DO turn off lights and sirens if possible
  • DO give space to allow the person to self calm if they are able
  • DO allow one familiar family member or caregiver to remain with them
  • DO respond patiently and compassionately
  • DO offer choices
  • DO provide a pen and paper to see if they can write down their needs
  • DO keep the individual safe from harming him or herself

Being an EMT means that I have a responsibility to my community to provide the best patient care I can, including recognizing and helping those with special needs that struggle with a variety of disorders and symptoms. Being an autism parent means that I must continually strive to find a balance between honoring and supporting my children’s struggles and giving them tools to help them be the very best version of themselves and succeed as an adult.

Autism anxiety is a tough thing for me to help my daughter manage… but any time I get overwhelmed with her meltdowns I stop and imagine what it must feel like for her. Seeking education and providing compassion and empathy will take you a long way as an autism parent OR as an emergency responder. Or in my case, both :)

 

image courtesy of Cam Hytche

Lessons I Learned Encountering a Lost Autistic Child at the Air Show

A Guest Post By Austin Harris, Emergency Medical First Responder,
Autism Specialist, CERT Instructor

image courtesy of Cam Hytche

image courtesy of Cam Hytche

Air shows can be fun for kids of all ages… but add autism to the mix and you may have a crisis in the waiting.

I worked as a medical first responder at an air show earlier this year that and learned some valuable lessons after encountering a wandering autistic child. First let’s start with some details:

The call came in to the first aid team from family members that their sibling had gotten away from them, which is somewhat of a normal occurrence at the air show each year. Unfortunately, we were overwhelmed in first aid at the time with several cases so I was not immediately brought in on this one.

My partners started the normal procedure for a lost child while I finished up my call. 30 minutes passed, and by the time I was finished the child still was missing. We were still getting information from the family members, who were kids themselves. Something just did not seem right; the family acted very nervous and seemed to not be telling us something. So I asked the question: “Is the child autistic?”

To our astonishment the answer was, ”Yes he is.” This changed the situation dramatically.

This is where lesson one comes in: interviews. When someone goes missing, it is vital at first contact to ask caregivers about the possibility of special needs and what type of conditions they may have. Brothers and sisters usually have some idea of what kind of needs their siblings may have. With me, my sister knows I am a heart patient and that I’m autistic. She can tell you a lot about my condition, the key is to ask.

It took several hours to locate the child – we had radioed all parties involved in the search the crucial information that the child was autistic. Finally one of our police officers made first contact and was able to bring the child back to be reunited. It had been a hot day and since several hours passed since the child went missing we knew there would be some medical issues.

As an autism specialist, I made primary contact with police as soon as they brought him to us. I identified that I was an autism specialist and would take the lead with the patient. This brings me to lesson two: in the event you have a specialist or officers trained in autism on site let them take the lead, because they can provide specific insight and support, where other team members may not be able to.

Once in my care I took the child to his family and I had two other team members from the Hope Animal Assisted Crisis, who had their K9 crisis intervention and therapy dogs with them, to provide care and comfort. This was the key to it all. The child did not open up to us immediately but opened up to the dogs first. This is my third lesson: use your resources and trust your team members – even your canine team members! They, too, can help you help your patient.

I’m so glad the situation ended on a positive note. It could have had an entirely different outcome. I learned a few lessons from this experience.  

Missing autistic child lesson 1:

When someone goes missing, it’s crucial at first contact to ask caregivers about the possibility of special needs and what type of medical conditions they may have. Even brothers, sisters, aunts, uncles or close family friends usually have some idea of what kind of needs the family member may have.

Missing autistic child lesson 2:

Autism specialists or autism trained officers are needed on site at large events and should be given the primary responder role because they can provide specific insight and support which other team members may not have.

Missing autistic child lesson 3:

Use your resources and trust your team members – even your canine members! They can help you establish a rapport that will pave the way for you to communicate with and provide care to your patient.

 

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.

autism_vs_aspergers

Autism Tips for Emergency Responders: Autism vs. Asperger Syndrome

autism_vs_aspergers I often get asked, “What’s the difference between autism and Asperger’s? Are they both considered autism? Are they the same thing? And what the heck is PDD-NOS?”

Just when I had a handle on everything, the Diagnostic and Statistical Manual version 5 (DSM-5) went and changed the diagnostic criteria! Here is what I know, in a (large, drawn out) nutshell:

With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of autism spectrum disorder (ASD). They were previously recognized as distinct subtypes, including autism, Asperger Syndrome, Childhood Disintegrative Disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Both autism and ASD are now considered general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by:

Communication and Social Interaction

  • Deficits in social-emotional reciprocity, ranging from an abnormal social approach, to reduced sharing of interests or emotions, to failure to initiate or respond to social interactions.
  • Deficits in nonverbal communicative behaviors ranging from abnormalities in eye contact and body language, to deficits in understanding and use of gestures, to a total lack of facial expressions.
  • Deficits in developing, maintaining, and understanding relationships, from difficulties adjusting behavior to suit social contexts to difficulties in sharing imaginative play or in making friends.

Restricted, Repetitive Patterns of Behaviors

  • Using repetitive motor movements (simple motor stereotypies, lining up toys or flipping objects, echoing speech, idiosyncratic phrases).
  • Showing inflexible adherence to routines, or having ritualized patterns (extreme distress during small changes, difficulties with transitions, rigid thinking patterns, need to take same route every day).
  • Possessing fixated interests with abnormal intensity or focus (strong attachment to or preoccupation with unusual objects, excessive knowledge in a sole interest).
  • Being hyper- or hyposensitive to sensory input (apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)

Although the DSM-5 no longer recognizes Asperger Syndrome and PDD-NOS as separate diagnoses, it is still good to recognize some distinct characteristics of each, especially since anyone with a previous diagnosis of these means the terms are still in use.

Asperger Syndrome (AS) is a form of autism in which the individual has or had little to no language delay and an IQ in the average to high range, but has social and communication challenges. It was named for the Austrian pediatrician, Hans Asperger in 1944.

Dr. Asperger called children with AS “little professors” because of their ability to talk about their favorite subject in great detail. Common signs of Asperger Syndrome include social problems, vulnerability to sensory overload, clumsiness, and a tendency to take many figures of speech literally.

Many adults who were very bright children but never quite “fit in” socially realize later in life that they may have Asperger Syndrome.

Pervasive Developmental Delay-Not Otherwise Specified (PDD-NOS) was typically reserved for a child who displays some of the characteristics of autism or Asperger Syndrome but doesn’t quite match all the criteria. Often very young children who are identified with having PDD-NOS were later diagnosed with autism or AS when they were older.

What does all this mean for us in the field?

Not much! Honestly.

I perpetually tell responders that it truly is not our job to diagnose autism in the field. What we CAN do, is recognize some of the common signs and behaviors of autism to enable us to adapt our response to more effectively communicate and interact with someone on the spectrum that’s having a really hard time on the scene of a crime, medical call, fire or disaster. This will help us keep the situation as safe as possible and best meet the needs of autistic individuals that may soon escalate into a meltdown or crisis as a response to an overwhelming environment.

Even if we recognize a “classic” autism behavior, remember to first address and rule out all medical causes of that behavior! Don’t ignore life threats while tripping over labels and diagnostic terms.

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!

 

autism sleep deprived

Autism and Sleep Deprivation

As an autism parent, I’m no stranger to sleep deprivation. When my son was a autism sleep deprivedtoddler it used to take HOURS to get him to sleep. If (not when) I was successful, he would wake up around 1 am, just as I was going to bed. Nothing would get him back to sleep – not letting him “cry it out,” not inviting him to come sleep with Mom in bed, not removing all toys in his room (he would then take apart the electrical outlet with his bare hands), not making his room completely dark with special curtains. The boy was up.

Then, after three our four hours of desperately trying to get him back to sleep, he would slip off to dream land right about when my alarm would go off for me to get up for work. FUN times!

Although I don’t need to monitor my children as closely now that they are teenagers, their sleep patterns still affect our day-to-day lives. Not only are their schedules perpetually varied (often reversed), when they do sleep it is typically broken.

Disrupted and insufficient sleep can result in daytime sleepiness, learning problems and behavioral issues such as hyperactivity, inattentiveness and aggression. Recent research in children with ASD demonstrates that poor sleepers exhibit more behavior struggles than good sleepers.

Getting adequate sleep helps muscles, bones, and skin grow and repair and fix injuries. Sleep is needed for our body to stay healthy and fight sickness by helping our immune system. There is a lot more at stake than simple drowsiness.

Why do people with autism have difficulty sleeping?

My story is not unique – sleep disorders tend to go hand in hand with autism. It is estimated that 83% of autistic people have difficulty sleeping. This can include trouble falling asleep, restlessness and poor sleep quality, thrashing about, and early rising.

There is no solid research on what causes sleep disorders in autistic individuals. The two strongest theories are misinterpreted social cues and the irregular release of the hormone melatonin.

People typically use their body’s circadian rhythms, the light and dark cycles, and social cues to know when it’s time to retire for the evening. We may see others getting ready for bed or have a sense of the next day’s schedule, which helps dictate the start of our bedtime ritual.

Children with autism fail to understand social cues and the big picture. Even after clearly repeating my expectations to my son (e.g., ten more minutes of this card game and then you must brush your teeth), he will still start a new game when the timer goes off. He’s not stalling or manipulating me for a later bedtime, he just doesn’t understand the social cue I have laid out.

Additionally, the body uses melatonin to regulate sleep/wake cycles. It creates melatonin with the amino acid tryptophan, which has been found to be either higher or lower than normal in autistic individuals. In a normal functioning system, the melatonin levels will rise at night and dip during the day, in response to the dark and light. People with autism may not release this hormone at the correct times.

How does this information apply to emergency responders?

Increase in sensory processing issues. When you respond to a call involving someone with autism, keep in mind that sleep deprivation results in an exhaustion cycle that exacerbates sensory overload. If you have taken my autism training class you may be trained to immediately be aware of how the surroundings and environment can affect an autistic person’s sensory processing issues. Even if there is nothing obvious to you (lights and sirens, crowds gathering) a person with autism may still be prone to a sensory meltdown if they are sleep deprived.

Drowsy driving. According to the National Sleep Foundation’s 2005 Sleep in America poll, 60% of adult drivers – about 168 million people – say they have driven a vehicle while feeling drowsy in the past year. The National Highway Traffic Safety Administration conservatively estimates that 100,000 police-reported crashes are the direct result of driver fatigue each year. This results in an estimated 1,550 deaths, 71,000 injuries. While these numbers are not autism-specific, be aware that drowsy driving may play a large role in MVAs you may respond to.

Increased aggression. It is common knowledge that a sleep deprived individual is more easily irritated and more likely to be angry.  It has been discovered that the prefrontal cortex is always active when one is awake and is even more active when awake for long periods of time. The only time that activity in the prefrontal cortex ceases is during sleep, when it is allowed to regenerate. A lack of sleep may correlate directly to one’s emotional control, decision making, and social behavior.

I know there aren’t really any “tips” for you in this week’s edition, just some more things to be aware of as you do scene size up and engage with those on the spectrum.

I’m about to enter a whole new world of sleep deprivation as I start my new 1645 to 0600 shifts while trying to maintain some semblance of a day job and continue to homeschool my autistic teens. I look forward to bringing you exciting new tips from the field as I embark on a new emergency responder journey!

 

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!