fidget toys autism

Top 5 Autism Sensory Items to Keep in Your Jump Bag

fidget toys autism

If you are on a chaotic scene and you’ve identified either a patient or family member as autistic, congratulations! Understanding a person’s gifts and challenges and communication style goes a long way in being able to help them. In the immortal words of G.I. Joe, knowing is half the battle :)

But now what?

As you know, emergency situations are challenging for EVERYONE. Add sensory processing issues to the mix and have a recipe for imminent meltdown. To help alleviate this, it’s always best to try and eliminate triggers first. Can you turn off the lights and sirens? Can you remove the person from the main part of the scene and get them into the back of the ambulance, where it’s quieter? If not, can you remove unnecessary bystanders and personnel? How about allowing one main person to do the assessment and ask questions?

Even with these techniques in play, emergency situations can still be extremely overwhelming for autistic children AND adults alike. I’ve learned over the years that there are some simple items you can always have on hand that may aid in keeping an autistic person calm and helping to avert sensory meltdowns. Here are the ones that have been most helpful to me on scenes (these are not affiliate links, I receive no revenue or credits for promoting any of the below items):

Autism Sensory Item Number 1: Paper and Pen

A meltdown is a product of sensory overload and is rooted in the nervous system. Even someone who is typically verbal will have challenges once this begins. As the brain escalates, the ability to be rational and articulate diminishes rapidly. The simple act of allowing someone in the midst of overwhelm to write down their needs can be a true lifesaver. (And if you’re a good Paramedic/EMT/LEO you should always have this on hand anyway!)

Autism Sensory Item Number 2: Miniature Slinky

These little guys are AWESOME! They are best used as a distraction, especially to keep idle hands busy while doing any primary questioning. Remember, just because someone with autism appears to not be paying attention (lack of eye contact, engaged in another activity), they typically can still hear you and process what you are asking. It will simply take a little longer, so be patient.

Autism Sensory Item Number 3: Fidget Toys

Similar to “stress balls” these fidgets are wonderful to have on hand. Within the stitched mesh there’s a movable marble. If you don’t have access to this type of toy, many dollar stores have the little squishy, nubby balls that work just as well.

Autism Sensory Item Number 4: Earplugs

Simple, soft foam earplugs from Walmart can help block out unnecessary noise on scene. Because they go inside the ear, however, someone with autism may or may not tolerate them. My son prefers headphones over earplugs but may use these if they are the only alternative and he’s heading into overwhelm from the noise.

Autism Sensory Item Number 5: Penlights

Children with autism are often fascinated with cause-and-effect activities. My son was OBSESSED with light switches and remote controls as a child. These disposable penlights are cheap and will offer a means for distraction during your assessment, without sacrificing any of your own personal tools.

I hope you found these items helpful. Remember; NEVER give a patient your phone, keys or flashlight. Trust me, I’ve learned the hard way!

What items have you found useful on a scene to calm a patient? Share your comments below!

image courtesy of interacting with autism

Managing Autism Meltdowns Before They Escalate

image courtesy of interacting with autism

image courtesy of interacting with autism

I’ve spent the last several years teaching emergency responders how to recognize someone as autistic, whether it’s a police matter, medical emergency or search and rescue call. This training has changed the way responders assess and handle situations, ensuring safety for everyone involved. The number one rule, at least in EMS, is that we all go home at the end of the shift.

I also teach emergency preparedness to Autism families to help them be ready for the worst in their community. This training includes what kinds of additional items they should consider putting in their 72-hour kit, how to best accommodate loved ones with autism if the need should arise to go to shelter during a disaster or severe weather, and much more.

Being an emergency responder myself as well as a single mom of two autistic teens, I realized that many of the calls we respond to have already become ​a crisis because a meltdown of some sort has occurred, and the situation is now escalated to the point where the family can no longer safely intervene. I started wondering how to help families BEFORE meltdowns become a crisis. Before public safety has to be involved.

But first, what exactly is a meltdown?

Basically, it’s what happens when the brain receives WAY too much information – most often sensory input – and cannot process this information in a conventional, organized manner. “Sensory Processing” refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

As an autism parent, I’ve learned over the last 14+ years that when my children are overwhelmed by the sensory triggers in their environment they are immediately thrown into survival mode – it is pure physical and psychological torture for them. Their senses are on fire and they have little control over themselves.

Even for adults with autism, a meltdown feels nothing short of overwhelming, paralyzing and out of control…

It’s like their “browser” has too many tabs open and crashes, only it’s their entire body. Their brain hits Ctrl-Alt-Del automatically, causing fatigue, disorientation and the loss of ability to speak.

And it’s behind nearly all of what everyone else sees as “bad behavior.”

Here is a (credited) video I use in my training, created by Interacting With Autism, illustrating a simple day-to-day sensory meltdown a boy experiences in a coffee shop.

Sensory Overload (Interacting with Autism Project) from Miguel Jiron on Vimeo.

Stressful, right? Now, imagine a disaster or emergency situation – where lights and sirens and a crowd of uniformed people and nosy neighbors are gathered around – and add that in for good measure. It’s beyond chaotic; it’s completely overwhelming.

I started thinking about ways to broaden my reach and help educate autism families about public safety interactions… and then I took it a step further.

What if I could help families manage meltdowns as soon as they start? What if there was a way to calm the nervous system and help someone with autism regain control of their senses before they went all the way down the “rabbit hole?”

I found an amazing tool that does just that. Whether a meltdown is from sensory overload or anxiety that often accompanies autism, this unique method can literally stop a meltdown in its tracks and provide instant relief for the person experiencing it. No, I’m not talking about any type of​ cure, of course, ​rather a way to manage a meltdown before it escalates out of control. I’ve been working with families and autistic adults alike and the results have been truly amazing.

If you’re struggling with anxiety attacks and meltdowns, or if you want to help your child overcome debilitating sensory overwhelm, I can truly help. I even use this method on myself when I’m facing a stressful or dangerous 911 call on the job! For all the emergency responders on my mailing list, this may also be a good tool to learn to help calm patients or families on scene, even if it’s a bit unconventional.

For the month of November, as my way of giving thanks for the gifts I have in my life and the relief my children and I have experienced from this priceless technique, I’m offering a complimentary consultation for my next 10 clients. If it feels like a good fit for you or your child, I’m also extending a deeply discounted session rate of just $37.

For me, November is a time of gratitude, reflection and giving back to the community. If this resonates with you, click here to find out more. I’m so excited to work with you!

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.

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 freedigitalphotos.net

Autism Tips for Emergency Responders: Pain Perception

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

Identifying sensory issues have always played a large role in autism. In fact, it’s what finally led my son to a correct diagnosis. I spend nearly one-third of my autism training class talking about sensory processing and how people with autism perceive the world, because I believe that once emergency responders understand what’s physically going on with someone – with their brain and nervous system – they may recognize them as autistic on a scene and possibly adapt their response to de-escalate or prevent a meltdown.

In addition to sensory issues, it is known that someone with autism may not have the same response to pain as a neurotypical person. That may mean that an autistic individual could have a severe injury and be completely oblivious to it, or have a completely inappropriate response.

Few investigators have looked into how people with autism experience pain. New information suggests, according to unpublished research presented at the 2015 Society for Neuroscience annual meeting in Chicago, that autistic people show abnormal brain responses when a painfully hot object is placed against their skin. These new findings come from one of the first brain imaging studies of pain processing in autism.

SpectrumNews.org reported that in the study, 17 adults with autism and 16 unaffected adults were placed in a functional magnetic resonance imaging (fMRI) scanner with a small piece of metal strapped to one calf. The metal heated up over three seconds to 120 degrees Fahrenheit — hot enough to hurt, but not to cause injury. The metal stayed hot for 12 seconds, then cooled to room temperature. The researchers measured participants’ brain activity through a dozen of these cycles of pain and relief.

The brain’s response to pain has three phases: early, intermediate and late. The study showed that people with autism had very similar levels of brain activity as the neurotypical control group during the early phase, or the first seven seconds of heat. The initial pain processing showed nearly identical brain activity in the somatosensory cortex, a brain region that governs touch.

However, it was during the last five seconds of the heat and cool down that showed dramatic differences. After the painful stimulus ceased the brain activity in the control group was still responding. It was noting that the body was in pain and logging it for future memories. In the autistic group, all brain activity around the pain center was completely gone once the pain ceased.

This suggests that, while the initial processing of pain may be the same in both groups, the later steps that relate to the cognitive and emotional evaluation of the pain are definitely not.

I always tell the story about how my son – who has been executing self-taught computer coding to create his own video games since age nine – will touch a hot stove, burn his hand, and go back and do it again. I always believed this was due to his inability to think through or process cause and effect connections and their consequences (and that’s still part of it). However this study may help me understand more about my son, and help clinicians get a better handle on pain perception in autistic individuals they treat.

right-arrow-hi

Using Redirection to Avert Harmful Stimming

right-arrow-hiRepetitive behaviors such as spinning objects, opening and closing things repeatedly, rocking, arm-flapping, squealing, making loud noises or even hitting are common in those on the autism spectrum. Often ritualistic, they are known as perseveration or self-stimulatory behavior (stimming). While they may seem pointless and “weird” to us, they fulfill a very important function for the person carrying them out, such as relieving anxiety, counteracting and overwhelming sensory environment, regulating the nervous system or simply letting off steam. The frequency and severity of the behaviors varies from person to person.

When Stimming Becomes Dangerous

When responding to a call involving an autistic individual, you may encounter someone stimming in response to the stress of the emergency situation you’ve been called to. I always advocate letting the behavior continue, as it typically helps the person self-calm. The only exception is when they are hurting themselves or others. Self-calming may quickly escalate into self-injurious behavior such as hitting themselves, head banging, chewing their hands or biting themselves.

Redirection by definition means to direct again; to change the direction or focus; to channel into a new direction. It is a tool that can help interrupt the behavior. If the scene is safe you may be able to use this technique to modify harmful behaviors and help direct the person to an alternative, safer one. It may take a few attempts, but can successfully take the focus off negative coping behaviors and de-escalate the situation.

To redirect you need to quickly interrupt the negative behavior, with as minimal attention as possible. Of course, done at home in a calm environment a caregiver has an opportunity to teach, practice and continue positive reinforcement until the person can successfully recognize and modify the behavior. In the field, you may have to use a more dramatic interrupting method. Remember that you are not punishing the person for inappropriate behavior – a behavior that is serving a purpose for them – you are more or less “shocking” their system to allow for a new focus. This may look like using a different tone of voice, issuing a job or task, or even doing something outlandish, like breaking out into song. Yes, I have done this before with successful results!

I recently saw this on Facebook… definitely a true story for me.

redirection for autism meltdown

Initially you want to start with a high-probability request: one the person is LIKELY to comply with on the first request, without further prompting (“point to your nose”, “stand up”, etc.). Follow that with a series of two or three more high-P requests together and one low-P request (one the person is UNLIKELY to comply with). Keep it simple and offer praise after each successful high-P compliance. Extend and magnify praise when they comply with the low-P request.

When you are redirecting behavior, remember the whole point is to emphasize the replacement behavior that you want. If there is no replacement option, it will be impossible to redirect.

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!

Autism and Temperature Regulation

Autism Tips for Emergency Responders: Temperature Regulation

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

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

Atlanta One Inch of Snow

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

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

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

The Science Behind Temperature Regulation Issues

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

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

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

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

image courtesy of exciteddelirium.org

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

image courtesy of exciteddelirium.org

image courtesy of exciteddelirium.org

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

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

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

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

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

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

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

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

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

Sensory Processing Meltdown

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

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

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

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

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

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

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

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

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

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