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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 New information suggests, according to unpublished research presented at the 2015 Society for Neuroscience annual meeting in Chicago, that autistic people show abnormal brain responses when a painfully hot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.

autism halloween safety

Halloween Safety for Autism Parents and First Responders

autism halloween safety Halloween has always been the most important holiday in our house. My daughter would beg me to put up the decorations on September 1st, and then submit long-winded arguments for putting Santa hats on the Halloween décor instead of taking it down for the holiday season.

Trick or treating is another story. Take one elaborate but sensory-aggravating costume, spooky lights and decorations, crowds of loud children on the streets, and possible sugar and chemical dye sensitivities from loads of candy… and you may have created the perfect recipe of a meltdown. Also, there are rules about how we knock on doors and how we talk to people that are extremely difficult for my son to understand and comply with.

What about Halloween safety? On average, twice as many children are hit and killed by cars between the hours of 4pm and 10pm on Halloween compared to the same timeframe on any other day of the year, according to Safe Kids Worldwide. Emergency Departments often see other Halloween related injuries such as eye injuries from sharp objects and burns from flammable costumes.

Add autism to the mix and Halloween can become a nightmare for parents and a challenge for responders.

Here are some tips for a parents and caregivers for a safe and enjoyable Halloween, followed by what safety issues to be aware of as a first responder:

Autism Halloween Safety Tip #1: Costumes

Let your child practice wearing their costume at home for at least a week in advance. This gives you time to make any last minute modifications and time for your child to get used to it. I wish I had a nickel for all the times it took me to learn this one.

Avoid costumes with masks or hats that restrict sight or movement. It may be worth it to start with an item of your child’s own clothing or a Halloween t-shirt. Also avoid costumes that require extra accessories – your child will not want to carry them for long and they also may contribute to tripping or other safety hazards. Trust me on this one.

Autism Halloween Safety Tip #2: Trick-or-Treating

Be aware of any homes in your neighborhood have displays with lots of gore and special effects so you can avoid them.

Use repeated social stories for safety tips about crossing the street. In addition, carry glow sticks and a flashlight if you are going out in the dark.

Make sure your child wears some type of identification in case of wandering. We love If I Need Help, an amazing company that offers unique QR Codes for individuals that may wander via patches, shoe tags, ID cards, dog tags, pins, clips and more.

Create a visual schedule that includes a map of where you will go. It’s also a great idea to practice trick-or-treating at home the week before Halloween: take turns answering the door to give out the candy and being the trick-or-treater.

Autism Halloween Safety Tip #3: The Swag

Make a plan for how you will handle candy consumption. A gluten or dairy intolerance may be an issue with Halloween treats, as are food dyes and extra sugar. Decide the candy-eating rules in advance and write them down so they are clearly understood before the actual night.

First Responders, what do you need to be aware of?

Autism Halloween Safety Issue #1: Inappropriate Behavior

You may run across or be called to a scene due to inappropriate behavior. Perhaps you see a person lying in the middle of the road. Be aware that this may be someone with autism that has completely shut down due to sensory overwhelm and is unable to get themselves somewhere safe to ride it out. You might be thinking, it’s just a child – pick them up and move them. My son is only 13 and he is seven inches taller than me and wears men’s large or extra large clothing size. If he were to shut down in the middle of the road, I would have a difficult time moving him by myself.

Something else my son did in his earlier years of trick or treating was kicking the doors of people’s houses instead of knocking. He wasn’t being malicious or intentionally causing trouble – he had severe impulsivity and was sensory seeking (his nervous system was underactive and craved constant input in the form of hitting, crashing, biting, etc.). As you can imagine, this did not go over too well with some of the homeowners.

Autism Halloween Safety Issue #2: Heat Related Injuries

Autistic individuals tend to have issues regulating body temperature. Here in Georgia it has been known to feel like summer on some Halloween nights. A child’s costume worn over their clothes plus more physical activity than they are used to can cause mild hyperthermia or dehydration.

Also be aware that loose, flowing costumes may catch fire if a person lines their walkway with candles or open jack-o-lanterns.

Autism Halloween Safety Issue #3: Fall Related Injuries

Vision, our dominant sense, is a neurological process and is therefore directly affected by autism. VISION is different than SIGHT (20/20). Vision is a neurological process that takes place in the brain. 65% of the brain is “wired” for the visual system and 80% of what the brain processes is via the visual system. It helps to think of the visual system as a major highway, and all other senses as exit ramps. The highway must be in great shape – no potholes or detours – so that you can efficiently and quickly get to your exit ramp (i.e., conduct your daily life). Vision has a huge role in guiding movement, touch, and balance.

Adding a mask with limited vision, loose costumes, and obstacles in strange driveways can compound these issues and cause someone to trip or fall.

Autism Halloween Safety Issue #4: Seizures

Nearly one-third of people with autism have Epilepsy, a brain disorder marked by recurring seizures, or convulsions. For about three percent of people with epilepsy, exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures.

Some houses use strobe lights or flashing lights as part of their Halloween decorations.

Autism Halloween Safety Issue #5: Wandering

If you encounter someone trick or treating alone, look for devices or IDs that may identify the person as autistic. They may have bolted away for their group or caregiver and it is likely they may head toward something shiny or a nearby body of water.

Keep a careful eye out for wanderers for a few days after Halloween; I’ve heard from other parents that their child continued to trick-or-treat on their own the next day or even following week!

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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!