Tag Archives: emergency responders

autism no eye contact

Autism Tips for Emergency Responders: No Eye Contact

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autism no eye contact

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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.

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Autism Tips for Emergency Responders: Adult Meltdowns

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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

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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

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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!

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Autism and Shoplifting

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image courtesy of cjonline.com

image courtesy of cjonline.com

The holiday season is finally upon us. For most civilians that means family gatherings, Black Friday deals, tons of decadent treats, trimming the tree and more. For some public safety personnel, it means an increase in public disturbance and shoplifting calls.

How does Autism fit into this?

There are a few things to consider. At first you may get called for someone “acting strangely.” A retailer might read certain behaviors as suspicious and assume the person with autism has intent to steal or cause trouble. Some behaviors you may encounter include:

  • Methodically walking through the store in a certain pattern
  • Rearranging or lining up items on shelves
  • Staring at displays, lights or ceiling fans
  • Opening and closing doors
  • Appearing nervous and agitated
  • Unable to wait in line for their turn to pay
  • Pushing someone out of the way to obtain an item
  • Sitting on the floor rocking back and forth covering ears

Due to an obsessive need for an object, sensory overwhelm from the environment, or self-control issues that cause an inability to wait in line, a person with autism may grab an object and leave the store with it. More often than not, they are completely unaware that they have committed a crime.

Occasionally, you may also uncover that a thief has sent someone with autism into a store to retrieve an item for them. Autistic people can be eager to please and are usually compliant and trusting.

While these behaviors appear as vandalism, plotting to steal, or bullying, they are usually part of impulsive behaviors that can often accompany autism. Unlike a typical shoplifter, an autistic person will most likely walk right out of the store with the item completely visible. They will not hide it or sneak it into their clothing.

These are not excuses, of course. I am most certainly not telling you to let a person march into a store, display disruptive behaviors and walk out without paying for merchandise simply because they are autistic and may not be able to help themselves.  What I am saying is, if you respond to a call for someone acting strangely and they are carrying out repetitive behaviors or seem “tuned out,” consider the possibility that something else is going on.

Evaluate the behavior, look for alternative IDs or communication devices, get them to a quiet, safe place and contact their caregiver if possible.

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1 in 45 Children Now Diagnosed with Autism: Should We Be Worried?

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It’s time to update my website, brochures and training materials again… according to the latest numbers released from the CDC this past Friday (the 13th!), 1 in 45 children in the United States has an autism spectrum disorder.

According to livescience.com, this new report is based on data collected during the yearly National Health Interview Survey, from interviews of parents about their children.

The CDC’s previous estimate (yes, I said estimate) put the rate at 1 in 68 children. Though this looks like another significant increase in a short amount of time, there are some other factors at play.

There is an increase in autism awareness now among parents and healthcare providers that was lacking in past years. Some kids were automatically labeled as having a developmental disability rather than being diagnosed with autism. There have also been recent changes in the diagnostic criteria and symptoms used to describe ASD.

As an autism diagnosis is becoming less and less of a stigma in our society and there has been an exponential increase in services and support, doctors are being more thorough and less likely to “under-diagnose.”

In this latest study, the way data was collected has also changed, which may play a role in the increased numbers. Putting the question about autism second in the parent surveys, before the question about other developmental delays, resulted in the data showing a higher prevalence rate for ASD and a lower prevalence rate for other developmental delays. The opposite seemed to occur in 2011 to 2013, when the questions were the other way around.

Though there is somewhat of a divide in the public opinion of increased number – broader diagnostic criteria versus food and environmental factors – most experts feel these latest results are probably a more accurate measurement of the true prevalence of autism.

My question is, are we even taking into account how many PARENTS are now getting a diagnosis of autism after their child’s diagnosis? I have seen this so much – parents who thought they were simply “quirky” or had other diagnoses are now putting the puzzle together for themselves and finding great relief in better understanding their sensitivities, thought processes and social struggles. What about all the females with autism that are either diagnosed in their late teens/early 20s or NOT AT ALL because their behaviors don’t fall under the “classic” signs of autism typically seen in males?

My guess is there are a lot of awesome NEURODIVERSE individuals walking around that have an autism spectrum disorder – our specialists, our innovative thinkers – that are changing the way our world works.

My favorite blog post from Stark Raving Mad Mommy is called “Little Specks of Autism.” She says, “More and more, I see it in myself, my family, strangers. Not full-blown autism; not something that hampers life to the point of needing intervention. Just specks of autism. Our anxiety, our OCD, our sensory issues, our weird selective hearing issues are all little specks of autism.”

Should the 1 in 45 worry us?

I don’t think it’s even important, honestly. As emergency responders, here’s what is:

  • Is your patient/victim/(even) perp having an overwhelming sensory response to his or her environment?
  • Are they experiencing communication difficulties?
  • Are they unable to look you in the eye when you’re speaking to them?
  • Can they process and understand exactly what you are asking of them or telling them?

If the answer is no to any of these, the next step should not be to fine-tune a diagnosis but to treat the person. We can try to recognize a challenging behavior not as someone who’s giving us a hard time, but someone who’s having a hard time. Whenever possible, using the methods I teach in my autism training, we can adapt or modify our response if it makes sense and the scene is safe for all involved.

weather and autism

Does Weather Affect Autistic Behaviors?

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weather and autism Anyone in the Atlanta area can attest to how dreary and frustrating it’s been to wake up to recent days of endless rain. I feel like it’s been raining for months straight! Memes are starting to pop up on Facebook naming us Atlantis or Seattle, Georgia. Oh and the MUD! I have two huskies that go and sit in mud puddles in the back yard – you wouldn’t believe what my carpet and furniture looks like, despite daily cleanings.

But dreariness and carpet mud cakes are not the only side effects of bad weather. I’m hearing from parents and teachers that children have been especially wild, fidgety, irritable and aggressive during this endless bout of downpours. In fact, low pressure systems have long been linked to increased behavior problems in children. In my own household, I’m seeing its effects as well. My son is much more “in your face,” making increased noises, and treating almost every object in our living room as if it’s a soccer ball and he’s Pelé, going for the winning goal. My daughter has been extremely achy, moody and depressed. But then again, she’s 17. Isn’t this normal for a teenage girl?

What is barometric pressure?

Barometric pressure is the weight of the overlying air pressing down on the earth. It is also known as air pressure.   Low barometric pressure means the overlying air is rising, whereas high pressure means the overlying air is sinking. High barometric pressure supports sunny, clear, and favorable weather conditions. Low barometric pressure promotes rainy and cloudy weather conditions.

The Canadian Psychiatric Association published a study concluding that, “low barometric pressure is associated with an increase in impulsive behaviours.”

It seems to be magnified in children who already struggle with impulsivity or behavior issues. On a forum called Healthboards.com, a teacher that works at a Jr. High school noted that it has a big impact on the behavior of her students (especially the 7th graders). Students who have a tendency to be impulsive or hyperactive are particularly impacted. Another parent stated that their 7 year old (PDD-NOS) has always been sensitive to this, noticing a correlation between his moods, behaviors, aches and pains and the pressure in the air. You can read their specific comments here.

Tips for Weather-Related Autism Behaviors

Expect increased calls or issues during bad weather and low pressure systems. If you are responding to a call involving someone with autism, increased aggression, anxiety, impulsive behaviors and sensory issues may occur.

It is especially important to try and reduce sensory triggers and keep the environment as calm as possible. Even a small effort to district with a tactile object (such as a piece of gum or a slinky) may help de-escalate someone in a meltdown.

Be prepared to wait it out. Once you know there’s a reason for the behavior, it’s generally easier to get through it. The storm will pass, in more ways than one. Let’s hope Atlanta’s rain will do the same!

image courtesy of freedigitalphotos.net

Autism Tips for Emergency Responders: Pain Perception

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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

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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!

image courtesy of horizonhealth.eu

Autism in the Emergency Room

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image courtesy of horizonhealth.eu

image courtesy of horizonhealth.eu

Autism families learn fast and early how to effectively anticipate and manage a crisis. When that crisis involves a trip to the emergency room, it can escalate quickly due to the sights, sounds, smells, and accelerated pace of the environment, which can quickly overwhelm an individual with autism.

Recognizing that someone has autism is only one part of a successful emergency room experience. Here are some other tips for the ED staff to help ensure a safe and manageable experience for everyone.

Emergency Room Tip #1: Decrease Wait Time if Possible

Recognize that simply entering a noisy, crowded waiting room may trigger acute anxiety and sensory overwhelm for a person with autism. This can result in escalated and challenging behaviors. If at all possible, accompany the patient and primary caregiver to a quiet room for initial assessment and registration. If the triage nurse determines the patient will need to wait to see a physician, provide a quiet place to do so.

Dim overhead lighting if necessary and possible and monitor the patient continuously for signs of overstimulation.

Emergency Room Tip #2: Caregivers Are a Wealth of Information

Most autism parents or caregivers are well versed in their child’s medical information and are extremely helpful in gaining cooperation. Use this information! Make sure to ask early about the patient’s primary form of communication; if they are non-verbal, make sure they have a method of communication familiar to them, such as a paper and pencil, pictures, gestures, or a communication device.

Find out from the caregiver what has worked in the past when at medical visits, what their particular sensory issues are, and what their heat, cold and pain tolerances are.

Emergency Room Tip #3: Explain and Demonstrate First

Order and expectation is everything to someone with autism. Try to explain procedures before performing them to help alleviate anxiety. Use simple words and drawings if necessary.

Demonstrating what you are about to do on yourself, a colleague or the caregiver is also helpful. These modifications call for extra effort and understanding, but go a long way toward a positive experience for everyone involved.

Finally, recognize that people with autism may be on many different medications due to comorbid conditions. They can be prone to allergic reactions or dangerous drug interactions. Only administer medications when absolutely necessary.