image courtesy of homeschoolingalmanac.com

Autism and Bullying

Posted on October 9, 2016 by SpiritOfAutism

image courtesy of homeschoolingalmanac.com

In late 2009 I packed my house, my kids and my dog and moved us to Knoxville, TN

on a whim. It took much longer to drive a 27′ truck (that was towing my ’96 Chevy Blazer) filled with 5 years worth of crap than we anticipated and arrived in the middle of the night.

The next morning I was unpacking and trying to get our newly rented townhome organized. My kids were buzzing about, trying to soak in everything about our new life in Tennessee. While working in the kitchen, my son, who was 7 at the time, kept walking in and out of the front door. At first, he was bringing small pieces of candy outside. I didn’t pay much attention, even though I probably should have curtailed his snacking until dinner (we were still in shock from the move). Soon after, he began walking outside carrying some toys from his toy box, and would return empty-handed, only to retrieve more items from his room and bring them outside.

I became quite concerned and curious, and when I saw him begin to take his Razor Scooter outside I stepped in. “Whoa, buddy! What’re you doing with that scooter? Where have you been putting all those toys?”

He replied, “They’re for my new friends outside.”

I walked outside and confronted a group of older girls, who I quickly ascertained were getting a kick out of telling this new kid in the neighborhood to keep bringing them things from his house. It started with candy, then they kept sending him in to bring them more items. They thought they had scored big when he was about to turn over his scooter.

I was furious. He was so sweet and innocent and really thought these new kids were his friends, while they were clearly taking advantage of his naive nature. They thought it was hilarious.

I won’t tell you exactly what was said to them when I got a hold of them, but suffice it to say, they no longer hung around our part of the neighborhood after that.

Although it’s not the classic “Hey, kid – give me your lunch money or else” type of bullying, that incident was indeed bullying. We are fortunate that it did not include any type of physical confrontation or abuse, but who knows what it might have escalated to if I hadn’t stepped in.

Autistic people are very kind and trusting. It’s an amazing quality that my children, my clients and my autistic friends possess should never change! But it can create a problem when interacting with the rest of society, because some people can smell that kind of innocence and pounce all over it with no mercy.

I came across a news story yesterday that absolutely floored me. I don’t get emotional about the news very often, but hearing that bullies set fire to a 10 year-old autistic boy in Texas broke my heart. It’s beyond horrific – one boy actually doused this child in gasoline and set him alight. He is in critical condition right now, and his organs are beginning to shut down. I have no words.

What really stood out to me in that article, was this quote from the child’s mother:

“My son is a special guy. He was rowdy and he liked to have fun,” she said. “He considered these guys his friends, but they would make fun of him and pick on him and tease him. He was usually the brunt of that kind of joke, but he kept playing with them.”

He kept playing with them, despite being bullied. He considered them his friends.

A new study finds that children with autism spectrum disorders are bullied far more often than their typically developing peers — nearly five times as often — but autism parents believe the rate is even higher than that.

In the study, about 46% of autistic children in middle and high school told their parents they were victimized at school within the previous year, compared with just over 10% of children in the general population.

Ironically, it is the highest functioning autistic individuals that are most at risk for bullying. Because you can’t look at a person and tell they are autistic, social awkwardness becomes more obvious, making it harder for peers to understand.

The study, published in the Archives of Pediatric and Adolescent Medicine, states:

“Children with autism who could speak well, for example, were three times more likely to be bullied than those whose conversational ability was limited or absent. Further, those who were mainly educated in mainstream classrooms were almost three times more likely to be bullied than those who spent most of their time in special education.”

What does autism and bullying mean for emergency responders?

In EMS, we are mandatory reporters of suspected child abuse. Typically this means we should be asking key questions and holding certain observations when assessing a patient:

What are the living conditions of the child? Do they appear to be unsafe or unsanitary?
How does the family relate to the child in the current situation?
How does the caregiver interact with the EMS professionals?
Are the injuries consistent with the mechanism of injury?
Does the story being told change over time?

When interacting with a patient with autism, it is critical to look at the bigger picture, even beyond the caregivers and the environment. You may need to raise your index of suspicion to the possibility of bullying outside the home. Many times even the parents are unaware, simply because the child considers their bullies to be friends.

You may need to ask parents or caregivers additional questions that don’t typically fall in our assessment survey, such as:

Are there any unexplainable injuries?
Does the patient frequently have lost clothing, books, or electronics?
Does the patient often complain of frequent headaches or stomach aches, or generally feeling sick?
Are there changes in eating habits, like suddenly skipping meals or binge eating?
Does the patient experience difficulty sleeping or frequent nightmares?
Do they exhibit an increase in self-destructive behaviors or stimming?

Being observant, looking at the bigger picture, and considering bullying as a possibility in these cases is vital. Your perception of a call may indeed save a child; it may prevent a situation from escalating to the point of being set on fire.

Autism Anxiety: It’s Not What You Think

Posted on September 1, 2016 by SpiritOfAutism

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

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

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

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

There is so much more to it than that.

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

So what is autism anxiety? How is it different?

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

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

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

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

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

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

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

Let’s start with what NOT to do:

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

What SHOULD you do?

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

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

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

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

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

Posted on August 9, 2016 by SpiritOfAutism

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

image courtesy of Cam Hytche

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

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

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

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

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

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

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

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

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

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

Missing autistic child lesson 1:

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

Missing autistic child lesson 2:

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

Missing autistic child lesson 3:

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

Autism Safety Tips for Playing Pokémon GO

Posted on July 30, 2016 by SpiritOfAutism

image courtesy of imgur.com

Sometimes, autistic people can be a bit rigid in their behaviors and averse to new experiences. My daughter, especially, who has a high level of social anxiety, has a really hard time with any type of change or new experience. My son is more open to new opportunities, but due to being more susceptible to sensory overload our options outside the home are more limited.

Regardless of the specific reasons, the result remains the same: they are less adventurous or open to starting conversations. According to this article, Pokémon GO seems to be successfully encouraging some individuals with ASD to explore the world a bit — and, just as importantly, to engage in conversation with other Pokémon fans in the process. I say individuals because we all know it’s not just kids playing this new viral sensation

On the flip side, an EMT, I’ve already witnessed some nightmare calls as a result of this game. I’ve responded to a couple of motor vehicle accidents, a pedestrian vs. auto, and an assault (mugging) – all directly related to someone playing Pokémon GO and NOT PAYING ATTENTION.

That’s why I was thrilled to discover a Pokémon GO Safety Checklist from Safe Kids DeKalb County whilst I was scrolling through my Nextdoor news feed. Here are the key takeaways from these safety tips:

Be aware of your surroundings and watch where you are going. Make sure you pay attention to where you are walking. I never advocate constantly staring down at your phone regardless. It is a great way to announce to predators that you are an easy target. Get into the habit of frequently looking up while you are on the phone. Situational awareness!!

Make sure somebody knows where you are going. Evidently the nature of Pokémon GO is that Pidgeys, Zubats and Weedles (oh my!) keep popping up on the map, a little farther away each time. That means you or your child could see another Pokémon just a little farther off and venture away into unsafe territory. Wandering is already an issue for so many autism families.

If you play at night, only walk in well-lit areas. Pokémon pop up everywhere, at all hours. It’s fine to find Pokémon in the park or on the street, but stay off other people’s property and vacant, boarded up buildings and homes. Don’t venture into sketchy areas because you are tempted by a rare Dratini sighting!

Do not drive a vehicle, ride a bicycle, or skateboard while playing. You should always hunt Pokémon on foot. It’s illegal to text and drive, so PLEASE don’t try to catch these invisible creatures while doing any of the above activities.

By the way, many of the calls we have seen have involved adults playing the game, not just kids. These tips are for everyone!

SIDE NOTE: The creator of Pokémon is autistic! My son proudly did a class presentation on Satoshi Tajiri in 2nd grade as soon as he found out they shared autism in common.

You can download the Safe Kids Dekalb County Pokémon GO Safety tips here!

Autism Tips for Emergency Responders: No Eye Contact

Posted on February 10, 2016 by SpiritOfAutism

image courtesy of freedigitalphotos.net

I read an awesome article on TheMighty.com that asked 16 different people on the autism spectrum to describe why making eye contact can be difficult for them. Any insights like this help me be a better parent to my autistic teens and a better educator for emergency responders.

Lack of eye contact may be considered rude or antisocial to those who don’t understand it. However, in an emergency situation that involves first responders, it can be misconstrued as evidence of guilt, non-compliance, or even altered mental status, all of which can put an emergency responder on the defensive and potentially lead to a call going downhill fast.

The Mighty asked their readers with autism who find eye contact difficult to share a description of what it’s like for them. I think some of these quotes are really helpful for emergency responders to be able to understand and identify what’s really going on when someone with autism cannot look at them. The full article can be found here, but some of my favorite descriptions are:

“It’s abstract to me and can be draining. Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded. It can disrupt any thought or speaking process I have going on and zaps my energy quickly.” — Laura Spoerl

“To me, eye contact feels like I’m being stared at, like I’m being scrutinized and judged. It makes me uncomfortable because I feel like I’m under immense pressure, and the tension builds and builds until finally I have to look away. It feels almost confrontational, which causes me a lot of anxiety.”— Emma Wozny

“It can feel like you’re standing there naked. It’s very difficult to form a coherent thought with all of this going on in your head. ” — Megan Klein

“When I make eye contact, the world around me blocks out. I can only process the immense pain and discomfort that comes to my brain. This pain goes if I look away.” — Lucy Clapham

“For me it can be a physical pain; it feels like burning with too many emotions, and I just can’t take it in all at once.” — Rosie Howard

“There’s plenty enough for us to concentrate on mid-conversation without the demand to do something which, quite frankly, feels very unnatural to many of us. You can have my eye contact, or you can have my concentration. Choose whichever one you value more.”– Chris Bonnello, from Autistic Not Weird

“Eye contact is hard for me because I am easily overwhelmed by lots of different input. When I am trying to listen, follow, or contribute to a conversation or just manage all my different sensitivities, it is easiest, most comfortable and least painful for me to not make eye contact. I listen and focus better when I am not making eye contact.” — Erin McKinney

My co-trainer at Spirit of Autism, Austin Harris, told me what it’s like for him, and how he’s learned to manage it:

“Eye contact is difficult for me because it makes me very nervous when I’m being looked at directly. It makes me feel uncomfortable in an unexplainable way. One tool I use to combat this is quick contact by looking at multiple people and objects. This works especially well for public speaking and teaching where you need to talk to the group instead of one person. What I do is I make brief contact every so often with different individuals so I am not focusing on just one person’s eyes.”

My daughter shared this with me about her experience:

“If I’m coming up on a person about to pass me, I drop my gaze immediately. If I happen to accidentally lock eyes with them, I feel a tinge of panic. What are they thinking? Are they thinking about me at all? Did I rub them the wrong way? I’d rather be invisible to them, and chances are likely that they thought nothing of it, but I remember it.

There’s something very uncomfortable about looking directly into somebody’s eyes while they’re staring at you. I don’t know what’s going on and I’m trying to evaluate the situation. And how long are you supposed to keep eye contact, anyway? If it’s too short, it may come across as dismissive; if it’s too long, it’s way too awkward. It’s a lot of processing and confusion that goes on underneath the surface in a matter of seconds, and when there are responses and replies expected of you on top of that, it gets to be overwhelming sometimes.”

I think the biggest takeaways for emergency responders when it comes to lack of eye contact are:

If someone with autism isn’t looking at you directly it does not mean they aren’t listening.
It can be physically painful for an autistic person to maintain eye contact with you.
A person with autism may need to avoid eye contact in order to process and focus on what you’re saying to them.

Rather than demanding that someone look at you when you are speaking, it may be helpful to simply ask a person that’s not keeping eye contact with you if they are listening, if they understand you, if they can repeat back what you just said, or even if they’d prefer to communicate by writing.

Autism and Shoplifting

Posted on November 22, 2015 by SpiritOfAutism

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.

Does Weather Affect Autistic Behaviors?

Posted on November 8, 2015 by SpiritOfAutism

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!

Halloween Safety for Autism Parents and First Responders

Posted on October 25, 2015 by SpiritOfAutism

Halloween has always been the most important holiday in our house. My daughter would beg me to put up the decorations on September 1^st, 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!

Autism in the Emergency Room

Posted on October 18, 2015 by SpiritOfAutism

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.

Autism and the Criminal Justice System

Posted on September 27, 2015 by SpiritOfAutism

During the introduction of my Autism Training for Emergency Responders class I talk about how special needs individuals are seven times more likely to interact with first responders, usually due to wandering, comorbid medical conditions and severely escalated behaviors that may mimic mental illness, drug abuse or just plain non-compliance.

What happens when someone with autism enters the criminal justice system? There are currently no statistics going beyond interactions in the field, but it certainly does provide a challenge and opportunity for myriad complications.

Problems with sensory overload, poor understanding of sarcasm, idioms and exaggeration as well as non-verbal communication such as facial expressions and body language can foster inappropriate responses that lead to trouble for the autistic individual. Add to the mix their trusting vulnerability and inability to deal with changes in routine or structure and people with autism often get into trouble without even knowing they committed an offense.

I’m not saying that someone with Asperger’s or autism will NEVER intentionally break the law, but so often these situations get easily misconstrued. The individual may have technically committed an offense, though the criminal behavior might have been an act of impulsivity, with no intent to do harm.

My son will repeatedly make a threatening or, at the very least, rude remark to me and then is shocked when I get upset with him. He has learned to apologize when I tell him he was hurtful or inappropriate, yet he has no idea WHY he’s apologizing because in his mind, he simply made a truthful or logical statement. Or he was repeating something he heard but has no idea what it actually means.

These kinds of “processing differences” could lead to him getting in trouble with the law down the road. The Asperger/Autism Network cites examples of unintentional offenses such as:

Making threatening statements
Inappropriate sexual advances
Being an accomplice to a crime due to the influence of false friends
Making physical outbursts in a public place or within the community

Criminal justice professionals may observe a high-functioning autistic person as appearing “normal” then diagnose their seemingly odd behaviors – such as lack of eye contact, changing the subject and blunt honesty – as disrespectful, evasive and belligerent. Sometimes someone with autism uses loud vocal tones, repetitive motions and laughter as a way to cope with both the anxiety of the situation and the overwhelming sensory environment, which is often misread as guilty and remorseless behavior.

The following strategies will help prepare you for successful interaction and communicating:

Approach the person a quiet, non-threatening manner
Allow more time for processing questions and delayed responses
Do not interpret limited eye contact as deceit or evidence of guilt
Avoid phrases that have more than one meaning or may cause confusion when taken literally, such as “Are you pulling my leg?” or “What’s up your sleeve?”
You may need to repeat or rephrase your question
Stick to narrative style questions rather than “yes” or “no” type questions – they are more reliable
Be prepared to write down or draw out the question for visual processors
Be patient – avoid becoming emotionally aroused and upset
Be aware of sensory processing issues: keep lighting low, limit distracting images, eliminate the presence of non-essential personnel, avoid using perfume or aftershave if possible, and avoid touching the person unless absolutely necessary
Seek assistance from objective professionals that are familiar with autism

Most police departments have a Crisis Intervention Team, which staffs a psych nurse and an officer trained in psychiatric crisis management. They have many tools available to them that other officers may not. If you suspect autism, seek assistance from department assets such as a mobile crisis team or unit early on in the legal intervention, as they can help identify if the person may require special assistance from psychiatric professionals.

Spirit of Autism, LLC

Autism Training for Emergency Responders • Emergency Preparedness

Category Archives: Tips & Tools