Weekly Autism Tips for Emergency Responders: ICE4Autism Interview

Posted on June 21, 2015 by SpiritOfAutism

I’m so excited to have connected with Wanda Refaely, creator of ICE4Autism, the only Autism-Specific In Case of Emergency (ICE) App. This awesome app provides first responders and medical personnel with actionable information quickly and effectively.

For families,

it’s a fantastic way to be prepared for situations that we never think will happen but, in reality, could. Some features include:

How you communicate — includes a drop down menu of commonly used communication devices and languages, and a place to describe how you communicate and want to be communicated with
Your unique behaviors and triggers — includes a drop down menu listing behaviors commonly associated with autism PLUS the option to enter your own details including telling first responders and medical staff how best to respond to make YOU more comfortable
Important Treatment Information — describe any issues, concerns and sensitivities that could be vital to YOUR proper care and overall comfort level AND describe ways to reduce your anxiety

ICE4Autism can also send an emergency alert text message — including your GPS location and a link to your location pinned on Google Maps — to your designated emergency contacts. Parents, spouses, caregivers and service providers can come to your side, advocate for you and help you through the ordeal.

For responders,

simply launch the ICE4Autism mobile app and you as a first responder, ER doctor, nurse or administrator have immediate access to the critical the information needed to treat the patient properly while helping to reduce what is sure to be a heightened level of anxiety.

Emergency situations are challenging for everyone. But add in sensory, communication and behavioral challenges, and an emergency can turn into a disaster for a person with Autism and the responders trying to help them.

Below is the video interview I did with Wanda, as well as the screen shots she mentioned in the broadcast. Please feel free to like and share the video, you’ll help more people be prepared for emergencies!

Weekly Tips for Emergency Responders: Girls Have Autism, Too

Posted on June 7, 2015 by SpiritOfAutism

For nearly ten years I have been ensconced in the world of Autism. I have spent countless hours in research, created home therapies, advocated for my son, created a Blog about our journey to help other parents, and eventually birthed a training program for emergency responders. For the past few years I have trained many police and fire departments, disaster response groups, EMTs, hospital security officers and more.

At times during this path, I have come across some Autistic behaviors and traits that better describe my neurotypical daughter than my son. I quickly dismissed them as Autism, mostly because I was comparing them to the “classic” signs I see in my son and teach about. She is very verbal. She doesn’t have (many) sensory processing issues. She doesn’t seem to have gross and fine motor deficits (though neither of my children can ride a bike). She was fairly social in elementary school. She can dress herself and doesn’t need help bathing or using the bathroom. She understands sarcasm and others’ facial expressions.

Recently she approached me with comments about her social awkwardness and lack of a filter when she talks to people and wondered if she might have Asperger Syndrome (a high functioning form of Autism). We started to look at the big picture:

As a toddler, she lined up all her Fisher Price farm animals and each one sequentially received an equal number of rides in Farmer Brown’s tractor.
When she pretended to serve family members tea, it was repetitive and always in an order that she proclaimed. If someone switched places or spoke out of turn she shut down.
She would hide under the table or in her room if we had any kind of company at the house.
She walks on her toes almost 90% of the day when she’s up and around.
She would refuse to get out of the car if we arrived somewhere and it didn’t match the schedule or routine I first verbalized before we left.
She only eats four foods, and they have to be very specific types within those foods. She has gone five days without eating as a preschooler because I tried to make her try something new (“children won’t starve themselves”… uh-huh). She literally gags or throws up when trying a new food.
She abhors showers. Now as a teen, she takes them when she absolutely has to because she’s aware of what others think. But it’s still a struggle.
She won’t wear shoes anywhere unless she absolutely has to, and if she does they’re usually flip flops.
She missed a third of 5th grade due to social anxiety and “illness” that couldn’t be defined. By 6th grade I had to homeschool her after she completely shut down several weeks in a row during Middle School.
She has no interest in shopping, makeup, hairstyles, shoes, hanging out at the mall, or any other typical “girly” things.
She only wears comfortable loose clothing and leaves her hair down.
Her only friends live in the computer, except for a childhood friend she met at age 5 that sees her from time to time.
She HATES new stuff. A new smartphone or computer will cause her great anxiety because she likes things the way she is used to them and doesn’t do well with change.
She has joined multiple groups and classes and always quits after a few sessions due to social anxiety and perceived notions that everyone hates her.
She was diagnosed as OCD, which fits, but there are also caveats and certain missing pieces to this.
She wakes me up in the middle of the night citing crippling fears of random things that might suddenly go wrong and cause her to die or be injured. Once a thought like this gets into her head she can’t make it stop.

Of course there is nothing wrong with some of these behaviors, I am not making any kind of judgements… just looking at the big picture. I dismissed many of them as her being an “eclectic” child, while secretly blaming some on bad parenting: me giving her too much leeway because I’m compensating for being a single parent and having to work so much.

Then we starting doing some digging together, met with her counselor and she received an official diagnosis of Asperger Syndrome.

In Georgia, 1 in 39 boys are diagnosed with Autism, while it’s only 1 in 181 girls. Whether or not that means Autism is more prevalent in boys or that girls are not being diagnosed because it presents so differently, we don’t know right now. Either way, recognizing Autism in girls can be tricky. Here are some specific things to look for or be aware of:

Most often seen as just “eccentric” or “quirky”
More expressive than male counterparts
Retreat into films, books or characters
May be highly educated but slow to comprehend
May not do well with verbal instructions
Anxiety and fear are predominant emotions
Will typically shut down in social situations but can socialize in “small doses”
Often prefers the company of animals to humans

These traits may not ever come to play on the scene of a crime, fire, disaster or medical call, but the more you arm yourself with Autism education the better you can do a scene size up and make fast decisions. You never know when you see someone “not acting right” and something from a blog post or Spirit of Autism training class will pop for you and make a difference in the outcome of the situation.

Weekly Autism Tips for Emergency Responders – Patient Assessment

Posted on May 31, 2015 by SpiritOfAutism

During a standard assessment in a conscious patient, we rely heavily on the patient’s communication – why EMS was called, what hurts, what happened, etc. This can become complicated when assessing a patient with Autism. Even a high-functioning, verbal Autistic patient may or may not physically feel pain. Sensory processing issues often include difficulty interpreting temperature and pain, and it’s hard to assess someone who can’t tell you what hurts!

Abnormal pain interpretation can sometimes mean a minor scrape or ache is perceived as a trauma or a major injury completely ignored. Traditional OPQRST surveys are not particularly reliable when someone has little sense of where their body ends and space begins and, most likely, what they ARE experiencing is not consistent with what you are observing on scene. Throw in communication deficits and sensory overwhelm of lights and sirens and being surrounded by strangers… patient assessment can be a sticky-wicket indeed.

The first thing you can do is try to remove sensory triggers if possible – remember that an ambulance setting can be extremely overwhelming for someone with Autism but so can the scene itself. Keep the scene as quiet and calm as you can.

Use the parent or caregiver and all the information they have to offer. Believe me when I tell you that most Autism parents have done their homework and know a great deal about their child’s challenges and medical issues. Establish a baseline behavior status to help in your assessment. I purposely did not say “baseline mental status” here because Autism is NOT a mental illness. While it is also not a behavioral issue, unfortunately we must rely on behaviors to help us identify Autism on a scene.

Remember that being touched may be perceived as pain, so do your best to engage the patient while triaging from distal to proximal. A Dollar Store slinky has done wonders for me – it distracts my patient while I get 85-90% of my assessment done before they realize what’s happening. (Don’t ever give a patient your cell phone or keys for this purpose, FYI!) Communicate what you are doing, whether they are verbal or not. A nonverbal patient can still hear and understand you. Bandages and adhesives may cause aggression due to sensory processing issues.

Assess thoroughly – look for less obvious injuries and DO expect the unexpected. Not long after I finished my first responder training, my son came running out of his room one evening screaming and raking his tongue. I quickly tried to figure out what was happening – did he bite it? Get stung or bitten by a bug he ate? Was there a toy in his mouth? In his other hand, I saw the glow-in-the-dark necklace from our earlier outing at Stone Mountain… bitten in half. The glowing liquid was all over his tongue and it was burning him. There was nothing about that in my first aid and responder manuals It was fine, by the way, Poison Control cleared him, but I never would have imagined looking for that kind of injury. Or the backward tumble out of the shopping cart at the grocery store, or the many times he’s wandered from school settings… but I digress.

Finally, during your assessment be aware of severe food and drug allergies as well as Pica Syndrome. Parents and caregivers are the best fountain of information, but in absence of that resource, there may be alternative IDs or apps that can provide you this valuable information in a snap.

Share your assessment tips and experiences – parents or responders – below. I love hearing from you!

image courtesy of crisisprevention.com's Risks of Restraints

Weekly Autism Tips for Emergency Responders – Facts About Restraining

Posted on May 24, 2015 by SpiritOfAutism

image courtesy of crisisprevention.com’s Risks of Restraints

Restraining someone with Autism is a touchy subject. Often, when I bring it up to emergency responders they immediately get defensive and feel I am purporting a shiny, happy world full of kittens and rainbows where no one gets hurt… and an Autistic person acting violently will 100% of the time respond favorably to a polite request to calm down.

I’m not a drama llama blogger that thinks I’m qualified enough to tell all of you that put your life on the line how to do your job. Nope. I’m a responder, too. And a parent of two Autistic teens that perceive and respond to the world very differently. My offerings are simply more tools for your toolbox. Never to REPLACE the job you have to do, but to help you, particularly with scene size up. To give you the knowledge to say, “Wait – there might be something else going on here.” You may or may not have the opportunity to respond differently, but if you have a deeper understanding of the behaviors you encounter and additional tools to fall back on, it helps everyone go home safely at the end of the day.

What You Should Know About Restraining

Ideally, it should be a last resort. CrisisPrevention.com states that, “other than to receive medical or nursing care, individuals should be restrained only when all of the following guidelines are met:

The person is an immediate danger to self or others
Other ways to manage the person’s dangerous behavior have failed”

Restraints must NEVER be used as punishment or to inflict pain. A physical restraint should be used as a temporary emergency measure to take control of another person only until that person has regained control of her own behavior and is no longer a danger to herself or others.

If giving a person a chance to self-calm or having a trusted family member or friend intervene is NOT an option, is there a way to simply seclude the person? If their meltdown behavior is a direct result of an overwhelming sensory environment (e.g., lights and sirens, crowds) calming can sometimes occur quickly when you remove sensory triggers.

If you do successfully move someone to a quieter area and they begin to calm down, it’s important to assign someone to be with them at all times. They may be a bolt risk or, if agitated again, could start self-injurious behaviors.

If you have exhausted your options or the person is injuring or could injure themselves or others, restraining may be necessary for the safety of all parties involved. From a physiological standpoint, here’s what you need to know:

Typically an Autistic person’s trunk (torso) is poorly developed, which affects balance, coordination, and especially their airway. Using standard restraint methods on someone with Autism may result in positional asphyxiation.

If you must restrain:

Especially dangerous positions include facedown (prone), a seated or kneeling position in which the person being restrained is bent over at the waist, or any facedown position on a bed or mat
Check their condition frequently – look for choking, vomiting, discomfort
Put them in a quiet, safe place away from others
They may have a difficult time supporting their airway
Turn the person on their side to ensure normal breathing
They may be prone to seizures
Be prepared for resistance – they may not understand why they shouldn’t struggle

It’s important to note that restrained individuals have gone from a state of no distress to death in a matter of moments. Avoiding high-risk positions that interfere with breathing is of course best; however, even in a standard position, an Autistic person is still at risk for positional asphyxiation. Be alert!

Weekly Autism Tips for Emergency Responders – Sensory Meltdown Vs. Tantrum

Posted on May 17, 2015 by SpiritOfAutism

Hey, Spirit of Autism family! I appreciate your patience regarding the fact that I’ve not been able to keep the Blog up to date while finishing Advanced EMT school. It’s been quite a ride but I’m nearly there! I can see a light (or is it flashing lights?) at the end of the tunnel…

I’m going to be transitioning the Blog to focus more on Autism Training Tips for Emergency Responders, Autism Safety Tips (for families and responders alike) and Emergency Preparedness for Autism Households. Previously the focus was on parents and caregivers only, which made it very confusing for those landing on my website, seeing that I do training for emergency responders, but solely reading about my journey as a parent. I will still be sharing lots of stories and personal experiences and of course adding my experiences and perspective as a parent – how could I not? My main focus, however, is to get critical information into the hands of emergency responders that have not yet taken my training course. To do this, I need to start offering it here.

If you have friends and family members in public safety, healthcare security, disaster response, or similar fields, please point them to the website! I want to go beyond local training efforts and start making a global difference.

So, the first in the Weekly Autism Tips for Emergency Responders [W.A.T.E.R.] series is… (sound the horns)…

Sensory Meltdown Vs. Tantrum

When I introduce my course objectives to class recipients, I talk about the definition of Autism, starting with what Autism is NOT. It is not a mental illness and it is not a behavior issue. At this point, students typically turn their heads and look at each other questioningly, as if I’m speaking Swahili. If I had a nickel for every time my son’s inability to cope with an overwhelming sensory environment was labeled a temper tantrum or behavior disorder. And I’m not just talking bystanders, this has happened with Special Ed teachers and pediatric neurologists.

I am a single mom. I’m not going to sit here and tell you that my child has never had a tantrum or behavioral outburst. He’s a BOY. With lots of ENERGY. Going through PUBERTY. Of course there have been times he’s tested those in authority. That’s what teenagers do.

Even knowing all I do about Sensory Processing issues, it is still a fine line to walk when discerning a sensory meltdown and an actual tantrum. I want to help arm you with some real, tangible signs and symptoms to help you tell the difference. Recognizing the physiological differences may change your response and radically alter the outcome of a situation. I’m not ever going to tell you to go against your local protocol or training and put yourself in danger. I’m talking about some really good scene size-up tools to help you respond in the safest way possible for all parties.

Signs and Symptoms of both a Tantrum and Meltdown

If you are just looking at the surface, it is challenging to tell what’s going on – the signs of both tantrums and meltdowns may present as screaming, kicking, shouting, stomping, swearing, biting, throwing, or hitting (either others or self-injurious behavior). Let’s go a little deeper:

A Tantrum typically occurs when a person wants something

A Meltdown is a response to environmental sensory overload or feeling extremely overwhelmed

During a Tantrum the person frequently checks to make sure you are paying attention to their behavior

During a Meltdown the person does not care if anyone is paying attention, they cannot stop themselves

A person acts this way in front of an audience during a Tantrum (behavior will cease when no one is looking)

During a Meltdown the behavior will continue with or without an audience

A Tantrum will cease abruptly once the person gets what they want

In a Meltdown situation, there is no goal – the behavior will cease only when the person can self-calm or when someone helps them regain control

In a Tantrum, there are no residual autonomic nervous system signs following the behavior; the person returns to normal activity within 5 minutes

A Meltdown will yield residual symptoms such as red ears, sweating, and dialated pupils; it takes 45-60 minutes for a person to return to normal following a sensory meltdown

Remember that someone experiencing a sensory meltdown is in survival mode – they are battling their environment and it is pure physical and psychological torture. Their senses are on fire and they have little control over themselves. No one chooses to be in a meltdown, and when you understand what’s happening to the nervous system and help someone through it your are not “giving in to” or “reinforcing” negative behavior. You are throwing someone a LIFELINE.

Stay tuned for future tips to learn more about Sensory Meltdowns and how you can most safely intervene.

Help Me Illuminate the Future for Those with Autism

Posted on March 24, 2015 by SpiritOfAutism

As you know, I am extremely involved in the Autism community, both to support my son and in the Emergency Preparedness/Emergency Responder arena. I am blessed and honored to be training some of Georgia’s finest men and women in uniform – Law Enforcement, EMS, Fire Rescue and Disaster Responders – on how to recognize and safely interact with Autistic persons on the scene of a crime, fire, medical call or disaster. My goal is to have all of Georgia’s responders trained within the next 18 months. The Autism Society of Georgia is helping me do that by fully endorsing my training programs!

April 2 is World Autism Awareness Day.

Please join the Autism Society of Georgia and me by helping us illuminate the future and create awareness for Autism.

For as little as $5.00 you can help us light a luminary for 1 child or adult.

There are over 150,000 children and adults in Georgia identified with Autism and we are making a difference. And, because my training programs are critical to the safety of the Autism community, the Autism Society of Georgia is giving 20% back to Spirit of Autism when you donate through my unique link so that I can continue to provide this training.

If you feel inspired to, you can click here to go to mydonation page or head over to Autism Society of Georgia’s The Future is Bright website to learn more about the campaign. From there you can choose Spirit of Autism on the right hand side by clicking my logo.

Thank you for being a part of MY community. I know you haven’t heard from me regularly in a while… I apologize! I’m almost done with Advanced EMT school and can come up for air soon : ) Now back to my IV drip conversions and drug calculations!

xoxo

Autism: Our Future Is Bright

Posted on February 3, 2015 by SpiritOfAutism

World Autism Awareness Day is coming soon and I’m SUPER excited to partner with Autism Society Georgia for this amazing campaign.

If you live in Georgia, you can help us spread the message that the Future is Bright for everyone touched by Autism.

For a donation of just $40 you will receive 12 luminary kits (each kit = one container and an LED tea light candle).

On April 2nd, illuminate your streets, parks, schools, churches, businesses and neighborhoods throughout Georgia in celebration of World Autism Awareness Day!

If you go to TheFutureIsBright.org or text “SAFE” to 71777 to make your donation, 10% of the money we raise will go directly to the Spirit of Autism to help us continue to provide Autism training for our first responders and families. Let’s help keep everyone touched by Autism safe and sound and let all of Georgia know that The Future Is Bright!

Please LIKE and SHARE this post so we can light one luminary for every person in Georgia with Autism. For a PDF download to print, click here.

A Different Kind of Social Story

Posted on September 6, 2014 by SpiritOfAutism

Butch trying to hide from my son. He doesn’t quite fit in his safe place anymore!

I have a serious problem at home right now. My son spends a lot of time on his computer (no surprise there to any of you, I’m sure!). During these times of programming, learning, chatting, and playing games a lot of energy builds up inside of him. His current way of releasing the energy and handling “boredom” during breaks is to constantly tease one of our Huskies.

His favorite thing to do is to immediately corner the pup (and by “pup” I mean our 100-pound boy who was the runt of the pack!) and start grabbing his fur or poking him until he starts snarling. Justin loves the snarl face. But he doesn’t stop there. He perpetually snaps at him with his hands until the puppy snaps back with his mouth. Getting his hand away just in time is a game for my son. Unfortunately, it’s a dangerous one.

While Butch, being more Malamute than Husky and more laid back, would never intentionally hurt my son or be aggressive toward him, dogs have a threshold for teasing. In my county, if a dog bites someone they are immediately removed from the home and euthanized without question. Of course, Butch has never hurt my son to date, but I know as a parent and a dog owner that the possibility of my son going too far lives in the back of my mind and it could have a very bad outcome.

I have tried explaining to Justin that Butch would get taken away and put to sleep (and to someone with Autism that means literally what it sounds like – someone making him take a nap). I have warned him numerous times that he could get hurt very badly. No amount of punishing, yelling, bargaining, or social stories have persuaded my son to stop teasing the dog.

Then I remembered a recent video blog by Carla Butorac about an app called My Talking Pet. This gave me an idea!

Using a communication style called NVC, I wrote a short script as if Butch were telling Justin how it makes him feel when he is constantly teased. NVC is best explained this way from NonViolentCommunication.com:

Most of us have been educated from birth to compete, judge, demand and diagnose — to think and communicate in terms of what is “right“ and “wrong“ with people.

We express our feelings in terms of what another person has “done to us.” We struggle to understand what we want or need in the moment, and how to effectively ask for what we want without using unhealthy demands, threats or coercion.

NVC provides a “template”, or a four-part process to an empathetic and compassionate communication style. I’ve been told by Autistic adults that NVC’s template really helps solve some communication riddles for them, as it’s like a linear formula that can help express feelings and needs in a safe way.

The four-part process starts with Observations: “When I (see, hear, notice)…” followed by your Feelings about the observation: “I feel…”. Next you state your Needs: “… because I need/value…” and finally presenting a clear, doable Request without demanding: “Would you be willing to…?”

I decided to give it a shot. Here is the video that Butch made, asking Justin to stop teasing him using this clear and compassionate communication style.

Keep in mind that we continue to experiment with physical ways for Justin to release energy and get more exercise. One way is using Adventure to Fitness videos (also found on Carla’s wonderfully resourceful Blog), which I’ll be talking more about on my Web TV show this week. Stay tuned for more about this great fitness program for your kids!

In the meantime, are there ways you are demanding a behavior from your child that they keep resisting? Could you reframe it with the NVC template and try again? Let me know your thoughts by commenting below!

Best Buddies Program

Posted on July 27, 2014 by SpiritOfAutism

I recently heard about a great program that has my son’s name written all over it! (Naturally, when I told him this, he literally looked for his name written all over the program page. It wasn’t there :))

Contrary to popular belief, my son can be very social. By social, I mean friendly and open-hearted when meeting new people. However, if after an introduction the conversation doesn’t revolve around computer code or video games, there is an awkward disconnect.

He has friends all over the world that he Skypes with. Yes, I’ve seen the video chats and know 100% that his friends are real kids his age and not some creepy 50 year-old man pretending to like Minecraft! J has been hacked before and that was super scary!

Anyway, our problem is that my kids homeschool and I work outside of the home part of the time. We miss a lot of homeschool gatherings due to my hours, leaving my kids little opportunities to meet peers. Additionally, being a single parent, I tried to apply for Big Brothers Big Sisters for my son so he has a positive male role model in his life. I was told there was a 4+ year-long waiting list. Whoa! Seriously?

That’s why I was absolutely THRILLED to see this come across my inbox. Although this post refers to the Atlanta chapter, you can go to their website to see if there are programs in your area, as it is an international organization.

The Best Buddies program connects individuals that have intellectual or development disabilities with students from Emory. Each participant will be matched with either one or two Emory students to form a “buddy pair/trio.” The program encourages buddies to contact each other several times a month in addition to hanging out at chapter events. You can also request that your son or daughter to be matched in a same-gender pair.

Once paired with a Buddy, they meet as a chapter once a month during the school year for activities such as movie screenings, arts and crafts, field days and more. Events are typically held on Sunday afternoons on or near Emory’s campus, located in Druid Hills. These usually last for two hours. The first event will likely be in mid-September.

As a result of their involvement with Best Buddies, people with IDD secure rewarding jobs, live on their own, become inspirational leaders, and make lifelong friendships.

Online registration for the 2014-2015 school year is now open. If you are interested, you may register your son or daughter to participate by clicking this here (select Emory University as the chapter).

If you are interested in volunteering, click here.

I will be reporting back on J’s progress once the program is in full swing! Perhaps I will see you there.

Spirit of Autism Web TV Episode 1 – Summer Safety

Posted on July 20, 2014 by SpiritOfAutism

As parents and caregivers of someone with Autism, you know as well as I do that safety is a concern year-round. However, it is heightened during the summer. This premier episode of Spirit of Autism Web TV focuses on two vital aspects of summer safety: wandering and emergency preparedness. Join me as I interview Erin and Bruce Wilson of QR Code ID and my friend, Austin Harris, about how to prepare your 72-hour kit to be prepared for what this crazy severe weather may bring to your neighborhood!

Thanks for tuning in! Look for the next episode on Wednesday, August 13 at 9:45 pm on AmericanHeartsRadio.com. We’ll be talking about transitioning back to school among other great topics!

Spirit of Autism, LLC

Autism Training for Emergency Responders • Emergency Preparedness

Tag Archives: Autism safety