Category Archives: Tips & Tools

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Emergency Responders: Why Address Sensory Issues First?

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Sensory Processing issues play a bigger role in the daily lives of those with Autism and Asperger’s than most people realize. No matter what behavior I’m addressing with my son or what I encounter on a call, I always start with reducing sensory triggers.

Years, ago, when I finally had a firm understanding of this why this works, I perpetually tried to explain it to the other adults, teachers, caretakers, and yes, even physicians in my son’s life, who insisted that my child needed to be medicated for hyperactive and impulsive behavior.

I remember waiting months to see a highly acclaimed pediatric neurologist before my son was officially diagnosed with Autism. He was four at the time. At our long-awaited appointment, we were in the waiting room for an hour and then the doctor’s office waiting for yet another hour. What four-year-old would NOT be climbing up the walls at that point?

The doctor came in and promptly spent 10 minutes with us.

“Write your name, son.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

“Ma’am, your son has ADHD, fine motor dyspraxia, ODD (Oppositional Defiant Disorder), and maybe some sensory stuff going on. Here’s your prescription for Adderall. See you in six months.”

Whoa… wha? Oppositional DEFIANT Disorder? He was FOUR! When my daughter was four I practically wanted to SELL her. (Kidding. Mostly.) Of COURSE he was hyper – we just waited TWO hours in a closed room to see this man. And what’s with the meds? No explanation of any of these “disorders”? No constructive suggestions? No support or help?

Nope.

I researched all of the labels that supposedly defined my baby boy. Yes, he was hyperactive, but the first one that really grabbed my attention was Sensory Processing Disorder. I went through checklist upon checklist and instantly started understanding my son and the world he lives in. Many of his “quirks” were a direct stress-response to how he interprets all the sensory input from his day-to-day environment.

I soon had an entire sensory evaluation done (I say “soon,” it was actually another nine-month waiting list), and then I learned so much more about how my son experiences the world around him, and how physically painful it could be.

Once I started to differentiate between “My body hurts, I’m exploding inside and need help” and “I’m being a boy and testing my boundaries” my whole world changed, and so did my son’s.

What Does This Have To Do With Responding To Calls?

I’m a big fan of Asperger Experts – two adults with Asperger’s Syndrome that have navigated their way through the roughest times of childhood and adolescence and are now helping parents and educators do the same.

They published a video called, “The Sensory Funnel.” Although they are primarily speaking to parents and therapists (or those themselves that have Asperger’s), the scientific explanation about what’s going on is invaluable. You get to hear an adult’s first-hand experience of what the world feels like and how he not only learned to cope with all his struggles but to thrive in spite of them.

For us as responders, I chose this video for you to see as an “abbreviated” plan on scene – an explanation of why it’s imperative to deal with the sensory triggers first. The video also illustrates why trying to go from the top of the funnel down will most likely not get results, especially when trying to gain compliance or diffuse a situation.

Let me know what you think!

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Autism Tips for Emergency Responders: Service Dogs on Scene

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image courtesy of paals.org

If you have recently attended one of my Autism Training classes for emergency responders, you’ll recall a short video of a woman’s service dog that alerts to self-harm while she is having a meltdown. You can view that video here.

While I included that in my training to illustrate an adult with Asperger’s having a meltdown, someone in class brought up an excellent point: how do you, as a responder, recognize a service dog and what do you do with them on scene?

Project Chance explains that autism assistance dogs are somewhat unique. Unlike a guide dog that helps with physical tasks, autism assistance dogs mainly provide emotional support. They can also help with sensory processing issues by giving their handler a focal point, or a way to ground their sensory input when the environment is overwhelming.

Many autistic children especially have no concept of personal safety and are prone to wandering. A child may be tethered to the dog’s harness or the dog may be trained to alert to potential bolt risks.

Dogs can also be tasked-trained to use touch intervention, as well as pressure intervention and mobility assistance when repetitive or self-injurious behaviors occur.

How is a Service Dog Defined?

According to the Americans with Disabilities Act (ADA), service animals are defined as dogs that are individually trained to do work or perform tasks for people with disabilities. Service animals are working animals, not pets. The work or task a dog has been trained to provide must be directly related to the person’s disability.

Service animals must be allowed to accompany people with disabilities in all areas of a facility where the public is normally allowed to go.

The Ohio Department of Public Safety has a great downloadable trifold with tips for encountering service dogs. Here are some highlights from the brochure.

First and foremost, find out your agency’s policies on service animals! This includes how they define a service animal, information about applicable laws and how to comply with them, what to do if the handler is not in a condition to control the animal, proper movement and transport of the service animal, and veterinary facilities with whom there are established agreements for providing emergent care/boarding for service animals.

Next, you must determine if it is a family pet or a true service animal. The law permits you to ask these two questions only:

  1. Do you need the animal because of a disability?

  2. What tasks related to your disability has the animal been trained to do?

By Federal law, service animals are permitted to go wherever the public is allowed, including your ambulance. If it is not possible to keep a handler and their animal together (e.g., the handlers’ medical condition warrants transport by air or prevents the handler from controlling the animal) make sure a responsible party or someone with the handler’s permission can transport the animal safely and reunite them with their handler as soon as possible.

If the dog is being transported with the patient, load the dog last and unload it first, as this minimizes risk of injuring the animal and gives you needed space for maneuvering equipment.

If you must handle the dog, use the leash, not its harness. Use the side door of the ambulance for loading and unloading the animal; avoid open diamond plate gratings as they may injure the dog’s paws. If you need to lift the dog, put one arm behind the back legs, the other in front of the chest and gently lift. Offer to get food and any other supplies the dog may need before transporting.

Overall, try to accommodate the dog as you would a child alone with the patient. Take the dog with you and if the handler is unable to care for the dog at the hospital, attempt to notify a caretaker known to the handler for the dog, if possible.

You can download the entire helpful brochure here.

Have you encountered service dogs on scene? How did it go? Share your comments below!

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Trix Are for Kids, Autism is Not (Only)

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When I first began my Autism Training for Emergency Responders journey, my presentation focused heavily on children with autism, as that was my personal experience. This, of course, is well needed, but with 50,000 autistic teens transitioning into adults each year (with very few resources to aid that transition), my teaching has expanded immensely. Especially knowing that people with autism are seven times more likely to interact with emergency responders.

I have two teenagers – 13 and 17 – on the autism spectrum. My daily contemplations and challenges have gone from, “Please stop climbing on that thing, we’re going to get thrown out!” to, “Am I providing enough support to teach you the life skills you need as a young adult?”

Additionally, my 13 year-old is seven inches taller than me, has a mustache, and wears men’s large clothing (when he wears clothing at all). Despite his level of comprehension and response in an emergency situation, his size alone would warrant him being treated like an adult on scene, which has the potential to go downhill very quickly.

In 2000, 1 in 166 children were diagnosed with a form of autism. That figure has been climbing ever since, as we are now looking at 1 in 68 (1 in 42 boys). Here in metro Atlanta, that’s one child on every school bus. 1 in 42 boys will grow up to be 1 in 42 men.

You do not “grow out of” autism. Sure, with the right support and tools you can learn coping skills and methods to help improve your day-to-day living. But autism doesn’t magically go away when you turn 21!

The Centers for Disease Control says that the number of adults living with autism is expected to climb by about 700 percent by 2030. From 1990, when adult stats were first taken, the number of adults being diagnosed with autism has nearly tripled.

This does not even include the number of parents who, after receiving an autism diagnosis for their child, came to the realization that they, too, have autism but were never diagnosed.

Recognizing Adults with Autism On Scene

Emergencies are stressful for everyone! An adult with autism may react in ways that appear odd or threatening to a responder. It can be more challenging to identify on scene, and responders can be caught off guard if someone goes from “having it all together” to a complete autism meltdown in a short amount of time.

Remember, we always treat the patient or victim, not the diagnosis. However, here are a few common traits or behaviors that might help you recognize that your patient or victim has autism.

Body language/facial expression challenges. Neurotypical people often easily express themselves, including verbal and non-verbal methods. Adults with autism have significant challenges when it comes to interpretation and displaying types of non-verbal communication. They have trouble maintaining eye contact, interpreting facial expressions, and using motions and gestures. Remember to use direct words that have only one meaning when communicating so there is less chance for misinterpretation.

Sensory Processing challenges. Individuals with autism have either extreme or inefficient sensitivity when it comes to stimuli. While some autistic adults have learned to cope with sensory issues in their daily routines, an emergency situation will involve a ton of new smells, sounds, input, and sights, and they may be unable to process these sensory details adequately. Remember to reduce sensory triggers if at all possible (e.g., turn off lights and sirens, remove unnecessary personnel).

Empathy challenges. Adults with autism struggle with showing shared sensitivity of feelings with others and have difficulty processing others’ perspectives. On scene, this could present as if someone is “cold” or doesn’t care about the outcome of a family member, or sometimes even themselves.

It is typically taught that people with autism are incapable of employing “theory of mind,” or, in other words, unable to imagine anyone else’s thoughts and feelings. Empathy is more complicated than that. There is cognitive empathy, the ability to read other people’s feelings, but there is also affective empathy, the ability to share other people’s feelings. Just because someone with autism may not have the social/cognitive skill to read someone else’s feelings doesn’t mean they can’t feel someone else’s pain. Do not assume that a person’s inability to interpret nonverbal cues means that they don’t care and lack empathy.

Verbal challenges. Up to 40% of adults with autism never learn to speak. If they are verbal, they may have trouble maintaining a conversation, expressing their needs, or processing thoughts appropriately. Remember to look for or provide alternative communication methods if possible (pen and paper, sign language, smart devices).

Uncommon preoccupations. Many people with autism are extremely knowledgeable about certain topics, such as aviation, engineering, word origins, video games, or old movies. They may demonstrate hyper-focus on a particular area of interest, while showing complete disinterest or inability to follow along with other topics. If you are having trouble completing your patient survey or interview, try to engage the person in the topic they are preoccupied with to start the conversation rolling. Once you have gained rapport, you can gradually “fold in” the questions you need answered.

Routine challenges. Routines and rituals are very important to people with autism. They help to maintain order and predictability in their daily lives. This can be a challenge on scene, as most emergencies are not part of a schedule! You may need to swiftly remove someone from a dangerous situation or separate them from their caregiver depending on the emergency. If the scene is safe, allow them to maintain as much of their routine as possible. When you cannot, take a minute first to explain to the person what is about to happen before you act.

Autism and Temperature Regulation

Autism Tips for Emergency Responders: Temperature Regulation

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

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

Atlanta One Inch of Snow

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

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

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

The Science Behind Temperature Regulation Issues

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

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

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

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

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Weekly Autism Tips for Emergency Responders: Co-existing Conditions

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Children with an autism diagnosis often have more concurrent medical and psychological or mental health conditions than their non-autistic counterparts. Because of this, they are also more likely to use EMS and healthcare services.

Learning to recognize the signs and behaviors of autism in a patient can be challenging enough; adding medical complications to the mix can further complicate the call. Approximately one third of patients with an Autism Spectrum Disorder (ASD) have seizures.

According to a guest post on AutismSpeaks.org by epidemiologist Laura Schieve, Ph.D., at the Centers for Disease Control and Prevention, her study concluded that children with autism, ADHD or other developmental delays were:

  • 8 times more likely than children without developmental disabilities to have ever had an asthma diagnosis,

    6 times more likely to have had eczema or a skin allergy during the past year,

    8 times more likely to have had a food allergy during the past year,

    2 times more likely to have had frequent severe headaches or migraines during the past year, and

    5 times more likely to have had frequent diarrhea or colitis during the past year.

    Children with autism were twice as likely as children with ADHD or other delays to have had frequent diarrhea or colitis during the past year and were seven times more likely to have experienced these gastrointestinal problems than were children without any developmental disability.

Other co-existing conditions commonly found with autism are tic disorders, like Tourette Syndrome, Attention-deficit-hyperactivity-disorder (ADHD), Obsessive/compulsive disorder (OCD), sleep disorders and mood disorders.

Obesity is another common issue, mostly due to poor trunk development, picky eating habits and decreased physical activity.

Medications, Pain Management and Field Impression

When in the field, be aware that standard dosages of medication for pain control may be ineffective for patients with autism. Be careful when relying on “outcome-based” pain management, as higher dosing may result in unintentional overdose.

Your patient with autism may also exhibit uncommon side effects or adverse reactions to routine drugs, and they may be on uncommon medications that may have interaction with drugs given in the pre-hospital setting.

Remember that it is not your job to diagnose an autism spectrum disorder or try to differentiate it from other conditions. The goal of learning to identify autism is solely to form a working impression that will help you use more appropriate assessment and treatment strategies. As always, you should treat the patient, not the diagnosis.

You should also always consider that there is a medical reason for the behavior, as stroke, brain injury, seizures and hypoglycemia may present with similar signs and behaviors. DO NOT IGNORE LIFE-THREATS just because your patient has autism or you suspect they do.

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

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image courtesy of exciteddelirium.org

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

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

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

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

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

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

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

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

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

Sensory Processing Meltdown

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

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

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

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

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

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

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

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

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

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

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Event First Aid: The Distraction Technique and Autism

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32270_10150161038395184_1381207_nAs an auxiliary first responder who works first aid booths at community events like airshows, parades, road races, festivals and the like and an adult with Asperger’s, I have discovered some good techniques to aid me in my duties when I am providing first aid for a person and/or child with or without special needs such as Autism.

One technique I love to use is distraction. Distracting an individual helps to interrupt the neurological process that allows a person to feel and know what is happening to them at the current time. We all know when working in public safety we work in pairs for safety, camaraderie, and and other reasons. We are going to add another reason to work in pairs, especially when responding to an Autistic individual who needs medical attention. That reason is for one responder to provide treatment while the other distracts the injured individual with things such as conversation about the patient’s favorite subject, a toy such as a stuffed animal or metal slinky, or even blowing up a nitrile glove like a balloon and drawing on it. Remember that whatever items you use needs to be age appropriate and safe for the child.

Another situation I have encountered is lost individuals. When an individual such as a child or person with Autism, who sometimes cannot communicate or care for themselves, becomes separated from a family member they are usually brought to the first aid room which doubles as the lost and found room. This is so we as first responders can watch over and care for them until their caregiver is found and are reunited. This may take time so you need to have some ways to occupy an individual that may have Autism or similar issues. Some items you may want to keep are crayons and paper, Play-dough, coloring books, and a deck of cards. These items can be used as distraction until the individual is reunited with their family or caregiver. So to recap our new tools and items that we can use with the distraction technique are:

  • Conversation about patient’s favorite topic or obsession
  • Stuffed animal
  • Slinky
  • Crayons with paper
  • Coloring book
  • Play-dough
  • Deck of cards

I hope these tools and ideas will help you in your future response to an individual in need at an event or large gathering.

Austin is a certified and experienced Skywarn Storm Spotter, Ham radio operator, 11232116_10155647656030184_4068160658730913034_nCommunity Emergency Response Team Instructor.  He is currently pursuing a degree in Criminal Justice at Gwinnett Technical College and hopes to one day pursue an EMT certification and certification as a State of Georgia Emergency Manager. He brings a wealth of knowledge to Spirit of Autism with years of research and experience in emergency preparedness and as an adult with Autism.

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Weekly Autism Tips for Emergency Responders: If I Need Help

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QR Code

My son wearing his unique QR code at the Chamblee fireworks in 2014.

My boy is a wanderer. After having a girl first, one that was nearly always attached to my side, I was not prepared for the terror of repeatedly having a child go missing in the blink of an eye.

Now he’s 13 years old, 7″ taller than me and weighs 210 pounds. He doesn’t wander often. In fact, I can’t seem to get him to wander… away from his computer, that is ;) However, we are still prepared; despite the repetition of safety-based social stories and the fact that he prefers to stay in his room… there is always a chance he will impulsively go seek something outside and get caught up in it until he’s no longer sure where he is. There are also large events that we sometimes venture out to, when the odds are stacked in our favor and we have all our tools to make it a successful outing, that breed great opportunities for him to be lost in the crowd.

My son is verbal, but when something happens to him that deviates at all from his normal routine, he shuts down. He knows his name, address, and phone number, but when he’s in distress all he can process is what’s happening to him at that moment. He doesn’t think through asking critical questions or seeking help, he either shuts down exactly where he is or he goes. Like Forrest Gump goes – no idea where he’s going or what or who he’s trying to reach, he just goes.

So how would you respond to a 210-pound, stocky man child (that sometimes wears diapers because of crippling digestive and bowel issues) that cannot tell you his name, where he lives or what’s wrong?

In our case, you could scan him! (What?)

As a parent, I have researched myriad IDs and tracking devices for my child. I’m glad to see so many options available now – so many other parents stepping up to the plate and inventing products to keep their children safe. My son has extreme sensory issues (and I mentioned he’s a 13-year old boy)… he rarely keeps CLOTHES on. A clunky tracking device on him would not be there long.

If I Need Help has saved our bacon on more than one occasion! First of all, the creators are super cool, funny and awesome parents who, like many others, had a dire need to keep their own child safe. Secondly, the QR code patches and clothing were easily tolerated by my son! He actually loves the idea of having his own unique “code” and wears it with pride.

Butch in the Tub

“I’m safe in here, right, Mom?”

We didn’t make it to fireworks this year. The ones that went off in our neighborhood ALL DAY really put him into a bad sensory state. Together, with our terrified, Thundershirt-clad husky seeking shelter in the tub, we focused on calming routines instead of venturing out to the city’s festivities. ‘Twas quite a night. Last year, however, we went to the City of Chamblee fireworks and had a great time! Donning his QR code on a Minecraft shirt, our first stop at the festival was the police tent, where I introduced my son, explained he was Autistic, and told officers if they spotted him anywhere without me, they should scan his code with their smartphone. The QR code gives instant access to my son’s emergency information, I am able to change anything in his profile REAL TIME based on the scenario, and the entire thing can be emailed to searchers if he went missing. It is his unique ID, a way for him to communicate when he isn’t able.

One time, he was playing with the hose in our front yard and his sister apparently told him to get lost. Being literal like he is, he did just that. In the blink of an eye he was gone – no shirt, no shoes and soaking wet. It took a neighborhood search party, DeKalb PD and a lot of faith that day, but I got my son back safely.

He wasn’t wearing a shirt, so how could the QR code have helped? If I Need Help has some NEW products – they now have custom Dog Tags and ID cards that have the name, number and additional info printed on them along with the QR code.  People who are more independent like these, but they are also good for people who do not keep their shirts on. 

QuickStartGuideWithBlurb

If I Need Help Quick-start Guide

With the free sign up you can create a profile, edit it live in real time, send the profile to other caregivers, and print out your own code. Many people are printing their codes, laminating them and taping or glueing them to their phones, devices or anything else they keep with them regularly.

If you’ve taken my Autism training course, you already know some signs and behaviors that will help you identify that someone may need help. Keep your eyes open for anyone wearing or holding a QR code on their person and don’t be afraid to SCAN IT! You may just be saving a life.
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Weekly Autism Tips for Emergency Responders: Drawn to Water

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2015-06-24 12.50.17In my Autism Training courses I teach parents and emergency responders to search water first if a person with Autism goes missing. This includes rivers, pools, lakes, ponds, and even fountains. 91% of deaths of children with Autism are due to drowning.

These are scary statistics. I have a wanderer. When he was three we went to visit family in Florida and he figured out how to unlock all the doors and gates that led to the pool in the back yard. In a flash he was gone and in the water.

My son used to spend hours in the tub and could often be found playing with the hose in the front yard. Toddler time at the neighborhood pool always consisted of him trying to break free of my arms and just GO. It didn’t matter where he was going, he just had to go. Slippery babies are hard to contain as it is!

So, yes, I know that children with Autism are often drawn to pools and other bodies of water. But why? Experts said they find them beautiful and are fascinated by the way light sparkles on the water.

The Autism Society of the Heartland’s Executive Director offers that, “Water is a fixation for them because when they get in the water, it’s like a big hug and it wraps around them. And it can relax them and help with some of those sensory issues that they might have.”

That is consistent with the feedback I hear from many families and children I have worked with, including my own child. It is a soothing escape from the whirlwind of sensory input that often overwhelms them. Unfortunately, an Autistic child’s fascination with water is typically coupled with no sense of fear or perception of danger and can end tragically in the blink of an eye.

As parents, we do our best to protect our children – being prepared for emergencies, knowing the lay of the land and all bodies of water surrounding home and school, installing additional locks and alarms at home on doors and windows, and of course, seeking swimming lessons.

As responders, you don’t know how involved and tenacious parents and caregivers are. You don’t know what precautions are in place and if they’ve been bested by a clever and curious child. All you know is there is a child (or adult) missing.

The National Autism Association states the following information for first responders:

  • Nearly half of children with autism engage in wandering behavior
  • Increased risks are associated with autism severity
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Accidental drowning accounts for approximately 91% of lethal outcomes
  • Other dangers include dehydration; heat stroke; hypothermia; traffic injuries; falls; physical restraint; encounters with strangers

Because many individuals with ASD go directly to water, it’s important to treat each case as CRITICAL. Remember that every person with Autism is different, so utilize input from the child or adult’s immediate caregiver and keep search efforts ongoing. Some children with autism have survived as many as six days without adequate food or water.

2014-12-28 11.57.09

Weekly Tips for Emergency Responders: Girls Have Autism, Too

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2014-12-28 11.57.09For 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.