image courtesy of freedigitalphotos.net

Trix Are for Kids, Autism is Not (Only)

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

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.

image courtesy of freedigitalphotos.net

Autism Tips for Emergency Responders: Autism and Violence

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

My extended family doesn’t know a great deal about autism. My children and I don’t live near my mother or stepmother, and autism wasn’t even on my radar when my father passed away in 2001. The majority of information they receive about autism is what they hear in the news and any personal stories I choose to share about day to day living as a single mom with two autistic teens.

A family member recently asked me, “How bad is Justin?”

“What do you mean?” I replied.

“I saw on the news that a boy with autism got angry and bit his grandmother’s finger off. Is he violent like that? I’m worried.”

Officers frequently ask during my autism trainings if people with autism are more likely to abuse alcohol and drugs and commit violent crimes.

These are all great questions; however thanks to the media an already grossly misunderstood community is now feared and shunned as one being predisposed for violence, and even murder. Case in point, the Sandy Hook School shooting in 2012, the 20-year old shooter was diagnosed with Asperger’s Syndrome at age 13.

Did autism cause him to fatally shoot 20 children and 6 adult staff members?

No, it did not.

According to an article from Interactive Autism Network at Kennedy Krieger Institute,

“People with autism spectrum disorder (ASD) may have characteristics that could make them both more likely, and less likely, to break the law. On the one hand, they may have trouble with aggression, controlling strong emotions, and understanding other people’s perspectives. They may have challenging behaviors that could attract police attention. However, they also tend to find rules helpful, and laws are “simply social rules of a particular type” that they could be expected to follow.”

There are few case studies dealing with high-functioning autism and crime, and those in place are already biased, as the subjects studied were already in prison or a forensic hospital – they already had legal troubles. This indeed elicits a “chicken or the egg” argument, and cannot truly answer whether or not autism is a factor in violence and crimes. Studies would need to consider people throughout a community, not just those in jails, psychiatric hospitals or institutions.

It is my personal experience that most people with autism are good-natured, happy individuals that are focused on the “now” and typically like to follow rules, but are also wired to be who they are, unapologetically. There is no known evidence that autism causes violent criminal behavior.

Victims, Not Aggressors

 

The more likely scenario you will encounter? People with autism tend to be victims of crimes. Children with disabilities are about three times more likely to be the victims of abuse or neglect, and children with autism are bullied more often than other children.

Social and communication deficits may also place people with autism at a disadvantage when questioned by police. They may not be able to tell if an investigator is lying or manipulating them, resulting in potentially making a false confession. Officers that are not trained to recognize autism may also interpret lack of eye contact, vague answers are changing the subject as evidence of guilt, but these are typical autistic behaviors.

Impulses and Behavior Response

 

Autism Speaks also tells us that autism itself does not cause challenging behaviors. It is likely, however, that some of the underlying biological processes that result in autism might also result in behaviors that are outside of a person’s control—similar to how the tremors associated with Parkinson’s Disease are brought on by impulses that the person cannot direct. In addition, some behavioral responses are simply reflexes—no more of a choice than when your leg jerks upward when the doctor uses his hammer on your kneecap.

Autism aggression is less likely to result in violent behavior toward others; most often the automatic response to stressors (like emergencies) are repetitive or ritualistic – and sometimes self-injurious – behaviors that serve the purpose of self-calming.

SOA You Get What You Get

Autism Tips for Emergency Responders: You Get What You Get!

A guest post by Wanda Refaely, ICE4Autism.

SOA You Get What You GetIt’s like my son used to say about the color of the popsicle he got at snack time in preschool: You get what you get! Emergency calls sometimes come in with lots of information, but most of the time they don’t. As a first responder, it’s your job to attend to whatever is thrown at you, with however much, or little, information you’re provided. This is, undoubtedly, one of the greatest challenges in the field.

Picture this: You arrive on the scene of a motor vehicle accident and the driver is unconscious. In the passenger seat is a young adult male rocking back and forth and repeating “cheeseburger, cheeseburger, cheeseburger”. You gently lean your head in and ask, “Are you OK?” The young man continues uninterrupted on his rant. “What’s your name?” you try again. “Cheeseburger” is all you get in response. You reach in and put your hand on the young man’s shoulder to calm him and he responds with a blood curdling scream.

Is the young man hurt? Has he suffered a concussion or brain injury? Can he even hear you? Maybe he doesn’t understand English? Could he be intoxicated, on drugs or is he mentally ill? Or… Maybe he has autism?

The techniques you implement and how you proceed will differ based on the response to each of these questions. In fact, how you assess the young man’s needs and condition may require an adaptation of your usual or customary protocols. But how do you know?

The best way to distinguish autism, as opposed to other possibilities, is through your powers of observation. The ability to recognizing the “signs” associated with autism is essential to responding appropriately. Though different in every person, autism is often characterized by communication differences, social challenges and unique – and often misinterpreted — behaviors.

A person with autism may exhibit repetitious behaviors – such as rocking, arm flapping or bouncing up and down; “echolalia”, the repetition of phrases or words and/or parroting back what someone has said to them; varied communication abilities which may require the use of a communication device; hyper or hypo-sensory responses including sensitivity to light, sound and touch; and an extreme pain threshold which may be unusually high or extraordinarily low. It is important to note, that autism is a spectrum disorder which means that it may be extraordinarily difficult to discern at all in some people while extremely severe in others.

All of this will all present added challenges for you, the first responder.

Getting back to our scenario, looking for the young man’s (and the driver’s) mobile devices and checking for an ICE (in case of emergency) app may be the single most productive action you take in attempting to figure out the young man’s needs. As the public’s reliance on mobile devices for everything from banking to restaurant reviews has blossomed, so has their use for safety purposes. The implementation of Bob Brotchie’s ICE concept – entering In Case of Emergency information in your cellphone — which went viral nearly a decade ago, has been broadly embraced around the world and is now highly prevalent. And, more specifically, the ICE4Autism mobile app, developed specially to address the unique needs of individuals on the autism spectrum is now used by those with autism, their families and caregivers. ICE4Autism can answer many of the pertinent questions that the driver may have been able to answer for you were she conscious: Who is the young man? Does he, in fact, have autism? How old is he? What is his blood type? Does he have any additional medical conditions? Allergies? How do you contact his emergency contacts? Are there any special instructions related to his care that would be helpful?

Proceeding with the young man’s care based on the valuable information gleaned from the ICE4Autism app is, obviously, preferred to proceeding “blindly”; but, you don’t get to choose – you get what you get.

You may need to move forward based on your observational assumption that the young man in our scenario IS on the autism spectrum. If so, turning OFF lights and sirens, for example, can dramatically reduce stress levels. Looking for and giving the young man what might be a “preferred item” may reduce his anxiety and thereby also improve his ability to respond and cooperate. Speaking in short, direct language and allowing extra time for him to respond will likely yield better results. And limiting physical contact to only the most essential preceded by an explanation of what you are about to do and what to expect are all good ideas.

Responding to a call involving a person with autism isn’t going to be a rare and unusual occurrence. The fact is that autism is the single fastest growing developmental disability in the United States today AND people on the spectrum are seven times more likely to interact with first responders. Being ready and knowing how to respond properly and safely to the unique needs and sensitivities of people with autism is now an essential part of the first responder job description because when the call comes in, you get what you get!

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About Wanda Refaely

Wanda Refaely is passionate about and deeply committed to reducing the barriers to needs-conscious emergency and general care and treatment for individuals with an autism spectrum disorder. She is the founder of ICE4Autism, the ONLY autism-specific in case of emergency mobile app, and is an active contributor to the autism safety and emergency preparedness arena. Wanda’s involvement in the autism community began with her participation in the advocacy and lobbying efforts leading to the passage California’s autism insurance reform law (SB946). She continues to work as an independent consultant specializing in assisting autism treatment providers with their insurance contracting, credentialing and clinical audit needs. Wanda also volunteers as a board and executive committee member at Include Autism, a San Diego autism inclusion and education non-profit. She is a proud mom whose son has been, and continues to be, her inspiration, motivation and her greatest source of joy.

More information:

On the web: www.ICE4Autism.com

On the App Store: https://itunes.apple.com/app/ice4autism/id969601780?mt=8

Via email: wanda@ICE4Autism.com

On Twitter: @ICE4Autism

On Facebook: ICE4Autism Mobile App

Autism and Temperature Regulation

Autism Tips for Emergency Responders: Temperature Regulation

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.

image courtesy of freedigitalphotos.net

Weekly Autism Tips for Emergency Responders: Co-existing Conditions

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

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.

image courtesy of exciteddelirium.org

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

image courtesy of exciteddelirium.org

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.

ShakeOut

Great ShakeOut Earthquake Drill – Who Will Be Joining My Family?

ShakeOutEveryone, everywhere, should know how to protect themselves, their family and their business in an earthquake. As a CERT member and vocal disaster preparedness advocate, I’m thrilled to be participating with my family in the world’s largest earthquake drill.

Earthquakes have certainly been a huge topic both in the news and in Hollywood. The April 2015 Nepal earthquake killed more than 9,000 people and injured more than 23,000. San Andreas, a 2015 disaster film, portrays how a seemingly ideal day turns disastrous when California’s notorious San Andreas fault triggers a devastating, magnitude 9 earthquake, the largest in recorded history. While the Nepal earthquake is an unfortunate reality, thankfully the movie San Andreas was mainly fiction. To help learn more about earthquake facts the several organizations have offered many resources, including for those who have family members with Autism or other needs. (I recommend that my readers go here first for information.)

I’m in Atlanta, Georgia. You may be thinking, “Atlanta? Earthquakes? I can see being prepared for a tornado, but come on. Georgia doesn’t have earthquakes.” It’s that kind of “it won’t happen to me” thinking that gets us all in trouble when it comes to emergency preparedness. Guess what – in the past year alone, Georgia has experienced seven earthquakes. In my research I also found a great deal of Georgia earthquakes that caused significant damage dating back to 1811.

The USGS provides much information about earthquakes on their website. Click

image courtesy of earthquake.usgs.gov

image courtesy of earthquake.usgs.gov

here to learn more.

Even if earthquakes are rare where you live, they may happen where you or your family travel. While earthquake hazard varies from region to region, most of the Southeast really is prone to earthquakes. You could be anywhere when an earthquake strikes: at home, at work, at school or even on vacation.

What you do now will determine your quality of life after our next big earthquake. Are you prepared to survive and recover quickly?

What is Great ShakeOut?

shakoutGreat ShakeOut Earthquake Drills are an annual opportunity for people in homes, schools, and organizations to practice what to do during earthquakes, and to improve preparedness.

By participating, you and your family can practice how to be safer during big earthquakes: “Drop, Cover and Hold On.” The ShakeOut has also been organized to encourage you, your community, your school, or your organization to review and update emergency preparedness plans and supplies, and to secure your space in order to prevent damage and injuries. Below I have listed the Seven Steps to Earthquake Preparedness. You may wish to copy these bright images and laminate them as part of your family preparedness plan to have on hand as an aid for communication. Laminating them will help them to last longer.

Also, remember that when a disaster hits one should be ready to either shelter in place or evacuate. For children and adults with Autism that means extra care in planning is required. It is a good idea to communicate with your local First Responders about the needs of your family and share with them some tips on how to help a child or adult with Autism during these stressful situations.

Read about Apps to help with disaster response when your family has a member with Autism

Why Register for ShakeOut?

Not only will you find many safety tips, like having a disaster kit that applies to tornadoes and hurricane safety as well, but families with individuals with special considerations or are non English speaking will find a plethora of resources.

  • Be counted in the largest-ever earthquake drill in the Southeast!
  • Be listed with other participants in your area (Optional)
  • Be an example that motivates others to participate & prepare
  • Be updated with ShakeOut news and preparedness tips
  • Have peace of mind that you, your family, your co-workers and millions of others will be better prepared to survive and recover quickly from our next big earthquake!

Don’t just register, get involved! Join the ShakeOut community and participate in the weekly Tweetchat on Wednesdays from 2-3 pm EST. This Wednesday, July 22nd, I will be tweeting live during the Tweetchat! Join me, @SpiritOfAutism, and be sure to use hashtags #ShakeOut and #DropCoverHoldOn. Don’t forget to upload pictures of you and your family registering for Great ShakeOut!

join us

Seven Steps to Earthquake Safety

PREPARE:

  1. Secure your space (a list of how to do that here)
  2. Plan to be Safe (and review and practice your plan with your family members)
  3. Organize your disaster supplies – don’t forget to add any special objects that help your child to transition or feel more comfortable. Especially if you are relocated to a shelter or another’s home.
  4. Minimize financial hardship. Remember that your basic home or renter insurance most likely will not cover earthquakes.

SURVIVE and RECOVER

  1. Here is where you Drop- Cover and Hold On! Remember to practice this during the ShakeOut drill and several other times during the year.
  2. Improve Safety. After an earthquake happens be sure to check on people nearby for any injuries. Evacuate if need be.

And after the Earthquake happens Step 7 is to Recover and Restore with daily life by repairing anything broken and assuming daily routine when possible.

Images for use and download to help with communication and to create social stories:

 

water heater cell
disaster kit documents
drop cover hold on recover
rebuild
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Event First Aid: The Distraction Technique and Autism

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.

2014-07-04 20.39.14

Weekly Autism Tips for Emergency Responders: If I Need Help

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.
2015-06-24 12.50.17

Weekly Autism Tips for Emergency Responders: Drawn to Water

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.