autism personal space

Autism: Don’t Stand So Close to Me

autism personal spacePicture this: you respond to a call for a 26 y/o male “not acting right” (that’s about the extent of information WE get from dispatch, anyway ;) ). You arrive on scene and are immediately approached by a 5’9” 230-lb male who won’t make eye contact or respond to his name. He proceeds to get too close, won’t slow down or stop on your command, and maybe even reaches out and tries to touch your arm.

As an EMS provider or law enforcement officer, this situation would immediately be perceived as an aggressive threat and could go south very fast.

Regarding body proximity, responders are often faced with the reactionary gap – the human factors formula that compares action vs. reaction – when assessing situations like this on scene. The closer an assailant is to you, the less time you have to defensively react to any aggressive behaviors or actions.

When an emergency responder experiences a threat, it takes on average .58 seconds to assess and determine if the threat is real, then an additional .56 to 1.0 seconds to make a response decision. We as providers have to fall upon one of five possible responses to threat: defend, disengage, posture, hyper-vigilance or submission. I’m sure you can figure out which one most public safety professionals embrace.

So what if the person was autistic? What if they didn’t understand where their body ends and space begins? What if body proximity, spatial awareness and proprioceptive dysfunction came into play and they had no malicious intent and no idea their actions were perceived as threatening?

Does that mean you should leave yourself unprotected or allow these behaviors on scene? Of course not. But let me explain.

There are four main categories of proxemics:

  • Intimate Distance (touching to 2 ft)
  • Personal Distance (2-4 ft)
  • Social Distance (4-12 ft)
  • Public Distance (>12 ft)

Although seemingly effortless to most people, judging the right distance to stand from someone is a complex and dynamic skill. It can depend on many factors, such as your relationship to the other person, your age, gender, emotions, and culture. Your body proximity is a form of nonverbal communication that, in turn, says a lot to another person.  Standing too close to someone can absolutely communicate aggression.

Why This Is an Issue

The Autism Genetic Resource Exchange (AGRE) compared the scores of 766 children with autism against 766 of their unaffected brothers and sisters on a questionnaire of autistic social behaviors. An overwhelming 79 percent of autistic children “were less aware of being too close and more prone to personal space invasions” than their neurotypical siblings.  Though it seemed to improve with age, it continued to affect teenagers and young adults. Those with spatial issues were more likely to:

  • Stand too close to others
  • Touch others in an unusual or inappropriate way
  • Walk in between two people who are talking
  • Be unaware they are talking too loudly or making too much noise

This behavior is often done on automatic pilot and not self-monitored.

Proprioception and Spatial Awareness

Proprioception refers to the sensory input and feedback that tells us about movement and body position. “Receptors” are located within our muscles, joints, ligaments, tendons, and connective tissues.

If this proprioceptive sense is not receiving or interpreting input correctly it is referred to as PROPRIOCEPTIVE DYSFUNCTION.

Spatial awareness is part of our overall perception. Since perception is the organization and interpretation of sensory stimuli from our environment, autistic people would need to have adequate body awareness to be able to form the relationship of their body with the stimuli and objects within that space.

My son has tremendous struggles when it comes to this. Not only does he have to constantly touch the wall when walking in public, he perpetually “hovers,” stands too close to people, touches them without invitation, and even crashes into them. This is due to his nervous system craving proprioceptive input and his inability to fully perceive where he is in relationship to his surroundings. At home, we use a hula-hoop to continually demonstrate personal space. While he has made significant progress, it is something we must address daily.

What scares me is that my son is a BIG child. His simple lack of spatial awareness might cause him to be severely injured or incapacitated if his behaviors are misinterpreted, especially during a heated situation or crisis.

What Can You Do On Scene?

If you identify someone as autistic on scene, whether by the family’s information or from the tools you learned in my autism training, try to keep this information in the back of your mind during your scene size up. Know there is a possibility of someone being a ‘space invader’ and that it might not be an aggressive or threatening action.

I am not telling you to put your guard down and allow someone into your personal space AT ALL. But awareness goes a long way. When you start putting the picture together that someone might have spatial awareness issues or proprioception dysfunction, try putting your arm out and stating, “Stay at arm’s length.” Use clear, concise phrases that have only one meaning, such as “Stop there” while holding your arm out.

The combination of the visual cue and clear commands could truly go a long way in stopping a situation from being misinterpreted and rapidly escalating out of control.

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.

image courtesy of crisisprevention.com's Risks of Restraints

Weekly Autism Tips for Emergency Responders – Facts About Restraining

image courtesy of crisisprevention.com's Risks of Restraints

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!

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Help Me Illuminate the Future for Those with Autism

logo_waad-227x300As 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

SOA Web TV

Spirit of Autism Web TV Episode 1 – Summer Safety

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!

AutismWithebiTaylorJuly9th1stEpisode2014

Tune In to My New Autism Web TV Series

AutismWithebiTaylorJuly9th1stEpisode2014Has it really been over TWO months since I’ve reached out to you? Wow. My sincerest apologies. Lots has been brewing in Spirit of Autism land! I’ve had the honor of providing in-service Autism training to the Stone Mountain Police Department as well as the District 8 Georgia Police Chiefs in Villa Rica, GA. All officers that attended received P.O.S.T. (Peace Officer Standards and Training) credit for the course, so we are really making strides in the Emergency Responder training arena!

Coming up I will be doing a “Train the Trainer” Autism course for the Georgia Institute of EMS, in which they will also receive continuing education credit. We will soon be launching an online version of the training course with a test and certificate of completion available for Law Enforcement and EMS.

Now for the really fun announcement… I’ve got a new web TV series! I’ve joined forces with American Hearts Radio, a family-friendly company on a great mission, offering live worldwide radio broadcasts, live events and WEB TV productions to people with a real message to share.

My new 30-minute series will air on the second Wednesday of each month at 9:45 pm EST. Don’t worry if you can’t stay awake that late! As an Autism parent I know we need to grab sleep whenever we can get it ;) The show will be available to watch on the American Hearts Radio website, on YouTube and right here on my Blog.

Premiering July 9, the first show will focus on Autism and Summer Safety. I’ll have in the studio with me guest Austin Harris, my sidekick in the Fire Rescue Reserve and Emergency Responder training. We’ll be talking about Disaster Preparedness and how you need to be even MORE prepared when you have a child or family member with Autism. I’m also honored to be airing an interview with Erin Wilson from QR Code ID. We’ll be discussing all the great products they created for loved ones who wander. You won’t want to miss this! Summer can be a chaotic and harrowing time for Autism families… we’ll let you know how to make sure it’s a safe time!

Looking for Sponsors

American Hearts Radio produces commercials for your business that will be placed on live Radio show daily spins and re-runs, as well as a video version that will appear on all social networks, other shows and the AHR website.

As a local sponsor you will also be invited on local WEB TV Shows in Atlanta to promote your business.

If you’re looking for a way to drive potential buyers to your website American Hearts Radio.com does exactly that. Contact me for more info if you’re interested… it’s extremely affordable!

 

autism summer safety tips

Summer Safety Tips for Parents of Children with Autism

Summertime,

And the livin’ is easy…

Well, that doesn’t always ring true for parents of Autistic children! Safety concerns become heightened when the weather turns nice and schedules are more lax.

Having an Autistic son has brought things I’d never before imagined having to be prepared for into my experience. Here are some safety tips I’ve pulled from my own experiences and some great ideas from May Institute that can help you be prepared so you can relax and enjoy the summer with your child.

Water safety

Drowning is the number one cause of death in autistic children. Many children with Autism are powerfully drawn to the water but do not understand the dangers.

Always be within arm’s reach of the child when he or she is in or around any open water. Be sure to drain bathtubs and other small containers of water when you are finished using them – a child can drown in an inch of water. Put safety locks on toilet seats and hot tubs and monitor or cover landscape ponds if you can.

Teach your child to swim as early as possible. If they struggle with traditional swimming strokes, they can learn a water survival technique called drownproofing, which will help them stay afloat until help arrives.

Wandering prevention

Children with ASD are likely to act impulsively, including running away or wandering.

Use deadbolt locks, keep doors and windows locked and install an alarm on doors. Motion detectors and window bars may also be appropriate.

For children who respond well to visual cues, consider placing STOP or DO NOT ENTER signs on all doors that open to the outside. These can be powerful reminders.

You can find seven more vital tips for wandering prevention, including the use of QR Code apparel in this article.

Getting your information to emergency responders

If it is available in your area, register your family on Smart911. Whether an Autistic child has wandered, is having a medical emergency, or a behavioral emergency, it is vital to communicate that they have Autism and understand the response may require very specific actions.

Participate in local community safety fairs where there are opportunities to meet actual police, firefighters, and emergency response professionals that work in your community in an environment that is friendly and fun. This may increase the chances that your child will respond positively to first responders in the future.

If available, submit a disability indicator form to your local law enforcement agency to help alert law enforcement that a person residing at that address may require special assistance during an emergency. You can also create a more detailed handout with information about your child and have printed and electronic formats available so you can readily provide it to search and rescue personnel in the event of an incident.

It’s also a good idea to give your neighbors a handout with a picture of your child and emergency contact information. It should describe effective ways to approach, communicate with, and calm your child. Ask them to contact you immediately if they see your child outside your home or property.

How about you? What summer safety tips work in your home? Share by commenting below or posting to the SOA Facebook page!

business woman holding up hands, "back up"

Special Needs Mothers Need Not Apply

My neighborhood has a special Women’s Club that meets regularly and hosts family-oriented social events. I’m going to be direct and get right to the point: I have been asked by several women not to attend any of these meetings because I have an Autistic child.

Bear in mind, I have never brought my son to a meeting, he has never been to a social event, he has never caused a neighborhood “ruckus.” He has Autism. It’s not contagious, scary or dangerous. There’s nothing unusual to stare at when you meet him. Why, then, am I blatantly cast out?

I have been a single mom for nine years. My children and I have lived on this block, renting my home, since our return from Knoxville two years ago. I have never brought a date home (what’s dating, ha ha!), had a loud party, had any questionable visitors, or been in trouble with the law. In fact, having disaster response training under my belt and being a volunteer with the Fire Department, I would be an amazing resource for the community if someone would dare get to know me.

I walk my two giant Malamutes at least twice a day and always wave and exchange small talk with everyone I meet. Everyone waves and smiles back, yet we’re still not allowed into “the club” (first rule of Fight Club is…). Worse yet, I continually get asked why I’m not seen at the club meetings, and am also labeled the “crazy homeschooling neighbor that doesn’t participate.”

This just compounds our history of being kicked out of restaurants, book stores, flights (!), and why no one in my family will visit us. I’ve also been told he’s not Autistic, it’s my parenting that’s the problem. That’s a good one!

With all the awareness work and training I do, why are we still experiencing this kind of response from people?

What should I do?

Well, I have some options about my neighborhood. I don’t have the energy to tackle public places at the moment (I will move one mountain at a time!), but here are my choices:

  • I can whine about how unfair it is and feel like a victim
  • I can say, “Oh well,” and let it roll off my back, like water off a duck
  • I can organize a neighborhood gathering of my own, or request to be a special “guest speaker” at the next one

If I can train law enforcement, EMTs, and firefighters about Autism, why can’t I put something unique together to present to my neighbors? It would be so beneficial for everyone to learn a little more about Autism and my son in particular. This way, when we have a wandering situation (which recently happened!), I can feel like my neighbors have my back rather than feeling like they are sitting in judgement. Sure, they may continue to judge me after they learn more, but that’s none of my business.

Now I’d like to hear from you

Have you ever felt persecuted by a group due to your (or your child’s) Autism? How did you respond? Would you like to learn more about giving a small presentation to your neighborhood? Share your comments below, drop me an email, or say something on the SOA Facebook page – I always love sharing thoughts and ideas with you.