autism temperature regulation

Autism Tips for Emergency Responders: Temperature Regulation

autism temperature regulationGetting my son to wear a coat in the winter takes an act of Congress, regardless of the frigid outside temperatures. I used to think he was lazy, or perhaps that the material of the coat bothered him (he has a multitude of sensory processing issues and I often have to make sure his shirts are tagless and socks are seamless). Yet, here we are in the midst of an Atlanta summer and for some reason he prefers turtlenecks and heavy sweatpants, despite the array of shorts and t-shirts he owns. What’s going on?

In addition to sensory overwhelm and sensitivity to sounds, lights, smells, and textures, many people on the autism spectrum also have difficulty with temperature regulation.

How does temperature regulation work?

Aspie writer Jeannie Davide-Rivera describes it perfectly as:

…an automated body system that regulates the body’s core temperature in response to outside stimuli. The temperature of the body is regulated by neural feedback mechanisms in the brain, which operate primarily through the hypothalamus. It has the remarkable capacity for regulating the body’s core temperature that keeps your body temperature somewhere between 98F and 100F. When your body is exposed to heat or cold conditions this system balances your internal temperature with the temperature outside.

Why is this an issue for emergency responders?

When you interact with an autistic person that may be hyper- or hypo-sensitive to heat or cold, it creates several issues. First off, recognizing temperature regulation issues in a patient can be tricky. Picture someone peeling off their clothing in the dead of winter, in the face of freezing weather (yes, it DOES get cold in the south!).

What about someone on the playground wearing several layers of clothing when it’s 96 degrees outside? It looks rather suspicious. What’s the first thing you would think as an emergency responder? Drugs? Mental illness?

Not necessarily.

Children AND adults with autism may not feel or experience temperatures the same way we do. They’re acting out what feels natural to them because of temperature regulation issues. Additionally, medical conditions and medications can interfere with the body’s ability to cool itself or to maintain a fluid/electrolyte balance. Couple this with impaired communication and decreased body awareness, and you may witness someone going downhill quickly with no obvious cause.

As we are dealing with these ‘Hotlanta’ wet blanket days right now, hyperthermia is a huge risk. It’s important to recognize the signs of heat exhaustion and heat stroke as rapidly as possible and start treatment right away, regardless of how a patient is dressed or how “disconnected” from our logical, neurotypical world they may seem.

Symptoms to look out for:

  • NOT SWEATING
  • Red, hot, dry skin
  • An extremely high body temperature (above 103°F)
  • Loss of consciousness
  • Rapid and unusually strong pulse
  • Shallow, noisy breathing
  • Dizziness or confusion
  • Nausea, with or without vomiting

Be aware of comorbid medical conditions when treating an autistic patient. There are many conditions that present with autism spectrum disorders such as epilepsy/seizure disorders, anxiety, bipolar disorder, bowel disease, immune disorders, OCD, Tourette syndrome, sleep disorders and more.

autism self injurious behavior

5 Possible Causes of Autism Self-Injurious Behavior

autism self injurious behavior

Both of my teens experience significant gastrointestinal issues as part of their autism. I was out running errands with my daughter (who just turned 19! How did this happen?!) and she had severe cramping from abnormal cycles and anxiety. We had no access to pain relief meds; then I looked over and saw her punching and pushing on her stomach. She said it actually felt better… and admitted this wasn’t the first time she’s hit herself for pain relief.

She said, “I wonder if this is why some people with autism hurt themselves, to actually relieve the pain.” She told me that the combination of the pressure and the feeling of doing something about her pain made her feel better.

I started to wonder exactly why self-injurious behaviors occur. On scene it presents like a behavioral issue that must be dealt with swiftly. But there is definitely more to it, and understanding it can help us help our patients more effectively.

What is self-injurious behavior?

In the mental health industry, the definition of self-injury (also termed self-mutilation or self-abuse) is defined as the deliberate, repetitive, impulsive, non-lethal harming of oneself. It often includes cutting and scratching. There is typically a deep-rooted psychological history that accompanies this type of self-injury.

With autism, it can look a little different. The most common forms of these behaviors include: head banging, hand biting, hair pulling, and excessive scratching. According to the Autism Research Institute, there are many possible reasons why a person may engage in self-injurious behavior, ranging from biochemical to their social environment.

These are the top 5 tangible reasons that will help you in the field.

Chemical “messengers”

There is a suggested relationship between the levels of neurotransmitters and self-injurious behavior, in that self-injury may increase the production and release of endorphins in the brain. As a result, a person experiences an anesthesia-like effect, allowing them to no longer feel pain while engaging in the behavior (like my daughter punching her stomach). The release of endorphins also may provide the individual with a euphoric-like feeling.

Seizures

Approximately 1/3 of people with autism have an accompanying seizure disorder. Self-injurious behavior has also been associated with seizure activity in the frontal and temporal lobes, exhibiting behaviors such as head banging, slapping the ears, hand biting, and scratching the face or arms. It is critical to realize seizure-related self-injurious behavior is involuntary and may require restraint. Seizures may typically begin when an autistic child reaches puberty.

Pain

Another reason for this behavior, once again as in my daughter’s case, is simply to reduce pain. There is growing evidence that pain associated with gastrointestinal problems and inner ear infections may be associated with self-injury. The behavior may dampen the pain, but also may “gate” it to another area of the body, serving as a distraction.

Sensory Issues

Self-injury can be a defense against an overwhelming sensory environment. Just being in a public place can be physically painful for someone with sensory processing issues, as their senses are often magnified and they struggle with the filtering of background noise. They may hear everything – times 10 – in their face at all times. And that’s just ONE of the senses – add to that sensitivity to lights, smells and more.

Excessive scratching or biting may be an extreme form of stimming, which helps “reset” the nervous system. An under-active nervous system SEEKS input, so some self-injurious behavior is an attempt to placate their body’s need for sensory stimulation.

Frustration

This behavior can also be a result of sheer frustration. An autistic person that struggles with communication skills becomes frustrated because of their lack of understanding of what was said (poor receptive communication) or because the parent or caretaker does not understand a need they have attempted to communicate. Imagine repeatedly not being able to effectively express your needs to the people responsible for meeting them.

In Summary

As I share in my autism training for emergency responders, self-injurious behavior is most typically rooted in pain. As a parent, instead of stopping the behavior, you can sometimes provide safety and cushioning. In the field, we rarely have that option. Safety is an issue and the behavior must be controlled.

Being aware of multiple reasons for a behavior (as opposed to perceived non-compliance) allows us to look for a physical or medical cause and address that first and foremost, which contributes to the safety of everyone involved.

Over to you…

Have you encountered self-injurious behavior on a call? How was it handled? Share by commenting below!

autism wandering

Emergency Responders: 7 Things You NEED to Know About Autism Wandering

autism wandering

As an autism mom, worry and fear can be my constant companions. My entire life can change in the blink of an eye, especially because my child wanders.

My son has been wandering since he could walk.

One particular time, he was playing with the hose in the front yard. Wearing no shirt or shoes, he didn’t have a care in the world. He loves water. Seconds earlier, I had checked on him through the kitchen window and he was fine. Then his sister went outside and they got into a small scuffle… she told him to “get lost.”

People with autism are very literal. That’s exactly what he did.

In less than two minutes he was GONE.

I activated 911 and had the whole neighborhood searching for him. 3-1/2 hours later he was found several blocks away under a bush. I shook him and hugged him and asked what on earth he was thinking! He only replied, “My sister said get lost.”

My son, now 14, is nine inches taller than me, has a mustache and wears men’s large sized clothing. While he wanders more “online” these days than out of the house, it is still challenging to keep him safe, especially if we go to public events and gatherings.

I have multiple stories of “close calls” like this. As an emergency responder, I’ve been tasked to find missing children at festivals and responded to autism-related EMS calls. If you’re a first responder, here are 7 things you need to know about wandering.

  1. It can happen in an instant. Just like my story, thousands of autism parents have literally “blinked” and had their child disappear on them. It is beyond terrifying. Know that children with autism are not being manipulative, calculating, or trying to get out of a test at school… something catches their eye, or they are experiencing sensory overwhelm, and they run.
  2. It’s more common than you think. The National Autism Association cites that 49% of autistic people are prone to wandering away from a safe environment, which is nearly four times higher than their neurotypical siblings. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers. 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering. 40% of parents have suffered sleep disruption due to fear of elopement.
  3. They are drawn to water. In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. In 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. For more information on WHY they are drawn to water, read this article.
  4. They may not seek help. Don’t assume wandering is a crisis or emergency to someone with autism. They may be perfectly happy in their own little world and not seek assistance just because they are “lost.” I’ve seen cases where an autistic child was hungry, walked into a strange family’s house and sat down at the dinner table! If you ARE searching for a missing person with autism, don’t discount looking in tight spaces or odd locations simply because a reasonable person wouldn’t go there. I’ve witnessed children found between mattresses behind a dumpster and inside a hay bale.
  5. They may be nonverbal. Even if a child (or adult!) is typically verbal, under the duress of an emergency they may not be able to communicate their needs. In fact, over one-third of autistic people that wander cannot communicate their name or address. Look for alternate IDs, such as bracelets, shoelace tags, phone apps, or QR codes to help you identify someone and get their medical history and caregiver contact information stat.
  6. If there’s a reason, it probably seems trivial to you. The other night, at approximately 4 am during my shift, my ambulance was parked at a convenience store. My partner and I were standing outside, enjoying the fact that we finally got to stop for a long-awaited cup of coffee, when a 15 year-old boy walked up to us. He asked if we could call his mom and apologize for him for not doing the dishes. He said, “Please tell her I’m sorry and I want to come home.” I saw him tapping his index fingers together repeatedly (“stimming“), recognized some of his other behaviors, and immediately identified him as autistic. After some careful questions, we discovered that he failed to do the dishes 12 hours ago and was so upset that he left home. He had been wandering the streets of Atlanta and riding local trains on and off since 4 pm that afternoon. Luckily, we were able to contact his parents and they immediately came to pick him up. They both cried tears of joy that he was found safely.
  7. Parents may be afraid to call 911. The parents from the situation above had been driving around all night looking for their son. They told us that they were, “…about to call 911” when they got our phone call. As a responder, you are probably thinking, “WHY DID YOU WAIT SO LONG!” But as a parent it is scary. You want to believe they are right around the corner. You want to believe they’re hiding in the house somewhere, playing a terrible joke on you. You want to believe you can handle it yourself before getting public safety involved. There is a stigma around “losing” a child. Law enforcement doesn’t yet understand all the nuances and variables of autism. I’m not saying parents are RIGHT to think and feel this way, I’m just saying these are thoughts that go through our mind. It does not necessarily indicate abuse or neglect, so please, as a responder, consider the big picture and dig a little deeper if you are involved in a situation involving a wanderer.

For more information on autism training for emergency responders, wandering, or safety tips, contact Debi@SpiritOfAutism.org.

autism echolalia

Autism Tips for Emergency Responders: Stop Echoing Me!

autism echolaliaHave you ever had that one annoying sibling when you were growing up that would torture you all afternoon by repeating EVERY. SINGLE. THING. YOU. SAID? No matter what you did, you couldn’t get them to break. It was like Chinese water torture.

Whether an autistic person is verbal or nonverbal, you may encounter the same behavior on a scene… from an adult. You ask them for their name, some ID, and other typical questions, and all you get back are echoes of what you’re asking. What’s your first reaction? “This smart *** is being non-compliant! WTH!”

I assure you, even if you witnessed them speaking in complete sentences prior to your standard questioning, the anxiety and distress an autistic person experiences during an encounter with public safety can result in the loss of their ability to articulate at all.

It may appear that they are being disrespectful but they are NOT. They are trying to communicate the only way they know how. It’s called echolalia.

What Exactly is Echolalia?

Echolalia is the repetition of phrases, words or parts of words.  Naturally, younger children, while learning to talk, will “parrot” what they hear as part of the process. That’s not what I’m referring to.

There are two types of echolalia. You may be on scene with a teen or adult that is repeating back everything you are asking them instead of giving you direct answers. This is called “Immediate Echolalia.” For example, if you say, “Do you have any ID?” the person may immediately reply with, “Do you have any ID?” It will typically be in the same tone and inflection that you used.

By repeating back words, the person is actually demonstrating that they can hear you accurately, but may not immediately comprehend what you are saying.

According to friendshipcircle.org, some adults with autism explain that immediate echolalia is a way of communicating, “I heard what you said, and I’m still processing it.”  Immediate echolalia is an attempt to remain in a conversation and give an on-topic answer, before the meaning of the conversation is fully grasped.

How do you support increased comprehension? Use visual aids, and involve as many senses as possible, but be careful not to overload them with too much sensory input. Also be aware that if you are offering two choices and the person verbalizes the second choice, they may be REPEATING the last thing you said, not actually answering your question or making the choice.

Delayed Echolalia

Back to the scene, you may ask, “Do you have any ID?” and the person may respond, “Cheeseburger,” or a punchline from a joke or TV show. This is called “Delayed Echolalia.” A person with autism typically likes to memorize and recite catch phrases, verses, portions of historical speeches, or funny scenes from their favorite commercial or movie. Unlike a neurotypical person that will retrieve a funny one-liner from a movie and throw it out for humorous effect in context, delayed echolalia will rarely be relevant to the conversation at all.

My son seems to have a new catch phrase almost monthly. We’ll be walking the dogs together and a neighbor will wave and say, “How are you?” My son might reply, “I am a person.” because that’s what he’s been saying all month, regardless of what the conversation entails. It will be his answer to everything until he finds a new catch phrase to repeat.

You should hear the variety of responses we get to that ;)

Sometimes delayed echolalia occurs because it’s calming the person’s nervous system, a form of self-stimulatory behavior. Typically, however, it stems from wanting to participate in conversation but being unable to fully understand the content of what’s being discussed. 

As easy as it is to assume non-compliance, it’s critical to realize that both versions of echolalia represent a desire for inclusion in conversation.

Share in the comments below if you’ve experienced echolalia with anyone before!

far from heaven

I’m an Autistic Adult… and I’m in Purgatory

far from heavenI’m 18. I graduated high school last July. I’m “high functioning” enough to be able to take care of my brother and myself when my mom is on night shift on the ambulance. I can dress myself (although not according to society’s “fashion” standards), I keep up with hygiene, sleep and wake on a self-imposed schedule, participate in online communities, cook for myself, help out around the house, and manage my own bank account. No, I haven’t learned how to drive yet. No, I haven’t applied for college. No, I don’t yet have a job but I’m looking for one. It really has to be something quiet and not too overwhelming, though, because there are currently no resources or tools for me to learn how to manage all the challenges I now face in the adult world.

Autism awareness and diagnoses have risen dramatically… for young children. In elementary school my brother had access to all sorts of special accommodations and therapies. Unfortunately, being a girl, I actually didn’t receive a diagnosis until I was 17, because autism presents very differently in girls.

From infancy throughout the schooling years, interventions are readily available. But what happens when you turn 18? Where are the resources? Who teaches us how to interview for jobs? Buy a car without getting ripped off? Balance a checkbook? Pick the right auto insurance? Do taxes? Grocery shop and plan meals? Go on a date? Figure out the best cell phone plan? Find friends?

Society seems to think one magically “grows out of autism” once they reach adulthood, especially if you’re considered “high functioning.” My symptoms are seen as “not really severe” so I don’t qualify for any kind of adult support…

… yet I’m not entirely sure how qualified and ready I am to “adult” right now. Of course my mom works with me on some of these things, I don’t want to make it sound like she’s not parenting me and teaching me about life. But being a young adult with autism, trying to figure out the next steps to life presents with far more struggles than simple social skills deficits.

What is “High Functioning Autism?”

According to LoveToKnow.com, the term high functioning autism, or HFA, is used to describe individuals who meet the criteria for a diagnosis of autism, yet show no cognitive delays, and are able to speak, read, and write, as well as have IQ scores of average or above. Those with HFA do suffer difficulties in communication, language, and social interaction typical of autism, as well as repetitive behaviors and narrow interests associated with the disorder. Abstract language concepts, such as irony and humor may well be beyond the comprehension of adults with high functioning autism.

While with the right support we can manage independent and successful careers, marriages, and social lives, it can still be difficult to blend into the mainstream world. Crowds, even small ones, can activate sensory overload for me and make me shut down. Fluorescent lights, smells, or certain combinations of sounds make my nervous system crawl with pain and discomfort. I have extreme anxiety dealing with the public.

Social awkwardness and communication issues can make me highly misunderstood and even considered rude. Inability to maintain eye contact during conversation can cost a job interview or friendship, as it is often misinterpreted as dishonest or lacking interest. Maybe I pass an interview and secure a decent job, but the challenges don’t stop there. Workplace camaraderie is terra incognita for many high functioning autistic adults. Small talk and sarcastic humor go over my head, and I’ve been known to not have a filter when it comes to appropriate thoughts to verbalize in conversation. Don’t even get me started on not understanding body language or non-verbal cues and facial expressions.

I’ve been accused of being odd, serious, quiet and aloof, when really I’m severely over-analyzing a simple response to “How are you?”

Being high functioning, I often feel that even the autism community discounts my struggles, as my deficits are compared to the hardships faced by the profoundly disabled. So I feel isolated from mainstream society, yet have trouble finding resources for my issues. Less severe symptoms mean I am denied applications for medical and psychological assistance.

I applaud all the awareness and resources put forth in general when it comes to autism, but there is a long road ahead of us still.

***

For tips on recognizing adults with autism on the scene of a crime, fire, medical call or disaster, check out this article, Trix Are for Kids, Autism is Not (Only)!

autism and violence

Autism Tips for Emergency Responders: Autism and Violence

autism and violenceI often get asked during my autism trainings for first responders whether or not it is more likely to see someone with autism using drugs and alcohol, specifically when I describe sensory issues and what it’s like to experience them. This often leads to a discussion on autism and violence.

Are autistic people more prone to violence?

When you look at two highly publicized incidents – the 2007 Virginia Tech campus shooting and the 2012 Newtown, Connecticut, school massacre – there is a perception by the public that persons with autism are predisposed to violent behavior. Yet, neither the DSM5 definition of autism nor follow-up studies have ever illustrated an increased prevalence of violent crime among persons with ASD.

So how do you explain violence and offending behavior? Let’s look at separating actual violent crime from aggressive behavior. In autistic individuals, a desire to communicate and/or the inability to recognize personal space might lead to inappropriate touching or pushing. This is never intentional or malevolent behavior, whereas violent crime is typically deliberate, serious, and planned. It involves force or threat of force.

So when looking at a behavior, here are some ways to distinguish a violent criminal behavior from an aggressive autistic behavior.

Autistic Behavior 1: Making no attempt to conceal or justify the behavior.

When someone believes they’ve done nothing wrong, or doesn’t understand why something is not appropriate, they will not try to hide their behavior. In my experience, most people I have worked with on the autism spectrum are 100% honest and incapable of hiding any type of behavior or reason behind it (this makes it very easy to figure out “whodunit” in my household when something is broken or missing!).

Autistic Behavior 2: The behavior is related to the person’s obsession or special interest.

Rigid, restricted and repetitive interests begin in early childhood but do change over time. They also correlate with intelligence level: the higher the level of intelligence, the more sophisticated the level of fixation. These obsessions can “graduate” from Pokémon characters to computers, technology, and scientific experiments, including arson!

Autistic Behavior 3: The behavior is from misreading social cues.

According to an example on CurrentPsychiatry.com, a young man with ASD had been fired a few days after landing his first job selling used cars because he was “sexually harassing” his colleagues. When questioned, he said that he was only trying to be “friendly” and “practicing his social skills.”

Autistic Behavior 4: The offending behavior is a result of a comorbid diagnosis.

Autism can present with several comorbid conditions, such as schizophrenia, ADHD, depression, psychosis or seizure disorder. It is critical to look for an underlying cause. In higher-functioning persons with ASD, violent crime is almost always precipitated by a comorbid psychiatric disorder.

Most people with ASD are neither violent nor criminal. There is a need to educate the criminal justice system regarding the special challenges faced by persons with autism. A defendant with autism has no physical signs of disability and is often misunderstood and mistreated.

What to do when encountering violent behavior and autism is suspected

  • Confirm the ASD diagnosis based on developmental history and any training you have received
  • Screen for comorbid psychiatric and medical disorders, including depression, psychosis, and seizure disorder
  • Carefully examine the circumstances surrounding the offending behavior

During interviews, remember to allow for more time. When you think you’ve done that sufficiently, double it ;) Also try to understand the person’s communication style before asking the critical questions, and remember that lack of eye contact, vague answers and changing the subject can be typical autism behaviors and not evidence of guilt.

 

image courtesy of interacting with autism

Managing Autism Meltdowns Before They Escalate

image courtesy of interacting with autism

image courtesy of interacting with autism

I’ve spent the last several years teaching emergency responders how to recognize someone as autistic, whether it’s a police matter, medical emergency or search and rescue call. This training has changed the way responders assess and handle situations, ensuring safety for everyone involved. The number one rule, at least in EMS, is that we all go home at the end of the shift.

I also teach emergency preparedness to Autism families to help them be ready for the worst in their community. This training includes what kinds of additional items they should consider putting in their 72-hour kit, how to best accommodate loved ones with autism if the need should arise to go to shelter during a disaster or severe weather, and much more.

Being an emergency responder myself as well as a single mom of two autistic teens, I realized that many of the calls we respond to have already become ​a crisis because a meltdown of some sort has occurred, and the situation is now escalated to the point where the family can no longer safely intervene. I started wondering how to help families BEFORE meltdowns become a crisis. Before public safety has to be involved.

But first, what exactly is a meltdown?

Basically, it’s what happens when the brain receives WAY too much information – most often sensory input – and cannot process this information in a conventional, organized manner. “Sensory Processing” refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

As an autism parent, I’ve learned over the last 14+ years that when my children are overwhelmed by the sensory triggers in their environment they are immediately thrown into survival mode – it is pure physical and psychological torture for them. Their senses are on fire and they have little control over themselves.

Even for adults with autism, a meltdown feels nothing short of overwhelming, paralyzing and out of control…

It’s like their “browser” has too many tabs open and crashes, only it’s their entire body. Their brain hits Ctrl-Alt-Del automatically, causing fatigue, disorientation and the loss of ability to speak.

And it’s behind nearly all of what everyone else sees as “bad behavior.”

Here is a (credited) video I use in my training, created by Interacting With Autism, illustrating a simple day-to-day sensory meltdown a boy experiences in a coffee shop.

Sensory Overload (Interacting with Autism Project) from Miguel Jiron on Vimeo.

Stressful, right? Now, imagine a disaster or emergency situation – where lights and sirens and a crowd of uniformed people and nosy neighbors are gathered around – and add that in for good measure. It’s beyond chaotic; it’s completely overwhelming.

I started thinking about ways to broaden my reach and help educate autism families about public safety interactions… and then I took it a step further.

What if I could help families manage meltdowns as soon as they start? What if there was a way to calm the nervous system and help someone with autism regain control of their senses before they went all the way down the “rabbit hole?”

I found an amazing tool that does just that. Whether a meltdown is from sensory overload or anxiety that often accompanies autism, this unique method can literally stop a meltdown in its tracks and provide instant relief for the person experiencing it. No, I’m not talking about any type of​ cure, of course, ​rather a way to manage a meltdown before it escalates out of control. I’ve been working with families and autistic adults alike and the results have been truly amazing.

If you’re struggling with anxiety attacks and meltdowns, or if you want to help your child overcome debilitating sensory overwhelm, I can truly help. I even use this method on myself when I’m facing a stressful or dangerous 911 call on the job! For all the emergency responders on my mailing list, this may also be a good tool to learn to help calm patients or families on scene, even if it’s a bit unconventional.

For the month of November, as my way of giving thanks for the gifts I have in my life and the relief my children and I have experienced from this priceless technique, I’m offering a complimentary consultation for my next 10 clients. If it feels like a good fit for you or your child, I’m also extending a deeply discounted session rate of just $37.

For me, November is a time of gratitude, reflection and giving back to the community. If this resonates with you, click here to find out more. I’m so excited to work with you!

autism anxiety

Autism Anxiety: It’s Not What You Think

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

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

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

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

There is so much more to it than that.  

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

So what is autism anxiety? How is it different?

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

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

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

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

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

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

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

Let’s start with what NOT to do:

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

What SHOULD you do?

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

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

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

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

 

autism no eye contact

Autism Tips for Emergency Responders: No Eye Contact

autism no eye contact

image courtesy of freedigitalphotos.net

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

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

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

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

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

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

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

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

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

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

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

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

My daughter shared this with me about her experience:

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

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

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

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

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