autism boys club

Autism is Not a Boys’ Club

autism boys club

In Georgia, the statistics are cited as 1 in 39 boys and 1 in 181 girls have been diagnosed with autism. It is said boys are five times more likely to be autistic than girls. These numbers are in my Autism Training for Emergency Responders class.

After my daughter received an autism diagnosis at age 17, I started digging deeper and realizing that it’s not necessarily the case that less females are autistic, but that many are flying under the radar altogether.

Autistic girls are often regarded as “eccentric” or “quirky,” may be misdiagnosed, or only partially diagnosed. There are so many stories of women finally received an autism or Asperger’s diagnosis in their 30s and 40s, and how relieved they are to find they’re not “defective” after all.

It Hit Home for Us

For my daughter, it truly put the last piece of the puzzle together for us. Things she struggled with unexplainably, such as anxieties and fears, strange rituals, and extreme resistance to change, now made sense. My daughter writes,

“My diagnosis was like a lifeline. It made me feel not alone, and it made me see that I wasn’t broken. For a lot of my life I felt like an alien, I felt like I didn’t really belong anywhere. Knowing I am autistic helped me stop beating myself up over everyday behaviors and I began to accept myself – quirks and all.”

Much of the early research into autism was based on data from boys. When Hans Asperger first defined autistic psychopathy in 1944, it referred only to boys; he believed no women or girls were affected by the condition. Even the current DSM questionnaires are geared toward standard autistic behaviors in boys.

Girls are more likely to engage in “social camouflage” behaviors – like hanging out in groups, mimicking facial expressions, or showing signs of empathy – that mask many of the classic “male” signs of autism. Repetitive or obsessive acts, like collecting things or having intense interests, are seen more as unique quirks than as anti-social behaviors. They may even be quickly labeled as OCD or Anxiety, rather than seeing autism as a root cause.

Clinically Speaking…

Does it make sense that autism presents so differently in females? Think about it. Gender roles aside, the diagnostic criteria for autism is problematic. According to Scientific American, it’s based solely on data acquired from studies of boys.

Those in the medical field recognize that a heart attack presents very differently in women. Women can experience a heart attack without any chest pain or pressure; instead they may experience:

  • Shortness of breath
  • Pressure or pain in the lower chest or upper abdomen
  • Dizziness, lightheadedness or fainting
  • Upper back pressure
  • Extreme fatigue

Why is it so questionable to have something as significant as autism spectrum disorder also present differently?

Resource Gaps Galore

The absence of resources for my adult daughter with autism is due to a trifecta of issues:

  1. Despite autism being a neurological condition, it is still viewed as a mental health issue by many professionals
  2. Females are often misdiagnosed or overlooked altogether
  3. Once a child is no longer in school the resources dry up, creating an unacceptable gap in services for autistic adults

Reducing the gender gap in diagnoses is a start; it is critically important to make sure that females have the same access to resources and care that their male counterparts do.

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.

image courtesy of cjonline.com

Autism and Shoplifting

image courtesy of cjonline.com

image courtesy of cjonline.com

The holiday season is finally upon us. For most civilians that means family gatherings, Black Friday deals, tons of decadent treats, trimming the tree and more. For some public safety personnel, it means an increase in public disturbance and shoplifting calls.

How does Autism fit into this?

There are a few things to consider. At first you may get called for someone “acting strangely.” A retailer might read certain behaviors as suspicious and assume the person with autism has intent to steal or cause trouble. Some behaviors you may encounter include:

  • Methodically walking through the store in a certain pattern
  • Rearranging or lining up items on shelves
  • Staring at displays, lights or ceiling fans
  • Opening and closing doors
  • Appearing nervous and agitated
  • Unable to wait in line for their turn to pay
  • Pushing someone out of the way to obtain an item
  • Sitting on the floor rocking back and forth covering ears

Due to an obsessive need for an object, sensory overwhelm from the environment, or self-control issues that cause an inability to wait in line, a person with autism may grab an object and leave the store with it. More often than not, they are completely unaware that they have committed a crime.

Occasionally, you may also uncover that a thief has sent someone with autism into a store to retrieve an item for them. Autistic people can be eager to please and are usually compliant and trusting.

While these behaviors appear as vandalism, plotting to steal, or bullying, they are usually part of impulsive behaviors that can often accompany autism. Unlike a typical shoplifter, an autistic person will most likely walk right out of the store with the item completely visible. They will not hide it or sneak it into their clothing.

These are not excuses, of course. I am most certainly not telling you to let a person march into a store, display disruptive behaviors and walk out without paying for merchandise simply because they are autistic and may not be able to help themselves.  What I am saying is, if you respond to a call for someone acting strangely and they are carrying out repetitive behaviors or seem “tuned out,” consider the possibility that something else is going on.

Evaluate the behavior, look for alternative IDs or communication devices, get them to a quiet, safe place and contact their caregiver if possible.

image courtesy of freedigitalphotos.net

1 in 45 Children Now Diagnosed with Autism: Should We Be Worried?

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

It’s time to update my website, brochures and training materials again… according to the latest numbers released from the CDC this past Friday (the 13th!), 1 in 45 children in the United States has an autism spectrum disorder.

According to livescience.com, this new report is based on data collected during the yearly National Health Interview Survey, from interviews of parents about their children.

The CDC’s previous estimate (yes, I said estimate) put the rate at 1 in 68 children. Though this looks like another significant increase in a short amount of time, there are some other factors at play.

There is an increase in autism awareness now among parents and healthcare providers that was lacking in past years. Some kids were automatically labeled as having a developmental disability rather than being diagnosed with autism. There have also been recent changes in the diagnostic criteria and symptoms used to describe ASD.

As an autism diagnosis is becoming less and less of a stigma in our society and there has been an exponential increase in services and support, doctors are being more thorough and less likely to “under-diagnose.”

In this latest study, the way data was collected has also changed, which may play a role in the increased numbers. Putting the question about autism second in the parent surveys, before the question about other developmental delays, resulted in the data showing a higher prevalence rate for ASD and a lower prevalence rate for other developmental delays. The opposite seemed to occur in 2011 to 2013, when the questions were the other way around.

Though there is somewhat of a divide in the public opinion of increased number – broader diagnostic criteria versus food and environmental factors – most experts feel these latest results are probably a more accurate measurement of the true prevalence of autism.

My question is, are we even taking into account how many PARENTS are now getting a diagnosis of autism after their child’s diagnosis? I have seen this so much – parents who thought they were simply “quirky” or had other diagnoses are now putting the puzzle together for themselves and finding great relief in better understanding their sensitivities, thought processes and social struggles. What about all the females with autism that are either diagnosed in their late teens/early 20s or NOT AT ALL because their behaviors don’t fall under the “classic” signs of autism typically seen in males?

My guess is there are a lot of awesome NEURODIVERSE individuals walking around that have an autism spectrum disorder – our specialists, our innovative thinkers – that are changing the way our world works.

My favorite blog post from Stark Raving Mad Mommy is called “Little Specks of Autism.” She says, “More and more, I see it in myself, my family, strangers. Not full-blown autism; not something that hampers life to the point of needing intervention. Just specks of autism. Our anxiety, our OCD, our sensory issues, our weird selective hearing issues are all little specks of autism.”

Should the 1 in 45 worry us?

I don’t think it’s even important, honestly. As emergency responders, here’s what is:

  • Is your patient/victim/(even) perp having an overwhelming sensory response to his or her environment?
  • Are they experiencing communication difficulties?
  • Are they unable to look you in the eye when you’re speaking to them?
  • Can they process and understand exactly what you are asking of them or telling them?

If the answer is no to any of these, the next step should not be to fine-tune a diagnosis but to treat the person. We can try to recognize a challenging behavior not as someone who’s giving us a hard time, but someone who’s having a hard time. Whenever possible, using the methods I teach in my autism training, we can adapt or modify our response if it makes sense and the scene is safe for all involved.

weather and autism

Does Weather Affect Autistic Behaviors?

weather and autism Anyone in the Atlanta area can attest to how dreary and frustrating it’s been to wake up to recent days of endless rain. I feel like it’s been raining for months straight! Memes are starting to pop up on Facebook naming us Atlantis or Seattle, Georgia. Oh and the MUD! I have two huskies that go and sit in mud puddles in the back yard – you wouldn’t believe what my carpet and furniture looks like, despite daily cleanings.

But dreariness and carpet mud cakes are not the only side effects of bad weather. I’m hearing from parents and teachers that children have been especially wild, fidgety, irritable and aggressive during this endless bout of downpours. In fact, low pressure systems have long been linked to increased behavior problems in children. In my own household, I’m seeing its effects as well. My son is much more “in your face,” making increased noises, and treating almost every object in our living room as if it’s a soccer ball and he’s Pelé, going for the winning goal. My daughter has been extremely achy, moody and depressed. But then again, she’s 17. Isn’t this normal for a teenage girl?

What is barometric pressure?

Barometric pressure is the weight of the overlying air pressing down on the earth. It is also known as air pressure.   Low barometric pressure means the overlying air is rising, whereas high pressure means the overlying air is sinking. High barometric pressure supports sunny, clear, and favorable weather conditions. Low barometric pressure promotes rainy and cloudy weather conditions.

The Canadian Psychiatric Association published a study concluding that, “low barometric pressure is associated with an increase in impulsive behaviours.”

It seems to be magnified in children who already struggle with impulsivity or behavior issues. On a forum called Healthboards.com, a teacher that works at a Jr. High school noted that it has a big impact on the behavior of her students (especially the 7th graders). Students who have a tendency to be impulsive or hyperactive are particularly impacted. Another parent stated that their 7 year old (PDD-NOS) has always been sensitive to this, noticing a correlation between his moods, behaviors, aches and pains and the pressure in the air. You can read their specific comments here.

Tips for Weather-Related Autism Behaviors

Expect increased calls or issues during bad weather and low pressure systems. If you are responding to a call involving someone with autism, increased aggression, anxiety, impulsive behaviors and sensory issues may occur.

It is especially important to try and reduce sensory triggers and keep the environment as calm as possible. Even a small effort to district with a tactile object (such as a piece of gum or a slinky) may help de-escalate someone in a meltdown.

Be prepared to wait it out. Once you know there’s a reason for the behavior, it’s generally easier to get through it. The storm will pass, in more ways than one. Let’s hope Atlanta’s rain will do the same!

autism halloween safety

Halloween Safety for Autism Parents and First Responders

autism halloween safety Halloween has always been the most important holiday in our house. My daughter would beg me to put up the decorations on September 1st, and then submit long-winded arguments for putting Santa hats on the Halloween décor instead of taking it down for the holiday season.

Trick or treating is another story. Take one elaborate but sensory-aggravating costume, spooky lights and decorations, crowds of loud children on the streets, and possible sugar and chemical dye sensitivities from loads of candy… and you may have created the perfect recipe of a meltdown. Also, there are rules about how we knock on doors and how we talk to people that are extremely difficult for my son to understand and comply with.

What about Halloween safety? On average, twice as many children are hit and killed by cars between the hours of 4pm and 10pm on Halloween compared to the same timeframe on any other day of the year, according to Safe Kids Worldwide. Emergency Departments often see other Halloween related injuries such as eye injuries from sharp objects and burns from flammable costumes.

Add autism to the mix and Halloween can become a nightmare for parents and a challenge for responders.

Here are some tips for a parents and caregivers for a safe and enjoyable Halloween, followed by what safety issues to be aware of as a first responder:

Autism Halloween Safety Tip #1: Costumes

Let your child practice wearing their costume at home for at least a week in advance. This gives you time to make any last minute modifications and time for your child to get used to it. I wish I had a nickel for all the times it took me to learn this one.

Avoid costumes with masks or hats that restrict sight or movement. It may be worth it to start with an item of your child’s own clothing or a Halloween t-shirt. Also avoid costumes that require extra accessories – your child will not want to carry them for long and they also may contribute to tripping or other safety hazards. Trust me on this one.

Autism Halloween Safety Tip #2: Trick-or-Treating

Be aware of any homes in your neighborhood have displays with lots of gore and special effects so you can avoid them.

Use repeated social stories for safety tips about crossing the street. In addition, carry glow sticks and a flashlight if you are going out in the dark.

Make sure your child wears some type of identification in case of wandering. We love If I Need Help, an amazing company that offers unique QR Codes for individuals that may wander via patches, shoe tags, ID cards, dog tags, pins, clips and more.

Create a visual schedule that includes a map of where you will go. It’s also a great idea to practice trick-or-treating at home the week before Halloween: take turns answering the door to give out the candy and being the trick-or-treater.

Autism Halloween Safety Tip #3: The Swag

Make a plan for how you will handle candy consumption. A gluten or dairy intolerance may be an issue with Halloween treats, as are food dyes and extra sugar. Decide the candy-eating rules in advance and write them down so they are clearly understood before the actual night.

First Responders, what do you need to be aware of?

Autism Halloween Safety Issue #1: Inappropriate Behavior

You may run across or be called to a scene due to inappropriate behavior. Perhaps you see a person lying in the middle of the road. Be aware that this may be someone with autism that has completely shut down due to sensory overwhelm and is unable to get themselves somewhere safe to ride it out. You might be thinking, it’s just a child – pick them up and move them. My son is only 13 and he is seven inches taller than me and wears men’s large or extra large clothing size. If he were to shut down in the middle of the road, I would have a difficult time moving him by myself.

Something else my son did in his earlier years of trick or treating was kicking the doors of people’s houses instead of knocking. He wasn’t being malicious or intentionally causing trouble – he had severe impulsivity and was sensory seeking (his nervous system was underactive and craved constant input in the form of hitting, crashing, biting, etc.). As you can imagine, this did not go over too well with some of the homeowners.

Autism Halloween Safety Issue #2: Heat Related Injuries

Autistic individuals tend to have issues regulating body temperature. Here in Georgia it has been known to feel like summer on some Halloween nights. A child’s costume worn over their clothes plus more physical activity than they are used to can cause mild hyperthermia or dehydration.

Also be aware that loose, flowing costumes may catch fire if a person lines their walkway with candles or open jack-o-lanterns.

Autism Halloween Safety Issue #3: Fall Related Injuries

Vision, our dominant sense, is a neurological process and is therefore directly affected by autism. VISION is different than SIGHT (20/20). Vision is a neurological process that takes place in the brain. 65% of the brain is “wired” for the visual system and 80% of what the brain processes is via the visual system. It helps to think of the visual system as a major highway, and all other senses as exit ramps. The highway must be in great shape – no potholes or detours – so that you can efficiently and quickly get to your exit ramp (i.e., conduct your daily life). Vision has a huge role in guiding movement, touch, and balance.

Adding a mask with limited vision, loose costumes, and obstacles in strange driveways can compound these issues and cause someone to trip or fall.

Autism Halloween Safety Issue #4: Seizures

Nearly one-third of people with autism have Epilepsy, a brain disorder marked by recurring seizures, or convulsions. For about three percent of people with epilepsy, exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures.

Some houses use strobe lights or flashing lights as part of their Halloween decorations.

Autism Halloween Safety Issue #5: Wandering

If you encounter someone trick or treating alone, look for devices or IDs that may identify the person as autistic. They may have bolted away for their group or caregiver and it is likely they may head toward something shiny or a nearby body of water.

Keep a careful eye out for wanderers for a few days after Halloween; I’ve heard from other parents that their child continued to trick-or-treat on their own the next day or even following week!

image courtesy of horizonhealth.eu

Autism in the Emergency Room

image courtesy of horizonhealth.eu

image courtesy of horizonhealth.eu

Autism families learn fast and early how to effectively anticipate and manage a crisis. When that crisis involves a trip to the emergency room, it can escalate quickly due to the sights, sounds, smells, and accelerated pace of the environment, which can quickly overwhelm an individual with autism.

Recognizing that someone has autism is only one part of a successful emergency room experience. Here are some other tips for the ED staff to help ensure a safe and manageable experience for everyone.

Emergency Room Tip #1: Decrease Wait Time if Possible

Recognize that simply entering a noisy, crowded waiting room may trigger acute anxiety and sensory overwhelm for a person with autism. This can result in escalated and challenging behaviors. If at all possible, accompany the patient and primary caregiver to a quiet room for initial assessment and registration. If the triage nurse determines the patient will need to wait to see a physician, provide a quiet place to do so.

Dim overhead lighting if necessary and possible and monitor the patient continuously for signs of overstimulation.

Emergency Room Tip #2: Caregivers Are a Wealth of Information

Most autism parents or caregivers are well versed in their child’s medical information and are extremely helpful in gaining cooperation. Use this information! Make sure to ask early about the patient’s primary form of communication; if they are non-verbal, make sure they have a method of communication familiar to them, such as a paper and pencil, pictures, gestures, or a communication device.

Find out from the caregiver what has worked in the past when at medical visits, what their particular sensory issues are, and what their heat, cold and pain tolerances are.

Emergency Room Tip #3: Explain and Demonstrate First

Order and expectation is everything to someone with autism. Try to explain procedures before performing them to help alleviate anxiety. Use simple words and drawings if necessary.

Demonstrating what you are about to do on yourself, a colleague or the caregiver is also helpful. These modifications call for extra effort and understanding, but go a long way toward a positive experience for everyone involved.

Finally, recognize that people with autism may be on many different medications due to comorbid conditions. They can be prone to allergic reactions or dangerous drug interactions. Only administer medications when absolutely necessary.

image courtesy of http://resources1.news.com.au/

5 Ways Autism Skills Can Help Emergency Responders On Scene

image courtesy of http://resources1.news.com.au/

image courtesy of http://resources1.news.com.au/

The nature of my training classes unfortunately tend to focus on the struggles and deficits side of the autism spectrum, as this is the primary way for responders to quickly identify someone as autistic on the scene of a crime, fire, disaster or medical call and potentially adapt their response. In an emergency situation, being able to recognize the appropriate signs and adjust communication can be the difference between a potentially negative and positive outcome.

I tend to go a bit deeper in my weekly articles, offering more detailed techniques for de-escalating dangerous behaviors, discussing comorbid medical conditions for better patient assessment, proper protocol for handling service dogs, or explaining why people with autism are often drawn to water. What happens if we flip that proverbial coin for a minute and ask, how can someone with autism be helpful on scene?

People with autism display a wide range of intellectual abilities. Some show exceptional talents despite some functional challenges. Along with the struggles, autism can bring individual strengths along with special abilities, such as strong memory skills, math skills, three-dimensional thinking, musical ability, artistic ability, honesty, and the ability to intensely focus on an interest.

While only 10 percent of people with autism have savant syndrome (a condition in which a person with a disability such as an autism spectrum disorder demonstrates profound and prodigious capacities or abilities far in excess of what would be considered normal), many do have special abilities. These may include:

  • Calendar calculation – identifying the days of the week on which any date fell or will fall in a wide span of years
  • Memorizing large chunks of facts about specific subjects
  • Dismantling and reassembling complex machines
  • Working with computers

While verbal instructions are more challenging, people with autism do have advanced visual-spatial abilities, such as solving puzzles or matching items that display some sort of pattern.

How could these things help during an emergency call?

Autism Skill #1: Rote Memory Ability

An excellent rote memory – memorizing large amounts of material or storing huge lists of items in their minds and repeating them accurately can be a huge help when piecing together what may have happened on scene. This could be recalling details of an auto accident or trying to determine how a crime was committed.

Autism Skill #2: Details and Patterns

To piggyback on rote memory, the ability to notice small, individual details is a huge asset on any scene. While autistic individuals may not be able to see the big picture or piece together the information to determine meaning, they can not only recite details no one else may have noticed but often see a distinctive pattern in those details.

Autism Skill #3: Calculations

Some people with autism also have quick mathematical calculation skills – they’ re able to mentally add, subtract, multiply and divide large numbers at astonishing speeds. This could be helpful, again, in any line of questioning where numbers or specific times are important to the situation.

Autism Skill #4: Artistic Talent

Being masterful with expressing yourself through drawings can aid in finding out what happened on scene, especially if the person with autism is nonverbal. Even if they are able to communicate in a typical way, drawings can both relay missed details of the scene and the person’s perspective – how they experienced the situation.

Autism Skill #5: Musical Talent

How could someone’s musical talent possibly be of assistance during an emergency?

Many people with autism spectrum disorder have outstanding abilities in tone recognition; they can be highly methodical listeners and are able to access musical details more readily than others. The ability to mimic an exact sound they heard in perfect pitch – such as the order of numbers punched in a keypad – is definitely a skill that could come in handy on scene.

I know it can be challenging to communicate and interact with people with autism on scene, especially if they are experiencing sensory overwhelm from the noise and chaos of the emergency situation. But remember, autistic people are typically good-natured and honest, and almost always have a genuine desire to help. Why not welcome their skills and abilities? You may just end up with critical details that no one else was able to see!