Tag Archives: ASD

autism_vs_aspergers

Autism Tips for Emergency Responders: Autism vs. Asperger Syndrome

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autism_vs_aspergers I often get asked, “What’s the difference between autism and Asperger’s? Are they both considered autism? Are they the same thing? And what the heck is PDD-NOS?”

Just when I had a handle on everything, the Diagnostic and Statistical Manual version 5 (DSM-5) went and changed the diagnostic criteria! Here is what I know, in a (large, drawn out) nutshell:

With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of autism spectrum disorder (ASD). They were previously recognized as distinct subtypes, including autism, Asperger Syndrome, Childhood Disintegrative Disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Both autism and ASD are now considered general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by:

Communication and Social Interaction

  • Deficits in social-emotional reciprocity, ranging from an abnormal social approach, to reduced sharing of interests or emotions, to failure to initiate or respond to social interactions.
  • Deficits in nonverbal communicative behaviors ranging from abnormalities in eye contact and body language, to deficits in understanding and use of gestures, to a total lack of facial expressions.
  • Deficits in developing, maintaining, and understanding relationships, from difficulties adjusting behavior to suit social contexts to difficulties in sharing imaginative play or in making friends.

Restricted, Repetitive Patterns of Behaviors

  • Using repetitive motor movements (simple motor stereotypies, lining up toys or flipping objects, echoing speech, idiosyncratic phrases).
  • Showing inflexible adherence to routines, or having ritualized patterns (extreme distress during small changes, difficulties with transitions, rigid thinking patterns, need to take same route every day).
  • Possessing fixated interests with abnormal intensity or focus (strong attachment to or preoccupation with unusual objects, excessive knowledge in a sole interest).
  • Being hyper- or hyposensitive to sensory input (apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)

Although the DSM-5 no longer recognizes Asperger Syndrome and PDD-NOS as separate diagnoses, it is still good to recognize some distinct characteristics of each, especially since anyone with a previous diagnosis of these means the terms are still in use.

Asperger Syndrome (AS) is a form of autism in which the individual has or had little to no language delay and an IQ in the average to high range, but has social and communication challenges. It was named for the Austrian pediatrician, Hans Asperger in 1944.

Dr. Asperger called children with AS “little professors” because of their ability to talk about their favorite subject in great detail. Common signs of Asperger Syndrome include social problems, vulnerability to sensory overload, clumsiness, and a tendency to take many figures of speech literally.

Many adults who were very bright children but never quite “fit in” socially realize later in life that they may have Asperger Syndrome.

Pervasive Developmental Delay-Not Otherwise Specified (PDD-NOS) was typically reserved for a child who displays some of the characteristics of autism or Asperger Syndrome but doesn’t quite match all the criteria. Often very young children who are identified with having PDD-NOS were later diagnosed with autism or AS when they were older.

What does all this mean for us in the field?

Not much! Honestly.

I perpetually tell responders that it truly is not our job to diagnose autism in the field. What we CAN do, is recognize some of the common signs and behaviors of autism to enable us to adapt our response to more effectively communicate and interact with someone on the spectrum that’s having a really hard time on the scene of a crime, medical call, fire or disaster. This will help us keep the situation as safe as possible and best meet the needs of autistic individuals that may soon escalate into a meltdown or crisis as a response to an overwhelming environment.

Even if we recognize a “classic” autism behavior, remember to first address and rule out all medical causes of that behavior! Don’t ignore life threats while tripping over labels and diagnostic terms.

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Autism and Sleep Deprivation

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As an autism parent, I’m no stranger to sleep deprivation. When my son was a autism sleep deprivedtoddler it used to take HOURS to get him to sleep. If (not when) I was successful, he would wake up around 1 am, just as I was going to bed. Nothing would get him back to sleep – not letting him “cry it out,” not inviting him to come sleep with Mom in bed, not removing all toys in his room (he would then take apart the electrical outlet with his bare hands), not making his room completely dark with special curtains. The boy was up.

Then, after three our four hours of desperately trying to get him back to sleep, he would slip off to dream land right about when my alarm would go off for me to get up for work. FUN times!

Although I don’t need to monitor my children as closely now that they are teenagers, their sleep patterns still affect our day-to-day lives. Not only are their schedules perpetually varied (often reversed), when they do sleep it is typically broken.

Disrupted and insufficient sleep can result in daytime sleepiness, learning problems and behavioral issues such as hyperactivity, inattentiveness and aggression. Recent research in children with ASD demonstrates that poor sleepers exhibit more behavior struggles than good sleepers.

Getting adequate sleep helps muscles, bones, and skin grow and repair and fix injuries. Sleep is needed for our body to stay healthy and fight sickness by helping our immune system. There is a lot more at stake than simple drowsiness.

Why do people with autism have difficulty sleeping?

My story is not unique – sleep disorders tend to go hand in hand with autism. It is estimated that 83% of autistic people have difficulty sleeping. This can include trouble falling asleep, restlessness and poor sleep quality, thrashing about, and early rising.

There is no solid research on what causes sleep disorders in autistic individuals. The two strongest theories are misinterpreted social cues and the irregular release of the hormone melatonin.

People typically use their body’s circadian rhythms, the light and dark cycles, and social cues to know when it’s time to retire for the evening. We may see others getting ready for bed or have a sense of the next day’s schedule, which helps dictate the start of our bedtime ritual.

Children with autism fail to understand social cues and the big picture. Even after clearly repeating my expectations to my son (e.g., ten more minutes of this card game and then you must brush your teeth), he will still start a new game when the timer goes off. He’s not stalling or manipulating me for a later bedtime, he just doesn’t understand the social cue I have laid out.

Additionally, the body uses melatonin to regulate sleep/wake cycles. It creates melatonin with the amino acid tryptophan, which has been found to be either higher or lower than normal in autistic individuals. In a normal functioning system, the melatonin levels will rise at night and dip during the day, in response to the dark and light. People with autism may not release this hormone at the correct times.

How does this information apply to emergency responders?

Increase in sensory processing issues. When you respond to a call involving someone with autism, keep in mind that sleep deprivation results in an exhaustion cycle that exacerbates sensory overload. If you have taken my autism training class you may be trained to immediately be aware of how the surroundings and environment can affect an autistic person’s sensory processing issues. Even if there is nothing obvious to you (lights and sirens, crowds gathering) a person with autism may still be prone to a sensory meltdown if they are sleep deprived.

Drowsy driving. According to the National Sleep Foundation’s 2005 Sleep in America poll, 60% of adult drivers – about 168 million people – say they have driven a vehicle while feeling drowsy in the past year. The National Highway Traffic Safety Administration conservatively estimates that 100,000 police-reported crashes are the direct result of driver fatigue each year. This results in an estimated 1,550 deaths, 71,000 injuries. While these numbers are not autism-specific, be aware that drowsy driving may play a large role in MVAs you may respond to.

Increased aggression. It is common knowledge that a sleep deprived individual is more easily irritated and more likely to be angry.  It has been discovered that the prefrontal cortex is always active when one is awake and is even more active when awake for long periods of time. The only time that activity in the prefrontal cortex ceases is during sleep, when it is allowed to regenerate. A lack of sleep may correlate directly to one’s emotional control, decision making, and social behavior.

I know there aren’t really any “tips” for you in this week’s edition, just some more things to be aware of as you do scene size up and engage with those on the spectrum.

I’m about to enter a whole new world of sleep deprivation as I start my new 1645 to 0600 shifts while trying to maintain some semblance of a day job and continue to homeschool my autistic teens. I look forward to bringing you exciting new tips from the field as I embark on a new emergency responder journey!

 

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

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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.

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Autism Tips for Emergency Responders: Pain Perception

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Identifying sensory issues have always played a large role in autism. In fact, it’s what finally led my son to a correct diagnosis. I spend nearly one-third of my autism training class talking about sensory processing and how people with autism perceive the world, because I believe that once emergency responders understand what’s physically going on with someone – with their brain and nervous system – they may recognize them as autistic on a scene and possibly adapt their response to de-escalate or prevent a meltdown.

In addition to sensory issues, it is known that someone with autism may not have the same response to pain as a neurotypical person. That may mean that an autistic individual could have a severe injury and be completely oblivious to it, or have a completely inappropriate response.

Few investigators have looked into how people with autism experience pain. New information suggests, according to unpublished research presented at the 2015 Society for Neuroscience annual meeting in Chicago, that autistic people show abnormal brain responses when a painfully hot object is placed against their skin. These new findings come from one of the first brain imaging studies of pain processing in autism.

SpectrumNews.org reported that in the study, 17 adults with autism and 16 unaffected adults were placed in a functional magnetic resonance imaging (fMRI) scanner with a small piece of metal strapped to one calf. The metal heated up over three seconds to 120 degrees Fahrenheit — hot enough to hurt, but not to cause injury. The metal stayed hot for 12 seconds, then cooled to room temperature. The researchers measured participants’ brain activity through a dozen of these cycles of pain and relief.

The brain’s response to pain has three phases: early, intermediate and late. The study showed that people with autism had very similar levels of brain activity as the neurotypical control group during the early phase, or the first seven seconds of heat. The initial pain processing showed nearly identical brain activity in the somatosensory cortex, a brain region that governs touch.

However, it was during the last five seconds of the heat and cool down that showed dramatic differences. After the painful stimulus ceased the brain activity in the control group was still responding. It was noting that the body was in pain and logging it for future memories. In the autistic group, all brain activity around the pain center was completely gone once the pain ceased.

This suggests that, while the initial processing of pain may be the same in both groups, the later steps that relate to the cognitive and emotional evaluation of the pain are definitely not.

I always tell the story about how my son – who has been executing self-taught computer coding to create his own video games since age nine – will touch a hot stove, burn his hand, and go back and do it again. I always believed this was due to his inability to think through or process cause and effect connections and their consequences (and that’s still part of it). However this study may help me understand more about my son, and help clinicians get a better handle on pain perception in autistic individuals they treat.

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Using Redirection to Avert Harmful Stimming

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right-arrow-hiRepetitive behaviors such as spinning objects, opening and closing things repeatedly, rocking, arm-flapping, squealing, making loud noises or even hitting are common in those on the autism spectrum. Often ritualistic, they are known as perseveration or self-stimulatory behavior (stimming). While they may seem pointless and “weird” to us, they fulfill a very important function for the person carrying them out, such as relieving anxiety, counteracting and overwhelming sensory environment, regulating the nervous system or simply letting off steam. The frequency and severity of the behaviors varies from person to person.

When Stimming Becomes Dangerous

When responding to a call involving an autistic individual, you may encounter someone stimming in response to the stress of the emergency situation you’ve been called to. I always advocate letting the behavior continue, as it typically helps the person self-calm. The only exception is when they are hurting themselves or others. Self-calming may quickly escalate into self-injurious behavior such as hitting themselves, head banging, chewing their hands or biting themselves.

Redirection by definition means to direct again; to change the direction or focus; to channel into a new direction. It is a tool that can help interrupt the behavior. If the scene is safe you may be able to use this technique to modify harmful behaviors and help direct the person to an alternative, safer one. It may take a few attempts, but can successfully take the focus off negative coping behaviors and de-escalate the situation.

To redirect you need to quickly interrupt the negative behavior, with as minimal attention as possible. Of course, done at home in a calm environment a caregiver has an opportunity to teach, practice and continue positive reinforcement until the person can successfully recognize and modify the behavior. In the field, you may have to use a more dramatic interrupting method. Remember that you are not punishing the person for inappropriate behavior – a behavior that is serving a purpose for them – you are more or less “shocking” their system to allow for a new focus. This may look like using a different tone of voice, issuing a job or task, or even doing something outlandish, like breaking out into song. Yes, I have done this before with successful results!

I recently saw this on Facebook… definitely a true story for me.

redirection for autism meltdown

Initially you want to start with a high-probability request: one the person is LIKELY to comply with on the first request, without further prompting (“point to your nose”, “stand up”, etc.). Follow that with a series of two or three more high-P requests together and one low-P request (one the person is UNLIKELY to comply with). Keep it simple and offer praise after each successful high-P compliance. Extend and magnify praise when they comply with the low-P request.

When you are redirecting behavior, remember the whole point is to emphasize the replacement behavior that you want. If there is no replacement option, it will be impossible to redirect.

autism criminal justice

Autism and the Criminal Justice System

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autism criminal justiceDuring the introduction of my Autism Training for Emergency Responders class I talk about how special needs individuals are seven times more likely to interact with first responders, usually due to wandering, comorbid medical conditions and severely escalated behaviors that may mimic mental illness, drug abuse or just plain non-compliance.

What happens when someone with autism enters the criminal justice system? There are currently no statistics going beyond interactions in the field, but it certainly does provide a challenge and opportunity for myriad complications.

Problems with sensory overload, poor understanding of sarcasm, idioms and exaggeration as well as non-verbal communication such as facial expressions and body language can foster inappropriate responses that lead to trouble for the autistic individual. Add to the mix their trusting vulnerability and inability to deal with changes in routine or structure and people with autism often get into trouble without even knowing they committed an offense.

I’m not saying that someone with Asperger’s or autism will NEVER intentionally break the law, but so often these situations get easily misconstrued. The individual may have technically committed an offense, though the criminal behavior might have been an act of impulsivity, with no intent to do harm.

My son will repeatedly make a threatening or, at the very least, rude remark to me and then is shocked when I get upset with him. He has learned to apologize when I tell him he was hurtful or inappropriate, yet he has no idea WHY he’s apologizing because in his mind, he simply made a truthful or logical statement. Or he was repeating something he heard but has no idea what it actually means.

These kinds of “processing differences” could lead to him getting in trouble with the law down the road. The Asperger/Autism Network cites examples of unintentional offenses such as:

  • Making threatening statements
  • Inappropriate sexual advances
  • Being an accomplice to a crime due to the influence of false friends
  • Making physical outbursts in a public place or within the community

Criminal justice professionals may observe a high-functioning autistic person as appearing “normal” then diagnose their seemingly odd behaviors – such as lack of eye contact, changing the subject and blunt honesty – as disrespectful, evasive and belligerent. Sometimes someone with autism uses loud vocal tones, repetitive motions and laughter as a way to cope with both the anxiety of the situation and the overwhelming sensory environment, which is often misread as guilty and remorseless behavior.

The following strategies will help prepare you for successful interaction and communicating:

  • Approach the person a quiet, non-threatening manner
  • Allow more time for processing questions and delayed responses
  • Do not interpret limited eye contact as deceit or evidence of guilt
  • Avoid phrases that have more than one meaning or may cause confusion when taken literally, such as “Are you pulling my leg?” or “What’s up your sleeve?”
  • You may need to repeat or rephrase your question
  • Stick to narrative style questions rather than “yes” or “no” type questions – they are more reliable
  • Be prepared to write down or draw out the question for visual processors
  • Be patient – avoid becoming emotionally aroused and upset
  • Be aware of sensory processing issues: keep lighting low, limit distracting images, eliminate the presence of non-essential personnel, avoid using perfume or aftershave if possible, and avoid touching the person unless absolutely necessary
  • Seek assistance from objective professionals that are familiar with autism

Most police departments have a Crisis Intervention Team, which staffs a psych nurse and an officer trained in psychiatric crisis management. They have many tools available to them that other officers may not. If you suspect autism, seek assistance from department assets such as a mobile crisis team or unit early on in the legal intervention, as they can help identify if the person may require special assistance from psychiatric professionals.

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Emergency Responders: Why Address Sensory Issues First?

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

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

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

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

“Write your name, son.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

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

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

Nope.

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

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

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

What Does This Have To Do With Responding To Calls?

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

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

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

Let me know what you think!

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Autism Tips for Emergency Responders: Autism and Violence

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

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

“What do you mean?” I replied.

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

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

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

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

No, it did not.

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

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

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

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

Victims, Not Aggressors

 

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

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

Impulses and Behavior Response

 

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

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

Autism and Temperature Regulation

Autism Tips for Emergency Responders: Temperature Regulation

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

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

Atlanta One Inch of Snow

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

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

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

The Science Behind Temperature Regulation Issues

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

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

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

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

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Weekly Autism Tips for Emergency Responders: Co-existing Conditions

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

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

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

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

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

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

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

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

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

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

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

Medications, Pain Management and Field Impression

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

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

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

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