Category Archives: Information & Research

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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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.

weather and autism

Does Weather Affect Autistic Behaviors?

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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!

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Emergency Responders: Why Address Sensory Issues First?

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image courtesy of freedigitalphotos.net

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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Trix Are for Kids, Autism is Not (Only)

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When I first began my Autism Training for Emergency Responders journey, my presentation focused heavily on children with autism, as that was my personal experience. This, of course, is well needed, but with 50,000 autistic teens transitioning into adults each year (with very few resources to aid that transition), my teaching has expanded immensely. Especially knowing that people with autism are seven times more likely to interact with emergency responders.

I have two teenagers – 13 and 17 – on the autism spectrum. My daily contemplations and challenges have gone from, “Please stop climbing on that thing, we’re going to get thrown out!” to, “Am I providing enough support to teach you the life skills you need as a young adult?”

Additionally, my 13 year-old is seven inches taller than me, has a mustache, and wears men’s large clothing (when he wears clothing at all). Despite his level of comprehension and response in an emergency situation, his size alone would warrant him being treated like an adult on scene, which has the potential to go downhill very quickly.

In 2000, 1 in 166 children were diagnosed with a form of autism. That figure has been climbing ever since, as we are now looking at 1 in 68 (1 in 42 boys). Here in metro Atlanta, that’s one child on every school bus. 1 in 42 boys will grow up to be 1 in 42 men.

You do not “grow out of” autism. Sure, with the right support and tools you can learn coping skills and methods to help improve your day-to-day living. But autism doesn’t magically go away when you turn 21!

The Centers for Disease Control says that the number of adults living with autism is expected to climb by about 700 percent by 2030. From 1990, when adult stats were first taken, the number of adults being diagnosed with autism has nearly tripled.

This does not even include the number of parents who, after receiving an autism diagnosis for their child, came to the realization that they, too, have autism but were never diagnosed.

Recognizing Adults with Autism On Scene

Emergencies are stressful for everyone! An adult with autism may react in ways that appear odd or threatening to a responder. It can be more challenging to identify on scene, and responders can be caught off guard if someone goes from “having it all together” to a complete autism meltdown in a short amount of time.

Remember, we always treat the patient or victim, not the diagnosis. However, here are a few common traits or behaviors that might help you recognize that your patient or victim has autism.

Body language/facial expression challenges. Neurotypical people often easily express themselves, including verbal and non-verbal methods. Adults with autism have significant challenges when it comes to interpretation and displaying types of non-verbal communication. They have trouble maintaining eye contact, interpreting facial expressions, and using motions and gestures. Remember to use direct words that have only one meaning when communicating so there is less chance for misinterpretation.

Sensory Processing challenges. Individuals with autism have either extreme or inefficient sensitivity when it comes to stimuli. While some autistic adults have learned to cope with sensory issues in their daily routines, an emergency situation will involve a ton of new smells, sounds, input, and sights, and they may be unable to process these sensory details adequately. Remember to reduce sensory triggers if at all possible (e.g., turn off lights and sirens, remove unnecessary personnel).

Empathy challenges. Adults with autism struggle with showing shared sensitivity of feelings with others and have difficulty processing others’ perspectives. On scene, this could present as if someone is “cold” or doesn’t care about the outcome of a family member, or sometimes even themselves.

It is typically taught that people with autism are incapable of employing “theory of mind,” or, in other words, unable to imagine anyone else’s thoughts and feelings. Empathy is more complicated than that. There is cognitive empathy, the ability to read other people’s feelings, but there is also affective empathy, the ability to share other people’s feelings. Just because someone with autism may not have the social/cognitive skill to read someone else’s feelings doesn’t mean they can’t feel someone else’s pain. Do not assume that a person’s inability to interpret nonverbal cues means that they don’t care and lack empathy.

Verbal challenges. Up to 40% of adults with autism never learn to speak. If they are verbal, they may have trouble maintaining a conversation, expressing their needs, or processing thoughts appropriately. Remember to look for or provide alternative communication methods if possible (pen and paper, sign language, smart devices).

Uncommon preoccupations. Many people with autism are extremely knowledgeable about certain topics, such as aviation, engineering, word origins, video games, or old movies. They may demonstrate hyper-focus on a particular area of interest, while showing complete disinterest or inability to follow along with other topics. If you are having trouble completing your patient survey or interview, try to engage the person in the topic they are preoccupied with to start the conversation rolling. Once you have gained rapport, you can gradually “fold in” the questions you need answered.

Routine challenges. Routines and rituals are very important to people with autism. They help to maintain order and predictability in their daily lives. This can be a challenge on scene, as most emergencies are not part of a schedule! You may need to swiftly remove someone from a dangerous situation or separate them from their caregiver depending on the emergency. If the scene is safe, allow them to maintain as much of their routine as possible. When you cannot, take a minute first to explain to the person what is about to happen before you act.

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Autism Tips for Emergency Responders: Autism and Violence

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image courtesy of freedigitalphotos.net

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

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

“What do you mean?” I replied.

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

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

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

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

No, it did not.

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

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

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

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

Victims, Not Aggressors

 

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

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

Impulses and Behavior Response

 

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

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

2014-07-04 20.39.14

Weekly Autism Tips for Emergency Responders: If I Need Help

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QR Code

My son wearing his unique QR code at the Chamblee fireworks in 2014.

My boy is a wanderer. After having a girl first, one that was nearly always attached to my side, I was not prepared for the terror of repeatedly having a child go missing in the blink of an eye.

Now he’s 13 years old, 7″ taller than me and weighs 210 pounds. He doesn’t wander often. In fact, I can’t seem to get him to wander… away from his computer, that is ;) However, we are still prepared; despite the repetition of safety-based social stories and the fact that he prefers to stay in his room… there is always a chance he will impulsively go seek something outside and get caught up in it until he’s no longer sure where he is. There are also large events that we sometimes venture out to, when the odds are stacked in our favor and we have all our tools to make it a successful outing, that breed great opportunities for him to be lost in the crowd.

My son is verbal, but when something happens to him that deviates at all from his normal routine, he shuts down. He knows his name, address, and phone number, but when he’s in distress all he can process is what’s happening to him at that moment. He doesn’t think through asking critical questions or seeking help, he either shuts down exactly where he is or he goes. Like Forrest Gump goes – no idea where he’s going or what or who he’s trying to reach, he just goes.

So how would you respond to a 210-pound, stocky man child (that sometimes wears diapers because of crippling digestive and bowel issues) that cannot tell you his name, where he lives or what’s wrong?

In our case, you could scan him! (What?)

As a parent, I have researched myriad IDs and tracking devices for my child. I’m glad to see so many options available now – so many other parents stepping up to the plate and inventing products to keep their children safe. My son has extreme sensory issues (and I mentioned he’s a 13-year old boy)… he rarely keeps CLOTHES on. A clunky tracking device on him would not be there long.

If I Need Help has saved our bacon on more than one occasion! First of all, the creators are super cool, funny and awesome parents who, like many others, had a dire need to keep their own child safe. Secondly, the QR code patches and clothing were easily tolerated by my son! He actually loves the idea of having his own unique “code” and wears it with pride.

Butch in the Tub

“I’m safe in here, right, Mom?”

We didn’t make it to fireworks this year. The ones that went off in our neighborhood ALL DAY really put him into a bad sensory state. Together, with our terrified, Thundershirt-clad husky seeking shelter in the tub, we focused on calming routines instead of venturing out to the city’s festivities. ‘Twas quite a night. Last year, however, we went to the City of Chamblee fireworks and had a great time! Donning his QR code on a Minecraft shirt, our first stop at the festival was the police tent, where I introduced my son, explained he was Autistic, and told officers if they spotted him anywhere without me, they should scan his code with their smartphone. The QR code gives instant access to my son’s emergency information, I am able to change anything in his profile REAL TIME based on the scenario, and the entire thing can be emailed to searchers if he went missing. It is his unique ID, a way for him to communicate when he isn’t able.

One time, he was playing with the hose in our front yard and his sister apparently told him to get lost. Being literal like he is, he did just that. In the blink of an eye he was gone – no shirt, no shoes and soaking wet. It took a neighborhood search party, DeKalb PD and a lot of faith that day, but I got my son back safely.

He wasn’t wearing a shirt, so how could the QR code have helped? If I Need Help has some NEW products – they now have custom Dog Tags and ID cards that have the name, number and additional info printed on them along with the QR code.  People who are more independent like these, but they are also good for people who do not keep their shirts on. 

QuickStartGuideWithBlurb

If I Need Help Quick-start Guide

With the free sign up you can create a profile, edit it live in real time, send the profile to other caregivers, and print out your own code. Many people are printing their codes, laminating them and taping or glueing them to their phones, devices or anything else they keep with them regularly.

If you’ve taken my Autism training course, you already know some signs and behaviors that will help you identify that someone may need help. Keep your eyes open for anyone wearing or holding a QR code on their person and don’t be afraid to SCAN IT! You may just be saving a life.
2014-12-28 11.57.09

Weekly Tips for Emergency Responders: Girls Have Autism, Too

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2014-12-28 11.57.09For nearly ten years I have been ensconced in the world of Autism. I have spent countless hours in research, created home therapies, advocated for my son, created a Blog about our journey to help other parents, and eventually birthed a training program for emergency responders. For the past few years I have trained many police and fire departments, disaster response groups, EMTs, hospital security officers and more.

At times during this path, I have come across some Autistic behaviors and traits that better describe my neurotypical daughter than my son. I quickly dismissed them as Autism, mostly because I was comparing them to the “classic” signs I see in my son and teach about. She is very verbal. She doesn’t have (many) sensory processing issues. She doesn’t seem to have gross and fine motor deficits (though neither of my children can ride a bike). She was fairly social in elementary school. She can dress herself and doesn’t need help bathing or using the bathroom. She understands sarcasm and others’ facial expressions.

Recently she approached me with comments about her social awkwardness and lack of a filter when she talks to people and wondered if she might have Asperger Syndrome (a high functioning form of Autism). We started to look at the big picture:

  • As a toddler, she lined up all her Fisher Price farm animals and each one sequentially received an equal number of rides in Farmer Brown’s tractor.
  • When she pretended to serve family members tea, it was repetitive and always in an order that she proclaimed. If someone switched places or spoke out of turn she shut down.
  • She would hide under the table or in her room if we had any kind of company at the house.
  • She walks on her toes almost 90% of the day when she’s up and around.
  • She would refuse to get out of the car if we arrived somewhere and it didn’t match the schedule or routine I first verbalized before we left.
  • She only eats four foods, and they have to be very specific types within those foods. She has gone five days without eating as a preschooler because I tried to make her try something new (“children won’t starve themselves”… uh-huh). She literally gags or throws up when trying a new food.
  • She abhors showers. Now as a teen, she takes them when she absolutely has to because she’s aware of what others think. But it’s still a struggle.
  • She won’t wear shoes anywhere unless she absolutely has to, and if she does they’re usually flip flops.
  • She missed a third of 5th grade due to social anxiety and “illness” that couldn’t be defined. By 6th grade I had to homeschool her after she completely shut down several weeks in a row during Middle School.
  • She has no interest in shopping, makeup, hairstyles, shoes, hanging out at the mall, or any other typical “girly” things.
  • She only wears comfortable loose clothing and leaves her hair down.
  • Her only friends live in the computer, except for a childhood friend she met at age 5 that sees her from time to time.
  • She HATES new stuff. A new smartphone or computer will cause her great anxiety because she likes things the way she is used to them and doesn’t do well with change.
  • She has joined multiple groups and classes and always quits after a few sessions due to social anxiety and perceived notions that everyone hates her.
  • She was diagnosed as OCD, which fits, but there are also caveats and certain missing pieces to this.
  • She wakes me up in the middle of the night citing crippling fears of random things that might suddenly go wrong and cause her to die or be injured. Once a thought like this gets into her head she can’t make it stop.

Of course there is nothing wrong with some of these behaviors, I am not making any kind of judgements… just looking at the big picture. I dismissed many of them as her being an “eclectic” child, while secretly blaming some on bad parenting: me giving her too much leeway because I’m compensating for being a single parent and having to work so much.

Then we starting doing some digging together, met with her counselor and she received an official diagnosis of Asperger Syndrome.

In Georgia, 1 in 39 boys are diagnosed with Autism, while it’s only 1 in 181 girls. Whether or not that means Autism is more prevalent in boys or that girls are not being diagnosed because it presents so differently, we don’t know right now. Either way, recognizing Autism in girls can be tricky. Here are some specific things to look for or be aware of:

  • Most often seen as just “eccentric” or “quirky”
  • More expressive than male counterparts
  • Retreat into films, books or characters
  • May be highly educated but slow to comprehend
  • May not do well with verbal instructions
  • Anxiety and fear are predominant emotions
  • Will typically shut down in social situations but can socialize in “small doses”
  • Often prefers the company of animals to humans

These traits may not ever come to play on the scene of a crime, fire, disaster or medical call, but the more you arm yourself with Autism education the better you can do a scene size up and make fast decisions. You never know when you see someone “not acting right” and something from a blog post or Spirit of Autism training class will pop for you and make a difference in the outcome of the situation.

image courtesy of crisisprevention.com's Risks of Restraints

Weekly Autism Tips for Emergency Responders – Facts About Restraining

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image courtesy of crisisprevention.com's Risks of Restraints

image courtesy of crisisprevention.com’s Risks of Restraints

Restraining someone with Autism is a touchy subject. Often, when I bring it up to emergency responders they immediately get defensive and feel I am purporting a shiny, happy world full of kittens and rainbows where no one gets hurt… and an Autistic person acting violently will 100% of the time respond favorably to a polite request to calm down.

I’m not a drama llama blogger that thinks I’m qualified enough to tell all of you that put your life on the line how to do your job. Nope. I’m a responder, too. And a parent of two Autistic teens that perceive and respond to the world very differently. My offerings are simply more tools for your toolbox. Never to REPLACE the job you have to do, but to help you, particularly with scene size up. To give you the knowledge to say, “Wait – there might be something else going on here.” You may or may not have the opportunity to respond differently, but if you have a deeper understanding of the behaviors you encounter and additional tools to fall back on, it helps everyone go home safely at the end of the day.

What You Should Know About Restraining

Ideally, it should be a last resort. CrisisPrevention.com states that, “other than to receive medical or nursing care, individuals should be restrained only when all of the following guidelines are met:

  • The person is an immediate danger to self or others
  • Other ways to manage the person’s dangerous behavior have failed”

Restraints must NEVER be used as punishment or to inflict pain. A physical restraint should be used as a temporary emergency measure to take control of another person only until that person has regained control of her own behavior and is no longer a danger to herself or others.

If giving a person a chance to self-calm or having a trusted family member or friend intervene is NOT an option, is there a way to simply seclude the person? If their meltdown behavior is a direct result of an overwhelming sensory environment (e.g., lights and sirens, crowds) calming can sometimes occur quickly when you remove sensory triggers.

If you do successfully move someone to a quieter area and they begin to calm down, it’s important to assign someone to be with them at all times. They may be a bolt risk or, if agitated again, could start self-injurious behaviors.

If you have exhausted your options or the person is injuring or could injure themselves or others, restraining may be necessary for the safety of all parties involved. From a physiological standpoint, here’s what you need to know:

Typically an Autistic person’s trunk (torso) is poorly developed, which affects balance, coordination, and especially their airway. Using standard restraint methods on someone with Autism may result in positional asphyxiation.

If you must restrain:

  • Especially dangerous positions include facedown (prone), a seated or kneeling position in which the person being restrained is bent over at the waist, or any facedown position on a bed or mat
  • Check their condition frequently – look for choking, vomiting, discomfort
  • Put them in a quiet, safe place away from others
  • They may have a difficult time supporting their airway
  • Turn the person on their side to ensure normal breathing
  • They may be prone to seizures
  • Be prepared for resistance – they may not understand why they shouldn’t struggle

It’s important to note that restrained individuals have gone from a state of no distress to death in a matter of moments. Avoiding high-risk positions that interfere with breathing is of course best; however, even in a standard position, an Autistic person is still at risk for positional asphyxiation. Be alert!

Spirit of autism stim

Why Do They Stim?

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Spirit of autism stimAs a caregiver, educator, or even parent of a child with Autism, you’re most likely accustomed to witnessing some repetitive behaviors on a regular basis that seem odd… and even make you feel a little uncomfortable.

Whether or not you are familiar with the term “stimming” (short for “self-stimulation”), you’ve probably seen it in the form of hand or arm flapping, spinning, rocking back and forth, or self-injurious versions like hitting or biting oneself.

Stimming can also be verbal. It’s not uncommon to hear repetitive squealing, screaming, or sound effects coming from a child with Autism. In fact, one of my son’s favorite noises can be heard here (speakers DOWN, trust me!) :   The neighbors have actually called the police in response to hearing that one on a summer day when his bedroom windows happened to be open. They thought he was in a life-threatening situation!

Yes, some days my son’s stimming can be enough to turn my hair grey. But then I think, if it’s this hard for me to deal with his noises and repetitive behaviors… what is HE going through? How hard is it for HIM to deal with his environment?

Why do they stim?

One of the biggest reasons is to counteract an overwhelming sensory environment. 

We don’t just have five senses, like we were taught in school. We actually receive sensory input through sights, sounds, touch, tastes, smells, movement and balance, body position and muscle control.

Difficulty interpreting the input leads to devastating consequences with:

  • Interactions with others
  • Daily functioning
  • Behavior
  • Regulating emotions
  • Learning
  • Social relationships

Stimming is a way to retreat and relieve the pain and overwhelm of your surroundings.

It also alleviates high levels of anxiety felt daily. If you had to spend most of your energy trying to process and block out painful noises, lights, smells, and textures how much focus would you have left for daily tasks, learning and growth?

Stimming helps to refocus and realign. The ability to create order and routine from the chaos of your surroundings is sometimes as easy as spinning in an office chair or rocking back and forth.

It’s soothing. I always found it strange that my son hears things ten times louder than I do and noises like the school bell are painful, yet when he screams or squeals it somehow calms him. But it’s true. Many adults with Autism have told me the same – it feels good.

It’s like a steam pressure valve. What happens when a valve stays closed and the pressure builds up with no release? Yup! Nuclear meltdown…

One of the biggest points I like to make when I train Emergency Responders – who certainly can mistake stimming for drug use, mental illness or non-compliance – is that they should NEVER try to stop someone from stimming unless they are hurting themselves or others.

Imagine telling a blind person not to put their arms out to find their way around a room, just because it looked “weird” or made us uncomfortable. That’s how I view stimming – it’s necessary for my son to function at this time. Now that I’m able to better understand his experience, I’m not nearly as stressed by it – but we DO work on redirection and (sometimes) going to a designated place to stim freely. It helps him identify with his own body’s needs, which ultimately gives him more confidence and self awareness.

When you think about it – how many of you bite your nails, tap your foot, drum with a pen, scratch or even pick at things when you’re stressed? I know I do some of those! Isn’t that a form of stimming? Yeah, we all kinda stim in our own way, don’t we?

Do you struggle with your child or student’s stimming behaviors? Share by commenting below or posting on the SOA Facebook page!