image courtesy of freedigitalphotos.net

Trix Are for Kids, Autism is Not (Only)

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

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.

spirit of autism loaf of bread

Autism Parenting: Are You Going to the Hardware Store for a Loaf of Bread?

spirit of autism loaf of breadThere is a really funny skit I remember from my childhood years of watching The Electric Company about sweet rolls.  It was a simple conversation between a waitress and a customer:

“A cup of coffee and a sweet roll.”

“We’re out of sweet rolls.”

“Glass of milk and a sweet roll?”

“We are… out of sweet rolls.”

“Iced tea and a sweet roll.”

“We are OUT of sweet ROLLS.”

“Orange juice and a sweet roll?”

“WE ARE OUT OF SWEET ROLLS!!!!”

(silence)

“Okay, then I’ll just have a sweet roll.”

It still makes me giggle, probably because it describes most of the people I interact with daily :)

Here’s the video if you need a memory jogger:

If you look at it from a different angle, in relation to how your Autistic child processes information, it can lift another veil in understanding and diffusing some of those frustrating moments.

How many times have you had to repeat a command or request to your child for what you perceive to be a simple and obvious task? If your house is like mine, it can sometimes be seven or eight, and then my patience can surpass simmer and go straight to a rolling boil. While it’s true children make you repeat yourself in general, consider that your Autistic child simply and honestly may not understand what you’re asking, nor do they know how to ask for clarification. Many times, if a question or statement isn’t understood by my son he will simply bypass it and move on as if it were a “File Not Found” error that automatically redirected to a new website.

Multiple commands are difficult to process. It took me a while to realize this and stop perceiving my son as being defiant.  Asking him to put on his socks and shoes, brush his teeth, and meet me in the car while I pour my morning coffee (the way I would process the morning’s rituals) would result in absolute shutdown.  I would most likely finish my tasks, expecting him to be diligently checking off the list I assigned him, and then find him on his Nintendo DS with none of the items completed.  Naturally at that point (after a minor litany of loud grumblings), I would also expect him to hurry through the list sharing my sense of urgency, understanding that we were now late.

It never happens that way.

Here’s the deal. He doesn’t process multiple commands. He doesn’t break his ritual or the order things should be done because I am yelling that we’re late. He doesn’t “just know” what comes next without being told. I can tell him we are out of sweet rolls until I’m shouting it, but he will still ask for them. Why? Because at this time, that is how his brain processes information. It is MY EXPECTATIONS of him that are causing the frustrations and meltdowns, not his behavior.

If I continue to repeat myself in these same fashions, doesn’t that mean I’m expecting him to do something he’s not capable of? Wouldn’t that be the same as going into a hardware store and asking for a loaf of bread? Would I keep asking the cashier over and over for bread, raising my voice and getting frustrated, or would I eventually figure out that I have to go to a different store to get what I need?

I learned the hard way that I can’t get mad at my child when I am expecting something from him based on the way I operate and think. Something he simply isn’t capable of. Boy do I love the mornings so much more now that I am looking for bread in the right store, and so does he!

BONUS tips for the morning:

  • Single commands (Put your socks on. Good. Now go brush your teeth. Great job!)
  • Predictable routines
  • Visual cues hanging in a central location that you can refer to
  • Laying out items the night before
  • Saving TV or games until after tasks are completed (still working on this one!)
  • Allowing extra time for zippers, buttons, etc.
  • Having races to see who finishes some of the tasks first
  • Using a timer – making it a fun game
  • Lots of positive reinforcement!

How often do your expectations cause communication breakdown with your child? Share your thoughts by commenting below!

I Took the 7 Link Challenge!

I was perusing through my favorite feeds and came across a unique content idea from ProBlogger that I just HAD to use!

The article recommends publishing a list of 7 links to posts that I (and others) have written in response to 7 categories, complete with reasons why I chose each particular post.

Here are my 7 links – I hope you enjoy them!

Your first post

Top Five Reasons I Volunteer Before I began my Autism site, I helped DeKalb County start a citizen branch of support for Fire Rescue. Along with several extraordinary team members and an amazing Captain, we formed a vision for what was known at that time as the Citizen Reserve and watched it come into fruition. It was an incredible experience. Since moving out of state, I watched Citizen Reserve change organization, duties, protocols, and eventually redefine itself. It seems to have circled back around to its original vision, and I can’t wait to be involved again in any capacity!

A post you enjoyed writing the most

… and That’s What Little Boys Are Made Of Writing to share my experiences and help others ALWAYS helps me. I can talk about being patient, kind, and empathetic with ease, but I am also a single (human!) mom that balances a LOT on my daily plate. I make mistakes. I get caught in pity parties and frustration at times. I lose my patience. This post was very therapeutic for me, as it reminded me that I don’t always have to live in an the analytical and diagnostic world of Autism. Sometimes my son is just being a boy!

A post which had a great discussion

Why Does My Autistic Child Scream?! I am always honored when someone experiencing the things I write about first hand comments on my posts or tweets. As much research and energy as I put into understanding my son, I am still an outsider when it comes to Autism and Sensory Processing Disorder. I don’t feel what he feels, or see the world quite the way he does, though I always give it my all! I was thrilled to read Jason’s thorough remarks about this post, especially when it was only my second post on the blog!

A post on someone else’s blog that you wish you’d written

Little Specks of Autism by stark. raving. mad. mommy. This post is just beautiful. I related to it so much! I especially think about all the quirky rituals I have in my daily life, from having a favorite plate that no one else can use, to my odd parking space logic, to accidentally bumping my elbow on the table and having to re-create the same volume of pain on the opposite elbow for it to feel “even”. Yep, we all have little specks of Autism alright!

Your most helpful post

Parents: Who Supports Us? This is dedicated to all of us that live with and fight for our special needs children. It’s not a job for weenies! It reminds us that our feelings are natural, however appropriate or inappropriate we are judging them to be at the time, and that support for US is vital to our children’s success.

A post with a title that you are proud of

“I’m funny how? Funny like I’m a clown, I amuse you?” This was a really fun bit to write explaining how children on the Spectrum typically do not understand sarcasm. Ironically the entire post was sprinkled with said sarcasm, as it runs rampant in my house and in my head.

Actually it’s a tie…

Are You Going to the Hardware Store for a Loaf of Bread? Another playful post that starts off with a famous scene from The Electric Company. Though quite humorous, the post really hones in on our expectations and how it’s not really fair to keep demanding things from people that they are not capable of giving.

A post that you wish more people had read

A Letter to my Son – Clearing the Past Read with tissues nearby. That is all.

Sleep Disorders and Autism

Sleep disorders tend to go hand in hand with Autism. It is estimated that between 60% and 80% of Autistic children have difficulty sleeping. This can include trouble falling asleep, restlessness and poor sleep quality, thrashing about, and early rising. It continually baffles me that my child will have no noticeable changes in behavior whether he sleeps ten hours or four and three-eighths hours. In fact, a lack of a good night’s rest can sometimes affect everyone else in the family more than the child!

No known cause

There is no solid research on what causes sleep disorders in children with Autism. 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. Boy do I spin myself in circles when I take the approach of uttering a long litany of my evening tasks and why I have to be on time the next day for a meeting! Yep. It’s like talking to a dashboard : ) It’s a good reminder for me to speak in clear and concise phrases and leave the rest to my silent mental gymnastics.

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 children. In a normal functioning system, the melatonin levels will rise at night and dip during the day, in response to the dark and light. Children with Autism don’t release this hormone at the correct times.

This coupled with sensitivity to outside stimuli can definitely play a large role in sleep disorders. Children with Autism also tend to wake abruptly to any light noise or movement once asleep. In my own house, I can vacuum next to my daughter’s head and she would continue sawing wood, whereas if I simply look at the bedroom door, contemplating checking on my son, he will sense it and pop up like a Whack-a-Mole carnival game. It’s always been like that, even when he was an infant.

Tips to get a better night’s rest

I find the best way to combat the sleep issue is by establishing a solid nighttime routine. In a perfect world, this would include a bath, reading stories, soft music, and consistent bedtimes. I do my best, but sometimes he just needs to wind down with a limited block of his favorite TV show.

Our absolute favorite nighttime ritual is “hot dog”: rolling him up in a blanket and using a yoga ball for deep compression on his back. We use different patterns as “toppings”, like circles are called onions, vertical rolling is called ketchup, etc. This is an instant calming tool that never disappoints. Finishing the routine with a recap of positive behavior for the day and a short EFT session is a surefire recipe for sleep success.

On that note, it’s almost 1 a.m. I should probably get some sleep!

Are You Going to the Hardware Store for a Loaf of Bread?

There is a really funny skit I remember from my childhood years of watching The Electric Company called “Coffee and a Sweet Roll”.  It was a simple conversation between a waitress and a customer (I will paraphrase, as it’s from memory):

“What can I get you?”

“I’ll have coffee and a sweet roll.”

“We’re out of sweet rolls.”

“Oh, then I’ll have orange juice, and a sweet roll.”

“We’re… out of sweet rolls.”

“Then can I have milk and a sweet roll?”

“WE DON’T HAVE ANY SWEET ROLLS!!!!”

(silence)

“Then I’ll just have a sweet roll.”

It still makes me giggle, probably because it describes many people I interact with daily : )

If you look at it from a different angle, in relation to how your Autistic child processes information, it can lift another veil in understanding and diffusing some of those frustrating moments.

How many times have you had to repeat a command or request to your child for what you perceive to be a simple and obvious task? If your house is like mine, it can sometimes be seven or eight, and then my patience can surpass simmer and go straight to a rolling boil. While it’s true children make you repeat yourself in general, consider that your Autistic child simply and honestly may not understand what you’re asking, nor do they know how to ask for clarification. Many times, if a question or statement isn’t understood by my son he will simply bypass it and move on as if it were a “File Not Found” error that automatically redirected to a new website.

Multiple commands are difficult to process. It took me a while to realize this and stop perceiving my son as being defiant.  Asking him to put on his socks and shoes, brush his teeth, and meet me in the car while I pour my morning coffee (the way I would process the morning’s rituals) would result in communication failure.  I would most likely finish my tasks, expecting him to be diligently checking off the list I assigned him, and then find him on his Nintendo DS with none of the items completed.  Naturally at that point (after a minor litany of loud grumblings), I would also expect him to hurry through the list sharing my sense of urgency, understanding that we were now late.

It never happens that way.

Here’s the deal. He doesn’t process multiple commands. He doesn’t break his ritual or the order things should be done because I am yelling that we’re late. He doesn’t “just know” what comes next without being told. I can tell him we are out of sweet rolls until I’m shouting it, but he will still ask for them. Why? Because at this time, that is how his brain processes information. It is MY EXPECTATIONS of him that are causing the frustrations and meltdowns, not his behavior.

If I continue to repeat myself in these same fashions, doesn’t that mean I’m expecting him to do something he’s not capable of? Wouldn’t that be the same as going into a hardware store and asking for a loaf of bread? Would I keep asking the cashier over and over for bread, raising my voice and getting frustrated, or would I eventually figure out that I have to go to a different store to get what I need?

I learned the hard way that I can’t get mad at my child when I am expecting something from him based on the way I operate and think. Something he simply isn’t capable of. Boy do I love the mornings so much more now that I am looking for bread in the right store, and so does he!

BONUS tips for the morning:

  • Single commands (Put your socks on. Good. Now go brush your teeth. Great job!)
  • Predictable routines
  • Visual cues hanging in a central location that you can refer to
  • Laying out items the night before
  • Saving TV or games until after tasks are completed (still working on this one!)
  • Allowing extra time for zippers, buttons, etc.
  • Having races to see who finishes some of the tasks first
  • Using a timer – making it a fun game
  • Lots of positive reinforcement!