Tag Archives: routine

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!

autistic adults workplace

Guest Post: Autistic Adults in the Workplace

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More autistic adults are entering the workforce than ever before and with it the number of resources benefiting both employees as well as employers is growing. Not only are these autistic adults entering the workforce, they are are thriving, and this may be a direct result of the growing network of support for those with autism. With growing awareness of the different types of autism and more advice it has never been easier to be an autistic adult in the workplace.

  • What Kind of Autism? – The first thing you need to know is that autism is known as a ‘Spectrum Disorder’, meaning that autism can range from high functioning to severe. Sometimes it can be difficult to pinpoint as symptoms aren’t necessarily the same even with the same diagnosis, so it’s always best to have an open flow of communication between employer and employee so that both parties understand the specifics and the best way to handle them. Different skills and abilities will affect how they integrate into the workplace. If communication or social capabilities aren’t strong, autistic adults may prefer a quiet working environment rather than a busy office; some may not mind working with others but may have difficulties with changes and disruptions.
  • What Challenges are Commonly Faced? – While entering the workforce can be a challenge for everyone, for autistic adults they face a tough transition due to communication and social struggles. More common problems faced by autistic adults include:
  1. Difficulties adjusting to the working environment, especially if the workplace isn’t used to the needs of those with autism.
  2. Misunderstanding the emotions of others and responding in an inappropriate manner.
  3. Difficulties understanding instruction and changes in the routine.
  4. Behaviors that are obsessive or repetitive could disrupt the balance of the working environment, especially amongst other co-workers who aren’t used to or sensitive to the needs of those with autism.
  5. Processing sensory matter can sometimes interfere with work performance.

Fortunately, both employees with autism and their co-workers can overcome all of the challenges they may face through training. By researching training programs and support groups, employers can create a working environment of equals. Autistic adults can also look to improve their skills for a working environment the same way. It’s all about working together to create a professional and supportive working environment.

Thriving in the Job – With the right support and facilities autistic adults can thrive in their employment. There are many autism support organizations out there to help autistic adults find appropriate work placements as well as sourcing employers whom understand their needs. It’s important for those with autism to work in an environment where they are not discriminated and that meets their needs and capabilities; so it might be worth considering for an autistic employee to continue in a job skills support program while they are employed, to work out any communication or socialization issues.

This article was written by A. Elliott; a writer with an interest in autism awareness. She occasionally writes for Voyage Care, providers of autism care and supported living.

autistic child disrespectful

Why is My Child So Disrespectful?

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Have you ever enrolled your child in a great therapeutic or alternative program that offered improvements in behavior? Maybe things are cruising along, everyone’s in the flow… and then bam! Suddenly your child seems WORSE than before! Now there is some backtalk and strong opinions about things where there was harmony and eager-to-please attitudes before.

Or maybe you have a great set of tools that have been working for certain struggles at home or in school and then suddenly they stop. They wear off. The rewards lost their power and any consequences don’t seem to matter.

It’s very frustrating and confusing, especially when you can’t identify reasons or patterns. Erratic and disrespectful deeds and outbursts seem to be all you encounter.

If you’re like me, you immediately start analyzing where you think you’ve gone wrong as a parent, or what rules you are too relaxed about, or what changes should be made effective immediately to end this new attitude in your home.

Before you start calling military schools or Nanny 911, take a step back and consider what might be going on. It may not be disrespect at all!

There is a big picture. One that your child cannot identify for him or herself, so you have to play detective: be open-minded and look for some clues.

Sensory Processing issues

Is there a possibility of sensory overload present when you see these behaviors? Could something have changed in your home? A new vacuum, different light bulbs, more chaos (especially around the holidays!) or a family stress? What about different clothing or new foods? If you were being assaulted by your senses daily, you might “act out” to seek refuge or override an impending meltdown. To others this would look like a tantrum or behavior issue, but it may be as simple as making some adjustments in your home to accommodate oversensitive eyes or ears.

Fear from a change or disruption in routine

Many of us witnessed a great many outbursts and regression of old behaviors in the wake of Hurricane Sandy. Simple things like not having the right cereal bowl when you give your child breakfast may set off a litany of bad behaviors or verbal outbursts that seem unreasonable or like our child is seriously overreacting. What you’re seeing is your child’s need for safety and order. This is not a logical discussion or something you can “reason your child out of”. Order, safety and stability are basic human needs and they are magnified in situations that are happening outside of your child’s control (and outside of yours in many cases!).

Have empathy and try to keep as many of the routines and rituals intact as possible. Use social stories to explain natural disasters or other really tough situations.

Hormones

When puberty enters the picture you may have to throw everything you know out the window. It doesn’t matter how many years it’s been since progress was made or a behavior was licked. I dedicated a whole article to puberty and Autism that explains some of the lovely, odd things you may experience during this time.

Among these are unexpected rage over small incidents, new food likes and dislikes, sleep schedules running amok, regression of old behaviors, appetite changes, and sensory issues that are tenfold. Remember, if you’re having a hard time, imagine what your child is experiencing!

“Healing crisis”

This is a tricky one. When you see regression or outbursts you automatically assume something’s not working. However, it very well could be the opposite. Here’s a sensitive analogy:

When an alcoholic gets sober they assume life will be kittens and rainbows because they’ve stopped drinking. After all, drinking caused their problems, right? What really happens is all of the mucky feelings and issues that were being suppressed with alcohol come floating to the surface and the alcoholic must learn to now deal with these emotions in a new and healthy way. It takes time and work! New tools, new skill sets and lots of support are required.

When your child gets some of the major sensory issues out of the way with a new therapy, diet or treatment the same thing is happening. The fog is being lifted and now they must learn how to deal with the world in a new way. In some cases, your angel may be finding their voice for the first time. They might be exercising their right to an opinion, or learning to say no. This is a time for support and patience, even though it may feel like you want to start over or jump to the next option because this doesn’t seem to be working.

Lack of empathy skills

I have to constantly remind myself of this one. Right now, my son does not have the skills to understand what something might feel like to someone else. We are certainly making progress! He is so intelligent and advanced in so many ways that this one is easy for me to consistently overlook.

If you only knew how many times he hurt one of us or one of our dogs with proprioceptive crashing or impulsive behaviors and I blurted out, “How would YOU feel if someone did this to you?!?!?!”

“Um… dunno.”

I always thought this was disrespect, but he truly doesn’t know! We are now learning to try and equate something I would like to something he can relate to, and I’m seeing great results with this new method. For instance, when I don’t want him screaming in my face and jumping on me, I point out a time when he needed his space alone in his room to finish programming his new Mario world and then I ask for the same space.

Just being a child

Another one that flies out the window for me often. I am so entrenched in the world of Autism and Sensory Processing Disorder that I have to stop and realize sometimes he’s just being a boy! I have two brothers. One used to throw dried dog poop down the back of my shirt. During winter he would pack snow around a rock when we had snowball fights and nail me in the head. A brother’s job is to find his sibling’s hot buttons and push them as often and as creatively as possible.

Autism is not a “get out of jail free” card when it comes to unacceptable behavior for my child. It can be tough to discern what is bad behavior and what is self protection from a confusing world. I have to have boundaries and rules, but I can also have an understanding of the real meaning behind the behaviors so my choices come from a place of empathy and love when it’s time to take action as a parent.

What about you? How do you know when it’s disrespect and when it’s a behavior issue? Share your comments below of post them on the SOA Facebook page!

How Communicating With My Child Helps Everywhere Else in My Life

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Do you know how many times I still communicate with my son in the same fashion that my own mind processes and regurgitates information? I can jump from topic to topic getting distracted along the way (squirrel!), all the while murmuring snide remarks and sarcastic jokes under my breath about something funny I just noticed. Somewhere, embedded within my ADD spiel, lies an actual command for him to follow.

After all that, I find myself frustrated and shocked that he’s saying, “What?” to the very first sentence that kicked off the whole monologue. He heard nothing past that!

This type of spastic conversation is fine with my daughter, who follows every tangent and sarcastic comparison with uncanny speed. She’s even a step ahead of me at times! But it’s another story with my son. Another plane. Another universe.

I briefly touched on the differences in how my son processes information with my Hardware Store for a Loaf of Bread story, but I wanted to expand on it to include a deeper perspective: the way I have used this understanding to routinely communicate with others around me. Especially in the business world.

Have you ever asked someone for the status of something and received a return email that wandered all over the place but still left off some vital information (kinda like the way I talk sometimes)? How hard is it to dig through someone’s stories, excuses, and unrelated or irrelevant statements only to find that you overlooked the actual information you needed because it was buried “below the fold”?

How about looking over a proposal that has the price mixed in with the benefits, solution and problem… product features are listed inconsistently with irregular bolding and capitalization… I can’t.

I used to be able to follow those serpentine-like speeches from others and would often write in the same manner, (if a train was traveling at x mph and left he station at 6:15 in Austria…) but now I’m much more cognizant of how I can dance around the point I need to get across if I’m not careful.

Because of the way I need to speak and write for Justin so that he can understand what is being communicated to him, I have learned to carry that into other aspects in my world. I ask myself if the words I’m using are necessary to the sentence I’m typing. I remind myself to simplify. I am intentionally clear and concise.

“You can have the children on the weekend of the 13th.”

“The following sizes are available for your website banner ad.”

“These items are still needed in order for me to create your website.”

“I can train your department on the 15th at 4 pm or the 18th at 11 am. Please let me know which date works for you.”

Occasionally, I forget to include some customary small talk when I’m communicating, which isn’t always optimal, either. I’m not a robot and I never mean to be rude! But for the most part, all of my clients have remarked on the smooth process and clear updates they receive in my emails or proposals. Stopping and asking myself how my son might interpret something helps me stay on task in my communication goals with others. Sticking to facts in a polite tone can also evade arguments that some people try desperately to engage you in, by the way :)

As far as my fast-paced brain at home goes, at least I know now that when my son asks for clarification on the second word (and I’m already into the tenth sentence) it does not mean that he’s tuned me out or is choosing to be non-compliant. It means I need to slow down and finish one complete thought in a clear way before moving on. What a great lesson.

What about you? Are there new ways that you have learned to communicate from your child with Autism? I’d love to hear your comments below or on the SOA Facebook page!

5 Ways to Tell Your Children That You Love Them

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Happy Valentine’s Day!!

Today is a great day for me to reflect on how lucky I am to have two amazing children and a beautiful (expecting!) wolfie-dog in my home. Every day is an adventure and I wouldn’t have it any other way!

Recently, things have definitely been a bit strained in our house as we move through the shift of the changing times! Especially amidst the madness of single parenthood, it is so vital to take time out simply appreciate my family. Here are a few ways I love to show it:

Unplug. Turning off the iPhone, stepping away from the computer, and being present with the kids as my first and only priority – it works wonders!

Be silly. Maybe it’s embarrassing to them, but having the courage to be goofy in front of others gives my children permission to express themselves and creates lots of memories to laugh about later.

Love notes. Taking the three extra seconds to draw a funny face on my daughter’s sandwich bag, leave a note in my son’s lunchbox, or tape a sign to the TV or bathroom mirror always adds a little extra smile for the recipient :)

Change the routine. Sometimes spontaneously deciding to go out to eat, have breakfast for dinner, or go the park for a picnic will shake up the routine and add a new perspective. Letting the kids have a turn to choose is even better!

Tell them. Sounds easy, right? How often we forget to ‘catch our kids being good’ and tell them what you LOVE about their behavior, viewpoints, or appearance. The next time you want to nag about what they forgot to do, try noticing what they remembered and see the ripple effect!

How do you express your love to your kiddos? Feel free to share your unique ideas on our Facebook page!

What Do You Do When Your World Turns Updside-Down?

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So.

You’re cruising along, making progress, taking the normal ups and downs in stride… suddenly, without warning… BAM! The rug gets pulled out from under you and you find yourself spinning, reeling, and unable to take a breath deep enough to satisfy your lungs. What do you do when crisis strikes your home? How do you stop yourself from falling all the way down to the bottom? Is there a bottom, or is it just fear (False Evidence Appearing Real) that grabs hold?

My world changed a few weeks ago and it shook the very core of my being. And although I am not in the clear by any means, I feel I am now able to at least start gathering the pieces of myself and my family and pulling them into some semblance of normalcy!

Holding on to the sides of the wall is progress from tumbling with increasing velocity… so here are some tools and lessons that helped stop my fall and kept me strong for my children:

Perspective and gratitude.

No matter WHAT’S happening, it can always be worse. That may sound trite, but it is so very true. At the height of our crisis, I continued (and continue) to count my blessings and focus on the things that are going right. It doesn’t eradicate the fear and reality of what’s happening altogether, but it’s a great home base :)

Take a break for self-care.

After being in survival-mode for so many days in a row, I was horrified to find that I hadn’t eaten or slept in quite some time. This only makes the situation worse!! It is not selfish (well, it’s the appropriate selfish) to stop, breathe, take a long bath, or spend some time laughing in the midst of crisis. Even 10 minutes can repair parts of your soul and make a huge difference in your perspective and ability to cope.

Keep routines in place.

Despite the world being upside-down, I did my best to keep as much of my normal routine in place so things did not take a nose dive even faster. There is comfort and ease in routine schedules. Of course, eating and sleeping would have been good parts of my routine to keep in place, but… progress not perfection!

Keep your children in the loop… appropriately.

While I didn’t tell my children the absolute depth and underlying meanings of what was happening, I did make them aware that we were in trouble. This accomplished two things: allowed them to creatively step into their power and pool resources that I may not have considered and kept them out of the “scary unknown”. Going through something of this  magnitude and trying to maintain that all is perfectly fine with your children is extremely detrimental. The unknown, unspoken tension is so much worse than the reality of a situation. But again, this doesn’t mean spilling adult-sized problems onto little shoulders. Filters and balance are key.

Ask for help.

This is a TOUGH one! I have never been good at it, and it is not comfortable at all for me. But I did it, and I am blown away by the outpouring of love and assistance from friends and neighbors. Gratitude!

Receive with grace.

Shutting my mouth and saying, “Thank you” is also not one of my strengths. What I realized is that by not accepting or excusing away assistance offered is denying someone the gift of helping. It’s not all about me :)

Feel your emotions but don’t let them consume you.

I found myself consistently toggling back and forth between getting caught up in the hideous emotions that accompany a situation such as this and not feeling anything at all. Neither of these are the right choice. By feeling my emotions, I am honoring them rather than stuffing them down. But that doesn’t mean I have to stay there and build a condo, as someone once told me! I cannot effectively process and release emotions unless I allow myself to feel them.

Get creative.

It is easy to continue to look for the one situation or event that I think will solve my problem. But that is limited thinking. I can be open to multiple solutions that come in many forms. I will continue to explore them all with an open mind, as well as fine-tune what I’m already doing. It’s not a “here and there” situation, it’s a growth opportunity. Yes, that’s my story and I’m stickin’ to it!

I hope these tools help you through anything that comes your way!

How do you handle unexpected twists and turns from life? I’d love to hear! Also, stay tuned as I resume the amazing projects I have in store for all of you… I promise they are worth the wait!

Blessings!

Debi

Why Emergency Responder Education Part II – Behaviors

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Yesterday I participated in a beautiful 9/11 memorial service and emergency preparedness festival. I am still brought to tears when the events of that horrific day are described by anyone, especially those who serve in public safety. I am honored to be a part of a huge calling to encourage citizens to get involved and help their families, neighbors, and community be prepared for disasters of all kinds. To learn more about how you can be involved in your community, go to the Citizen Corps website.

Common behaviors of children with Autism and how to handle them

As promised, here is part two of why I am passionate about training and educating Emergency Responders about Autism. Here is a snapshot of behaviors that are highly likely to be misinterpreted by police officers, EMTs, or firefighters responding to an emergency call:

Self-stimulatory (stimming)

  • Hand flapping
  • Finger play
  • Head tapping
  • Spinning
  • Transfixing on spinning or moving objects

Unless the child is injuring himself or others, self-stimulatory behaviors should not be stopped. This is a comfort for the child.

Self-injurious

  • Head banging
  • Biting self
  • Scratching
  • Eye gouging

This behavior should be stopped immediately.

Aggressive behavior is not intentional - handle with care

  • Head butting
  • Biting
  • Punching
  • Crashing into or pushing others

Aggressive behavior is usually caused by over-stimulation, sensory-seeking, fear, pain, surprise, or lack of communication.  Remember this child does not mean to hurt you. Restrain if needed, as calmly and controlled as possible.

Insensitivity to pain

  • May be unaware of pain
  • May under-react: major physical trauma may go unnoticed
  • May over-react: minor scrapes and cuts could be perceived as major

Check thoroughly for injuries; do not rely on communication or reaction from the child.

Aversion to touch

  • Light touches (hand on shoulder, back rubbing) may be painful

Although they may crave deep compression and tight squeezes, light touch is often over-magnified and can cause pain and discomfort. Do not approach the child from behind if possible; children with Autism do not like surprises.

Avoiding eye contact

  • May look at you through peripheral glance
  • May look at you through an object or spread fingers

Do not mistake lack of eye contact for suspicion of guilt, avoidance, lack of respect, or belligerence.  Try to get eye contact if you can, but do not force it.

Lack of response

  • May only respond to visual cues

Emergency responders should consider carrying sets of visual communication cards, or familiarizing themselves with basic sign language.

Repetitive motion

  • May repeatedly fidget with an item
  • May fixate on spinning or lighted objects
  • May appear to be in a trance

Do not mistake for drug use, mental illness, or lack of respect for authority.

Extreme hyperactivity or inactivity

  • Prone to running or bolting away suddenly

    Children with Autism are prone to running away - especially if frightened or confused

  • May rapidly pace back and forth
  • May appear out of control (like the Tasmanian Devil!)
  • May go limp at touch or fold into self

Redirection is the best way to diffuse hyperactivity or passivity. Try asking what the child’s favorite show, game, or movie is.  Asking mathematical questions or giving the child a “job” to will reel in their focus.

Inappropriate emotional response

  • May laugh or cry for no reason
  • May laugh at a very serious situation, or in response to feeling or causing pain
  • May show extreme distress over minor incidents

This is very hard for us to understand. Laughter in response to a serious question or accusation does not imply guilt or disrespect. It is simply a defense mechanism for the child.

Echoing speech or movement

  • May repeat everything you say
  • May mimic your tone and gestures
  • May speak in robotic tone

Do not mistake this for “being a wise guy”, or lack of respect.

Non-verbal and non-responsive to verbal cues

  • Limited or no speech
  • May appear deaf
  • May communicate with sign language, by pointing, or using picture cards

Do not mistake for lack of interest or ignorance. Try to use common gestures to get through to the child. Be patient!

Attachment

  • May hold unusual items
  • May be extremely agitated or distressed if item cannot be located

While seeming unimportant or silly to us, comfort items are critically important to children with Autism. It may be a rock, a paper clip, fabric, shoelace, or anything. Do not take away the item from the child. Try to find the item if the child loses it.

Need for routine and order

  • Obsessed about routines
  • Literal about things like time and location (“It’s not 8:30, it’s 8:28!”)
  • May repeatedly seek places or activities from the child’s normal routine

Children with Autism look to bring order to a world that’s out of order to them. Noise, lights, smells, and other sensory challenges are coming at them all the time. This is their norm.

Oblivious to others’ emotions

  • Typically do not understand facial expressions
  • Will not understand sarcasm, idioms, exaggerations, or jokes
  • May not understand they are a victim of a crime
  • May be hard to diffuse situation with normal socialization techniques (e.g., “How would YOU feel if…”)

Don’t assume that these children “should know better”, or that a simple unapproving look will get through to them. They rarely know what they did wrong and need it explained in a way they understand.

Children may respond to loud or confusing noises by screaming to drown it out

Inappropriate response to noise

  • Hyper sensitive: May cover ears with hands or try to break object that is causing discomfort
  • Hypo sensitive: May appear deaf or not respond to verbal commands

Each child on the Spectrum presents different variations of sensory issues – no two are alike! They can even be hyper and hypo sensitive to the same thing!

No fear of danger

  • May run into traffic
  • May bolt suddenly into the street or a hazardous environment
  • May willingly go with strangers
  • Will not recognize dangerous situations
  • May not understand fire, heat, sharp objects, or other hazardous items

While often possessing extraordinary academic abilities, many children with Autism do not recognize danger, exhibit no fear, are prone to wandering, and miss basic cause and effect concepts (“If I touch this, I will get burned”). Never leave unsupervised at the scene of an accident, fire, disaster, or crime.

Using Visual Schedules

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From workingwithautism.info

There are countless times when I expect that my child with Autism simply “should know better” by now.  Did you know that an expectation is merely a resentment in the waiting?  How many times have I repeated, “You KNOW that brushing your teeth always comes next!” or “You KNOW we have to leave by 8, why aren’t your pants on?”

I might as well be the teacher from Charlie Brown, because all my son really hears is, “whaa whaa whaa…” and doesn’t understand why he is in trouble. Again.

How many repetitions does it take for him to understand a routine? Well, how many times have I thrown extra variables into that routine that end up confusing him?  An easy way to take the whole struggle and guesswork out of the mix is by using visual schedules.

A visual schedule is a set of pictures and words that communicate a series of activities or the steps to help children understand and manage the daily events in their lives. Ideally, they should communicate clear expectations for the child and decrease the need for constant reminders and many times, unwanted arguments.

At home, the schedule can be created around basic morning, afternoon, and evening tasks such as brushing teeth, getting dressed, eating breakfast, and gathering a backpack for school. They can incorporate any chores assigned to the child, such as empty the garbage or feed the dog.

Posted in a central and convenient place, the schedule can be easily referred to any time the child gets off task and distracted.

For older children, school-specific schedules can be placed into notebooks for easy reference.  This would be extremely helpful for transitions and the last segment of the school day.

Issues such as difficulty paying attention, understanding auditory input, processing multiple commands, and the inability to predict and plan within their environment are easily addressed with visual schedules, helping children to adapt and stay on-task at home, in school, or in community gatherings.

Sleep Disorders and Autism

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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?

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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!