Emergency Responders: 7 Things You NEED to Know About Autism Wandering

Posted on February 9, 2017 by SpiritOfAutism

As an autism mom, worry and fear can be my constant companions. My entire life can change in the blink of an eye, especially because my child wanders.

My son has been wandering since he could walk.

One particular time, he was playing with the hose in the front yard. Wearing no shirt or shoes, he didn’t have a care in the world. He loves water. Seconds earlier, I had checked on him through the kitchen window and he was fine. Then his sister went outside and they got into a small scuffle… she told him to “get lost.”

People with autism are very literal. That’s exactly what he did.

In less than two minutes he was GONE.

I activated 911 and had the whole neighborhood searching for him. 3-1/2 hours later he was found several blocks away under a bush. I shook him and hugged him and asked what on earth he was thinking! He only replied, “My sister said get lost.”

My son, now 14, is nine inches taller than me, has a mustache and wears men’s large sized clothing. While he wanders more “online” these days than out of the house, it is still challenging to keep him safe, especially if we go to public events and gatherings.

I have multiple stories of “close calls” like this. As an emergency responder, I’ve been tasked to find missing children at festivals and responded to autism-related EMS calls. If you’re a first responder, here are 7 things you need to know about wandering.

It can happen in an instant. Just like my story, thousands of autism parents have literally “blinked” and had their child disappear on them. It is beyond terrifying. Know that children with autism are not being manipulative, calculating, or trying to get out of a test at school… something catches their eye, or they are experiencing sensory overwhelm, and they run.
It’s more common than you think. The National Autism Association cites that 49% of autistic people are prone to wandering away from a safe environment, which is nearly four times higher than their neurotypical siblings. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers. 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering. 40% of parents have suffered sleep disruption due to fear of elopement.
They are drawn to water. In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. In my Autism Training courses I teach parents and emergency responders to search water first if a person with autism goes missing. This includes rivers, pools, lakes, ponds, and even fountains. For more information on WHY they are drawn to water, read this article.
They may not seek help. Don’t assume wandering is a crisis or emergency to someone with autism. They may be perfectly happy in their own little world and not seek assistance just because they are “lost.” I’ve seen cases where an autistic child was hungry, walked into a strange family’s house and sat down at the dinner table! If you ARE searching for a missing person with autism, don’t discount looking in tight spaces or odd locations simply because a reasonable person wouldn’t go there. I’ve witnessed children found between mattresses behind a dumpster and inside a hay bale.
They may be nonverbal. Even if a child (or adult!) is typically verbal, under the duress of an emergency they may not be able to communicate their needs. In fact, over one-third of autistic people that wander cannot communicate their name or address. Look for alternate IDs, such as bracelets, shoelace tags, phone apps, or QR codes to help you identify someone and get their medical history and caregiver contact information stat.
If there’s a reason, it probably seems trivial to you. The other night, at approximately 4 am during my shift, my ambulance was parked at a convenience store. My partner and I were standing outside, enjoying the fact that we finally got to stop for a long-awaited cup of coffee, when a 15 year-old boy walked up to us. He asked if we could call his mom and apologize for him for not doing the dishes. He said, “Please tell her I’m sorry and I want to come home.” I saw him tapping his index fingers together repeatedly (“stimming“), recognized some of his other behaviors, and immediately identified him as autistic. After some careful questions, we discovered that he failed to do the dishes 12 hours ago and was so upset that he left home. He had been wandering the streets of Atlanta and riding local trains on and off since 4 pm that afternoon. Luckily, we were able to contact his parents and they immediately came to pick him up. They both cried tears of joy that he was found safely.
Parents may be afraid to call 911. The parents from the situation above had been driving around all night looking for their son. They told us that they were, “…about to call 911” when they got our phone call. As a responder, you are probably thinking, “WHY DID YOU WAIT SO LONG!” But as a parent it is scary. You want to believe they are right around the corner. You want to believe they’re hiding in the house somewhere, playing a terrible joke on you. You want to believe you can handle it yourself before getting public safety involved. There is a stigma around “losing” a child. Law enforcement doesn’t yet understand all the nuances and variables of autism. I’m not saying parents are RIGHT to think and feel this way, I’m just saying these are thoughts that go through our mind. It does not necessarily indicate abuse or neglect, so please, as a responder, consider the big picture and dig a little deeper if you are involved in a situation involving a wanderer.

For more information on autism training for emergency responders, wandering, or safety tips, contact Debi@SpiritOfAutism.org.

Weekly Tips for Emergency Responders: Girls Have Autism, Too

Posted on June 7, 2015 by SpiritOfAutism

For 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.

Craptastrophes and Holiday Travel

Posted on November 12, 2014 by SpiritOfAutism

image courtesy of moodrush.de

And so it begins. The holiday season is landing in our laps, but that’s not always exciting when it comes to family members on the spectrum. Ever since an unnamed airline asked us NEVER to return when my son was three (NINE years ago, and pre-diagnosis) we haven’t done much holiday traveling. A small, manageable road trip here and there, but nothing to write to Reader’s Digest about.

Guess what! This year I’m taking my kiddos to New York/New Jersey for the holidays! Crazy, yes? I haven’t been home since right after 9/11 and boy have I been craving good pizza and bagels. Also, my kids’ two internet besties live in the area and they want to meet them in person. Yes, I’ve seen them on Skype video chats, they’re actually real

What’s this have to do with poop? Ha, you may regret you asked. OR, you may be in a similar situation and now you will know that you’re not alone. We’ll see…

If you’ve been following the Blog for a while you may recall that my son suffered four months of diarrhea with “unknown” cause. After some extensive (out-of-pocket expenses!) testing, some genius finally figured out that he had a bowel obstruction. That poor child went through so much when it came to all the tests he was subjected to as well as the final cleaning of the pipes. I, too, became a changed woman in regard to the things I’ve seen and handled.

Since that experience, he’s been TERRIFIED to go. He exhibits avoidance behavior to the max when it comes to this topic. His muscles hold it in by default until the body takes over and results in light “elimination notification” that he’s holding a lot more. He holds it because he knows it will be a difficult and painful experience, which is self-perpetuating, of course – it’s a difficult and painful experience because he holds it. That coupled with the fact that if I’m not home to handle the “paperwork” he feels he has no option but to keep it in.

You can imagine the devastating implications this problem has on any kind of social life (thank goodness Skype doesn’t have smellevision capacity). We have tried every supplement and over the counter medication known to mankind. We have practiced sitting and pushing and routine and ritual and social stories and tricks and negotiations and rewards and punishments. We’ve tried “we can’t go to New York unless you learn how to poop.” But that’s not really fair.

As hard as this is for me, I can only imagine it’s tenfold for him. He knows it’s not the most desirable behavior, because he avoids coming out of his room every time he first has an issue. Or he walks backward (like I don’t know!) away from me to hide his bottom.

Overall, I’m not giving up! I will do what I do – research, experiment, keep soldiering on to make this a much better experience for him. BUT we are traveling for the holidays… so what do I need to consider as far as tools and resources for this situation?

You see, when he does finally go (which takes an Act of Congress and a lot of bribing), it involves a lot of bleach, a lot of wipes, medical gloves, several pair of boxer briefs, a shower, and a lot of, um… compacted product that isn’t willing to go where it belongs when the toilet is flushed. Yeah, it ain’t pretty. Between my poop scavenger hunts from the huskies in the back yard and my poor child’s digestive issues, I sometimes feel like Pyle in Full Metal Jacket (I AM in a world of S**T!).

What do we need to pack for out of town potential craptastrophes? Do they make travel-sized plungers? Should we re-invest in Men’s Depends just in case? There are no “how to potty train your teenager” resources available, unfortunately. I’m not sure what lies ahead (and you probably don’t care to be updated, ha ha) but I want very badly for this to be a fun and successful trip for my son, not to be remembered with any kind of embarrassment or troubles. I imagine I will focus on getting the desired result for him while we’re at base camp each night (the hotel).

Have any of you had craptastrophes after an appropriate age? What helped? How did it affect travel plans? I love hearing from you, so share the poop… I mean SCOOP by commenting below!

Using Emotional Stage Index Cards for Sensory Processing Issues

Posted on September 11, 2014 by SpiritOfAutism

When speaking about Emotion Cards, there are two different types of uses and benefits: helping the child identify others’ unspoken emotional cues and helping identify the child’s own stages before a potential meltdown.

Both are extremely helpful in introducing emotional identification, understanding, and regulation. During tonight’s Web TV show, Austin and I talked about Emotional Stages index cards that my son and I created. During his first grade year I believe they were responsible for a real quantum shift toward our goal of helping him identify and self-correct some of his pre-meltdown behaviors.

The challenge

What we were finding in school was that during certain transitions throughout the day he would start exhibiting behaviors that indicated his difficulty adjusting in some capacity. Handled incorrectly or ignored, these behaviors would quickly spiral toward loss of control.

My idea was that I wanted him to start to recognize when his body or senses started feeling a little squirrelly so that he could either self-correct if able, or ask for help appropriately (e.g., a sensory break or a walk around the school with the special ed professional). By teaching him to identify the signs and stages of losing control, he could hopefully have access to the support he needed and decrease the number of incidents where his behavior did reach that point of no return.

The cards

Justin and I took five index cards and numbered them one through five. He then drew a Mario face on each one, with number one being calm and happy. These faces progressed with two and three – feeling a little uncomfortable and weird – and on to four and five, which represented needing help and finally a complete meltdown.

We then laminated them, punched holes in the upper left corners and put them on a key ring for him to carry with him. Each morning I walked into class with him, did some sensory exercises, and asked him to identify how he felt with one of the number cards. In most cases, the amount of exercises done would directly correspond to his number, and our goal was to have him at a one or two before I would leave the classroom for the day.

The result

This number system quickly became a simple means to have him check in with himself throughout the day. For numbers three and four he had a set list of appropriate suggestions to help him get back to a one or two. Even when we experienced days where a five was reached, the stage was at least identified quickly, allowing the teachers to activate an “emergency plan” we wrote into his IEP.

I honestly feel that having Justin create these cards with me and begin to use them really helped him get to know himself in a systematic and linear way that he could clearly understand. They helped him with his feelings, they helped take the guesswork out of the picture for the teachers, and they helped our family both at home and any public outings.

What have you used in your house that helps identify emotions and stages of behaviors? I’d love for you to share!

A Different Kind of Social Story

Posted on September 6, 2014 by SpiritOfAutism

Butch trying to hide from my son. He doesn’t quite fit in his safe place anymore!

I have a serious problem at home right now. My son spends a lot of time on his computer (no surprise there to any of you, I’m sure!). During these times of programming, learning, chatting, and playing games a lot of energy builds up inside of him. His current way of releasing the energy and handling “boredom” during breaks is to constantly tease one of our Huskies.

His favorite thing to do is to immediately corner the pup (and by “pup” I mean our 100-pound boy who was the runt of the pack!) and start grabbing his fur or poking him until he starts snarling. Justin loves the snarl face. But he doesn’t stop there. He perpetually snaps at him with his hands until the puppy snaps back with his mouth. Getting his hand away just in time is a game for my son. Unfortunately, it’s a dangerous one.

While Butch, being more Malamute than Husky and more laid back, would never intentionally hurt my son or be aggressive toward him, dogs have a threshold for teasing. In my county, if a dog bites someone they are immediately removed from the home and euthanized without question. Of course, Butch has never hurt my son to date, but I know as a parent and a dog owner that the possibility of my son going too far lives in the back of my mind and it could have a very bad outcome.

I have tried explaining to Justin that Butch would get taken away and put to sleep (and to someone with Autism that means literally what it sounds like – someone making him take a nap). I have warned him numerous times that he could get hurt very badly. No amount of punishing, yelling, bargaining, or social stories have persuaded my son to stop teasing the dog.

Then I remembered a recent video blog by Carla Butorac about an app called My Talking Pet. This gave me an idea!

Using a communication style called NVC, I wrote a short script as if Butch were telling Justin how it makes him feel when he is constantly teased. NVC is best explained this way from NonViolentCommunication.com:

Most of us have been educated from birth to compete, judge, demand and diagnose — to think and communicate in terms of what is “right“ and “wrong“ with people.

We express our feelings in terms of what another person has “done to us.” We struggle to understand what we want or need in the moment, and how to effectively ask for what we want without using unhealthy demands, threats or coercion.

NVC provides a “template”, or a four-part process to an empathetic and compassionate communication style. I’ve been told by Autistic adults that NVC’s template really helps solve some communication riddles for them, as it’s like a linear formula that can help express feelings and needs in a safe way.

The four-part process starts with Observations: “When I (see, hear, notice)…” followed by your Feelings about the observation: “I feel…”. Next you state your Needs: “… because I need/value…” and finally presenting a clear, doable Request without demanding: “Would you be willing to…?”

I decided to give it a shot. Here is the video that Butch made, asking Justin to stop teasing him using this clear and compassionate communication style.

Keep in mind that we continue to experiment with physical ways for Justin to release energy and get more exercise. One way is using Adventure to Fitness videos (also found on Carla’s wonderfully resourceful Blog), which I’ll be talking more about on my Web TV show this week. Stay tuned for more about this great fitness program for your kids!

In the meantime, are there ways you are demanding a behavior from your child that they keep resisting? Could you reframe it with the NVC template and try again? Let me know your thoughts by commenting below!

Why Do They Stim?

Posted on March 4, 2014 by SpiritOfAutism

As 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!

Two Simple Visual Strategies You’ll Use All The Time – via Behavior Communicates

Posted on June 9, 2013 by Debi Taylor

I recently ran across a brilliant video from Carla Butorac with BehaviorCommunicates.com that teaches two simple visual strategies that help remind us as parents and teachers to cut the verbal and go visual with our children.

If you find yourself telling a child to do something over and over and over (my son) and they don’t comply, you need to go visual and SHOW them!

This video illustrates two simple examples of visuals you can use in the classroom or at home. The first is called FIRST and THEN; the second visual is called a token board.

Take a look at the video to see what this looks like!

I can’t wait to employ these ASAP to help Justin stay on track, especially since I homeschool. Give them a try and let me know how it goes by commenting below or posting to the SOA Facebook page!

You’ll also want to head over to Carla’s website, BehaviorCommunicates.com, to learn some more amazing tips like how to teach a child with Autism to play!

Guest Post: Autistic Adults in the Workplace

Posted on March 11, 2013 by Debi Taylor

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:

Difficulties adjusting to the working environment, especially if the workplace isn’t used to the needs of those with autism.
Misunderstanding the emotions of others and responding in an inappropriate manner.
Difficulties understanding instruction and changes in the routine.
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.
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.

Autism, Sensory Processing Issues and Potty Regression

Posted on February 25, 2013 by Debi Taylor

This is not a fun topic for me to discuss, but I’m hoping that together we can help each other. If you are experiencing anything like this at home, regardless of your child’s age, you have my utmost empathy and understanding.

My son had delays in potty training, which is certainly not uncommon for a child with Autism and Sensory Processing Disorder. Truth be told, I have less detailed memories of those days as a single parent with chronic sleep deprivation, but we got through it. Not that my situation has changed, but things seem a bit more manageable with older children! Or maybe I’ve just matured

He’s never been able to “take care of the paperwork” on his own, and that is challenging enough because I’m not here 24/7 to tend to his bottom. He has been known to hold it until I’m home from work, which creates some issues with the routine ebb and flow of daily potty experiences. Additionally, his diet is not 100% gluten free and he has never had a pleasant bathroom experience. The other part of the equation is due to his sensory processing disorder: he is unable to feel the sensation of having to go until it is absolutely the last second before an emergency. We have been working on this diligently for years with exceptional progress.

Until recently.

Justin will be 11 this month. About three months ago I noticed that he stopped going. Every few days I would find soiled boxer briefs in his closet or under his bed. Ruh-roh.

I immediately bought hygiene social stories, made it ABSOLUTELY clear that I was not mad at him and he would not be in trouble, and encouraged him to try using the bathroom on a regular schedule with visual supports.

It worked for a little while, and then things took a turn for the worse. He hadn’t gone for about a week and I made him sit down and try before I went to work one morning. When he was done I saw blood. A frightening amount of it.

Luckily, we ruled out the really scary stuff at the hospital and discovered it was due to impacting. More talks, more social stories, more diet adjustments… I thought it scared him into being more diligent with his potty experience. He has made it clear that not being able to clean himself embarrasses him, so I believed he had the capability and awareness to make certain choices regarding the bathroom.

Still he is regressing. Now he goes in his boxers and cleaning him up has become a physical issue. He is bigger than me. I am very careful to avoid attaching negative emotions to this experience and always try to be 150% supportive, but it is harrowing.

Why he is afraid to go

I believe that sensory issues are still playing a role, but there has to be other stuff going on to foster this behavior. His diet can always be improved. I’ve read that fear could stem from leaving a part of himself behind. And of course, overall it’s a long and painful experience for him.

For a child that can’t stand a speck of dirt on his hands, it bewilders me that he can sit in soiled and pungent undies with no issues. I won’t even tell you the details on how I had to sanitize his room. ACK.

Solutions

You know me, I always have to have a plan of action when faced with a challenge! We’ve luckily ruled out medical concerns and reasons. I thought about buying adult diapers, but I feel like that would make it okay for him to keep doing this. So here is what we plan to try:

More social stories
Positive reinforcement
An interval timer where he will try at set times to get him used to the routine again
Continued tweaks to his diet
More movement, including yoga
Natural stool softener, such as flaxseed oil

I will keep you posted! What about you? Have you experienced this at home with your child (no matter what age)? What worked for you? Did anything make it worse? Share your stories by commenting below!

Why is My Child So Disrespectful?

Posted on December 2, 2012 by Debi Taylor

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!

Spirit of Autism, LLC

Autism Training for Emergency Responders • Emergency Preparedness

Tag Archives: behavior