Top 5 Autism Sensory Items to Keep in Your Jump Bag

Posted on January 24, 2017 by SpiritOfAutism

If you are on a chaotic scene and you’ve identified either a patient or family member as autistic, congratulations! Understanding a person’s gifts and challenges and communication style goes a long way in being able to help them. In the immortal words of G.I. Joe, knowing is half the battle

But now what?

As you know, emergency situations are challenging for EVERYONE. Add sensory processing issues to the mix and have a recipe for imminent meltdown. To help alleviate this, it’s always best to try and eliminate triggers first. Can you turn off the lights and sirens? Can you remove the person from the main part of the scene and get them into the back of the ambulance, where it’s quieter? If not, can you remove unnecessary bystanders and personnel? How about allowing one main person to do the assessment and ask questions?

Even with these techniques in play, emergency situations can still be extremely overwhelming for autistic children AND adults alike. I’ve learned over the years that there are some simple items you can always have on hand that may aid in keeping an autistic person calm and helping to avert sensory meltdowns. Here are the ones that have been most helpful to me on scenes (these are not affiliate links, I receive no revenue or credits for promoting any of the below items):

Autism Sensory Item Number 1: Paper and Pen

A meltdown is a product of sensory overload and is rooted in the nervous system. Even someone who is typically verbal will have challenges once this begins. As the brain escalates, the ability to be rational and articulate diminishes rapidly. The simple act of allowing someone in the midst of overwhelm to write down their needs can be a true lifesaver. (And if you’re a good Paramedic/EMT/LEO you should always have this on hand anyway!)

Autism Sensory Item Number 2: Miniature Slinky

These little guys are AWESOME! They are best used as a distraction, especially to keep idle hands busy while doing any primary questioning. Remember, just because someone with autism appears to not be paying attention (lack of eye contact, engaged in another activity), they typically can still hear you and process what you are asking. It will simply take a little longer, so be patient.

Autism Sensory Item Number 3: Fidget Toys

Similar to “stress balls” these fidgets are wonderful to have on hand. Within the stitched mesh there’s a movable marble. If you don’t have access to this type of toy, many dollar stores have the little squishy, nubby balls that work just as well.

Autism Sensory Item Number 4: Earplugs

Simple, soft foam earplugs from Walmart can help block out unnecessary noise on scene. Because they go inside the ear, however, someone with autism may or may not tolerate them. My son prefers headphones over earplugs but may use these if they are the only alternative and he’s heading into overwhelm from the noise.

Autism Sensory Item Number 5: Penlights

Children with autism are often fascinated with cause-and-effect activities. My son was OBSESSED with light switches and remote controls as a child. These disposable penlights are cheap and will offer a means for distraction during your assessment, without sacrificing any of your own personal tools.

I hope you found these items helpful. Remember; NEVER give a patient your phone, keys or flashlight. Trust me, I’ve learned the hard way!

What items have you found useful on a scene to calm a patient? Share your comments below!

Using Redirection to Avert Harmful Stimming

Posted on October 4, 2015 by SpiritOfAutism

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

When Stimming Becomes Dangerous

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

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

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

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

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

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

Emergency Responders: Why Address Sensory Issues First?

Posted on September 20, 2015 by SpiritOfAutism

image courtesy of freedigitalphotos.net

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

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

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

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

“Write your name, son.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

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

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

Nope.

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

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

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

What Does This Have To Do With Responding To Calls?

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

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

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

Let me know what you think!

Autism Tips for Emergency Responders: Temperature Regulation

Posted on August 9, 2015 by SpiritOfAutism

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

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

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

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

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

The Science Behind Temperature Regulation Issues

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

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

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

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

Weekly Autism Tips for Emergency Responders – Patient Assessment

Posted on May 31, 2015 by SpiritOfAutism

During a standard assessment in a conscious patient, we rely heavily on the patient’s communication – why EMS was called, what hurts, what happened, etc. This can become complicated when assessing a patient with Autism. Even a high-functioning, verbal Autistic patient may or may not physically feel pain. Sensory processing issues often include difficulty interpreting temperature and pain, and it’s hard to assess someone who can’t tell you what hurts!

Abnormal pain interpretation can sometimes mean a minor scrape or ache is perceived as a trauma or a major injury completely ignored. Traditional OPQRST surveys are not particularly reliable when someone has little sense of where their body ends and space begins and, most likely, what they ARE experiencing is not consistent with what you are observing on scene. Throw in communication deficits and sensory overwhelm of lights and sirens and being surrounded by strangers… patient assessment can be a sticky-wicket indeed.

The first thing you can do is try to remove sensory triggers if possible – remember that an ambulance setting can be extremely overwhelming for someone with Autism but so can the scene itself. Keep the scene as quiet and calm as you can.

Use the parent or caregiver and all the information they have to offer. Believe me when I tell you that most Autism parents have done their homework and know a great deal about their child’s challenges and medical issues. Establish a baseline behavior status to help in your assessment. I purposely did not say “baseline mental status” here because Autism is NOT a mental illness. While it is also not a behavioral issue, unfortunately we must rely on behaviors to help us identify Autism on a scene.

Remember that being touched may be perceived as pain, so do your best to engage the patient while triaging from distal to proximal. A Dollar Store slinky has done wonders for me – it distracts my patient while I get 85-90% of my assessment done before they realize what’s happening. (Don’t ever give a patient your cell phone or keys for this purpose, FYI!) Communicate what you are doing, whether they are verbal or not. A nonverbal patient can still hear and understand you. Bandages and adhesives may cause aggression due to sensory processing issues.

Assess thoroughly – look for less obvious injuries and DO expect the unexpected. Not long after I finished my first responder training, my son came running out of his room one evening screaming and raking his tongue. I quickly tried to figure out what was happening – did he bite it? Get stung or bitten by a bug he ate? Was there a toy in his mouth? In his other hand, I saw the glow-in-the-dark necklace from our earlier outing at Stone Mountain… bitten in half. The glowing liquid was all over his tongue and it was burning him. There was nothing about that in my first aid and responder manuals It was fine, by the way, Poison Control cleared him, but I never would have imagined looking for that kind of injury. Or the backward tumble out of the shopping cart at the grocery store, or the many times he’s wandered from school settings… but I digress.

Finally, during your assessment be aware of severe food and drug allergies as well as Pica Syndrome. Parents and caregivers are the best fountain of information, but in absence of that resource, there may be alternative IDs or apps that can provide you this valuable information in a snap.

Share your assessment tips and experiences – parents or responders – below. I love hearing from you!

Weekly Autism Tips for Emergency Responders – Sensory Meltdown Vs. Tantrum

Posted on May 17, 2015 by SpiritOfAutism

Hey, Spirit of Autism family! I appreciate your patience regarding the fact that I’ve not been able to keep the Blog up to date while finishing Advanced EMT school. It’s been quite a ride but I’m nearly there! I can see a light (or is it flashing lights?) at the end of the tunnel…

I’m going to be transitioning the Blog to focus more on Autism Training Tips for Emergency Responders, Autism Safety Tips (for families and responders alike) and Emergency Preparedness for Autism Households. Previously the focus was on parents and caregivers only, which made it very confusing for those landing on my website, seeing that I do training for emergency responders, but solely reading about my journey as a parent. I will still be sharing lots of stories and personal experiences and of course adding my experiences and perspective as a parent – how could I not? My main focus, however, is to get critical information into the hands of emergency responders that have not yet taken my training course. To do this, I need to start offering it here.

If you have friends and family members in public safety, healthcare security, disaster response, or similar fields, please point them to the website! I want to go beyond local training efforts and start making a global difference.

So, the first in the Weekly Autism Tips for Emergency Responders [W.A.T.E.R.] series is… (sound the horns)…

Sensory Meltdown Vs. Tantrum

When I introduce my course objectives to class recipients, I talk about the definition of Autism, starting with what Autism is NOT. It is not a mental illness and it is not a behavior issue. At this point, students typically turn their heads and look at each other questioningly, as if I’m speaking Swahili. If I had a nickel for every time my son’s inability to cope with an overwhelming sensory environment was labeled a temper tantrum or behavior disorder. And I’m not just talking bystanders, this has happened with Special Ed teachers and pediatric neurologists.

I am a single mom. I’m not going to sit here and tell you that my child has never had a tantrum or behavioral outburst. He’s a BOY. With lots of ENERGY. Going through PUBERTY. Of course there have been times he’s tested those in authority. That’s what teenagers do.

Even knowing all I do about Sensory Processing issues, it is still a fine line to walk when discerning a sensory meltdown and an actual tantrum. I want to help arm you with some real, tangible signs and symptoms to help you tell the difference. Recognizing the physiological differences may change your response and radically alter the outcome of a situation. I’m not ever going to tell you to go against your local protocol or training and put yourself in danger. I’m talking about some really good scene size-up tools to help you respond in the safest way possible for all parties.

Signs and Symptoms of both a Tantrum and Meltdown

If you are just looking at the surface, it is challenging to tell what’s going on – the signs of both tantrums and meltdowns may present as screaming, kicking, shouting, stomping, swearing, biting, throwing, or hitting (either others or self-injurious behavior). Let’s go a little deeper:

A Tantrum typically occurs when a person wants something

A Meltdown is a response to environmental sensory overload or feeling extremely overwhelmed

During a Tantrum the person frequently checks to make sure you are paying attention to their behavior

During a Meltdown the person does not care if anyone is paying attention, they cannot stop themselves

A person acts this way in front of an audience during a Tantrum (behavior will cease when no one is looking)

During a Meltdown the behavior will continue with or without an audience

A Tantrum will cease abruptly once the person gets what they want

In a Meltdown situation, there is no goal – the behavior will cease only when the person can self-calm or when someone helps them regain control

In a Tantrum, there are no residual autonomic nervous system signs following the behavior; the person returns to normal activity within 5 minutes

A Meltdown will yield residual symptoms such as red ears, sweating, and dialated pupils; it takes 45-60 minutes for a person to return to normal following a sensory meltdown

Remember that someone experiencing a sensory meltdown is in survival mode – they are battling their environment and it is pure physical and psychological torture. Their senses are on fire and they have little control over themselves. No one chooses to be in a meltdown, and when you understand what’s happening to the nervous system and help someone through it your are not “giving in to” or “reinforcing” negative behavior. You are throwing someone a LIFELINE.

Stay tuned for future tips to learn more about Sensory Meltdowns and how you can most safely intervene.

Puberty, Autism and Emotional Shutdowns

Posted on April 17, 2014 by SpiritOfAutism

“The universe hates me!”

My son came stomping out of his room and collapsed onto the floor, heaving a huge sigh of frustration.

Unfortunately, this is not a new scene in my house, as I also have a 16-year old daughter. ‘Nuff said. But more importantly, puberty and autism can create a vicious cocktail that seems to bring on extremely magnified sensory issues, increased hyperactivity, regressive behaviors, and a whole lot of unexplained emotions. My boy just turned 12, but we started experiencing a profusion of puberty related issues as early as nine.

“The universe is incapable of hating, sweetie. What’s wrong?”

Evidently he had built a statue of his Minecraft skin in one of the game’s worlds and he told me that his friend destroyed it. Minecraft is a unique multiplayer computer game where you learn survival skills and build custom worlds. The creative and building aspects of Minecraft allow players to build constructions out of textured cubes in a 3D world.

First and foremost, I was extremely proud of his ability to articulate to me that he was upset, the reason he was upset, and that he had worked very hard on the statue and it had taken him a long time. This is a HUGE milestone for us! But before we had a chance to begin talking about it, everything started going wrong for him. Everything he touched seemed to break or malfunction. He tried to pet the dogs and they ran away from him. His sister yelled at him for seemingly no reason.

I know from experience that when you have the “everything sucks” filter on, your experiences will follow suit. You know, like when you start out having a bad day it seems that your car won’t start, you spill coffee on yourself, you mess up a client proposal… have you ever had a day like that?

So the first thing I had to do was help diffuse his “universe hates me” perspective, starting with three deep and centering breaths together.

Delayed responses are another typical experience for Autistic children, and once I thought he was in a calmer place (about 30 minutes later), he started crying uncontrollably about the loss of his statue. It was that real guttural crying, too; I felt horrible. I consoled him and acknowledged that he felt upset that his statue was destroyed.

We then talked about choices. I told him he could either play one of his other favorite games (offline) to help get his mind off of it for now or he could choose to talk to his friend and tell him that his feelings were hurt. He could ask him why he destroyed the statue and open the lines of communication.

He had already removed his friend from his Skype list and blocked him from his server! His impulsivity coupled with an intensity of emotions he wasn’t accustomed to had caused him to overreact and shut down.

Once the tears were dry, we played a game called “5 Other Things”. I learned this gold nugget of a coping skill as a teenager and it’s never failed me. The idea is that it’s not what happens to us that causes emotional distress, rather our interpretation of it. For instance, if a person doesn’t show up for a meeting with me I might immediately feel hurt and angry, assuming I had been blown off. This could rapidly lead to a barrage of negative thoughts: “Did they even INTEND to show up? Am I not good enough for a simple text or phone call letting me know? Who do they think they are?!” etc.

“5 Other Things” forces you to step outside of that neural pattern and look at some other possibilities for the event in question. Was there a family emergency? Are they simply running late? Car trouble? Did one of us write down the wrong day?

Naturally, if someone does this sort of thing to you regularly, “5 Other Things” is not the answer… getting a new friend is J

Being that my son didn’t SEE his statue being destroyed (it was simply gone when he logged back in to the server), we looked at some other possibilities:

Did another person playing on that server do it?
Did the game malfunction somehow?
Could his friend have accidentally done it?
Was the site hacked?
Did aliens land on earth and destroy all human forms of online entertainment? (Silly can be good if you’re trying to break neural patterns!)

“5 Other Things” worked! After some investigating (and a proven screenshot alibi of the suspect, ha!) he and his NOW UNBLOCKED friend discovered that the server crashed and the world was restored from an earlier version… before he had built the statue.

What a great learning opportunity this was for us! When puberty, autism and emotional shutdowns occur, we now have a blueprint:

Take three deep breaths together
Encourage him to share what is wrong, and praise him for being able to name it
Help diffuse the “everything sucks” filter or mindset
Acknowledge the feelings he is experiencing without judgment or criticism
Play the “5 Other Things” game – without fear of getting a little silly!

Product Review: KidCompanions SentioCHEWS

Posted on February 16, 2014 by SpiritOfAutism

Back in May of 2011 I had a huge problem. My son came home from school each day with holes in his shirt. He destroyed countless pencils, board game coins, and “reusable” plastic straws. But the worst: the perpetual trips to GameStop to replace the myriad styluses (stylii?) that were nibbled to mere nubs.

When KidCompanions Chewelry came to the rescue, I shared the exciting news on the Blog, especially because Chewelry saved me over $14.99 a month because I no longer had to buy replacement styluses. You can find the original review here.

The images seem to have disappeared with the migration into the new website, so here’s a snapshot of his stylus nubs:

If your child chews incessantly, understand that it is not their fault. They can’t help it. Children with Autism especially have difficulty in regulating their sensory experiences. They can have hypersensitivity or hyposensitivity to various sensations. Excessive chewing is an example of sensory hyposensitivity.

It’s been a while since Justin has been a human beaver and destroyed items by chewing. But we have other issues. He spends a lot of time on his computer, playing Minecraft, writing custom video game scripts, Skyping with children all over the world. But he’s still an 11 year-old boy with a LOT of energy!

Although we have a mini-trampoline, Gazelle Edge, yoga ball, and play time outside, he still bursts out of his room in regular intervals looking to spend his overabundance of energy SOMEWHERE.

Many times I can redirect it to one of our exercise or sensory items mentioned above, but many times it’s not enough. His energy release of choice lately is messing with the dogs. It’s not pretty.

We have three giant Alaskan Malamutes and boy does he know how to get under their ~~skin~~ fur. Rest assured, these giant pups are very tolerant and patient; it’s still not a good situation for anyone involved.

Enter KidCompanions’ newest item: SentioCHEWS.

What are SentioCHEWS?

They are chewy shapes made with FDA compliant thermoplastic elastomers. SentioCHEWS are elastic, bouncy, AND tough! They have a soft, rubber feel and are pliable, NOT a hard chew like the KidCompanions Chewelry.

SentioCHEWS are more durable than competing products that are made of silicone. The chew or bite marks bounce back and do not leave teeth marks easily.

He LOVES it even more!! Now, with the addition of his favorite SentioCHEW in our toolbox, he is learning to overcome new challenges. Instead of just filling a sensory need, SentioCHEWS help him alleviate anxiety, address boredom, and actually provide repetitive, calming movement for him to tame some of that wild energy. What does this mean for our household? Less yelling, more productive activities. Even better?

Less snarling, more tail wagging.

Does your child chew incessantly? Check out Chewelry and SentioCHEWS today!

It’s All About the Sensory

Posted on January 22, 2014 by SpiritOfAutism

Okay, not ALL… but sensory issues play a bigger role in the daily lives of children with Autism than you might think.

I have always tried to explain this to the adults, teachers, caretakers, and yes, even physicians in my son’s life, who insisted that my child needed to be medicated for hyperactive and impulsive behavior.

There were certainly quirky and challenging things about him, even from birth. But I also had a girl first; so many of his odd behaviors were instantly dismissed as “boy stuff.” The real trouble started when he went to Pre-K and had to transition to different activities, sit quietly in circle time, and interact with a group of peers.

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

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

“Write your name.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

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

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

Nope.

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

We had an entire sensory evaluation done with a different specialist, and eventually arrived at the Autism diagnosis.

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

The school system did not follow suit, unfortunately. During our IEP (Individualized Education Program) meetings I provided all of his sensory triggers in a document, what calming methods worked for us, and physical toys and music that he could keep in his private break area at school. The Special Education Director for the district continued to try and strongly suggest he be medicated.

I was actually told in one of these meetings that I was the type of mother that would deny my child insulin if he had Diabetes just because I wouldn’t put him on Adderall or Ritalin. Unbelievable!

I calmly repeated, “We need to start here, with these sensory issues. It is tangible – you can SEE he is struggling in direct response to these triggers. Why not start with what we know and work out from there? Let’s see what behaviors are left after we address some of these root causes and we can re-evaluate from there.”

Although I finally began homeschooling my son after years of battling with the school, this information is still critical. Almost every outburst, meltdown, or seemingly “defiant” behavior can be traced down to a sensory problem my son is experiencing at the moment.

Recently I ran across Asperger Experts – two young men with Asperger’s Syndrome that have navigated their way through the roughest times of childhood and adolescence and are now helping parents and educators do the same.

They have a program called “Fundamentals For Thriving Bundle.” It’s been extremely helpful for me to continue to understand, teach and support my son in a way that he is most receptive.

They published a video called, “The Sensory Funnel.” It’s a MUST-SEE if you want to learn more about your child’s or student’s sensory issues, how they affect day-to-day living, and what you can do to help him or her succeed.

Watch the video below and let me know your thoughts! I’d love to hear if it clicked for you like it did for me, and any other comments, successes or struggles you’re going through right now!

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: sensory issues