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.

image courtesy of interacting with autism

Managing Autism Meltdowns Before They Escalate

Posted on November 5, 2016 by SpiritOfAutism

image courtesy of interacting with autism

I’ve spent the last several years teaching emergency responders how to recognize someone as autistic, whether it’s a police matter, medical emergency or search and rescue call. This training has changed the way responders assess and handle situations, ensuring safety for everyone involved. The number one rule, at least in EMS, is that we all go home at the end of the shift.

I also teach emergency preparedness to Autism families to help them be ready for the worst in their community. This training includes what kinds of additional items they should consider putting in their 72-hour kit, how to best accommodate loved ones with autism if the need should arise to go to shelter during a disaster or severe weather, and much more.

Being an emergency responder myself as well as a single mom of two autistic teens, I realized that many of the calls we respond to have already become a crisis because a meltdown of some sort has occurred, and the situation is now escalated to the point where the family can no longer safely intervene. I started wondering how to help families BEFORE meltdowns become a crisis. Before public safety has to be involved.

But first, what exactly is a meltdown?

Basically, it’s what happens when the brain receives WAY too much information – most often sensory input – and cannot process this information in a conventional, organized manner. “Sensory Processing” refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

As an autism parent, I’ve learned over the last 14+ years that when my children are overwhelmed by the sensory triggers in their environment they are immediately thrown into survival mode – it is pure physical and psychological torture for them. Their senses are on fire and they have little control over themselves.

Even for adults with autism, a meltdown feels nothing short of overwhelming, paralyzing and out of control…

It’s like their “browser” has too many tabs open and crashes, only it’s their entire body. Their brain hits Ctrl-Alt-Del automatically, causing fatigue, disorientation and the loss of ability to speak.

And it’s behind nearly all of what everyone else sees as “bad behavior.”

Here is a (credited) video I use in my training, created by Interacting With Autism, illustrating a simple day-to-day sensory meltdown a boy experiences in a coffee shop.

Sensory Overload (Interacting with Autism Project) from Miguel Jiron on Vimeo.

Stressful, right? Now, imagine a disaster or emergency situation – where lights and sirens and a crowd of uniformed people and nosy neighbors are gathered around – and add that in for good measure. It’s beyond chaotic; it’s completely overwhelming.

I started thinking about ways to broaden my reach and help educate autism families about public safety interactions… and then I took it a step further.

What if I could help families manage meltdowns as soon as they start? What if there was a way to calm the nervous system and help someone with autism regain control of their senses before they went all the way down the “rabbit hole?”

I found an amazing tool that does just that. Whether a meltdown is from sensory overload or anxiety that often accompanies autism, this unique method can literally stop a meltdown in its tracks and provide instant relief for the person experiencing it. No, I’m not talking about any type of cure, of course, rather a way to manage a meltdown before it escalates out of control. I’ve been working with families and autistic adults alike and the results have been truly amazing.

If you’re struggling with anxiety attacks and meltdowns, or if you want to help your child overcome debilitating sensory overwhelm, I can truly help. I even use this method on myself when I’m facing a stressful or dangerous 911 call on the job! For all the emergency responders on my mailing list, this may also be a good tool to learn to help calm patients or families on scene, even if it’s a bit unconventional.

For the month of November, as my way of giving thanks for the gifts I have in my life and the relief my children and I have experienced from this priceless technique, I’m offering a complimentary consultation for my next 10 clients. If it feels like a good fit for you or your child, I’m also extending a deeply discounted session rate of just $37.

For me, November is a time of gratitude, reflection and giving back to the community. If this resonates with you, click here to find out more. I’m so excited to work with you!

Autism Anxiety: It’s Not What You Think

Posted on September 1, 2016 by SpiritOfAutism

As an emergency responder, I’m sure you’ve had “that call” a bunch of times… it comes in as heart attack or chest pain, and you drive lights and sirens to the call location only to find out your patient is simply having an anxiety attack. Sure, you do your job and tell them to take some deep breaths, you assure them they are safe, maybe even call a family member, and get a refusal. All the while in your head, you label it a BS call, or “status dramaticus.”

Of course I am not belittling or dismissing the fact that generalized anxiety disorder is real in any way; it is a recognized disorder and it affects people greatly. What I DO want to talk about it autism-related anxiety, and how it affects those who experience it.

My 18 year-old daughter has anxiety. It is a huge part of how her autism manifests. It’s taken me some time to truly understand the things she struggles with.

To be completely raw and brutally honest, there are days – even now – where it’s hard for me to put myself in her shoes. This month I’ve worked a ton of overtime shifts, operating on two hours of sleep per day if I’m lucky, and still couldn’t pay some of our bills. I’m managing a special needs household on my own and the more I work, the more I watch my “kingdom” spiral out of control as I fall behind on the day-to-day tasks that are important to our survival. So when I look over at my daughter and she’s completely melting down over something I consider a bit trivial, there is a part of me that thinks, “Really? Over this? What if she had REAL responsibilities, like a typical 18 year-old? What if she were amid choosing a college, taking exams, working, experiencing peer pressure, trying alcohol, or was in a relationship? How the hell would she handle THAT if this (minor) thing is completely destroying her right now?”

There is so much more to it than that.

Of course, I’m human. I worry that I am coddling her or sheltering her too much. I worry that she won’t become a functioning member of society. But then I see her face a lot of her anxiety head on, with the attitude of a warrior, and I watch her make great strides overcoming some of her worst attacks without anyone telling her what to do… and I know she is where she needs to be right now. Especially with the help of my meltdown management breakthrough technique.

So what is autism anxiety? How is it different?

For one, autism anxiety is more physiological than psychological. When anxiety kicks in, it’s not necessarily triggered by stressful thoughts. Sometimes, it’s just there, like a nagging toddler that constantly follows you around and tugs at your apron strings, demanding attention. Aside from the typical rapid heart beat and dry mouth, it can cause an array of GI issues, from nausea and vomiting and diarrhea to digestion issues and acid reflux. It can manifest as joint pain, muscle aches and circulation issues, causing things like Raynaud’s disease. It can make your whole body shake uncontrollably for no logical reason whatsoever. Being in fight or flight mode long-term is very stressful on the body. Being unable to logically control it feels like pure torture.

The other day, my daughter told me it was very “loud and crowded” in her head. Like that scene in Bruce Almighty where Jim Carrey starts to hear everyone’s prayers in his head at the same time, my daughter hears all her thoughts. Only they’re not so nice. They constantly tell her she’s not okay, there are things to worry about, things to be scared of. They bring up every line of every conversation she’s had and tell her how she should have said things differently. They remind her of every embarrassing moment of every childhood event, relentlessly. It’s like a constant soundtrack in her head, and she has to learn to tune it out just to function.

That’s just the thoughts. Then the physical symptoms kick in. The nausea, the muscle cramps, the trembling… for her, it feels like she’s in a tiny glass case and can feel her anxiety climbing up her body and suffocating her. And there’s no escape. It doesn’t matter how logically I approach her fears or thoughts, she cannot control them. She can’t simply “snap out of it.” Her brain does not care if there is a real threat or not; her body reacts as if there is. And it goes downhill from there.

Eventually, if she cannot gain control over it when it’s happening, she will reach the point of complete shutdown, which can include paralysis, difficulty breathing and the loss of ability to speak. She describes this as an overload. There are so many thoughts and physical sensations hitting her simultaneously that it becomes overwhelming. In this state, if I ask her, “What’s wrong?” she feels like all of her thoughts form a huge, heavy mass and it’s just too much. She can’t name or articulate any one thing.

These are just the day-to-day experiences, not even touching on anxiety that stems from social situations and having to interact with others.

Now let’s think about at adding an emergency situation to the mix. In my autism training program for emergency responders, I talk about how it’s more difficult to identify autism in females. Autism anxiety can be a huge clue.

So what should you do on scene when you recognize this type of paralyzing anxiety in a patient with autism? How is it best handled?

Let’s start with what NOT to do:

DO NOT become angry or raise your voice
DO NOT restrain unless absolutely necessary
DO NOT tell someone to simply “snap out of it”
DO NOT say, “Use your words” to someone. As the brain escalates, the ability to be rational and articulate diminishes greatly.
Avoid moving someone until they calm down, unless they are in immediate danger or the current location/setting is contributing to the escalation.
Remove unneeded bystanders – including additional personnel
Do NOT turn it into a power struggle

What SHOULD you do?

All efforts should be made to prevent a meltdown if possible. Remember, you are not “giving in” to negative behavior; you are literally throwing a lifeline to someone who is unraveling neurologically

DO turn off lights and sirens if possible
DO give space to allow the person to self calm if they are able
DO allow one familiar family member or caregiver to remain with them
DO respond patiently and compassionately
DO offer choices
DO provide a pen and paper to see if they can write down their needs
DO keep the individual safe from harming him or herself

Being an EMT means that I have a responsibility to my community to provide the best patient care I can, including recognizing and helping those with special needs that struggle with a variety of disorders and symptoms. Being an autism parent means that I must continually strive to find a balance between honoring and supporting my children’s struggles and giving them tools to help them be the very best version of themselves and succeed as an adult.

Autism anxiety is a tough thing for me to help my daughter manage… but any time I get overwhelmed with her meltdowns I stop and imagine what it must feel like for her. Seeking education and providing compassion and empathy will take you a long way as an autism parent OR as an emergency responder. Or in my case, both

Autism, Depression and Suicide

Posted on December 14, 2015 by SpiritOfAutism

image courtesy of cultureofempathy.com

Today I read a very moving post on EverydayAspergers.com, a blog that helps raise
awareness about Asperger’s and females. The entire article really opened my eyes to my 17 year old daughter’s mental and emotional struggles as she tries to make her way in this world, yet feels the need to apologize every day for simply existing.

I was always bewildered by her low self-esteem, as I raised her with abundant compliments, unconditional love and unlimited support. I made it known to her that her voice and opinions MATTER and are validated.

Being raised in a very abusive and dysfunctional family setting myself, it makes sense to me why I struggled to overcome worthiness issues for so many years. But my beautiful, brilliant, quirky and ridiculously talented little girl faces similar obstacles, and after reading this I understand a little bit more about Asperger’s and the female brain.

Here are a few of the highlights that really stood out to me:

The times I need to curl in a corner and cry with the imaginary arms of someone around me, and then sobbing uncontrollably, as I realize like all the times before, there is no one there.

The truth of my isolation and how no one will ever be able to slip into my mind and understand.

Counting the minutes until I can sleep, hoping the sleep will help me escape the increasing thoughts of fear.

Realizing again and again I am different in a world that seems riddled with sameness. Understanding that the depths of me are so deep that even I get lost with no hope of escape.

Feeling like an alien. Feeling like an alien. Feeling like an alien.

The way in which I step back as observer and watch myself freak out and wig out and create chaos out of nothing, but still being unable to stop myself.

Thinking anything I say isn’t needed, is irrelevant, or will just bury me and leave me alone.

You can read her whole post here.

This prompted me to do some additional research on Asperger’s and suicide.

On the Spectrum News website I learned of a published study from The Lancet Psychiatry, revealing that two-thirds of a group of adults diagnosed with Asperger syndrome said they had thought about committing suicide at some point, and 35 percent had made specific plans or actually made an attempt.

35 percent!

For those with Asperger’s, struggling their whole lives to fit in can take a toll on them emotionally. Add to that autistic cognitive patterns such as the tendency to perseverate or get stuck on a particular line of thought and it can directly lead to vulnerability toward suicide.

What makes an Aspie teen a higher risk? AACC.net says the number one reason is social isolation and rejection. Aspies tend to have decent friendships in elementary school, but there is sudden shift in middle school.

Peers start noticing differences in behaviors; friends from elementary school suddenly distance themselves, which can be confusing (and terrifying) for the Aspie, who wonders why these people were friends in 5^th grade but not in 6^th.

Adolescence is a time students are seeking identity and peer approval. But odd mannerisms, avoiding eye contact, lack of filters for appropriate conversation, not understanding sarcasm or idioms, and constant interruption are just some of the things that cause an Aspie to be shunned or bullied as a teen. Increasingly harder schoolwork and being left out of group projects or teams can trigger anxiety and depression.

Tony Attwood, a clinical psychologist known world wide for his knowledge of Aspergers Syndrome, speaks about the Aspie tendency to catastrophize, making it challenging to regulate their emotions. Additionally, the amygdala of an Aspie tends to be 10-15 % larger than in neurotypicals, therefore inflating the “danger alerts” in the fight/flight/freeze system.

This means something that is a 1 on the scale of a neurotypical person may easily register as a 10 to an Aspie. As the brain sends signals that start the sympathetic nervous system racing, the person with Asperger’s may be the “last to know” about their heightened emotional state, making them just as surprised as an observer when emotions and behaviors have escalated.

How Can We Help?

The goal for crisis intervention is to increase the person’s sense of being emotionally supported as well as their psychological sense of possible choices.

Autism Help lists some the following strategies:

Establish rapport (e.g. ‘I’m listening and I want to support you’)

Explore the person’s perception of the crisis

Focus on the immediate past (e.g. a recent significant event or problem) and immediate future

Develop options and a plan of action

Increase the options available to the person and the number of people available to help

Try to involve appropriate people in the person’s natural support system

Encourage them to develop a plan including resources and support in the immediate future. Write down the steps of a personal safety plan and suggest the person carry them around for fast access to support.

Much like the Disaster Psychology module taught in CERT, you want to avoid certain phrases when communicating, such as, “Everything will be fine, don’t worry,” and “Come on, it isn’t that bad…” False reassurances, minimizing feelings, and intrusive questioning are inappropriate responses for individuals at risk for depression and suicide.

Instead, practice active and reflective listening techniques when the person shares their feelings with you and paraphrase and summarize often.

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.

Holidays and Autism: Help Your Child Stress Less

Posted on December 17, 2014 by SpiritOfAutism

Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful. ~Norman Vincent Peale

As beautiful an image as this conjures up, this isn’t always the same Christmas experience felt by children on the Autism spectrum, especially those with sensory processing issues. Although the idea of gifts, snow and yummy treats sound exciting to your ASD child, the holiday experience can be extremely overwhelming. Rather than soft and beautiful, it could look and sound more like this to your child:

So what can you do to help alleviate your child’s holiday stress? Here are some common causes of holiday anxiety and what to do about them.

Over the top decorations. Flashing lights, musical wreaths, tinsel everywhere… it’s a Christmas wonderland to you but it could be a Christmas nightmare for your child.

Before choosing the blinky, flashy (stroke-inducing) light strings, you can first take your child to the store or to someone else’s home to see how they respond to similar decorations. Get them involved in the process, too! Allow them to interact with the decorations and help choose where they will go. It also helps to decorate in stages over the course of a week rather than having your house suddenly go from the safe haven your child knows to an overwhelming environment.

Family gatherings and routine disruptions. Whether you’re having company or going to a relative’s for holiday festivities, both involve a disruption to the schedule you worked so hard to keep with your child. Visual schedules and social stories can prepare for this disruption and help your child know what to expect.

If you’re having company, make sure your child has a quiet space to retreat to. Explain to relatives and other children that your child is in “quiet time” (not the same as time out!) and will come out when he or she is ready to play again. If the quiet space is your child’s room, consider having a special sign that can be hung on the doorknob that alerts visitors that “do not disturb time” is in progress.

If you’re going to someone else’s home, have an exit strategy! From personal experience I will tell you – DO NOT rely on anyone else for a ride home if your child has had enough for the day. Work with the host to establish a quiet space ahead of time and let the other guests know that regular breaks may be needed for your child. You also may want to pack some back up foods in case you have a picky eater or a child with food allergies. I’m about to experience this with a sibling I haven’t seen in almost a decade. He decided to have a big family ham dinner when we arrive in NY. I have one picky teen that eats four SPECIFIC foods only (none of which are on the menu), one with extreme food sensitivities, and then there’s me, who no longer eats meat or animal products. Should be an interesting gathering

Gift confusion. Does your family put gifts under the tree before the big day? If so, you may find a surprise – your child may open them early, and they may open everyone’s! Prepare your child for family gift traditions. Let your child play Santa and hand out the gifts to all the guests and family members – a busy mind and hands help keep temptation to open early at bay! Also, if your family takes turns opening (not everyone annihilating the packages at once), passing around a special ornament will help signal to your child whose turn it is.

Your child turns into a whirling dervish during travel. Yes, this has happened to me. In fact, before social media was popular, a certain airline actually asked us NEVER TO RETURN when we deboarded the plane. It was insane.

Driving has also been challenging. Although I am more in control of stops, breaks and other issues during a road trip, it can still go awry (and has). Here are some things that really saved my bacon:

Noise blocking headphones for the trip
Personal audio headphones for a handheld game system, portable DVD player, iPad or laptop
Approved snacks and drinks that didn’t contribute to hyperactivity and digestive issues
A visual schedule of what to expect once we arrived and during our stay
A few sensory “fidget” items for him to calm himself with
A nature app, DVD, or CD to play at the hotel at night for winding down
Frequent stops to get out and stretch

Next week I am driving my children to New York/New Jersey from Atlanta. That’s 12-14 hours, depending on food, bathroom and stretching breaks. You can bet your sweet bippy I’ll be packing all of these things and employing many of the tips I’m sharing with you!

Over to you. What holiday tips keep the stress level down in your Autism household? Share by commenting below!

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!

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!

A Bad Dream or a Wake Up Call?

Posted on December 5, 2013 by SpiritOfAutism

I had a nice article lined up for you today about Minecraft and life skills, but something happened to me this morning that I felt HAD to share with you. It’s a very personal experience and I’m really baring it all… I hope you don’t mind.

I awakened at 3 am, which has been happening for nearly three weeks for some reason. I performed my newly created middle-of-the-night rituals: glass of water, briefly let the dogs out, interacted with my teens (who are still up at that hour!), and became wrapped up in an episode of Law and Order SVU, which always seems to be airing on one of the crime channels in my cable rotation.

Trying to fall asleep to a crime drama is another story, so when panic set in about how much slumber I could squeeze in before my 5 am alarm I switched to the “Soundscapes” music channel and tried desperately to quiet my mind.

During that time I had an experience that rocked my very core.

I was fading in and out of sleep – you know that place where you’re dreaming but still aware of sounds and activity in your environment? That sort of sleep “purgatory”, if you will.

In the first part of the short dream, someone was outside our living room window, mowing our lawn, and the dogs were alert and circling like they do when a stranger is near our property. I remember thinking that my landlord had just mowed (which was true), so who was this person mowing my yard for a second time this week? Especially in December?

At this point, I could feel myself hyperventilating a bit in real life, sort of like when you’re dreaming that someone’s chasing you and you wake up out of breath – your body believes your dreams are real and tends to respond accordingly.

The next segment of the dream paralleled real life: I was lying in my bed trying to get back to sleep before my alarm went off. I was relaxing and drifting… then a wave of paralysis washed over me and I was sinking fast into darkness.

I liken this feeling to a time when I was hospitalized for a bad reaction to a diet pill and was given morphine in my IV to calm my racing heart. I felt the same paralysis wash over me and I couldn’t STAND it. I felt like I had no control of my body and was slipping away fast. How do people get addicted to that stuff, anyway? Who would want to feel so out of control voluntarily?

In the dream I was now falling fast into unconsciousness and I knew deep inside that if I gave in to it I would transition to the non-physical world. I tried to yell, “NO!” and violently shake myself out of it, but no words came. My head was made of cement and my eyelids were unbearably heavy.

I looked at the wall and saw a symbol of a dove appear (similar the kind you see in a Catholic church). I knew this meant death was here to collect me. “NO! Wake up NOW! I want to live!” I desperately tried to reason with my body.

More drifting. Panic. Fear. Fighting to keep my spirit anchored in my physical form… I could feel it stretching and rising and I was not ready. I AM NOT READY. I have so much work to do here. My children would go to into foster care. My dogs would get sent to a kill shelter. No. NO!

I managed to open my eyes and on the wall again briefly appeared a light blue poster that revealed a funny stick person and seven words: Appreciate Life One Day at a Time.

I yelled, “I will. I WILL!” My voice was back. And my alarm was going off.

I felt like Ebenezer Scrooge waking up to reclaim his life on Christmas. Not quite as joyful (yet!), but definitely resigned to looking at the choices I’ve made: the ones that are making me stressed, angry, and feeling hopeless these days.

“But this is an Autism Blog… how does this help me with my child?”

I learn from my beautiful boy every day. Perhaps two of the biggest lessons I keeping forgetting are these:

He lives in the NOW

He is wired for his own happiness

Due to my myriad freelance jobs we don’t currently have days off or vacation time, but he is happy. He Skypes with children all over the world. He sings, hums and laughs all day long. When he feels a surge of energy he gets up and runs around. When he feels mellow he shuts down his computer and draws. When he wants connection he hugs me and tells me he loves me. When he is hungry, he eats.

He does not compare himself to other children or worry about what people think of him. If someone is mistreating him, he simply chooses not to be around them. He doesn’t have a committee in his head that debates and struggles between letting someone down, putting himself last and building resentment because of it, and getting his needs met. He seeks pleasure and avoids pain. He is true to his gifts and strengths and accepts his shortcomings but doesn’t give up on improving them.

Was this experience this morning a wake up call for me to start living in the now? Stop putting myself last? Stop feeling so damned depressed (the holidays are the hardest for me every year)? Get more serious about my training work in the Autism community so I can be more fulfilled and present for my children? Make room for and attract friends and a support network?

What do you think? Was it real or just a dream? Either way, there was a message in it. Have you had any experience like this? I’d love to hear your thoughts or personal stories! Share by commenting below, on the SOA Facebook page, or by privately dropping me a line.

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