image courtesy of interacting with autism

Managing Autism Meltdowns Before They Escalate

image courtesy of interacting with autism

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!

Justin Stim

Autism Tips for Emergency Responders: It’s Not Altered Mental Status

Justin StimI’m going to be boldly honest right now about how things are for us sometimes, because I believe it can help responders understand more about interacting with autistic individuals.

This is my son…

…Flapping his hands and banging his head because emergency vehicles passed by with lights and sirens, which also set off the neighborhood dogs

…Acting out more than usual because I recently went from a predictable day job to working 13-14 hour night shifts twice a week. Sometimes I sleep during the day on my off days and sometimes I keep “normal” hours. Our whole world has been turned upside down.

…Sporting wild and unkempt hair because haircuts are extremely painful and autism + puberty makes personal hygiene a daily battle

…Wearing no shoes outside in the middle of the winter because he doesn’t feel temperatures or pain the way we do (not for long periods of time, I assure you!)

…Donning sweatpants and a loose shirt that has been stretched and has holes in it from a new stimming habit (biting, stretching and poking holes in his clothing while wearing it when he feels anxious or stressed)

Getting closer to him reveals an odoriferous cocktail of 13 year-old boy… scents, occasionally worse due to severe GI issues and a history of bowel obstructions that make him terrified to go to the bathroom until his body forces it out.

If he were with a sitter while I was on shift, or if his older sister called 911 because he was “acting out” or “not acting right,” what would you think if you approached my son on scene based on the things I mentioned above?

A 5’9”, 220 pound THIRTEEN year-old male, outside with no shoes or winter clothes on, flapping his arms, banging his head with his hands, refusing eye contact and answering all questions with unintelligible verbal noises and repetitive phrases such as “Cheeseburger…”

Altered mental status protocol? Get the restraints ready? Probably.

My son would never intentionally hurt anyone, but if he were already in a distressed state and was suddenly surrounded by strangers with radios blaring who were starting to get frustrated and louder because he doesn’t seem to be cooperating the way they feel he should… he would most likely fight those trying to control him.

We must recognize that autism is not actually “altered mental status” because it’s not a mental illness.

It’s not a behavior problem or an excuse for noncompliance.

The CDC says it’s a complex developmental disorder and the National Autism Association says it’s a bio-neurological disability. And with 1 in 64 boys in Georgia diagnosed with autism, the likelihood that you’ll encounter it in the field increases each day.

The behaviors I described above can – on some days – be normal baseline behavior for my son. He stims and hits himself when he’s overwhelmed. He won’t shower unless I make him (or is that just a boy thing?). He won’t voluntarily use the bathroom unless I help him.

Does the knowledge that he has autism mean we as responders shouldn’t keep ourselves safe? Should we forget the restraints and be more “understanding” of his actions?

If you’ve been following my work long enough, you know I NEVER advocate ignoring your protocols or putting yourself in harm’s way. Keep yourself safe always!

But when all else checks out (blood sugar is normal, negative for narcotics or alcohol, no trauma, infection, seizure or stroke…) we’re left scratching our heads and treating someone like my son as a combative psych patient.

What kinds of questions and actions would help, assuming our safety has been established?

Of course we want to know about allergies and medical history, especially since autism often presents with numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, sensory integration dysfunction, sleeping disorders, and more.

But knowing some common signs and behaviors of autism can give you more tools and knowledge for your assessment. A different set of questions can yield very different results (and gain cooperation from the patient!). Questions for the caregiver such as:

  • Is this normal behavior for him?
  • I see him holding his ears. What sensory issues affect him the most? (Does he hear things louder than normal, do lights bother him, etc.)
  • How does he typically (and best) communicate?
  • Can we move him to a quiet area to self-calm and have 1-2 personnel only question him?
  • Can his caregiver or trusted family member stay with him to help keep him calm?
  • What helps when meltdowns occur?
  • How long do they last?
  • Is there an attachment item that would help him feel better?
  • Have there been recent changes to routines and schedules that might be causing this behavior?
  • There may be no allergies, but what about food or drug sensitivities?
  • Could he have ingested a non-food item (PICA syndrome – chalk, paint, etc.)

If there is no caregiver, try giving the person a pen and paper to write their needs or chief complaint. Even completely verbal adults with autism will quickly lose the ability to speak during meltdowns.

Also look for alternative IDs and smartphone apps that can provide critical information fast.

One of the biggest challenges we may face is when there is no diagnosis and the caregiver may not even suspect autism. That’s why I teach emergency responders how to recognize signs and behaviors of autism whether or not the patient or caregiver provides that information. Sometimes just understanding what’s going on – even if we can’t change our actions – can make a world of difference for the person experiencing distress.

Tantrum vs meltdown

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

Tantrum vs meltdownHey, 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.

spirit of autism holiday stress

Holidays and Autism: Help Your Child Stress Less

spirit of autism holiday stressChristmas 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!

Mario Emotional Stage Index Cards

Using Emotional Stage Index Cards for Sensory Processing Issues

Mario Emotional Stage Index CardsWhen 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!

Spirit of Autism Puberty

Puberty, Autism and Emotional Shutdowns

Spirit of Autism Puberty“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:

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

Why Do They Stim?

Spirit of autism stimAs a caregiver, educator, or even parent of a child with Autism, you’re most likely accustomed to witnessing some repetitive behaviors on a regular basis that seem odd… and even make you feel a little uncomfortable.

Whether or not you are familiar with the term “stimming” (short for “self-stimulation”), you’ve probably seen it in the form of hand or arm flapping, spinning, rocking back and forth, or self-injurious versions like hitting or biting oneself.

Stimming can also be verbal. It’s not uncommon to hear repetitive squealing, screaming, or sound effects coming from a child with Autism. In fact, one of my son’s favorite noises can be heard here (speakers DOWN, trust me!)   The neighbors have actually called the police in response to hearing that one on a summer day when his bedroom windows happened to be open. They thought he was in a life-threatening situation!

Yes, some days my son’s stimming can be enough to turn my hair grey. But then I think, if it’s this hard for me to deal with his noises and repetitive behaviors… what is HE going through? How hard is it for HIM to deal with his environment?

Why do they stim?

One of the biggest reasons is to counteract an overwhelming sensory environment. 

We don’t just have five senses, like we were taught in school. We actually receive sensory input through sights, sounds, touch, tastes, smells, movement and balance, body position and muscle control.

Difficulty interpreting the input leads to devastating consequences with:

  • Interactions with others
  • Daily functioning
  • Behavior
  • Regulating emotions
  • Learning
  • Social relationships

Stimming is a way to retreat and relieve the pain and overwhelm of your surroundings.

It also alleviates high levels of anxiety felt daily. If you had to spend most of your energy trying to process and block out painful noises, lights, smells, and textures how much focus would you have left for daily tasks, learning and growth?

Stimming helps to refocus and realign. The ability to create order and routine from the chaos of your surroundings is sometimes as easy as spinning in an office chair or rocking back and forth.

It’s soothing. I always found it strange that my son hears things ten times louder than I do and noises like the school bell are painful, yet when he screams or squeals it somehow calms him. But it’s true. Many adults with Autism have told me the same – it feels good.

It’s like a steam pressure valve. What happens when a valve stays closed and the pressure builds up with no release? Yup! Nuclear meltdown…

One of the biggest points I like to make when I train Emergency Responders – who certainly can mistake stimming for drug use, mental illness or non-compliance – is that they should NEVER try to stop someone from stimming unless they are hurting themselves or others.

Imagine telling a blind person not to put their arms out to find their way around a room, just because it looked “weird” or made us uncomfortable. That’s how I view stimming – it’s necessary for my son to function at this time. Now that I’m able to better understand his experience, I’m not nearly as stressed by it – but we DO work on redirection and (sometimes) going to a designated place to stim freely. It helps him identify with his own body’s needs, which ultimately gives him more confidence and self awareness.

When you think about it – how many of you bite your nails, tap your foot, drum with a pen, scratch or even pick at things when you’re stressed? I know I do some of those! Isn’t that a form of stimming? Yeah, we all kinda stim in our own way, don’t we?

Do you struggle with your child or student’s stimming behaviors? Share by commenting below or posting on the SOA Facebook page!

Spirit of Autism Halloween Safety

Halloween Safety Tips for Your Child with Autism

Halloween can be a pretty overwhelming for a child with autism. Heck, it’s overwhelming for ME – add to the mix sensory-aggravating costumes, spooky lights and decorations, crowds of loud children on the streets, and possible sugar and chemical dye sensitivities from loads of candy… and you may have created the perfect recipe of a meltdown.

Here are some tips for a safe and enjoyable Halloween for your child with autism:

 

Costumes

Let your child practice wearing their costume at home for at least a week in advance. This gives you time to make any last minute modifications and time for your child to get used to it. I wish I had a nickel for all the times it took me to learn this one.

 

Avoid costumes with masks or hats that restrict sight or movement. It may be worth it to start with an item of your child’s own clothing or a Halloween t-shirt. Also avoid costumes that require extra accessories – your child will not want to carry them for long and they also may contribute to tripping or other safety hazards. Trust me on this one.

 

Last year we did a simple pair of baggy overalls and my son’s red shirt with a pre-bought Mario hat and white gloves. Easy, comfortable and everyone recognized his character!

 

This year my son is (possibly) bold enough to try a box on his head to be a character from Minecraft. With large eyeholes, this is mom-approved, as we can easily fill in the rest of the costume with a solid colored sweatshirt and matching sweatpants.

 

Trick-or-Treating

Be aware of which homes in your neighborhood have displays with lots of gore and special effects (our house… oops!) so you can avoid them.

 

Use repeated social stories for safety tips about crossing the street. In addition, carry glow sticks and a flashlight if you are going out in the dark.

 

If your child is nonverbal, make sure he or she wears some type of obvious identification. We love QR Code ID – which is printed right on the child’s clothing! My son will not keep a bracelet, ID tag, or watch on long enough for it to do its job.

Also, I have been seeing this wonderful picture circulating around my social media networks – what a great idea:

Create a visual schedule that includes a map of where you will go. It’s also a great idea to practice trick-or-treating at home the week before Halloween: take turns answering the door to give out the candy and being the trick-or-treater.

 

Don’t try to hit every single house in your neighborhood. Keep trick or treating short and comfortable for your child. Consider letting siblings that might want to go longer go trick-or-treating with a friend.

 

The Swag

Make a plan for how you will handle candy consumption. A gluten or dairy intolerance may be an issue with Halloween treats, as are food dyes and extra sugar. Decide the candy-eating rules in advance and write them down.

 

For those that avoid animal products in general, here is the The 2013 VegNews Guide to Vegan Candy (hot off the press!).

 

After Halloween, don’t relax your safety routines! Watch the doors and windows extra closely. I’ve heard from other parents that their child continued to trick-or-treat on their own the next day or following week.

 

I hope these tips help you have a safe and fun Halloween! What tips and routines do you use in your house for trick-or-treating? Share by commenting below!

autism potty training

Autism, Sensory Processing Issues and Potty Regression

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!

autistic child disrespectful

Why is My Child So Disrespectful?

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!