When choosing holiday decorations stay away from stimulating colors such as reds, oranges, and yellows. When everything else in the world is stimulating and overwhelming you will want to be able to go home to a sensory-friendly safe zone. Blues, deep purples, creams, greys, dusty pinks, and other soothing colors are good choices to help reduce stimulation for Autistics during the holiday season.
In the movie A Nightmare on Elm Street, Wes Craven chose red and green for Freddy Krueger’s sweater because he had read in Scientific American that red and green are difficult for humans to perceive at the same time. This is due to green being a calming color and red being a stimulating color. Wes Craven used this to his advantage by dressing Mr. Krueger in his signature red and green sweater in order to induce discomfort in audiences so it enhanced the perception of anxiety and fear when Freddy Kreuger was on screen. You may be asking what the heck does that have to do with the holiday season, right? Well, the two colors that are associated with winter holidays the most are red and green. When we are exposed to these colors, whether or not it is in a horror movie, we still have a difficult time processing green, a calming color, and red, a stimulating color, at the same time and it increases our anxiety and discomfort during the holiday season. To help diminish the anxiety associated with the holidays ban red and green combinations from your holiday decorations at home. This also goes for other stimulating/calming color combinations such as red and blue, yellow and blue, orange and green, yellow and green, and other similar conflicting color combinations. Mix relaxing colors with each other such as grey and dusty blue or choose monochromatic decorations in a calming color.
Skip the metallics! We all love tinsel and glitter. We love the mirrors under candles and the sparkling table runners. Unfortunately, our nervous systems think otherwise. Shiny metallic decorations can increase stimulation, as do mirror ornaments, and other reflective decorations. The sensory experience they provide and the light they reflect can be disorienting and lead to overstimulation and rumbling. We may not even realize that may be the culprit of our stressed-out mood. Try skipping the shiny stuff in your holiday home decorating and you may see your anxiety go down.
Be super picky about the lights you choose to use on your tree or windows! Forget about the super bright LED’s. No Autistic needs bright blue/white light keeping them up all winter long. That defeats the purpose of winter! Instead, stay with lights that complement your calmer decoration colors. Once again you will want to stay away from contrasting colors so if you have a green tree shy away from red lights. However, oddly, red lights in and of themselves are not stimulating. It’s actually quite the opposite. Red lights won’t stimulate the brain at night and disrupt sleep patterns. Red lights are a good choice for around windows where light may shine into a bedroom window possibly keeping people awake. Good colors for trees are golden, clear, blue, and green lights all the same color or even intermixed with purple, orb style lights that give the tree more of a glow are also a good choice. Multicolor lights can add to increased stimulation when mixed with the colors of other ornaments and it may be wise to avoid them. Also, consider forgoing chasing or dancing lights.
Don’t stress about decorating your entire house. The point of decorating is for you to celebrate as you see appropriate. If all you want is a tree with clear lights then by all means just have a tree with clear lights! If all you desire to put up for the holidays is a wreath on your front door and nothing more then go for it! The point is to lessen your meltdown potential during the holiday season by making it a sensory-friendly haven for you. It’s all up to you and what your unique Autistic nervous system can handle.
Waves have gone through the Autistic community this week as electric shock of disabled adults, and more appallingly, children has been deemed legal by a US appeals court. Here’s a bit of backstory. Recently, in the US, the FDA (Food and Drug Administration) had banned the use of a device called the Graduated Electronic Decelerator (GED) that is commonly used at the Judge Rotenburg Educational Center on Autistics of all ages to shock them into obedience. This week the ban was overturned in court and lifted. The use of this dreadful device is continuing at Rotenberg in Canton, Massachusetts.
Now while I am tempted to go on a rant on “How in the world is shocking someone considered education?”, I am resisting, for now. Before I get to that I’m addressing some misnomers that are going around about the use of electricity and it’s validity in medicine. Let’s start with the good stuff that can be done with electricity in medicine!
Electricity sounds scary as a medical treatment however it does have some useful applications. I’ve seen a few that are mislabeling the GED as Electroconvulsive Therapy (ECT) but it’s not. ECT is a powerful emergency or last resort type of treatment for those with severe and untreatable depression and it has up to a 90% success rate. I know a small handful of people that have had ECT. They are forever grateful for their ECT treatment and how it relieved them from their debilitating depression. ECT is done with a patient’s consent under a doctor’s supervision.
The patient is sedated with general anesthesia and given muscle relaxers to prevent convulsions, their vital signs are monitored during the procedure. An electric current is applied to the patient’s temples via electrode until the doctor sees the patient’s fingers and toes twitch. This let’s the doctor know the treatment is now complete. While no one knows exactly how ECT works, it works! Theories from changing the polarization of the brain to the stimulation of neurotransmitters exist but no one has pinned down what goes on in the brain during the procedure that alleviates depression. ECT has saved lives and, when performed under general anesthesia, is a humane and effective treatment.
Another application of electricity in medicine is the defibrillator. The Automated External Defibrillator (AED) can be found in many public places like malls and in airports. The AED is an emergency tool that is used in the event that someone is experiencing sudden cardiac arrest.
The AED electrodes are applied to the chest and can diagnose and treat or prompt the user to treat the heart by administering an electric shock to the heart to get it beating probably again. The AED is a modern miracle and has saved lives. It can be used by both the average person and trained professional to stabilize a situation until help arrives or until they can get the patient to the hospital. The AED is another application of electricity that is relevant in medicine.
I do acknowledge that these two treatments are while people are unconscious and if I am to continue on to make my point I need to have some experience in the matter. Do I have any experience in medicinal use of electricity? Why, yes, I do! I have been fully conscious while given a shock and it wasn’t pleasant. Thankfully it wasn’t an emergency or a GED that I experienced! Instead it was a test that read my nerves to diagnose Peripheral Neuropathy called an Electromyography (EMG).
During the Electromyography my doctor placed an electrode in the form of a needle into my upper calf then he shocked my foot. The needle would read the shock as it traveled up my leg and tell the doctor how much of the electricity was making it through my nerves. The doctor said it would be a little sting or pinch or other inadequate saying they use to not tell you it’s really going to hurt. The shock hurt my toes, my foot, and made all the muscles in my leg jump. It was extremely unpleasant and my leg was sore for that day.
The sensation was stronger than the one you get when you scuff your feet on the carpet and then touch the door knob. It was stronger than the static in the blanket. Yet, I have a feeling that the medically sound shock to my foot wasn’t as strong as the aversive called the GED that is being used to torture disabled people into submission in school. They say it feels like a bee sting, have you ever been stung by a bee? It is painful!
I’d like to point out that Rotenberg is not a medical establishment as it claims to be a “school” and a place of “education”. It’s the only school in the United States to use shock treatment on disabled adults and children alike. The GED is worn by the victim while the control for the device remains in possession of the “teacher”. When the so-called “student” does something that the teacher disapproves of, the teacher then shocks the pupil until the pupil complies with the demand. These demands are as petty as not taking your coat off within an acceptable amount of time which is decided on by said teacher. Students are even shocked for crying because they were shocked. Self-stimulatory Behavior, which enables Autistics to produce necessary neurotransmitters to process the environment and release anxiety in the body, is punished by shock. This is not medicine, this is not education. It’s senseless abuse and it should be considered cruel and unusual punishment. The GED needs to be recognized as such under the Constitution.
There is no medical or educational application for the GED when there are more humane ways to help someone that is disabled. Care, Patience, Time, Repetition, Respect, and many other methods exist to teach. The GED does not teach nor treat, the GED scares people making them live in fear of doing the most human thing of all and that is making mistakes. No one should be punished for that.
Almost two years ago, before the pandemic, I started this blog and the accompanying Twitter account. One of my projects I said I was going to do was to review apps that I found to be helpful as far as Autism goes. I have finally found one worthy enough to write about! It was a long, arduous journey but I think this is worth it.
Now, I don’t know about you, but I have the hardest time falling asleep. I go over every interaction that I had during the day and then my mind goes 200 mph as soon as I lay down. But of course it does! I have no stimulation to hinder my thoughts as they come cascading out of every wrinkle in my brain. I have tried many sleep apps to help calm the storm so to speak. I’ve tried white noise, ambient noise, binaural beats, ASMR… All of it, I have done. None of it really worked.
However, earlier this year I stumbled across an app called Loóna that you use before you fall asleep. It has what they call Sleepscapes and they can be very relaxing. How does this work? Loóna is an interactive app designed with the intent of helping you disengage from the day and relax and the Sleepscapes it takes you through are wonderful bedtime stories. The tales they weave are calming, they bring you back to those childhood days when someone read to you and you felt content. For me those days were the days I was with my grandparents or during quiet time in elementary school.
The best way I have found to use Loóna is about 45 minutes before bedtime to get ready for bed. Make sure to brush your teeth and use the bathroom so you don’t have to get back up. Turn off all distractions and mute notifications on your phone. Get everything together you need to be comfy. Pillows, blanket, teddy bear and whatever else you sleep with. Perhaps make a cup of warm milk (there is a “how to” at the end of this article) or tea to sip while you’re doing your Sleepscape. (I love Sleepytime tea with Valerian Root in it. It’s a great choice as well as affordable.) Get your headphones and then get in bed and get settled in.
Loóna has a new Sleepscape every night. Calming music plays as you listen to the calm voice tell the story as it gives you items to tap on. As you tap on the beautifully done pictures they come to life with colors you choose at the beginning of the app. I chose pinks, purples, and blues. The interaction with the picture is just as important as listening to the story. It helps immerse you by combining physical repetitive actions, occupying your mind, and lulls you into relaxation with the rotation of the floating landscape.
When you’ve completed the Sleepscape you can do another Sleepscape (up to three, the new one and two from the menu, before it warns you of screentime) or you can listen to one of Loóna’s Immersive Stories that accompany the Sleepscape. Immersive Stories are unlocked at the end of some Sleepscapes. An Immersive Story is a story without the Sleepscape’s visual and physical activity. You just turn out the lights and listen as you drift off.
If you prefer music to drift off to, Loóna also has playlists of calming music to doze to. Loóna also has the option to turn off the audio bedtime story for those who need quiet to relax or just prefer to read. You can easily keep up with the story being told by reading it’s subtitles. For those that have trouble remembering (ex. ADHD) that they have the app on their phone, Loóna has a reminder option that notifies you when the new Sleepscape for the day is available. Last but not least Loóna had inspirational morning messages that include a playlist to listen to in the morning to help you ease into your day in a calmer state of mind. Bonus! Loóna is also a great way to calm down throughout the day as well.
Loóna does have a hefty for an app subscription price at 12.99 a month (cancel anytime). It’s more economical to pay for the year at 39.99 which, in my opinion, would be worth it. It does have a trial, as most apps do, in case you want to try it free for a week. I used the trial and purchased one month to try it out for an extended period of time before I reviewed this app. I suggest, if you have a spare $13, that you try it out for the 30 day trial. Everyone is different and it may not be for you but you may be pleasantly surprised!
Vanilla Milk Sugar or other sweetener Microwave or saucepan Coffee cup
Heat the desired amount of milk (or if you’re a Vegetarian or Vegan your favorite unsweetened plant based milk would work too) in the microwave for a minute and check the temperature. If it’s not warm enough then microwave it in 30 second intervals until the desired temperature. You can also heat it up over low heat on the stove. Make sure you don’t scald it (burn the milk that is).
When the milk is heated, take it out of the microwave carefully or if you heated it on the stove gently pour it into a cup so it doesn’t splash. Add one cap full of vanilla. If you don’t want the alcohol content then use imitation vanilla. (It’s also cheaper for those who have limited funds.)
Then add one teaspoon of sweetener. I like good old fashioned white sugar but Stevia or another sweetener would do well too.
Stir until the sweetener dissolves (mostly dissolved is good, it doesn’t have to be perfect).
We have all heard of the dreaded meltdown. I’ve written about my own meltdowns and how I view them. Those moments of terror in which we become a force of nature while our nervous system purges all of it’s stored anxiety. For some of us, we have triggers where the anxiety is instantaneous. For others, we have a tipping point in which the anxiety has reached its threshold and the sensory overload meltdown runs its course. However, what if you diverge from your normal pattern of meltdowns?
Usually, my meltdowns are completely sensory-related and I will reach a tipping point, as mentioned above, and out it, all comes out. I have no control over it. (Meltdowns are involuntary for those of you who don’t know.) On a normal meltdown day, I may throw things, say things I don’t mean, punch a wall, hit my head, stomp my feet, and then it’s over. I recover, usually in the shower, and then sleep for hours as my body adjusts to the neurological reset it just experienced. I get up later and get on with my life. However, what do you do when your meltdowns for no apparent reason takes a turn for the worse? A potentially fatal turn?
In the late spring/summer of 2019, my meltdowns did just that. They became a threat to my life. I had hit my head and had so many concussions that landed me in the ER that my insurance company called to make sure I wasn’t being abused. No, I told them, I‘m just Autistic. My meltdowns increased in frequency and intensity. I went from having an inconvenient meltdown once every 6 months or so to having them once a month or shorter intervals. I have a scar on my left wrist where they had to go in and reattach ligaments that were injured during a meltdown. I won’t go into details of the rest because they may be triggering for some. Needless to say, I was actively fearful for my life. I reclused and avoided all stress. Friends that didn’t understand the symptoms of Autism were dismissed because I was too high strung to properly educate them. What was going on with me?
At first, we thought it was my recent weight loss that was throwing off my balance but when it calm down as expected; I recalled that I had read in several blogs, articles, scholarly papers, and more, that an autistic person may have an increase in meltdowns if there is an internal illness that went untreated. Cysts, impacted teeth, IBS, pituitary tumors are just a few to mention. This isn’t only in non-verbal Autistics either! This can happen in Autistics that are considered low support needs as well. When I read this I realized that my nervous system may not actually be trying to kill me but instead, it’s alerting me to something serious, I became an Autie with a mission.
I made appointments with my Neurologist, Primary Care Physician, Psychiatrist, Gynecologist, Audiologist, and all the other specialists I could think of! I have had more MRI’s, CT scans, and X-rays this year than I have had in my life! Not to mention the EEG and the plethora of blood work. I didn’t have any latent STD’s, my pituitary tumor was well under control. I saw something in an old overlooked test result from years back that implied I may have low immunoglobulin’s so I insisted my doctor look into that as well. My routine yearly checkups came around and I put off my mammogram because I had been so overwhelmed with the number of medical demands I had put myself through trying to find answers. I just couldn’t do it because I might risk a meltdown. I rescheduled it for December. A couple of months out.
The prior year, 2019, I felt a lump, thickening, something was wrong in my right breast. After some testing, I was told it was just dense breast tissue so putting off my mammogram seemed a pretty low-risk decision. I went to my mammogram in December and 4 days before Christmas I was told I had two irregular masses in my right breast. The timeline fits perfectly. By the time you feel breast cancer, it’s been in your body for 2-5 years. I can do the math and if my body detected it in 2018 before I did it would have begun to cause major meltdowns in order to warn me. However, I didn’t know how to interpret my meltdowns as a warning of impending medical trouble.
Last week I went in for a biopsy and it was confirmed that I have invasive breast cancer. Even since my mammogram in December of 2020, it has grown. Soon I will be meeting with an Oncologist to discuss surgical options. While I’m terrified I’m also thankful. Hopefully, with treatment and healing, my meltdowns will subside and I can live peacefully again!
Meltdowns aren’t always sensory-based, for me, they are rarely emotional so when I was confronted with meltdowns that seemingly had no explanation it was terrifying. I’m glad I have found the answer within as to why my meltdowns were so out of control and I hope beyond hope that this may be an insight for someone like me going through the same thing.
Most would agree that the Autistic Meltdown is the most notorious symptom related to Autism. An Autistic Meltdown is when the Autistic Nervous System reacts to being overwhelmed by environmental stimulation. These can range from external reasons (such as bright light) to internal ones (such as panic when plans change abruptly). Often this reaction manifests in an apparent display of intense feelings. Passion, Rage, or Overly Silly and Giggly. Meltdowns manifest in many ways. Which makes sense because humans overall are creatures with feelings and our emotions lead to their display. As with NeuroTypicals, the NeuroDivergent comes in a plethora of variations.
When Melting Down the Autistic Nervous System is being overstimulated and is interpreting that overstimulation as pain. It will do whatever it can in order to stop that pain. This is where Extreme Stimming comes into play.
During an intense Autistic Meltdown, Autistics both young, old, male, and female may engage in Extreme Stims commonly referred to as Self Injurious Behavior (SIB). I prefer the term Extreme Stim because the stimming isn’t intended to cause injury or harm. It’s meant to flip the figurative kill switch and bring you out of fight or flight mode. When Melting Down the Autistic Nervous System is being overstimulated and is interpreting that overstimulation as pain. It will do whatever it can in order to stop that pain. This is where Extreme Stimming comes into play.
I’ll explain but first I’m going to explain it to you in a smaller, more understandable, and way more relatable, way. I’ll use baseball as a life reference.
Baseball in and of itself is a painful experience and I’m pretty sure most people were unreasonably forced to play baseball (or some form of sports that included a ball in school). When you or someone else was hit by the ball either you’d instinctively rub the area or your gym teacher or another kid would tell you to rub the injury and rubbing where the ball hit would surprisingly help the pain even though it makes no sense at all, or does it?
In a nutshell when you get hit by a ball the signal that you were hit by the ball travels up the nervous system to your brain. The brain sends signals back and produces pain. When you gently stimulate the injury by rubbing, shaking, or “walking it off” it sends a signal up the same nerves and interrupts the nervous system process and signals from the pain and this helps make it feel better.
The same thing goes for the nervous system pain during an Autistic Meltdown. As I said before during a Meltdown the Autistic Nervous System interprets overstimulation as pain and reacted as though it’s on fire. It panics and senses impending doom. (I’m not being overly dramatic this is how an Autistic Meltdown feels psychologically and you can’t control it at will, you just go along with it because you have no choice!) In response, the nervous system does the only universally wide instinctive thing that we all share. It seeks out and applies stimulation that will stop that pain. Since the nervous system is on fire and in panic it seeks out stimuli that are more extreme than the environmental assault the Autistic Person is going through. Head hitting, screaming, rocking, head banging, pulling hair, stabbing oneself, etc. are all ways that this can be done. These extreme stims help calm the nervous system by stopping the pain with alternative simulation very much like rubbing an injury.
Extreme Stims also provide enough stimulation that activates the Endorphin System which is the body’s natural pain killer. There are many studies on Endorphins and Autism including evidence that Autistic’s naturally have Endorphin Deficiencies. Which would explain why our nervous systems panic in the first place! That’s for another article though.
If you, or someone you know, experience Extreme Stims that are dangerous, potentially dangerous, or life-threatening you can learn replacement activities that will produce the same neurological reaction when applied when you are still in the rumbling stage and still maintain control over yourself. Replacement Stims may or may not prevent or lessen a Meltdown overall. If you have the opportunity please consult an Occupational Therapist or other Expert in Sensory Input.
You will want to focus on things that get your endorphins flowing. I have had luck with running and sprinting. (If you do take your stimming outdoors make sure you take a sedative that will calm you but not put you to sleep just in case you do sense a loss of control approaching while out but it’s even better if you have someone with you. I suggest both. These are precautions in case you encounter negative attention.) Throwing soft objects. Rocking. Pounding my legs with my fists (up to hard enough to bruise but not so hard as to cause swelling). Vigorously shaking my hands. Pacing. Sex. Jumping and coming down with force. Slapping a firm surface with an open palm. Applying pressure to my temporal nerve until uncomfortable. Hot shower. Basically, anything that may overwhelm the environmental overstimulation and produce Endorphins with little to no injury is the best. If you can match it up with the type of sensory input you crave, even better! Do this from the beginning of rumbling and throughout the Meltdown. I wish you luck!