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.
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!
I apologize for taking so long to get this second part out about the Sensory rooms! I have been valiantly battling a horrid Kidney Infection. Illness can have a greater effect on Autistic’s because the sensory stimulation from pain, fever, etc. and it can overwhelm the system and make them less like themselves than if, for example, a Neurotypical had the same level of illness. In an eggshell, a scratch can feel like a gaping wound. That is not what this article is about though!
This is the second article on Adult Sensory rooms! Last time we talked about picking colors that were soothing to our particular nervous systems needs. No two people are alike and therefore no two Autistics are alike. As a result, all of us are in different living arrangements. Some of you live with family, some of us rent, some of us own our own home.
If you are blessed to own your own home and you have a spare room or area to turn into a sensory area you are lucky! You don’t need your appeal for accommodation to be met or approved by anyone but yourself and/or your spouse. For the rest of us, we have Parents and Landlords to respect. If you live with parents, or other family members, sit down and speak to them about what is available as a sensory area. As for this article, I am focusing on what to do if you are renting an apartment because my husband and I live in an apartment.
Since my husband and I live in an apartment we can’t do much as far as changing the structure of a room without physical needs such as a wheelchair but we can do plenty as far as changing the aesthetic of the room to create a relaxing sensory room or a place to de-escalate a meltdown. In order to do this, we need to ask the landlord for some Reasonable Disability Accommodations/Modifications.
List everything you need to do to make your area more accommodating because it all needs to go in a letter!
The first thing we need to do is decide what we need to do to make the area calming and make a list. Keep in mind these are requests to do these and cover them out of your own pocket of they are modifications and accommodations are at the expense of the landlord from what I understand. Do you want a different paint than what came with the apartment so it’s more soothing? My husband and I would like to do the area in Greys. Would you like to have a light fixture switched from a florescent bulb to a LED so you don’t get a headache? (The landlord should cover an expense like this but if he doesn’t make sure you can cover the cost of an electrician and/or fixture in case they won’t cover it or let you have maintenance help you switch it out.) Do you need to have noise restrictions loosened in case of a meltdown so a complaint doesn’t get you kicked out? Put that on the list too! If you desire a different mode of communication aside from speaking on the phone or in-person then that should be included as well. List everything you need to do to make your area more accommodating because it all needs to go in a letter! It’s easier to make a list to take with you to write a letter than going back and forth and trying to remember what you need. This way you don’t miss anything.
Now from what I understand requests don’t need to be in letter form and can be made and granted in person with an oral agreement. However, life has taught me that paper trails are an Autistics best friend. It is always good to get things in writing to protect yourself in the future. If for some reason problems arise you need to be able to defend yourself. Having a letter of request and a letter granting the request is a good way to do this. (First, call your housing management and ask if they have specific forms they would prefer you to use before writing a letter so you don’t run into frustration having to backtrack and do it over with their forms.) You can send this by email if it’s to an official email address that is linked to the Apartments Management if that is not an option make sure you send it certified snail mail with a signature request so you can prove they received it. Anything in which you can prove that you sent it will work. (If you have official forms from your Landlord then copy those before and after you fill them out. Before so in case you mess up you have spares, after so you have a record.)
It’s understandable that you may not want to disclose that your Autistic to your Landlord due to the risk of discrimination so you may want to use an umbrella term to describe your accommodation needs. When I spoke to the property management company that owns my building I used the term Neurological Condition and Sensory Processing Disorder. You may also use the term Asperger’s is you so choose. Asperger’s is trendy and, sadly, it may be more accepted than straight-up Autism. I understand that Asperger’s has controversial origins and I agree with filtering the term out of Autism discourse however this isn’t the time to make an issue of that. You will have plenty of time to educate everyone once you have gotten to know them better. We are focusing on requesting accommodations in a way that you feel safe and secure. (Keep in mind if you do say Autistic then you are still covered against discrimination but this is about your sense of well being.)
I wrote a Sample Accommodation/Modification Request Letter however there are probably far better examples on the internet than I am able to provide, please, feel free to look them up. You may want to request in the letter that they respond in writing as well whether an email or a return letter in the mail.
When you have written your letter print two, one for your records, and the other to take it into your Doctor or other Health Care Professional and ask them to write a letter confirming and verifying your request. This is your letter of support that you will be turning into your landlord with your letter or request forms. Your medical professionals do not need to disclose any medical information that is not part of the request so, if you need to paint in a calming color that isn’t as bright to your eyes as white, that is what they need to focus on. What they do not need is information about things that do not pertain to the request. So if you are, for example, HIV positive or Diabetic the Management doesn’t need to be informed if your requests do not to pertain to these conditions. HIPPA does matter! Your privacy matters.
Make a certified copy of the Doctor’s letter (a notary public can do this, many banks have them for free) or have him write two copies so you have a copy for your own records with his signature (it’s always good to have backups). If you are mailing it then put the letter/forms, signed with a pen, put it, and a copy (duplicate or notarized copy) of your Doctor’s letter in a business-size envelope. Fill it out like your normally would and take it to the Post Office. Tell them you need to send it Certified Mail with a Signature on Delivery. Keep any receipts as proof and so you can track it.
If you are sending an email then scan the letter or forms into your computer. (I do not doubt you know this however sometimes I get overwhelmed to the point I do not think of the trees in the forest and I just see the problem. I am simplifying for ease for those that read this in a time of high stress and require a higher level of support.) Write your request letter in the email. Attach the scan of the Doctor’s Letter. Send. Make sure you don’t delete your sent mail so you can prove that you did in fact send it.
Keep in mind you shouldn’t start on any accommodations or modifications until you have the go-ahead from your Landlord. If in a letter or email save it for your records. In case there is reason to believe that the Landlord will contact you by phone to grant permission or deny your request then put a call recorder app on your phone if it doesn’t come with one pre-loaded. That way you still have proof of permission or denial. As I said I’m a big fan of evidence trails!
*If you do not live in the United States such as a US territory or another country then check with the local authority on regulations for disabled renters.
Like all Autistics, I have never fit in. Ever. I can fake it pretty well but something is missing that prevents me from bonding with others. A few hangouts or dates and they usually bail leaving me in the wake of “What the hell did I do this time?” I knew it wasn’t me as I always intended the best for everyone, I tried so hard to click. It never worked with females (the term was chosen because it doesn’t denote solely those assigned female at birth) but I was better at being friends with males. Which, as a married woman, complicates things. So I just remain lonely and for the most part friendless.
I have separate Medical/Psych records that note my lack of eye contact, reduced facial expression, and several other Autistic tells that no one was able to hear. If Autism Speaks why then did no one hear it for 37 or so years. Simply it’s due to people not wanting to hear it. I even walked 2 miles to the ER to try to get help for what I assumed was PTSD and was told that I was the problem. I have some strong words for that but I’ll not mention them. I tried to tell them that I was about to have an episode in which I would not be able to prevent myself from hitting my head. Still. Nothing.
In 2017 I joined forces with my Husband and his Nephew who was itching to start an online Church. We were sick of the crap that was getting pumped out into the World after Trump was crowned King and we decided to fight the good fight. I was chosen as the face because, well, I’m attractive compared to them I guess. About 4 sermons into the formation of said Congregation I started to have a huge, monumentally huge, panic attack. I had one person watching at the time and I knew who it was. I was prepared. I was safe. Medicated for Anxiety. By all means, I was not in a position to have a panic attack from PTSD. This isn’t my Modus Operandi. I felt sheer dread, I was rumbling and about to Meltdown. The next weekend I couldn’t even turn on the computer. I was experiencing a Shutdown, a term I wouldn’t be familiar with for some time. Something was up that was far beyond anything that could be Therapized out of me and I was certain I knew what was going on. I had realized that I had had Meltdowns before.
That week I told my Therapist what had been going on and asked her something I had suspected since 2010. My nephew is Autistic and I think I’m Autistic as well, what do you think?
Her reply was, “I have noticed some things but if you are you can’t be very Autistic. Just a little bit, if anything. Do you know Sheldon from The Big Bang Theory?”
Me, “Of course that’s my favorite show! I’m not as social as him though. I don’t even have as many friends as he does.”
Therapist, “Exactly, he wouldn’t be either if he was Autistic in real life. He’d never be married or have that many friends.”
My awesomeness, “Do you know who could assess me?!”
I left with Sheldon wouldn’t be as functional and neither would you but she agreed that I should be assessed.
The search for someone to diagnose me was in my hands because it’s incredibly difficult to find someone that will do an adult Dx and I hate talking on the phone, so, naturally! They make it as hard as possible for those whose parents didn’t bother to look into why their kid was weird! The lack of consideration and respect for me as an Autistic was front and center. Thankfully my IQ is high so I was able to find someone in an efficient timeframe. (Anyway, that is what a Psych would tell me.)
I found a place that would take my insurance and assessed adults. It was a Godsend having the entire bill covered through our insurance and I feel so blessed because of that. Seriously, that never happens! But my state passed a law that increased the accessibility of Autism services to those who needed them. So I made an appointment.
(Please note that if I had not been awarded SSI and been put on Medicaid I would not have been able to afford the 850.00 bill for the assessment even with my husband’s insurance. I’m not privileged, I’m disabled.)
It was in the middle of the Christmas season in 2017 that my first half of a 4-hour assessment was scheduled. When we got there I spilled my coffee and felt horrible.
She looked at me and said “Most of the time when someone your age comes in looking for an Autism diagnosis it’s because they have a family member that was diagnosed and/or they have done extensive research themselves and already know that they are Autistic. Tell me why you suspect you are Autistic.”
I let it all out. I walk on my toes! The notes in several medical files that say I can’t make eye contact. The times I have tried again and again to make friends. My laughing at (it was really with but I didn’t know she wasn’t laughing) a friend in pain. I didn’t know she was in pain. To me, it sounded like she was doubled over in laughter. I still cringe over this!
Fun Fact: In the middle of my assessment my Doctor looked at my husband and said that she thinks he needs to be assessed next. A year later he received his Autism Dx!
I relayed to my assessing Psych how I would misread faces. To me, someone suppressing laughter and someone being angry, at times, can look the same. There’s the embarrassment when people walk away mid-sentence or conversation because I took too long to process the information and produce an answer. I was insanely quiet. Always assumed to be shy. (Once you get to know me though you can’t get me to shut up!) The one that took it though was that I didn’t speak until I was four. Four! Again, I ask, how was this missed!
After the first session, I was exhausted. It was Christmas and Christmas is hard on me when it comes to overstimulation. I melted down that night because of the 2 hours of assessment and all the Christmas cheer that was forced onto my nervous system in Walmart. I almost canceled the whole thing out of doubt but I went back for my second session anyway.
I wanted to hide, the coffee stain was still there, I obsessed about it. This time she ran me through a battery of puzzles, simple math equations, memory exercises, and other tests. I found out that if I don’t have to think about the mathematical formulations that I can make an educated guess and guess the solution accurately. I have incredible lingual abilities which were probably learned out of the desperate need to communicate effectively. (It didn’t work. Being more proficient with words just makes people think I’m a snob and know it all. I’m not. I just want to connect.) I was able to logically deduce people’s state of mind even though I can’t intuitively pick up on things. (Ex: Crossed arms means someone is guarded, mad, or cold and I can analyze and extrapolate information from clues. Not always correctly.)
When I came back for the results she told me Autism was exactly what was going on! Oh! I was so happy but I didn’t show it because I don’t show my empathy outwardly as much as Neurotypicals even though I have plenty of empathy for people. I have a great IQ, which is what the second session was about. She explained that the IQ test was simply to rule out any other conditions that may give the appearance of Autism such as an intellectual disability, which I did not have, I was quite intelligent. I am a bit slower at learning but I also retain more information and in the long run can learn things better and more accurately than others therefore can carry out a job more completely and satisfactorily in comparison to my NT peers. (Even if it’s annoyingly accurate because I have problems deviating from what I’m taught and what I’m used to.)
In the end, I was given a Level 1 Autism diagnosis which used to be called Asperger’s. It gave me answers upon answers. Look no one wants to hit their head it’s messed up but I had a reason as to why I hit my head. Why is this?
It was because I was Autistic. I am okay with that.
When creating a Sensory/Meltdown Room for an Adult it may come as a surprise but the first consideration you should make is color choice. During a Sensory Session you don’t want the colors in your room to irritate anxiety or set off a Meltdown. If you also use the room for a safe space for Meltdowns then you don’t want the color combination to make the Meltdown worse. So we are going to go over the bad, good, and great color options for a Sensory/Meltdown Room. Trust me, you want to pick the color options first that way you can build your safe haven from the World around them and make your room a better place to seek refuge in. It will create a cohesive and streamlined room that will assist in maintaining your Autistic Nervous System.
You know you better than I know you or your doctor’s or parents or anyone else. So if this room is for you, you choose the colors that bring you peace and joy. Calming hues and tones that don’t aggravate your sensory sensitivity and shades that put you at ease are best. This is a purely subjective matter so do not let someone tell you what you should pick, you pick what works for you! If you are going to be sharing the room with other Autistics, like I will be sharing mine with my spouse, you need to agree on a base color that you both unanimously find peaceful. I will discuss this more a little later.
In general the worst colors to have and ones to stay away from when planning a Sensory/Meltdown Room are bright colors that stimulate the nervous system in an overwhelming stimulatory way. Colors that are known to excite, arouse, and agitate the nervous system are vibrant and bright Reds, intense and vivid Yellows, Fluorescent colors, brilliant Blues, bright whites, and other colors that would get the heart and blood pumping. This is the exact opposite of what we want to do, what we want to do is to choose colors that bring down blood pressure and put us in a place of relaxation. Even though many “Autism Friendly” rooms and sensory spaces are brightly colored they are designed by Neurotypical people who are judging what they assume Neurotypical children like. This is not the case with Autistics as many of us see colors more vibrantly and sometimes they come off as being way too intense. First we are not NT and second, we are not children. What is good for an NT isn’t always preferred by Autistic people, especially us Adults. If you like these color’s that’s fine, try to keep them outside of your Sensory/Meltdown spaces and even your bedroom. Even if they don’t bother you normally they may be too much to handle during the Autistic Neurological Event commonly known as a Meltdown.
You may also wish to stay away from warm color combinations such as Spice, Golds, Burnt Orange, Coppers, etc. These, while not as stimulating as the colors mentioned above, can be stimulating to the point of being counter productive in your calming goal and again they may be calming to you now but they may not be calming in a full blown meltdown. Keep these colors in the Kitchen or Breakfast Nook where they will be more useful at waking you up in the morning. However, they may be used as accents if you desire to do so. A couple of examples are pairing a Blushing Pink tone with a Darker Grey or a Deep Warm Chocolate Brown with a soft understated blue in order to balance out the warmth of the color.
I did a poll via Survey Monkey, it was a small sample, however it was from the Autistic Community. The top colors that were preferred were Greys and Purples. These colors seem to bring the most calming effect. Followed by Greens, Blues, and a blend of Neutrals, Blues and Greens. The survey also revealed that the majority prefer Monochromatic (meaning the same color) but different tones of the same color. So if you were to pick a Dark Blue Grey then you would also have a light Blue Grey and possibly a Neutral Grey. This technique gives depth throughout the room and can help separate the room into functional stations if that is something you wish to do. I will address this in another article.
As far as a shared Sensory/Meltdown Room goes you will want to collaborate with the people you will be sharing it with. Whether it’s your spouse, kids, or the whole family. Usually I would say to include everyone in the home but this room is specific to Autism so the Autistic’s in the house get to make the decision on the primary base color of the room. My husband and I chose Dark Grey and an assortment of lighter Blue Greys. We are thinking about a deep Charcoal Grey as an accent color mainly because foam cubes are common in that color.
Once you figure out your color palette choose your wall color. Before you paint remember to:
Ask your landlord, if you have one, for disability accommodations due to Autism. Explain to them how you need a certain environment to thrive in and that painting is in both their and your best interest as it will have a positive effect on your medical condition. Have a doctor’s recommendation if you can get one to back your claims.
Remove all curtain rods, nails, screws, etc. from walls except from the outlet covers. Fill in the holes with spackle and sand them until they are flat. You will be painting over them. This will make sense later when we go over the safety proofing part of the Sensory/Meltdown Room segment.
If your executive function is not up to par to do this yourself don’t be afraid to ask someone for help. We are trying to improve our lives in order to live better ones. It’s okay to ask for help to be able to get to that point.
You will want most of your walls painted the same color. If you want to make your room to feel small then paint all four walls in the same color as well as the ceiling. If you desire to make the room feel larger there are painting tricks to do this as well. Here is a link that explains how to paint a room to get the effect you want https://www.thespruce.com/paint-colors-change-feeling-of-a-room-1835371
You do not have to worry about painting on your own right now. I am only bringing this up so you can do a little planning ahead if you so wish. I will be demonstrating what to do when painting and how to do it in a YouTube video in the future. Right now just focus on the color’s that you want. Painting can be a bit pricey and a big job. In order to not become overwhelmed focus on color choices first. If you can, save up for the supplies that you will need. Don’t worry about time limit as you can always watch the video over again.
If you have a room available just for the purpose of a Sensory/Meltdown Room while you’re waiting for the painting tutorial you can clean the room out, wipe down the walls, remove nails, etc. in preparation.
This article was just about paint choice so focus on that first and have fun with it. This is for you!
If you do not have a room set aside for this stay tuned and I will give you tips, tricks, and ideas on how to set aside an area in your house to use specifically for a sensory friendly corner.
Until then go to different home improvement stores and see what is available to you and what kind of paint you can afford. Collect color samples that you might like your room to be and think them over. Choose the ones that bring you the most joy!
Imagine you’re a Bull, a happy, well mannered Bull. One day the Rancher comes out to lead you to a trailer. You don’t know where you are going but he’s the Rancher and you don’t really have a choice so you happily go along. You go to a place you’ve never been before, you’ve heard it called it a Rodeo!
You are placed in a pen by the Rancher and tended to by people you don’t know. You may recognize a face or two but for the most part you’ve never been around these people. Their faces are difficult to make out, you don’t know them. Strange place. Strange people. Then someone comes and puts a band around your midsection, painfully tight, squeezing. It feels as if someone slipped burrs under the fabric. You squirm. It’s extremely uncomfortable. Suddenly. It gets loud!
You can hear cheering! It’s a crowd and the sound is deafening, disorienting. They are laughing and pointing at you. Not long after a Clown appears running around taunting you, laughing in your face. His visage is painted in bright contrasting colors and you can’t tell if he is a good Clown or a bad Clown. You become distressed. What is happening?!
It’s hot and you’re panicking and you try to get away! You try to alert the people near you but they don’t understand. They don’t speak your language and you don’t speak theirs. You try to communicate your needs but fail trying. No one is going to help you! You look around you for an escape. You’re frantic, the tension is building up within! A feeling of impending doom wells up from inside you.
Your fight or flight takes over. It’s all instinct now!
Suddenly, to your horror a man gets on your back and you break. Your fight or flight takes over. It’s all instinct now! You’re terrified!
You try to escape the horror of what is happening to you! You buck and spin to try to stop the onslaught of the painful sensory stimuli. Instead of freeing you and leading you to safety, the man on your back digs spurs into your sides inflicting more discomfort and more suffering. All you want to do is escape! Get away!
Your entire focus now is to flee the area and find relief! Your nervous system takes over and you are no longer in control of your body. You are compelled to react by the force of survival, the need to escape certain death. Against your will you buck, spin, jump, run in a frenzied effort to dislodge the man on your back to escape the dreadful anguish you have find yourself enduring. Against your will you accidentally injure yourself! You didn’t mean to hurt yourself but you did. It hurts but you can’t stop! You have to free yourself! It’s a nightmare that seems to last for eternity…
Except. You aren’t a Bull. You are a Human. An Autistic. You may be a child, adult, male, female, trans, intersex, young, old, middle aged, with high or low support needs. You might be an islander, black, white, middle eastern, or a mix of everything. You might be independent with a job or living with your family. You may even reside in a group home. The “Rancher” isn’t a rancher at all but instead they may be a parent, partner, guardian, friend, cop, teacher. Anyone you know. Anyone you trust.
The “Rodeo” is simply a place where there are people you do not know, do not know very well or trust much. A Doctor’s office, a School field trip to the Zoo, the Dentist, a Mall, the Park or even simply Work. It may even be your own home and people are visiting unexpectedly or maintenance is working in your apartment.
You started out the day okay enough yet something’s off. Your clothes get tight, uncomfortably snug almost painful. The feeling of them is tight and you squirm attempting to relieve some of the pressure. You’re burning. Hot. You want to remove your clothes but it’s not acceptable to do that here and now. Somehow a pebble got into your shoe and you can’t do anything about it. The pebble digs in and rubs your skin raw. That’s all you can focus on. The pebble keeps getting bigger and bigger. Your foot aches, then your leg. Then, suddenly it’s loud, you hear everything!
The buzz of the electricity overhead. No, it’s all around you! The chorus of human voices surrounding you. A roar of incoherent voices in a never ending clamor. The clinking of metal, pens writing, humans scratching, sniffling noses, the gurgling drinking fountain. Someone laughing loudly. Too loudly. Were they laughing at you? You can’t tell. Is that man furiously mad at someone or is he exuberantly happy, why? Is the woman at the desk upset? Is she frowning at you? Your own heartbeat and breathing sound thunderous. It’s all so disorienting and you don’t know exactly where you are in location to an exit. You don’t know how to leave or if you can leave!
You hear some people singing Happy Birthday and then applause. Someone points at you, smiling. He’s saying something but you can’t focus. You become distressed. You try to explain what’s going on but he doesn’t understand what you are trying to tell him. You clamor for his attention again to ask for help but you can’t comprehend what he’s saying. He holds out… what? Cake?! You can’t put an answer together. You panic! No one understands what is about to happen. A wild energy rises up internally. A build up of anxiety in a reaction to the situation around you. It all is about to come out!
You try to get out but you can’t. You are met with obstacles, people, chairs. Lights get bright, blinding you! Like a bat trying to escape a noisy room the assault on your auditory throws your balance off. You bump into things. Your mind racing, you feel a sense of impending doom enveloping you. The assault on your nervous system is anguishing. You bolt!
Sensory overload is coming in from all directions inflicting more and more and more. All you want to do is escape!
Instinctively. Your entire focus now is to find relief any possible way you can. Your nervous system takes over and you are no longer in control of your body. Very much the same way that the body forces you to breathe when holding your breath underwater. You are compelled to react by the force of survival in an audacious move to escape a fate worse than death! Like a seizure you have no agency over yourself. And it’s terrifying!
Your nervous system is stuck in fight or flight. You can only react. You yell, scream, pull your hair, stomp your feet, throw things! All your efforts are sensory needs seeking to be met. Searching out input and stimulation to bring harmony back to your internal anatomy. You’re desperate, crying! You are stuck in an eternity of frenzied horror and can’t escape. Panic! You’re dreadfully helpless as you watch your body do what it needs to in order to stop itself from reacting to the overstimulation of your environment. You can’t stop it.
A tenacious impulse comes on. One you try desperately to ignore, you tell yourself to keep yourself together but you are helplessly subjected to nature and to instinct. It’s overwhelming! Impossible to overlook! You don’t want to do harm to your body but you unintentionally injure yourself as you hit your head with your fists, bang your head against a wall. All against your will. It’s your Nervous System.
Finally it stops! A wave of relief washes over you. You feel yourself calming. Your heartbeat slows. You cry. The noise level is more bearable. The energy that had been in control of your body is waning. Compliant, your Nervous System has balanced itself and has handed the agency of your being back over to you. The headbanging and extreme stimming worked even though it was not your choice. You’re exhausted and all you want to do is quench your thirst. Sit in a hot shower. Then climb into bed. You can’t fully communicate yet. You write down enough to tell someone to get you out of there and that you need to go home. You’re free!
You don’t know what impact this NeurologicalEvent, commonly referred to as a Meltdown, will have on your friendships, job, social standing, and life in general. It’s happened before and it will happen again. The fallout won’t be good. At best, it will just be something that happened! As it should be. You just have to pick up the pieces later. For now your focus is self care. Your needs are very basic.
You get home. Assess your injuries. Tend to your wounds. Hydrate, maybe eat something simple. You take a warm bath or hot shower and calmly stim. Your spouse, friend, mom, dad, maybe all of these people, help. For some of us maybe no people help because you know you’re safe now and you just want to be alone, at peace. You crawl into bed and you shut down.
Once again you were on full display at a Rodeo. A fearful bull bucking in pain. Now you are just a person with an Autistic Neurology that has an unquenchable craving to rest, to sleep.