My Coming into Autism Story

They are sorely short on Autism pics so you get this!

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?!” 

Therapist, “No”.

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.

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Sensory and/or Meltdown Room for Adults: Part 1: Color Choice

A sample of calming colors we have found at local home improvement stores.

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. 

Ocean Colors are calming and natural.

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. 

if using warm colors, keep them as accent colors in order to keep the room calm.

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: 

1. 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. 
2. 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. 
3. 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!

The Autistic Meltdown: A Metaphor

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! 

All you want to do is escape!

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 Neurological Event, 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.