Shock and Au

Danger High Voltage

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!

It’s Aliiiiive!

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.

I’ll make it hurt!

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. 

More on: 

GED (Graduated Electronic Decelerator)

ECT (Electroconvulsive Therapy)

AED (Automated External Defibrillator)  

EMG (Electromyography)

Sex Stims!! (Just not too loud!)

Recently it’s been debated in the Autistic community, possibly due to one of my Tweets, on whether or not sex is a valid form of Self Stimulatory Behavior aka Stimming. (Spoiler Alert: It is!)

While the concept was met with mostly positive feedback there are some that do not see it that way and for those who do not see sexual activity as a stim, I feel it would be helpful to break it down for you so you are more apt to understand sex stims even if you don’t adopt the concept yourself. Keep in mind that Autism is a spectrum of differences that we may or may not share with other neurodiverse people. One person’s stim may be another person’s sensory overload and that is okay too! No one has to be the same. It’s a rule!

Before I continue I wanted to speak up for the neurodivergent that rely on sex stims to be able to function. Mainly the female among us. I have a hypersexual sex drive that is stimulation based and, as a result, I have been slut shamed for much of my life and, regardless of whether or not I was monogamous and faithful, I’ve had a bad reputation. I’m tired of this! We need more understanding and compassion for those of us that respond in a sexual way to carry out their stims. I’m not a slut or someone out of control. I’m not even particularly promiscuous. I like sex. A. Lot. I prefer long term trustworthy partners like a spouse or, in the past, a long term friend. However, that all has always been overshadowed, simply, by my liking sex. This is an attempt to bring levity to a situation that desperately needs it.

To start with I think we will answer what is a Stim? The word Stim is “Autistic Slang” for Self Stimulatory Behavior. It is very common for Autistic and Neurodiverse people to stim. You have most likely seen Autistics or other neurodivergent persons tap, rock, spin, snap their fingers, flap their hands, and other repetitive movements. These are the most common and more obvious of SSB’s but there are a plethora of other stims too!

There are also auditory stims (stims that you hear) such as words and how they make you feel when you say them (a good example is when swearing makes your stubbed toe hurt less) or humming. Grunting, clearing your throat, and shouting are also vocal stims. Some auditory stims are repetitive like striking a certain piano key over and over and some are whimsical for example enjoying wind chimes as they dance in the air currents. ASMR could even be considered an auditory stim!

There are tactile stims. For example, my husband likes satiny cloth that feels slick and silky when rubbed together. Petting your cat or dog, running your hand over a brick wall (I did this as a kid) are all tactile stims. I like how the hot water feels on the tips of my fingers in the shower. Walking on the grass, playing with fidget toys, sitting on your hands (also me) are all, yes, you guessed it! Stims! We have proprioceptive (where you are in space and in relation to other objects, body position, and movement), vestibular (sense of balance), Gustatory (taste), Olfactory (smell) self-stimulatory behaviors.

So we know what stims are but why do we do them? It’s all in your head, literally! Autistics stim in order to produce the neurotransmitters they need to function. (Non-Autistics stim to just not as much as we do.) Proprioceptive stims will improve your sense of where your limbs are. Some Autistics have a service animal to help them stim, such as Drea in Everything’s Gonna Be Okay, by having her service dog apply pressure to her body. Running or pacing can burn off extra energy and anxiety while flapping your hands can achieve the endorphins you need to be happy and in the moment. Feel good stims, like satin pillowcases, are there to help relax. Happy textures, warmth, water, they are all sensory-stimulating interactions that will boost the feel-good chemicals in your brain and help you get through life. My husband will squeeze me tightly when I’m being overwhelmed. It helps by calming my nervous system. My asking him to apply pressure, while assisted, is still me seeking the stimulation of a squeeze much like Drea and her dog, but my hubs isn’t a dog, he’s a human.

Breaking down the term Self Stimulatory Behavior is the key to deciphering what SSB’s may include.

The word self is pretty self-explanatory (weak attempt at a pun intended) so on we move to the word stimulation. (Yes, you can giggle at the following paragraph. I did!)

“(transitive) physiology to excite (a nerve, organ, etc) with a stimulus”

A few of the definitions I found for stimulation and stimulatory are:

“(transitive) physiology to excite (a nerve, organ, etc) with a stimulus”, “The condition of being stimulated. The application of a stimulus to a responsive structure, such as a nerve or muscle, regardless of whether the strength of the stimulus is sufficient to produce excitation”.

Then there is the word Behavior which I’m assuming we all know what it means but just in case I’m going to say it may be defined as an “observable activity in a human or animal, the aggregate of responses to internal and external stimuli”, “a stereotyped, species specific activity, as a courtship dance or startle reflex”, “Often behaviors or behavior pattern.”

Oh! What just happened! We are talking about the senses, and the stimulation of organs, getting excited, and application of a stimulus to a responsive structure! All of these apply very well to SSB’s, and all of them sound very satisfying. Matter of fact masturbation is known and recognized as a stim, is it just me, or is it getting a little hot in here!

The act of sex stims provides a very intense sensory-stimulating experience. It engages the entire body. The proprioceptive repetition of thrusting. The vestibular input of heavy breathing and vocal exclamation of delight. Sex also comes in an array of tactile input (take that however you want to, no judgment) that increases the neurotransmitters in your brain.

During sex stims, important neurotransmitters are produced, that boost the functionality of the brain and nervous system. Dopamine is known for making us feel good, it’s in charge of movement, propelling your personality up and out. Dopamine also is in charge of motivation and focus.

Sex is also a fantastic source of oxytocin, another neurotransmitter that important for us to stimulate, yet, it’s difficult to do on our own. Cuddling, sex, hugging, nursing, and childbirth can stimulate oxytocin. The hormone facilitates trust, bonding with a romantic partner (as well as bonding with a newborn after a mother gives birth). Social behavior and anxiety are also linked to oxytocin. Studies show that sex also stimulates prolactin, noradrenaline, serotonin, and endorphins (endogenous opioids), all of what a brain needs.

The Autistic Nervous System is deficient in many neurotransmitters. Dopamine, Serotonin, Norepinephrine, Oxytocin, are only a few neurotransmitters that come to mind that have been indicated as being contributing factors to how the Autistic mind functions.

Not a brain just a cool pic!

Sex is the one Self Stimulatory Behavior that not only stimulates the brain in its entirety and neurology all at once but the cervical stimulation that comes (okay the pun is totally intended here) with deep penetration can calm down the vagus nerve and help reduce anxiety.

Last, but far, far, from least, is that when it comes to sexual behaviors, in Autism, we have hyposexuality, hypersexuality, and paraphilia’s (such as BDSM) just like we do in the majority of the population. In psychology, however, they hesitate to diagnose these as sexual disorders even when it fits the description. This leads me to believe that sex, even when occurring in excess, thankfully, is seen as they should be seen. These are Self Stimulatory Behaviors, aka sex stims, that have been stigmatized as deviant behavior when they shouldn’t be. If it is consensual and everyone understands the meaning and purpose of the act, then we need to accept sex as a stim. To add stigma to something that is enabling Autistics to function better is not the way to go.

Sex stims! Safe stims!

Instead, may I suggest education on safer sex practices, instruction on sexual health, teaching consent and legal age limits, point them in the right direction towards age-appropriate information on sexuality. Most importantly we need to teach Autistics about telling people when they are violated. We need to teach people about replacement stims (age-appropriate instruction on “personal massagers” is good) and alternative sexual stims to, well, sex!

Personal massagers, in case you needed to know.

The fact is, we are sexual beings just like any other human, and many of us find sexual interaction to be a fantastic stim. Regardless if it’s an interactive (with someone) stim or not doesn’t matter. It’s a stim that brings focus, balance, and a slew of other health benefits. Sex is a stim.

Note: I did have all the links for references for this however I had them on a micro SD I was forced to reformat. Please, forgive me for not having all the pertinent information on hand. It was not intentional. In addition, I am not interested in anything sexual, so don’t message.

Extreme Stims During An Autistic Meltdown!

Photo by Atul Choudhary on Pexels.com

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?

Photo by Steshka Willems on Pexels.com

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.

Helpful Hints:

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!

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.

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. 

My Autism, A Legacy

Grandpa’s Garden Now

Autism is surrounded by much controversy as to what causes it. Is it vaccinations, no. Autism predates vaccinations. Is it abuse, no. The best parents in the world can have an Autistic child. Environmental, weak at best. As soon as a family changed environments they wouldn’t have another Autistic child yet often they do. Pollution, no. Autism emerged when pollution was drastically lower than it is now. Then what causes it?

In 1943 Leo Kanner, the first person to openly observe and publish studies on Autism, also noticed the same eccentricities in the parent’s of the child that the Autistic child exhibited. Mr. Leo Kanner correctly thought that the condition was genetic even though he would waiver to and from that belief throughout his lifetime.

When I hear that the person who first recognized and studied Autism originally thought that Autism was a genetically inherited uniqueness, I get chills. I can recall, quite clearly, the two people who raised me from the age of two to the age of eight. My Grandparents. They are the perfect example for the argument that Autism has a strong genetic component. Both of them were loving and introverted, for the most part.

My Grandma was a quiet and compassionate woman. She didn’t have many friends but she did have her routines. Up in the morning, coffee, breakfast, daily obligations. Then she would rock in her rocking chair while watching the same shows she did the day before and the day before that, as she sipped her wine. Her Rocking chair, that was her favorite chair. The only place she sat. My dear Grandmother also walked on her toes, a trait I possess. As an adult knowing the quirks of Autism I now know that those were her stims and I smile. She is part of me.

My Grandmother had additional symptoms such as Sensory Processing Disorder, undiagnosed, but with twenty-twenty hindsight it’s obvious to me. She had an exaggerated startle reflex to loud or unexpected sounds. They clearly gave her anxiety. She had moved out of my Grandfather’s room, or removed him from hers, I’m not sure which, because his snoring kept her awake. (In all fairness he was a champion snorer and you could hear him everywhere!) However, everyone assumed it was because she held a grudge but no one knew what it was, I’m thinking it was just about the snoring. Grandma’s bedroom also had blackout shutters turning her room unnaturally dark, even in the daytime. These shutters were also installed in my room as they probably recognized my sensory processing issues as well. Even if they didn’t know what it was they knew I needed more darkness than other people night to be able to sleep. As a young child I would climb into bed with her. I have faint, but happy, memories of her carrying me down the hall back to my own room. Now I know it was because she couldn’t sleep with a tossing and turning 4 year old in the same bed with her. 

She also had a peculiarity with collecting bread bag tabs, twist ties, and plastic tv dinner trays when they became more common. She claimed it was because she was a child of The Great Depression and they kept everything just in case. But bread bag tan closures? I think it was Autism.

Grandma was also very logical for a woman and applied knowledge to life. There was a time when nonverbal me was fussy because of a tummy ache. So what did she do? Instead of fawning over me and trying to appease my irritability she crouched down to my level and gently put pressure on my stomach and on my back with her hands. This caused the gas that was giving me pain to escape in a rather loud passing. This caused her to smile and asked me if I felt better, I nodded, I did. When I was 17 and “dating” I showed her a picture of the boy I was seeing and referred to him as my intended. (I was really into older works of literature so I’d borrow archaic terms and words from them). Grandma didn’t get “girly” like other women by saying he was cute or asking how we met and wanting every emotional play by play. No, she instead infomed me on the meaning of the term “my intended”. It was only after my telling her I was aware that it meant the person I was going to marry that she became upset because I was too young.

Oh, Grandpa! Grandpa was intelligent. Scientific. Loving. A collector of objects, lover of radios, and a fan of knowledge. A believer that faith and knowledge could exist in harmony. My grandfather loved fishing and everytime he would go he would bring back gravel from the locale he had visited. He would store his collection of gravel in coffee cans in the Garage on a shelf above his work bench. Each one labeled with masking tape and Magic Marker what it was, where it came from, and what beach. All uniform, all organized. 

My Grandpa was also the collector of knowledge. It was he who taught me about the Greek Gods. He had books on everything from fish to mushrooms. I used to look at his books in awe at the array of color that this world has provided for us through flora and fauna. My favorite was the book of fish and pictures of the deep. I was a water baby, loving the sensory control it provided when I was submerged. So I would imagine what it was like down there at the bottom of the ocean. Safe and alone from the world above.

Grandpa had extensive knowledge, no doubt about that, but he had two narrow interests that I can vividly recall. His garden and his radio. He would spend hours on both of them. His garden had everything in it. Tomatoes, squash, eggplant, green beans, corn and more. It was magnificent! He’d spend summer days picking bright green, horned, worms out of the tomato plants. Behind the garden were orange, lemon, and grapefruit trees. A Loquat tree and strawberries also had a place in the yard. He knew everything about gardening and even had made the side yard into a greenhouse complete with a compost bin. My Grandpa loved different vegetables and even would brine his own olives. Perfectly content to be by himself. Like I am.

When he wasn’t gardening you could hear Grandpa on his radio in the garage. Click, click, click with the Morse Code. The crackle of the static. Maybe a beep or two. He would make friends this way. Much like the Autistic community has found connection in chat rooms and on Twitter my Grandfather found connection through the air waves of the 1980’s. I know he had a friend in Russia and a few in Canada. He was of Hispanic descent and loved learning about different cultures and sharing his. Much to my Grandma’s dismay, he also treated me to freshly fried, hot, chicharrones. Fried pork rinds which she thought were disgusting! They were delicious.

To me, in my memories, both of them were clearly on the Spectrum. They both had narrow interests, routines, and stims. They both were perfectly content in solitude. Neither were especially physically affectionate but they knew when to give hugs and when not to. They were incredibly loving and empathetic in a way that I understood even if others didn’t. I saw evidence of Masking (a form of “acting” that Autistic people assume so they fit in with Neurotypical people/society better) in pictures and other relics of family history. Like my Grandma attempting to sell Mary Kay. My Grandfather portraying himself as a ladies man in old home video reels. All of it. Them. They are where I come from. They are my genetic code. They are the people in which my Autism flows from. Autism is my heritage, my legacy and I cherish it because it connects me to them.