9/6/17 4:05 PM
This is sort of my coming out, as over the last 6 years I have been given the safe space and much needed time to really feel myself, to heal wounds I didn't know were even there. With rawness and vulnerability comes scrutiny, judgement, and misunderstanding, but it's with the sincerest of hope and empathy that others will be able to draw something from some of my past experiences and better be able to cope in a world that doesn't always feel habitable. I continue telling myself I will just keep these stories to myself, write them down and stash them away in a shoe box to store in the deepest nook of my closet, which mostly comes from my intense fear and discomfort of being misunderstood, but I simply cannot any longer. There is a sacred voice calling from within me to let it out. That is what I must do.
I just got finished doing a 24 hour in home EEG...mostly unsuccessfully. I barely slept all of 4 hours. The glue they use to stick the electrodes to your head is basically pure acetone which is what ethanol for cars is made from...I stopped her after the 4th electrode when I explained to her that I could not continue and was feeling dizzy, nauseous and lightheaded. I flat out refused to go on because the smell was too strong and making me feel high. The glue felt like dry ice on my scalp...she irritably whipped out a "non toxic" unscented paste instead and proceeded to tell me that it would be more of a bother to remove and that the first adhesive was completely safe and not harmful at all or they wouldn't let her be around it all the time. Well I call bullshit. I did some research ya know, as usual and found that the main ingredient 'ethyl ether' is commonly used as a solvent in laboratories and as a starting fluid for some engines. Hmm, safe you say? It can cause cough, sore throat, drowsiness, vomiting, headache, labored breathing and unconsciousness. Is used as an inhaled anesthetic and acts very similar to chloroform...It is often used as a recreational drug to get HIGH!!! She rudely exclaimed that it cannot get me high and causes no harm...NOOO PLEASE...I'm done.
I am extremely sensitive, and have allergies to artificial fragrances and chemicals (and pretty much anything that isn't straight from the earth) and I can assure you this stuff is not safe.
I am annoyed that I wasn't given a choice or educated before hand about what would happen, about what would be used on my body without my consent. I was sat in a chair and simply rushed through the entire process. I was talked down to and treated like I was a hassle. I was supposed to video record myself the entire 24 hours and I also refused this. It made me feel extremely uncomfortable having a man watch my every move, watch me sleep...from some room in a lab 4 hours from here.
The weight of the 23 electrodes attached to a heavy metal box pulled on the back of my head every time I moved. I have many neck, spine an shoulder issues from my car accident at age 15 when I was hit by a van while crossing the highway. After only a few hours of the EEG, I developed a migraine, and now today I am tense, tight and my muscles are armored.
Halfway through this shit storm, around 1 in the morning I was nearly suicidal from the horrible sensations and my head feeling like it was in a vice. I removed half of the tape and gauze used to keep everything in place, and battled for hours internally to keep it on in order to finish the test.
I am writing about this because I want others to know what its like to be "hyper-sensitive"...to be "on the spectrum", to literally want to crawl out of your skin or shut off your brain from to much stimuli, to do something the majority of people would be fine with, but for someone like me is extremely distressing, exhausting and traumatizing. 24 hours of what felt like cruel and unusual punishment. Like what I imagine being abducted by aliens feels like and being subjected to weird testing.
These are very familiar feelings though. I know it so well, and it's the reason why this has been such a huge trigger and throws me back to when I was 7, 10, 15, 17... years old. I experienced it so much growing up. As a child who was "fidgety, rambunctious, rageful, angry, too sensitive, uncooperative, uncontrollable" labeled as a "juvenile delinquent" in juvenile detention, and in school, by my parents and family members. I was seen as a bother, a feral animal that needed tamed...caged when I would not cooperate with societies rules and standards. I was verbally abused by adults and bullied by peers. When in reality I was getting so much external stimulation. I could not process it all and so to others that looked like a monster. they took it personally and projected their own anger, pain and hate onto me.
I simply experienced the world in a much different way than others and I was always just waiting for someone to "see" me. Praying for some big person to swoop down and pick me up and pat me and tell me its all okay...that I'm safe now, and that the world just wasn't ready for me...for creatures like 'us'. That someday I would find my people and be loved for who I am. For all of my quirky and odd traits. Appreciated...Wanted...
Well that never happened and I grew up alone and invisible, un-diagnosed as being on the autism spectrum. My angel never came.
Not having the tools and answers I needed to cope in a world that felt like a bad dream that you never get to wake up from, I struggled in school, in my social life, and still do for this reason. I got good at being a chameleon and learning to mimic and blend in to survive. Being a kid was so hard! Now as I sit here and sob I feel the reality of that statement so deeply. It was so damn hard to just exist, and I survived. I am alive!
Most women on the spectrum never get diagnosed as children, and may finally get a diagnosis as an adult if they can find a doctor who is willing to work with them, and believes them.
For some reason still today it is believed by many that both men and women or boys and girls present autism in the same ways, with the same mannerisms and "symptoms". This is simply not true, and has resulted in an extremely high percentage of un-diagnosed female adults going virtually un-noticed and suffering without answers well into there 20's 30's and 40's, sometimes there entire lives.
The vast majority of children diagnosed with autism are boys, and that is because the presenting criteria are modeled after the way boys present the condition.
Many of these un-diagnosed women suffer for a very long time with co-morbid emotional, mental, and psychological disorders due to their lack of diagnosis. This is me in a nutshell, and explains why life has been so hard up until now, why living "out there" almost killed me many times, both literally and figuratively.
I still have not been diagnosed and haven't decided whether or not to even pursue it, due to stigmas and the fact that most people, including doctors look at me and say "Oh you don't look like you have autism", "You look fine to me", or "Adults cant have autism!?!" Which is the most absurd thing to say because children don't grow out of it...I also want to make note that it is now believed that there is classic genetic autism and many other illnesses that have "autism-like" appearance. Like vaccine injury, and an array of other environmental exposures we are just beginning to understand. I believe I have a little of both.
In some ways I am also thankful I wasn't diagnosed as a child because in the 80's and 90's and even very recently it was still believed that it needed to be cured. That it could be trained out of a child. Which basically meant that children were repeatedly forcibly exposed to extremely intense (to them) stimuli to "de-sensitize" them in order to fit into the world better, to be acceptable and 'normal'. This is such a disgusting thing to even fathom and I have had the privilege of reading a first hand account of this from a former ABA or 'Applied behavior analysis' specialist who also has autism. You can read her article here...
Right now, today, in this moment, I just feel violated... I feel so dirty and want to scrub it all away in the shower. Wash this shit right down the drain.
I plan to share more of my story with the world starting NOW, so that maybe others don't have to do it all alone. So they know they aren't trapped in a world that doesn't understand them, and to know that life can get easier and more bearable when you find your place in it, when you find your people. I have found mine and I cant imagine where I would be if I hadn't moved to Washington 6 years ago. This has given me yet another opportunity to reflect and be thankful for what I have, how far I've come, and where I'm headed. There is always a silver lining and in this unfortunate experience I was given an enormous healing opportunity and I choose to take that bull by the horns and ride.
I just got finished doing a 24 hour in home EEG...mostly unsuccessfully. I barely slept all of 4 hours. The glue they use to stick the electrodes to your head is basically pure acetone which is what ethanol for cars is made from...I stopped her after the 4th electrode when I explained to her that I could not continue and was feeling dizzy, nauseous and lightheaded. I flat out refused to go on because the smell was too strong and making me feel high. The glue felt like dry ice on my scalp...she irritably whipped out a "non toxic" unscented paste instead and proceeded to tell me that it would be more of a bother to remove and that the first adhesive was completely safe and not harmful at all or they wouldn't let her be around it all the time. Well I call bullshit. I did some research ya know, as usual and found that the main ingredient 'ethyl ether' is commonly used as a solvent in laboratories and as a starting fluid for some engines. Hmm, safe you say? It can cause cough, sore throat, drowsiness, vomiting, headache, labored breathing and unconsciousness. Is used as an inhaled anesthetic and acts very similar to chloroform...It is often used as a recreational drug to get HIGH!!! She rudely exclaimed that it cannot get me high and causes no harm...NOOO PLEASE...I'm done.
I am extremely sensitive, and have allergies to artificial fragrances and chemicals (and pretty much anything that isn't straight from the earth) and I can assure you this stuff is not safe.
I am annoyed that I wasn't given a choice or educated before hand about what would happen, about what would be used on my body without my consent. I was sat in a chair and simply rushed through the entire process. I was talked down to and treated like I was a hassle. I was supposed to video record myself the entire 24 hours and I also refused this. It made me feel extremely uncomfortable having a man watch my every move, watch me sleep...from some room in a lab 4 hours from here.
The weight of the 23 electrodes attached to a heavy metal box pulled on the back of my head every time I moved. I have many neck, spine an shoulder issues from my car accident at age 15 when I was hit by a van while crossing the highway. After only a few hours of the EEG, I developed a migraine, and now today I am tense, tight and my muscles are armored.
Halfway through this shit storm, around 1 in the morning I was nearly suicidal from the horrible sensations and my head feeling like it was in a vice. I removed half of the tape and gauze used to keep everything in place, and battled for hours internally to keep it on in order to finish the test.
I am writing about this because I want others to know what its like to be "hyper-sensitive"...to be "on the spectrum", to literally want to crawl out of your skin or shut off your brain from to much stimuli, to do something the majority of people would be fine with, but for someone like me is extremely distressing, exhausting and traumatizing. 24 hours of what felt like cruel and unusual punishment. Like what I imagine being abducted by aliens feels like and being subjected to weird testing.
These are very familiar feelings though. I know it so well, and it's the reason why this has been such a huge trigger and throws me back to when I was 7, 10, 15, 17... years old. I experienced it so much growing up. As a child who was "fidgety, rambunctious, rageful, angry, too sensitive, uncooperative, uncontrollable" labeled as a "juvenile delinquent" in juvenile detention, and in school, by my parents and family members. I was seen as a bother, a feral animal that needed tamed...caged when I would not cooperate with societies rules and standards. I was verbally abused by adults and bullied by peers. When in reality I was getting so much external stimulation. I could not process it all and so to others that looked like a monster. they took it personally and projected their own anger, pain and hate onto me.
I simply experienced the world in a much different way than others and I was always just waiting for someone to "see" me. Praying for some big person to swoop down and pick me up and pat me and tell me its all okay...that I'm safe now, and that the world just wasn't ready for me...for creatures like 'us'. That someday I would find my people and be loved for who I am. For all of my quirky and odd traits. Appreciated...Wanted...
Well that never happened and I grew up alone and invisible, un-diagnosed as being on the autism spectrum. My angel never came.
Not having the tools and answers I needed to cope in a world that felt like a bad dream that you never get to wake up from, I struggled in school, in my social life, and still do for this reason. I got good at being a chameleon and learning to mimic and blend in to survive. Being a kid was so hard! Now as I sit here and sob I feel the reality of that statement so deeply. It was so damn hard to just exist, and I survived. I am alive!
Most women on the spectrum never get diagnosed as children, and may finally get a diagnosis as an adult if they can find a doctor who is willing to work with them, and believes them.
For some reason still today it is believed by many that both men and women or boys and girls present autism in the same ways, with the same mannerisms and "symptoms". This is simply not true, and has resulted in an extremely high percentage of un-diagnosed female adults going virtually un-noticed and suffering without answers well into there 20's 30's and 40's, sometimes there entire lives.
The vast majority of children diagnosed with autism are boys, and that is because the presenting criteria are modeled after the way boys present the condition.
Many of these un-diagnosed women suffer for a very long time with co-morbid emotional, mental, and psychological disorders due to their lack of diagnosis. This is me in a nutshell, and explains why life has been so hard up until now, why living "out there" almost killed me many times, both literally and figuratively.
I still have not been diagnosed and haven't decided whether or not to even pursue it, due to stigmas and the fact that most people, including doctors look at me and say "Oh you don't look like you have autism", "You look fine to me", or "Adults cant have autism!?!" Which is the most absurd thing to say because children don't grow out of it...I also want to make note that it is now believed that there is classic genetic autism and many other illnesses that have "autism-like" appearance. Like vaccine injury, and an array of other environmental exposures we are just beginning to understand. I believe I have a little of both.
In some ways I am also thankful I wasn't diagnosed as a child because in the 80's and 90's and even very recently it was still believed that it needed to be cured. That it could be trained out of a child. Which basically meant that children were repeatedly forcibly exposed to extremely intense (to them) stimuli to "de-sensitize" them in order to fit into the world better, to be acceptable and 'normal'. This is such a disgusting thing to even fathom and I have had the privilege of reading a first hand account of this from a former ABA or 'Applied behavior analysis' specialist who also has autism. You can read her article here...
Right now, today, in this moment, I just feel violated... I feel so dirty and want to scrub it all away in the shower. Wash this shit right down the drain.
I plan to share more of my story with the world starting NOW, so that maybe others don't have to do it all alone. So they know they aren't trapped in a world that doesn't understand them, and to know that life can get easier and more bearable when you find your place in it, when you find your people. I have found mine and I cant imagine where I would be if I hadn't moved to Washington 6 years ago. This has given me yet another opportunity to reflect and be thankful for what I have, how far I've come, and where I'm headed. There is always a silver lining and in this unfortunate experience I was given an enormous healing opportunity and I choose to take that bull by the horns and ride.
Im not certain what i am, all I know is that I'm different and this place doesn't feel like home.
Until next time,
Sarah
Until next time,
Sarah
I'm so sorry for your pain. Way to step out and share your story. It will help heal you and others. Though I'm not on the spectrum I am an HSP (highly sensitive person) and can relate to being over stimulated more easily than "normal" and I was labeled "too emotional". It has taken me into my adult years as well to learn the conundrums of myself and to find the path of healing and of sharing as well. I wish you all the love and peace being present in your own life can bring ♥️
ReplyDeleteI too am an hsp. Thanks for your love and support darlin. ❤💜❤💜❤💜❤😘
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