Tag Archives: Actually Autistic

A Frank Talk

TW/CW: Discussion of dying, death, and chronic illness, also ableism by medical staff at a hospital. And yes, i do discuss my faith, and belief system (mention of Christianity and Jesus, but i promise it is non-preaching.)
Last June, my world came crashing down. I was hospitalized on June 16th when my then caregiver, K, came and i was almost passed out in my chair, weak, and unable to move much. My lymphedema leg lump that is on my left inner thigh, had become red hot infected. And when i got to the ER, after they did labs on me, they said i had a severe infection in the leg lump—and—end stage stage 5 kidney disease. I was hospitalized for a total of three weeks.
Two days later, i had surgery to implant a chest catheter at the right side of the base of my neck, which goes into my heart, in order to start immediate kidney dialysis.
I’ve been on dialysis ever since, starting in the hospital, and then in center when i got discharged from the hospital July 5th.
At first, i was so devastated—and i actually went through what people go through when a loved one dies, several stages of grief—denial, anger, sadness, depression, etc. I cried alot, and often out of the blue, i would burst into tears. This was so new and terrifying to me. I even called one of my siblings and left them a long message to let them know, i don’t hate them, and why i felt led to tell my story online in 2010—that my intention was not to put them on blast to hurt them, but to make them aware of how the way i was treated had a great profound, sadly, negative affect my life, and to educate others going through the same with their families, and to show others they are not alone.
But right away, i was met with a team of two nephrologists, who talked to me in depth about what i was to expect. Since my labs were stable, i was allowed to still eat mostly normally, just go light on foods with phospherous, potassium, and sodium. They told me they would have my back, and that the kidney center i would be going to for my dialysis would have my back.
I loved going to dialysis right off the bat. Most of the staff have been so supportive of me, and i have even made many friends and allies among them. I even created a cool new imaginary friend out of my dialysis machine, to help me to cope with having to go there for 4 hours three days a week, who is also a real ally, even though she is not real.
Okay, let’s get to the point of this story. Kidney disease IS a killer. It is eventually fatal. The dialysis machine, our second kidney, acts as our kidney, when our kidneys can no longer do their work to cleanse the toxins from our bodies. But with kidney disease, comes the risk of heart attack, cardiac arrest, stroke, infection of the access site, whether chest catheter, fistula, or AV graft, and damage to other internal organs.
Twice now, during dialysis, i have experienced an episode where i get a weird feeling all over, a huge gas bubble forms in my upper abdominal cavity underneath my breasts, my urine turns dark brown, and i cannot eat or drink a thing until the gas bubble and nausea slowly passes. This happened a month ago when they took off way too much fluid for my body to handle, then it happened again yesterday.
Lat night i felt i needed to go to the ER. There, i was treated to first one doctor and nurse, who without asking me first, pulled up my shirt to feel my abdominal area. That is a real invasion of my own body, to get touched without first asking. Doctors and nurses do this all the time, and it is downright disrespectful. Then the first nurse, also without asking me, lifted my legs from the wheelchair foot rests, was rough about it, and i told her to stop and ask me first, and to be gentle with me.
I stayed there for over four hours, only so they could get a urine sample, which by the way, never got tested, then blood was drawn, six vials in all. They also did a complete ultrasound of my entire abdominal area. But the way i felt like i was being unheard by the nurses and the first doctor, i refused to let them admit me. If i need to go back to a hospital, it won’t be this one in Santa Maria, it will be one in San Luis Obispo that has an excellent patient centered reputation. I just didn’t feel like i would be accomodated this time at our hospital…so i had Sam, my caregiver and friend, bring me back home.
I am able to sip small amounts of water now as of this morning. And update: I ate an entire Solo cup of Rice Krispies with 2% lowfat milk, and a sliced apple. my urine looks clear and light-colored again.
The prospect that i could die soon, is once again hitting me hard—and it scares me shitless. While i have never turned my back on my faith and Christianity (Jesus), since i have been woken about so many things, i no longer feel it is respectful or appropriate to those with different beliefs and faiths, and those who aren’t into faith, to proselytize. I never was a Bible thumper, but i did used to post alot of Christian themed memes when i first came onto Facebook, mainly out of guilt that if i didn’t post them i wasn’t a true believer—that i was denying my faith is Jesus. I still profess Jesus as my savior who died for me so i could have eternal life, but i also respect all of you who believe differently, are Jewish, Muslim, Hindu, or no faith in any God at all. I was hurt greatly in so many churches i went to, and i never want to be that kind of person who hurts others. I bring this up, because of the fact that i know i am dying, and there is a huge part of me that fears i may go to hell when i die—because i still cuss like a sailor, i still get pissed off, royally pissed. But ya know what? I now know anger is a valid emotion, and some people do not deserve our forgiveness. I know hell on top of all of the earthly hell i have already been through, would be the unwanted icing on the cake for me.
Sigh—-i don’t know where i am going with this talk. I just know i am real, and i just want to know that i made some kind of a difference in other people’s lives before i do leave this earth. And i want to live on after i die, in a happy place–whether it be Heaven, or in a new earthly life. Knowing that, would help to alleviate much of my fear of dying.
And i would rather die where i feel safe dying. Not with harsh nurses that don’t give two fucks about me, but with the people who i love, who love me. Like my now caregivers, Sam and Iris.
To all of you, my friends here on Facebook, to the ones who are not on my friends list now, but who i still remember with love and gratitude, to the few local friends i have, i thank you all for the love and support you’ve all given to me, for having my back, and for helping to wake me the fuck up about so many things i used to believe in, but don’t anymore because i now see so many truths that i didn’t see before. I have been awakened to the knowledge that i am both bi-sexual and non-binary/queer. I thank you all for enriching my life so much, for the true treasures you all have been and still are to me today.
I love you all, friends. Each and every one of you. To the moon and stars and back, i love you all so very very much. Your light will shine on me forever and ever and ever.
I wish i had enough time left to help bring this nation we live in to a place of true love, peace and well-being for all of its people, including our most vulnerable, elderly and disabled people, People of Color, LGBTQIA, Neuroqueer, Autistic/Disabled, Muslim, Jewish, Black, Latinx, Mexican, Puerto Rican, Asian, everyone. A place where healthcare is a fundamental human right. Where disabled people start being truly accepted, included and accomodated and part of the national conversation. Where gay and transgenders can feel safe walking down the street. Where an elderly grandmother can know she can get her meds, pay her rent, monthly bills, or stay in her home that she still owns, where Muslims and Jewish people can worship without fear of a mass shooter gunning them down. Where there is no more gun culture, period. Where no more Black youth get shot and killed. Where hate is stamped down. I would work for a nation that is no longer thought of as a cruel nation.
In the meantime, i am not dead yet. As long as i still breathe, i will spend my very last spoon defending my friends and my community. I will hold space for all of you. I will do what i can to spread the causes of love, truth, and justice.
Love and peace and light,
Melissa Fields, Still Here

A 2010 About Me, Re~Do

In researching some of my relatives, i came across an old Facebook post i had written, as an appeal for help, in early 2010. Rather than just delete it, i’m going to repost it here and on my WordPress, only without the awful ableistic language i used back then, well, because, i did not know what i know now about my autism, and i was searching for support and community. I was scared, still new to Facebook, and still not yet woken about so many things, so i used functioning labels, because i just didn’t know any better.

Below is my old appeal, because it is still too well-written to just delete and forget about, only no ableistic language this time!

[CW for some ableist slurs.]
~~~
Not The Cr**y Lady Of Mean Bully Monster Street!!!!
__

Hi–my name is Melissa. I only began to reach out on Facebook to tell my story of horror that happened to me around the holidays. (And now as i re-write this, it is 2019, and i forgot what that horrible was, and will have to find time to go back in my blogs and revisit my old post.) Basically, i am an autistic adult, 49 yrs. old, going on 50, who has never been able to work or fulfill any of her lifelong dreams and goals. (I am now almost 59 years old.)
Also a new re-write to this, I live in a neighborhood that is mixed residential and light industrial. I have had to live here since May of 1991, and it has been sheer hell for me. I have never been able to work bc of my disabilities, so i have been living trapped in an unhealthy environment full of bullies who make it their mission to torment me almost on a daily basis, by making the very noises they know trigger me. The noises include: Loud banshee style man yells, cussing at me, calling me names, (even the r word), loud sustained horn honking, louder than F engine revving, and turning their bass filled music up so loud my entire house vibrates and shakes. Stuff i cannot just unhear.
And, they do this right in front of my house.
Some of my history….

From Spring of 1976 up to April of 1992, my only problems were that i was firstly in high school, wanting a way to be able to pursue my dreams of becoming an actress and an FM rock radio deejay, then, after high school, a way for me to get off of the gov’t aid i was on, so i could be able to learn how to drive, get my own car, go to work and have a self-sufficient and productive life–and then, hopefully,–i’d be able to fulfill my dreams and goals.

My big problems with ppl taunting me and being cruel to me, were a thing of my past, or so i thought. That all occured during my early childhood and my school years, between years K thru 4th grade–it stopped in 4th grade, when i happened to go to a school that had nice kids who liked me….and then resumed again, in earnest, when my family and i moved to the country, and my 5th grade resumed being a nightmare again, with the kids being viciously cruel to me again. My 5th thru 8th grade years remained very painful..and my first two years of high school–were more of the same. I had family problems too, with mean brothers and mean sisters, all being mean and insensitive to my being different, too. I gained relief after high school, when these mean brothers and sisters moved out on their own, got married and began having families of their own. In the spring and summer of ’76, before my junior year of high school, i learned to cope by developing a silly goofy personality that my brothers and sisters all seemed to like. In other words, i learned how to mask my “differentness”.

I never knew i was autistic. My mom always called my disability a “perceptual handicap”. 3 months into first grade, i was put into EH classes for the emotionally handicapped, and i stayed in those classes until 4th grade, when i went to a nice school where the kids and teachers were both nice to me.

In 1981, i began to seek out pen pals who liked the same music i did–which was album-oriented rock, progressive rock, hard rock, heavy metal and new wave music. I LOOOVED the music of the late ’70’s and all of the ’80’s!!! I had sooooo much HOPE for my life in these days!!!!!!!!

Finally, in late 1987, my parents were financially able to afford to rent a small granny unit behind a bigger house for me so that i could be back in town again. This worked out great for me for the next 3 1/2 years, because i lived in a nice quiet residential neighborhood, where my neighbors were all nice–including the two old ladies who lived in the front house, Winnie and Joyce. They, as well as their family, and their church, all took me under their wings-and i blossomed even further, as a result!!
I was finally able to learn how to drive and i got my driver’s license and my grandmother’s car, in 1990. After this, i moved Heaven and Earth to try to get myself up and out of my rut. In 1991, however, my father, who had already had a stroke in 1989, had to also have major heart surgery–and i was forced to move here to–Mean Bully Monster Street. Because, my sister Mona owned a duplex here. So–i moved to one of the little cottages, next door to a girl who was 21 years old.

I continued to do great living here in the little cottage next door to me—for the next 10 months. I got along great with Molly–(not her real name)— and her friends–until Molly had one of those friends move in with her in April of 1992. Immediately after that, i began to be treated to shrill loud bubblegum pop music, with a huge megabass loudspeaker, aimed right at my house—and the battle was on. This was happening like clockwork, every single afternoon when Molly’s friend would come home from work. She would come inside their little studio apartment–and immediately, up would go the pop music–drowning out my rock music and my TV, to where i could not enjoy them. And–they were nasty about it. They would say that they were going to turn it down, telling me and my mom that it wouldn’t be a problem anymore–but they would turn right around and turn it right back up just as loudly, after two or three days again. In addition, they stopped being friendly to me right after Molly moved her friend in with her–something that i have always hated—-to have ppl hating me!!
I regressed BIGTIME–yes, it was me being back to having full-on screaming meltdowns just like the ones i had when i was a child and teenager again–because i was back to being taunted again, just like when i grew up with the mean schoolkids, and mean siblings. At the time, i felt like an utter failure as a person because i was having meltdowns again. I felt HUMILIATED—-because at that point in time, i felt like i was all wrong and defective, and i had spent so much energy working hard to get PAST all my painful growing-up years!!!!! I did not realize till much later on in life that this was internalized ableism, the thinking of myself as wrong and defective. But this was, sadly, what my family and society wanted me to be so i could fit in. And still, today, in 2019, many neurotypicals and non-disableds feel like being autistic and disabled is all wrong, all bad. And that we need to be fixed, cured, and healed and “in recovery”.

And, the past (now, 28 years) i have paid a million fold, because i got noticed for having those meltdowns—by all the other meanies who lived and worked on this street—-and most still live and work here, as of now, March 2019. The rest you all pretty much know about–and i have told this story in full, in my blogs, both on WordPress, and Blogspot.
I am here, because i feel that i am now near death because of my circumstances. And i feel so now more than ever, as i re-write this in 2019. Because i am now on kidney dialysis.
Yes. This has greatly affected my physical health. My health began going downhill the first week of Molly having her mean friend there playing the louder than F music right into my living room every fucking afternoon.

Back when i was still in what i thought to be my happy bubble—-when i still lived on Happy Street next to the 2 kind old ladies—i began to write appeal letters to a rich aunt and uncle—-because his wife is my late father’s sister–to ask for a small trust fund i could live on, so that i could have the freedom to get the help i needed so that i could do things to better my life without me having to fear being penalized by Social Security and then being totally knocked off my benefits-and then, if things didn’t work out, i wouldn’t have to face the very real risk that ppl have of not being able to get their benefits back.
Well–in the beginning, my aunt would read my letters—and my aunt would always call my mom to discuss my plight—and she would always ask my mom lots and lots of questions about me, as if she was genuinely concerned about me.
I would get my hopes up so high everytime that i would get a letter and the money i was asking for.
It resulted in me once getting $300 from her to help pay for some car repairs i needed. Then, in 1994, i began to write asking my Aunt if i could be in my uncle’s TV commercials–so i could earn money that way. I also asked if she would help me to get my artwork, stories and poetry published so i could make money through my creative endeavors. I also asked for help with the dental care that i needed that Medi-Cal would not cover at the time, to help save some of my teeth. (This is why my teeth are now really bad). Her heart had already grown hardened against me now—for no reason at all—so–her answer to all of this–was a loud, resounding “NO!!!!” To my mom, she said “No–she cannot be in her uncle’s commercials because of this and this and that—no–i won’t help her with her dental care or her therapy–or anything!!!!”
She went onto say to my mother that:

“Melissa just needs to be satisfied with what she gets from the government aid programs–make the best of things as they are, and just tighten her belt and not have cable TV or a car or music or books or magazines, etc. She needs to just count her blessings that she has gov’t aid–and leave me alone!!!”
I stopped writing those letters for awhile–and then began writing them again. Then, my father passed away in February of 2000. Shortly after that, she began just throwing my letters away. She told my mother she was doing this, in one of her phone calls to her–and my mom, appalled, asked her to just please send them to her, and she would keep them for me in a file. The aunt complied–and so now, when i write to her–my mother gets the letter–unopened. I finally began writing to my uncle in 2007 and 2008. As a result, my aunt sent another small amount to my mother on Christmas of 2007–“For Melissa’s care.” I was finally able to buy a computer for the first time ever–and pay off a bunch of debts i had, with this money. (I have now stopped writing this aunt. But i now have numerous dreams where i am talking to her. In some of the dreams she is actually nice to me, in others, she is stern and cold, and acts lie she hates my guts.)

During another period where i was doing >alittle< bit better, my parents and two of my sisters, their families and my little brother and his family–all moved to Idaho. I stayed behind, b/c i now had a kind cop helping me–and the support of a bunch of kind ppl in a Christian Singles group that i was into from 1996 thru early 2000. My goal was now to move to Arroyo Grande, where i could be close to all of my Christian singles friends..so i could finally be away from this nightmare street, once and for all!!!!
That didn’t happen–again, b/c i am on Section 8–and you cannot find a decent place on govt aid. Plus–again–if i were to move–and it were to not work out–and i had to move BACK here–my mom could no longer rent to me on Sec. 8, b/c of their new rules that do not allow ppl to rent from family members. In 1997, my sister was going to put this duplex up for sale, and my mother bought them so i wouldn’t face being possibly homeless for the first time in my life.
My street problems continue to be downright unbearable–EXCRUCIATINGLY UNBEARABLE–at times.
I have switched my days and nights around NUMEROUS times during the past 28 years, to cope with this.
I have also learned to sleep with loud white noise, loud music, and loud TV–to cover the noise and the harassments and tauntings from the bullies.
I have to be very careful how and when i leave my house. Now that i have caregivers, it is easier for me, much easier.
Sometimes things aren’t so bad. But–the majority of the time–it is.

Alot of ppl will say things such as: “Oh, you just need to ignore the bullies and they will stop,” or “You need to stop letting them have this power over you.”
With my autism the way it manifests–this is WAY impossible to do–b/c i do not have to filters to be able to do that—-this is truly the kind of stuff that i am NOT able to ignore–especially when it involves men actually BANSHEE-yelling at me, laying VERY loudly on their car horns, playing with their car alarm systems, yelping at me, cat-calling, calling me “Fat, fucking [r word] bitch”,–AND—the UN-GODLY way they will just SCREAM, ROAR, AND SCREECH thru here with their already loud, modified hot rods, motorcycles, SUV’s, pickups, sports cars, sports motorcycles, muscle cars, and etc.
I DO try to find happiness even in spite of the way things are. I am only posting these notes and letters on here to get help and relief–and also to educate people that this is a VERY real and pervasive issue for autistic children and adults!!!! Most people don’t understand that our sensory issues are a real thing that needs to be accomodated. This is where i have to live until i finally find a way to break free from here, and the bullies are continuing to make it a living hell for me, because they refuse to take this seriously. I’m not asking them to stop doing their work. I am asking for the tauntings and harassment so stop.
Some of the things i would like to try are being able to film/document what’s going on on my street and post it to YouTube. I do have one story sort of written about my life–with pictures. (I do now have a YouTube channel….just Google Melissa Fields Autistic, and you will find my blogs and YT channel.)

I just want relief from this pit already—i think that being here for 28 long years is enough, on top of now knowing i could die soon from my kidney disease–that is why i am here.
Thank you for listening and for getting this and for being my friends, those of you who are my friends. God bless you all!!!!
Love,
Melissa
~~~
Postscript to the above post, which was written in February 2010….i still live here, and last June was hospitalized for three weeks, and diagnosed with end stage (stage 5) kidney disease. I have been on kidney hemodialysis ever since June 19th 2018.
The employees of the auto shop still torment me almost daily.
In 2005, i developed lymphedma in both my legs, where fluid builds up in a person’s arms, legs, etc., nd they swell up, and my physical health has kept on declining since then, to where i had to stop driving in 2012, and had to start relying on in home caregivers.
Being autistic, most non-autistics do not get autistic people, our triggers, our challenges, etc., and as a result, most of my caregiver experiences have only added to my agony. In March 2014, i wrote a six part series on several of the abusive caregivers i endured from 2012 through 2014.

I was diagnosed as being autistic at age 4, but did not know this until i was 39, when an actual therapist i was seeing at that time, diagnosed me as having what was called Asperger’s Syndrome, a form of “high-functioning” autism, their words, not mine, because i now know functioning labels are bogus AF.
It was only when i came onto Facebook and met people like Tricia Kenney, Sharon Da Vanport, Heather Farley, Emily Titon, etc., that i got woke. Until then i thought i was the broken one, and that i was all wrong. And i sadly, grew up with that ableistic mindset. Because that was what got drilled into me by my own family, and the schools i went to.
Being autistic is not the problem; the problem lies in when most of society keeps insisting we are behavior problems and puzzle pieces that are to be controlled, scolded, lectured, fixed, solved, and worse yet, cured. Even worse? When Charismatic Christians want to lay hands on me and “pray my autism away.” Ummm, miss me with that trope, thank you.
Autistic people are born autistic, and are going to die being autistic, so please listen and learn from us, instead of fighting us.

To All Who Bully & Torment Me

To all of the people who think it’s a fun sport to deliberately bully, torment, and terrorize a lonely housebound disabled autistic adult in the only home they currently have to live in…..

….by parking in a parking lot near my house with your loud bass thumping and bumping and vibrating the walls of my living room, just so you can get a delightful kick out of hearing my screams of sheer pain and agony….

…..screams so loud i lose my voice and my throat sometimes bleeds, and it makes my whole head hurt, and me feel sick and weakened—–yet you still won’t stop—and i have to keep screaming till you finally relent and turn the bass off…..

….leave from your place of work at the auto shop, with your loud big beige 4X4 truck, and gun the bloody murder out of it, causing me to scream, because someone has told you i’m a monster who deserves this kind of treatment…..

…do any of you realize that these noises actually cause me pain? Maybe it’s not physical pain but it is a painful anguish, and it vibrates my entire head and digestive system when you make these noises….

…..i wish you would, once and for all, sit down and Google the blogs of #actuallyautistic #neurodivergent adults, and start learning about who we are, and what our disability is, and is not.

I am sure that if any of you who so cruelly like to bully and terrorize me every afternoon, had an autistic son or daughter of your own….

……or, say, you have a sister or brother or mother or father who’s autistic…. and they were being bullied just like i am, and they came to you, sobbing brokenheartedly because they are wondering why people are so cruel to them, then maybe you would finally know the real pain you are causing me in my own home when you set out to use your car stereos and car engines to torment and terrorize me.

Being autistic does not equate me as being bad, wrong, broken, missing, less-than, damaged, and deserving of this kind of torture.

Just hoping to get you to understand…..if someone you loved were getting treated this way, would you not move heaven and earth to help get those bullies to lay off?

Hi, my name is Melissa. And i am a real human being. And i have feelings just like you do.

Please stop making what life i have left on this earth so unbearable.

A Story From My Childhood

An #ActuallyAutistic fact about me.

When i was 8 and 9 years old, i had a childhood friend who liked to promise me we were going to go to her house and we were going to play all these exciting games with her dolls and toy trucks, and do slip n slide, etc.

We’d get to her house, and her mom would serve us a delicious lunch of sandwiches, and all different kinds of snack chips, and flavors of soda pop.

Then this friend would suddenly turn mean, and start teasing me and saying she hated me. She would take her dolls and other toys away from me, and tell me “No, i’ve decided i don’t want you to play with my dolls, trucks, etc. after all!”

I would end up hanging out with this friend’s mom. I’d go home upset.

The next day i would go to school, still upset, and the way this childhood friend treated me, would gravely affect my entire day at school. And often the entire week at school. I would meltdown at the least little thing, both in my classroom and on the playground at recess. I couldn’t concentrate on my schoolwork, do any of my schoolwork, and i would even wet myself.

As an autistic adult, guess what? I am still gravely affected by people like that childhood friend. No, i don’t wet myself anymore, but when people won’t listen, let me talk, and believe me when i say i can or can’t do something, or they are harsh and insensitive towards me, and say things that are harsh and insensitive, then not let me defend myself, i still get upset, and stay upset for sometimes days—-i cannot sleep, or walk as well, nor can i even hold a decent conversation. I still meltdown at the tiniest things. I now get bad sick stomach spells over this.

It really does matter that neurotypical people really listen and learn about us autistic people, because to not learn, and then get impatient when we don’t or can’t do things, or life, the NT way, hurts us more than you can know. To reject us hurts us more than you can know.

Because an autistic person’s brain is wired neurodivergently, instead of neurotypically. We see, smell, taste, hear, and touch things much more deeply than a neurotypical person.

A person’s words can literally mean life or death to an already marginalized and misunderstood person. When you take the time to read and watch autistic people’s blogs and videos, and learn about us, and then befriend us, and really get to know us and accept us, not just “tolerate” us, it makes a real positive difference to us.

A Late Night Poem, Autistic Part Two

Autistic
Please don’t use it as a cuss word. It is a valid disability, it is a part of me, and i cannot take it off like one can take off clothing.

Autistic
It is not the plague. It is not a virus. It is not a disease. It is not contagious.

Autistic
I need to have my TV and music on at all times because a completely silent house upsets me just as much as the annoying mega bass and hot rodding noises do, and because i love to listen to my music, and have my TV on, talking to me.

Autistic
No, it is not my excuse, nor do i use it as my shield, it is the reason why i hyper focus, hyper empathize, and experience each and every aspect of life at a deeper level than a neurotypical person does.

Autistic
Is the reason why there are so many things i have trouble doing or just cannot do. Please believe me when i say i can’t do something. Because i really cannot do that something.

Autistic
It is important that you listen and read between the lines when you listen to me. Let me talk. Let me feel what i feel. Don’t shame or belittle me. Don’t silence me. Don’t make me afraid to talk. Please don’t talk over me, interrupt me, and assume i meant something else other than what i am trying to tell you that i mean.

Autistic
Please don’t talk about or bring up things you know will trigger and upset me, like past mistakes, past blunders, past fuck ups.

Autistic
When i say something happened, it did happen. Please believe me.

Autistic
I am not a behavior problem, i am not demanding, i am not broken, damaged or faulty.

Autistic
Please don’t tell me to just walk around with headphones on all day. I should not have to adjust, or adapt, to my environment, especially in my own home, and especially when the noises of the bass and loud hot rodding are being done deliberately to bully and torment me.

Autistic
Please don’t tone police me and tell me not to cuss, talk too loud, or use quiet hands. I need to be me. I grew up not being able to be me, and i can’t do that anymore

Autistic
I am not violent. I am most likely to hit myself or a wall or slam a door, than hurt anyone else during a meltdown.

Autistic
Please be happy for the achievements i make.

Autistic
Please, learn to understand and accept me and don’t give up on me and throw me away. It will just make me want to give up and never try at all anymore.

Being Alone At Christmas-My Story In Posts

I am so not okay. A deep Christmas depression has set in, bc i am all alone today.
—-
I hate it that i am all alone.
—-
I hate it that none of my siblings even bother to send a measley Christmas card to me, let alone call me.
—-
I can;t take the loneliness much longer…..
—-
#BeingAloneAtChristmas
—-
My sister and her family, one of the two with whom i am estranged from, moved to Idaho in March 1991.
My mom and dad moved to Idaho in April of 1996.
My other ex-nice sister moved in with my parents with her daughter, one month later.
My baby brother and his family moved to Idaho in 1996 as well.
My nice sister moved to Arizona in 2001.
My eldest brother moved to Idaho in 2004.
His daughter, my niece, moved in with them a few years later.
I have one brother left here in Santa Maria. His two grown boys live in Fresno and Bakersfield.
None of them except my mom and sister in Arizona, acknowledged me this year, and they never do.
my other ex nice sister used to email and talk to me all of the time too.
But now, even she has turned her back on me, bc she says her health is now so bad, my meltdowns would kill her.
I so wish with all my heart, another nice family would adopt me.
I cannot stand the loneliness i feel today on this Christmas Eve.
—-
If you are reading this and you know of someone in your neighborhood who is a shut in and who will most likely be alone at Christmas, please go visit them, bring them dinner cookies, or just you so that they will have an actual person to talk to.
—-
To all of you in my family who are afraid to interact with me because i may just have one of my meltdowns,  please know, for one, my meltdowns don’t just come out of the blue. There is always a reason for my meltdowns.
—-
But none of you seem to even want to get to know your sibling/aunt. To find out that you don’t have to be afraid of me. That my #Autism is not so scary. To find out my being Autistic is not a bad thing. To find out that i am not wrong, a burden or damaged goods. I am just #Disabled.
—-
That is why i told my story online. So all of my family would read, understand, and their hearts would soften. I also told my story so that others would understand that we Autistics have real stories to tell. That we are not the “behavior” problem you may think we are.
—-
I invite you to Google Neurodiversity and #ActuallyAutistic. Google a blog called Autistic Hoya. You will get to know why i was the way i was as a child and teenager growing up in the Fields family. Maybe you’ll discover the sister/aunt you felt you never had in the process.
—-
I want to add this to my blog….
—-
I don’t always know the right words to say to a friend who is hurting, but by God, if i ever say anything that makes any of you feel invalidated, or like i am silencing you or being dismissive of you, PLEASE call me on it!
—-
I know the holiday season can be, and is rough, even unbearably rough for many people, and it is for myself. I just want to let you all know, i hold you in my space. I witness your pain, and your hurt, especially if you are all alone, and maybe your family has shut you out. I witness you, and i validate that pain and hurt—-it’s not you, believe me, because you matter to those of us who are your true friends—-it is on those who made you hurt, those who made you feel excluded, dismissed, silenced and unheard.
—-
I love you, my friends. I really do, and if you are hurting tonight, i am offering you hugs.   
—-
Merry Christmas, Happy Hanukkah, Happy Kwanzaa, Happy Holidays!   

I Am Autistic—Say The Word

Flowers-2

One afternoon in April, i was upset, so i wrote a series of Vaguebook posts, and because i write when i am upset……and i mainly write to educate the general public about what it is like to be a middle aged adult who is Autistic so people will understand, get us, and accept us, i want to compile my vaguebooks all into a blog post.

What is it that helps flowers to blossom and bloom to all their glory? It is not yelling at them to grow already, and standing over them and forcing their peddles to unfold when they aren’t ready to unfold. And to be callous and cold with them. They need patience, actual warmth and affection, to be slowly and lovingly cultivated, and they need water, sunshine, and food.

For me, it is not being harsh and critical of me. And cold and callous. For me, i grow when i know i am truly accepted and when i am okay to be me. When it is okay for me to say “I am Autistic.” When i know my feelings, both happy and sad, and the ones that are painful too, are truly validated.

I don’t write to be mean and covert. I write whenever i cannot verbally say how i am feeling.
Post One.
“Trigger warning for the word stupid and the R word—and for also graphic depictions of child abuse
There is a valid reason why i have a chip on my shoulder as an adult.
It comes from growing up being told and made to feel
like i was all wrong all the time, every day, 24/7
that i didn’t have a right to my opinions
or to to say what i felt that how i felt, and i,
was just too weird
everything i ever did or said was
wrong, stupid and not good enough
being called the R word all the fucking time,
not just by the schoolkids but even by my own siblings
being silenced, muzzled, and having my feelings,
and me, always dismissed, invalidated and erased
being treated like my autism was/is a behavior
or that i use my autism as a shield, crutch, etc.
being told wrongly so that i was just a
lazy, spoiled, and selfish rotten brat,
when so many things
were and still are difficult for me to do
being told also wrongly so that
i never appreciated what people did for me,
when i did, but just did not know
how the fuck to show it
knowing my own father actually hated my guts
for the way i was even though i could not help the way i was
because i was BORN Autistic
imagine if you will what it is like
to go to school and have no safe zone there
where you can be you and
you cannot get away from all of the scary sensory stimuli
and you cannot be you or get away from
all of the unwanted scary sensory stimuli at home either
because your you is too wrong, too weird, to matter
you are expected to, forced to act a certain way,
and if you don’t, you are yelled down, scolded, and BELITTLED
all you can do is just go to your room all the time
because that is at least a little bit of a safe zone for you
always being talked over and interrupted
when i try to talk and express myself
yes, they did that too
and then they would interrupt
to finish all of my sentences for me,
not knowing what i was REALLY going to say
close spaces, having to be forced to endure being kissed,
or having to stand too close to others in a line
being beaten on my legs and buttocks growing up
beaten so hard it left welts that would raise up and bleed
having my hair and ears pulled so hard my head hurt
loud men yelling especially when angry
and my music–when i can’t even listen to my rock music
because the family music is country,
so i have to listen to that or i get in trouble for that too
a fear so bad i used to have to always
memorize the station my dad had the car and family radio on,
so he wouldn’t find out i was listening to the rock stations
my dad, brothers and sisters always pissed,
always irritated with me
i have bad flashbacks to all of this all the time
so that today, when anyone can present to me as angry,

even if  they aren’t, i am hypersensitive to it

i still take what people say and do wrong all the time
because of all of the hurts of my childhood
because i think i am being chastised and muzzled yet again
I have Complex PTSD thanks to what i went through
then losing my independence again,
losing my ability to drive and do for myself
after having my independence for 25 years,
where, 22 of them i was able to drive
has brought me back to how i felt as a child,
and that is how i feel now,
like i am that child again who had no rights
and now i feel as if don’t have any rights again anymore…… “
Post Two
“I am not abnormal.
I am Autistic.
There is nothing wrong with me
or the word Autistic.
I say the word.
People need to say the word.
AUTISTIC.
PLEASE ACCEPT ME. “
Post Three
“My special interests are not obsessions or addictions. They are my coping mechanisms and there is nothing wrong with me having these special interests.”
Post Four
“I write and tell my story so that people will understand.”
Post Five
“When i yell because of the noise outside it is because that noise is actually causing me pain. People yell when in pain. People yell and cry when they hurt.”
Post Six
“When i say that i cannot do something it is because i truly do not have the ability or the spoons to be able to do that thing.
It is not that i don’t want to do whatever, it is that some things i lack the ability to do. Sometimes i have the spoons to do some things. Other things i never have the spoons for.
Please understand and accept that.”
In closing, my Autism is not used as a shield, crutch, nor do i mean to use it as a means to throw it in people’s faces. I often do not have the words available to me to be able to articulate what it is that i want to say, especially when i can sense i am not being heard.
So, out comes the word Autistic. And i cannot hide my Autism, or take it on and off like it’s a coat.
I don’t write to bad mouth people.
I do not write about my family to bad mouth them either.
I write because the family abuse happened. Because i want to let others know they aren’t alone, and how to spot the signs of abuse, and i want my family to finally read what i write and say “OMG, i did do those awful things!”
Because i have no family to turn to, and my mom and one nice sister are both financially unable to help me more than they can, i am in a vulnerable situation where if i do not have my caregiver to help me, i am literally left to fend for myself—-and i have been left without caregivers in the past—–and that was so terrifying for me that it has caused me to become even more hypervigilant about making sure the people i love and who matter to me, always understand and get me—-so they won’t throw me away too,like so many, many others have done.
I live in constant fear of this, and when i have any disagreement with my friends, i instantly go into a panic mode so severe, thinking they’re angry, and hate me, and it often makes things even worse.
I wrote this into a blog because sometimes i can put things better into words by talking, but other times, like now, i can do it better by writing it. That has nothing to do with anyone but my own spoon level at the moment. I have not had very many spoons ever since the election, to be honest. Yes, i am extremely scared about the current state of our government now, too.