ABA Trauma Interview

Autistic Inclusive Meets

AIM were recently contacted on our Facebook page by an autistic man named Jonathan Michael Walton. Jonathan, 30, from Bradford, UK was subjected to ABA and has now been referred by his GP for psychotherapy due to the PTSD it caused him.

He kindly agreed to be interviewed by Emma Dalmayne, and we are thankful to him for giving us this chance to show the damage compliance-based therapies do in the long term.

Emma Dalmayne: How old were you started ABA and when you finished it?

Jonathan Michael Walton: I was 8 when I started and 15 when I finished.

ED: How was it practised? For example, clickers, motivators, planned ignoring, rewards and punishments?

JMW: Using points and reward charts on my behaviour and planned punishments for trivial matters.

ED: What was it your parents were trying to make you do or achieve?

JMW:…

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Ten Phrases Used to Invalidate Autistic People

In the Loop About Neurodiversity

These sayings and others are constantly used to invalidate autistic people.

One of the most frustrating things for autistic people is to feel invalidated and feel that their experiences don’t matter. To invalidate an autistic person is to invalidate their identity, and it really hurts them. Some of these phrases are not all used with malicious intent and can unintentionally invalidate autistic people, but they are just as invalidating as those used intentionally. It is important to know what these sayings are in the first place, as some of these are commonly used and many people do not realize when they are saying something that is invalidating autistic people. So, here are ten phrases used to invalidate autistic people.

  • “Everyone’s a little bit autistic!”/”We are all on the spectrum somewhere!”

It is true that everyone is different in some way, but this does not mean that everyone is a “little…

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My Latest Medical Hell In The ER

TW/CW: Discussion of medical symptoms, bodily fluids, and ableism, violation of bodily autonomy, disrespect of my humanity.
In my lat blog post, i wrote about a recent scare i had when too much fluid was once again taken off of me at dialysis this past Tuesday. I got so afraid, because i could not eat or drink a thing, a huge painful gas bubble was in my upper abdominal cavity, and my urine was a dark brown color. I was also having slight dizzy spells.
I had my caregiver, Sam, take me to the hospital, to the ER, that evening.
This blog is about the ableism that occured, mainly from the first doctor and the two ER nurses i dealt with while there.
For one, i was greeted with a triage nurse who was not rude, but who wasn’t that friendly either. He took my history, my symptoms, and vitals, and let me know what all my vitals were, except for when he told me my temperature, he said it in metric form, and would not let me know what my temp was in Fahrenheit form. Then a registration person (female-presenting) took my info as well. They were friendly.
When Sam and i went back to the ER area, that was one hot mix of both bad and good. We waited like 35 minutes to be taken back to the ER room.
My first nurse was nice enough. Until later. (More on her in a bit!) But firstly i was put in an ER cubicle that was shared, not one of their many private ER rooms. And there was a woman in the first bed, along with a male presenting person who was standing and holding a 3 year old boy, who was running right into my area, and then crying so loud i could not hear my nurse or doctor. Okay, disclaimer, i love children, but the loud noise of the little boy’s crying was triggering me, as i was already a ball of anxiety and nerves, and i had to leave and get placed into another non-private ER room with two beds.
Okay, while i was still in the first ER room with the crying boy, a doctor, Dr. J., came right in, and upon haring my symptoms, he, without first asking me, reached over, grabbed my t-shirt, pulled it up, and began feeling my entire abdominal area. Then an unneccesary argument ensued when they wanted to put a catheter in me to check my urine, instead of the toilet hat they use for us fat folks that cannot do a conventional urine sample (pee in the cup). I refused the catheter, and they consented to the toilet hat.
I had Sam wheel me into the restroom, but we were unable to get the hospital wheelchair in to the restroom, so, the nurse proceeded, without warning, to lift up my legs, roughly, again, without first asking me, to move the wheelchair’s leg rests off to the side, so i could get out ad walk into the restroom. I reacted instantly by snapping at her to ask me first before just touching me. And let her know she was hurting my legs. I let her know i had lymphedema, and that her roughness could cause leg ulcers to break out on my calves where she was lifting them up.
She was not that friendly either. And she talked too loudly, so that everyone else in that whole area could hear what was going on. Isn’t that a violation of the new HIPPAH laws?
The following are copied and pasted from an actual survey i got in my email this morning from that hospital. Re-edited for clarity.
I dealt with a total of two ER nurses that night…St., and Ch.
Both nurses I dealt with were mostly condescending, and when i explained I am autistic and have certain ways I need for things to be, sensory issues, etc., (my accomodations for my disability of autism) they were both dismissive, and instead were quick to defend the rude nurses I had in a previous stay, over my valid complaints. I felt unheard, and talked down to.
In addition, when my first nurse, St, took me to the restroom, she handled my legs roughly, and without first asking me when helping me to get from the wheelchair to the bathroom.
ALL of ANY hospital’s staff needs to ask us first whenever they need to touch and move us. I believe in treating patients with utter respect and courtesy, and this means respecting our bodily autonomy. ALWAYS, ALWAYS, ALWAYS, ASK FIRST! And if we go to tell you things, do not dismiss us, and defend your staff over the feedback we give on them. That too, is dismissive.
I saw two doctors while there in their ER. The first one Dr. J, came right up and pulled the front of my t-shirt up without first asking me, to check (feel around) my abdominal area. This was invasive and a disrespect of me. While I realize he needed to check my abdominal area, he still needed to ask me first. Again, the entire ER staff need to learn to ask patients first, before you touch us. It shows respect and care for us as the human beings we are.
My second doctor, Dr. Sh, showed respect and was kind to me.

The lady dressed in a bright red pantsuit who came to draw blood for my labs was friendly and respectful.

The male-presenting individual who came to do an abdominal ultrasound, was also friendly and cool, and showed me respect.

However, I was only given partial information about my possible condition, and no one has since bothered to follow up with me from your hospital as to the FULL RESULTS of all blood tests, or the ultrasound I had while in your ER.
I was quite impressed with the courtesy and respect that both ultrasound person and person who came to draw my blood showed to me. They even asked me if i wanted the overhead lights kept off, to which i said yes, because bright overhead floursecent lights bother me greatly.

However, none of them would barely talk to, or acknowledge my caregiver and friend, Sam.

The reason I marked very poor for privacy is that I was put in two non-private ER rooms.

I was never visited by a hospital leader.
In addition, both of my nurses, which again, were St and Ch, never bothered to give me the TV Remote/Call Button, until I finally asked for it, and was given it only after I had asked for it, a full two hours after I came to the ER.

I was never offered water to drink, or a blanket, or asked if I wanted the room temperature lowered or raised. I was cold the entire time I was there.
In addition, when nurse Ch came in with Dr. Sh and a second Doctor, nurse Ch reached over and shut my entire TV OFF—–AGAIN, WITHOUT ASKING ME FIRST IF IT WAS OKAY IF THEY COULD HAVE THE TV MUTED so that we could talk. I would have been more than happy to mute the TV myself. It would have shown respect again, for my autonomy and me, as a human being whose feelings mattered to them.
Considering the overall manner I was treated by staff when i visited your ER on April 3, 2019, no, I would not recommend this ER to anyone.

I felt most unwelcomed there, like most of your ER staff that was on that night, just did not care.
—-
In closing, i am writing this, because my local hospital needs to train their staff to do all they can to make each and every visitor feel welcome in that hospital campus. The entire medical field needs to change and realize we who come seek medical help, are human, our bodies our ours, and they need to listen, hear us, and be patient and kind to us. Don’t manhandle our mobility equipment, don’t talk loudly so the whole facility can hear, and give us the choice of whether we are okay with being in a non-private ER room or not. I will wait for the private ER room, because our local hospital has a majority of their ER rooms as private.
It was strongly recommended that i be admitted that evening. But i refused, because of how i was being treated in their ER that evening.
P. S.~~~As for my condition, i recovered the next day. I could once again eat and drink, and my urine has been clear since then too. So it was dialysis related, them taking too much fluid off of me, that caused me to get sick.

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

Autism Speaks’ awareness campaigns harm autistic people

Light It Up True

Trigger warning: this post contains images of eugenics posters from the early 20th century, juxtaposed with Autism Speaks’ 21st Century messaging.

I anticipate this may ruffle a few feathers. I’m ok with that but before you sharpen your pitch fork I recommend that you stop, breathe and re-read. Give it a try, it can’t hurt.

Autism Speaks

Image description: Picture is of four “awareness campaigns” accompanied by the text, “This is what ‘awareness’ campaigns look like”. Clockwise, from the top left:

  • Black and white poster from 1924 titled ‘Four types of mental deficiency’. Four black and white pictures of people are on the poster, labeled ‘Idiocy’, ‘Mongolian Imbecility’, ‘Imbecility’ and ‘Moron (high grade feeble minded)’. The caption at the bottom of the poster says:

The feeble-minded can be divided into three groups. (1) Idiots with a mental age less than three years; (2) Imbeciles with a mental age between three and seven years…

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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.